Friday, 26 December 2014

72weeks (17months) post first op and 42weeks (10months) post 2nd op!-

It's boxing day, that means it was Christmas yesterday! My favourite time of year, everyone seems so much more jollier and happier at Christmas, it's nice to see:)
With Christmas in mind I haven't had time to post i feel bad for that, things have been happening and I will update you -
I had physio on the 16th December  it went good and it wasn't what I was expecting really, he gave me 3 excerses to do to help my shouldetblade as apparently the left of sticks out abit, it's to make it flatter. He also said my muscles around it are very weak and stiff so he was massaging them to 'wake' and loosen  them up at abit. It did feel odd but actually nice!!
I also had a letter from the hospital ( explaining what happened in clinic when I saw mr mehta last time) and there was a paragraph that took me by surprise really, he mentioned about the radiology  department having a look at my X-rays and checking for pseudarthrosis andi I was suspected they should do a SPECT CT scan. Well Monday we had a call from my surgeons secretary and guess what? They want to do the scan its looking like it will be done next year and they are also are planning on doing my intercostal block after the scan so I could be waiting a long long time yet. I'm not sure what will happen after the scan or how we will get the result or anything like I said its take me by surprise!
Jemma's operation is fast approaching its in 10days! We go to see mr Mehta next week to go through everything. I'm more nervous about her operation than I was my own!
I'll update you more next week:)
Kirsty xxxxx

Sunday, 14 December 2014

70 weeks(16months) post 1st operation and 40 weeks (9months) post the 2nd operation-

Things here have been very quiet with me the last 2 weeks as nothing has really happened. I had laser therapy on my back on the 4th December, it does seem to help, I mean I also do feel less stiff when I have it, it apparently was my last course of treatment so I have to wait to see my pain management doctor again too see what else he can do, I have the appointment to see him, but it's no untill late march next year, so I am stuck with nothing untill then, oh apart from a TENs unit th pm nurse gave me to try, but it is not doing anything apart from heating my back up ( in and out!!) I can't feel any little eletrical pulses PE everyone else can, there seems to be nothing, it's on the highest setting as well!!

This week started off with me having an appointment with my GP, it was to check how I'm getting on with the anti depressants and for my blood test results. Well there has been a big sickness bug going around my area for a while and she caught it, as well as 1 other doctor and 2 nurses, meaning she phone in sick, no appointment for me yippie!! Lol. 
On Thursday Jem had her pre op which was eventful, everything was going well untill they came to do a blood test and then bam! Jemmas veins decide they don't want to play. It took3 hours 3 nurses, 1 stressed out doctor and the anethatist do find a vein, they all had preveiously taken it in turns separately but it was none successful, poor Jem had7/8 needles poked in her in total, so she wasn't Impressed. Another things we found out was Jemma is having her operation on the 6th of Jen and not the 7thmeaning it has been brought forward a day. Se is being admitted on the 5th though to finsh off the tests etc.

Tomorrow I am seeing my CPN ( oh the fun!) I am Hoping she is still pleased with my progress as I am trying, but we shall see! I am also starting physio on Tuesday (16th) at ROH, we had a phone call Friday asking ifi could make that time and date, let's hope this will help..
Kirsty xxxx

Sunday, 30 November 2014

68weeks(16months) post 1st op and 38weeks(9months) post 2nd op-

Wow well I cannot believe around a year ago I started writing this blog! I did not expect the reaction I have gotten off it all , to be honest, I started this blog of too have a place where I could express my feelings and thoughts about my back and life. is so nice to have people that have actually benefitted from me writing about my journey! so thankyou to you all:)
So to kick off last week was a little bit of a shocker, my sister had a phone call from the hospital to say her operation on her Scheuermanns will be in early January 2015 (7th or the 8th) she is terrified but her back is hurting her more and more so she knows its going to be worth it. She has another pre-op date, which is on the 10th of December, she is still needle phobic so we will see how it all plan outs haha!

well to start this week off I saw my cpn, she is impressed so far with what im doing and I have to carry on doing what im doing, im still waiting for my appointment to see a dietician but she is now sending a referral for talking therapy (CBT!) I don't really like talking to people especially people I don't know so I really don't know how this is going to work, I see her again in like 2 weeks, she is trying to stop it from getting any worse. but she can only do so much on her own.
on Tuesday I saw my GP again, I think she likes to keep a close on everything. My ECG I had last week came back good which was good to hear! on the down side she weighed me and ive lost more weight! im now 42kg so ive lost around 1kg/1.5kg in 2/3weeks! she didn't seem very happy at all so she is chasing up my referral for the dietician. My cpn has also requested medication AGAIN! so even though my gp didn't really want to, ive now started citalopram 10mg, I have to take it at night so the side effects are less, my GP or anyone doesn't know how its going to react to my body, well so far I feel so sick, have a head ache and im constantly tired! I am also having to have to have my blood test retaken (perfect!) just so she can keep an eye on it I guess. Ugh I hate blood tests.

here os a photo of my scars I took the other day, its looking so nice and faint!, I mean you can barely see it, which is a shame for me as I love it! it shows what I've been through and how far I've come. this past few days though ive been having bad pain in my lower back, its feels like a lot of pressure is there, im hoping it will go on its own.
Kirsty:) xxxxx

Friday, 14 November 2014

66weeks (15months) post 1st op and 36weeks (8months) post 2nd op-

Well I know this hasn't got a lot to do with my back but in ways in kind of does... I went to see my CPN last Monday and she said I'm doing ok with my food diary and at least I'm trying with it, she wants me to carry on doing my food diary but now adding how I feel etc and if it's a bad day (not a lot of food) she has given me too other sheets of paper to fill in, i find it really hard to express my emotions, even writing them down, some parts of me thinks if people know how I feel they will get into all my business which is something I do not want. I am also allowed to weight myself only once every 3 weeks mind ou but I guess that's ok, I have been given some stuff to read on anorexia
And anxiety so I have Ben having a look through them, she said all the stuff I'm doing at hope (food diary, thoughts and everything) are so she can get more of an understanding so she can reffer me on to secondary care.
Also this week I have seen my GP, I seem to be seeing her every few weeks. I have been asking her about anti depressants again as my anxiety is quite bad but she is adamant that I am not taking them, she keeps saying that there will be too many side affects with my weight and build which is frustrating. She even came out with that they have in the past gave children antidepressants so I just don't get why I cannot have any then? My CPN really wants me to take them as she feels I'll benefit from them a lot.

Nothing really has happened with my back over the last couple ot weeks, I havent been up to much but my shoulder blade is hurting a lot still:/ i really honestly don't know what to do. I just hope physio and everything would hurry up so I can see if they help! I also really hope the next time I see mr mehta I came rise my horse and everything again, I am really missing it ALOT, my horse isn't young now and he seems to be aging very quickly, he has athritis in all 4 legs which isn't good at at all!
Kirsty xxxx

Sunday, 2 November 2014

64 weeks(15months) post 1st op and 34weeks post2nd op-

well where do I begin? I saw Mr Mehta on Monday so I explained to him about everything that's going on and the pains I was getting the outcome of it all really is a mixture. I am having this injection thing in where my ribcage is because of pain, I am not looking forward to it one bit I hate needles, I'm super needle phobic so I really don't know how this will plan out, I was hoping there was something else that could have been done like the registrar said the last time we went but there isn't. Apparently rib resection is mainly used for people with scoliosis and the part that us deformed is one of the main ribs. I honestly don't know if I'm upset about this, of course I am really, it's lumpy and vile, I'm 19 and I cannot even wear a bra properly because of he pain and awkwardness of it., my ribcage sticks out a lot to me and it bothers me, ok I know I wouldn't have been 100% perfect but I wasn't expecting this before my operation at all. I hate kyphoisis a lot of the times, especially times like this. I don't like to be negative, I really don't but to Me it's quite embarrassing, not being able to wear a bra for more than an hour with it hurting and bothering a lot, even then I can't have anything with wire or anything like that, oh no. I am so thankful for my fusion and I love my new back it just seems to be only me that's having some type of problems.
I am also starting physio again, but this time I think it's at ROH, I am still having aweird psin where max knocked me over so I hope that will help. Other than that mr m is getting my ct scan re check to see if there is a small possibility of them missing anything,

I also saw my GP on Tuesday for a check up. Well I didnt have good news from that either, I weight 45kg 2/3 weeks ago and I managed to loose 2 kg meaning I'm 43kg now, so I am going to see a dietition. My GP is also wanting to discuss weight gain drinks/ supplement stuff. The thought of putting weight on is scary, I don't want to. I mean I'm happy aren't I? I don't want to be over weight, or chubby:( I once had fat rolls, I never ever want them again! My rods and screws are starting to become prominant, we found that out when we saw mr Mehta, even he is now saying putting on weight may help. Like I've stated before I dont like letting everyone down or anything but it's really hard and I wish some people would see it'
I am seeing my CPN tomorrow, so there will be a update on that after its happened.
Kirsty xxxxxx

Friday, 24 October 2014

63weeks(14months) post 1st op and 33weeks(7months) post the 2nd-

Last Monday I saw my CPN for the very first time, I was so nervous, I didn't want her to think what I was saying was stupid, the appointment lasted well over an hour so she could get an idea of why I was there,I know have to write a food diary untill I see her next and write a list of foods I will and won't eat, that's a challenge in its self as there isn't many foods I can think of that I can't actually say I like haha! I also had to go see a gp Wednesday, the one I saw the,at time had no appointments, and the CPN wanted me to go on some anti depressents as they could help, but this GP wouldn't give me anything, I couldn't eve have pain relief for my back that has been hurting a bit lately! Apparently they would all knock me about to much and she wasn't happy giving them to me with my weight, she even had a fit when I told her I was taking 2paracetamol 4 times a day for my back, apparently this is an overdose? I thankfully manage to talk myself out of getting admitted to hospital for a check up because of it!
This week has been quite boring really, I haven't done much other than try and sort jimbo out, it's still very hard and I get tired. The CPN rang on Tuesday to check if I was ok, which I thought was lovely! It was a suprize when I answered the phone and she was talking .

 I am taking paracetamol daily now for the pain near my hooks and my pain in my lower back but it doesn't do much if at all anything. I see mr Mehta again next Monday so we will hopefully get to find out what's going on with my back, I hope nothing bad is wrong. I also see my GP Tuesday, so f all goes to plan I can try and get something to help, hopefully of course!

In other news, jimbo isn't very well, he has now got athritis in all of his 4 legs, the back ones aren't as bad as his front but it is still there, we have to keep him as mobile as possible as it would help. What is worrying the most is because jimbo is drinking tons and  tons of water which isn't like him at all, jim hardly drinks anything in his Stanley but he has been drinking loads. He also isn't eating his tea, he will eat hay and grass but that's it so the vet was to test his bold to check his liver and kidney are ok. I really hope they are, but if it is apparently in the early stages there Is medications
 That can try and help it but there is no gaurentee it will work. :(
Kirsty sxxxxxx

Saturday, 11 October 2014

61weeks(14months) post 1st op and 31weeks(7months) post second op-

This week started with my twin having her last pre op assessment ready for her operation, which was spinal cord monitoring, it wa weird to see Jems perspective of the test, I found it funny but odd and laughed the whole was through it but Jem on the other hand said it as vile and painful! Anyway, it was done within 15minutes. I had my laser treatment on Thursday's, it was perfect timing really as my thigh was giving me some trouble, not pain, but it was very sensitive, the laser is actually helping that part of my body, I'm not too sure on anything else, it's weird, it's kind of like i don't really remember what it felt like before.
I went really faint again on Wednesday, I'm trying to eat more and I'm eating more than I did but it is still happening? Apparently even with the iron and vitamin D I'm still looking very pale:'( , if this keeps going on I'll have to back to my GP as I don't reckon it's normal and I did ask him if there was anything I could take for my lower back pain but he just stated he would sort that when everything else is sorted!
I managed to fall down the stairs yesterday landing on my back! I should really have clumsy wrote across my fore head, better still, i will invest in some bubble wrap. I had the same burning pain going up my back like I did when max knocked me over, and I'm hurting and aching this morning but silly me still decided to go for a walk out on my pony, everything was going great, untill the way back to the yard that is, this kid came bombing past on a scooter, those ones that were cool when you was 7 well he was like 14 (not kidding!) well jimbo spooked and went cantering sidewards bucking down this very busy small lane we was riding on! The kid didn't even have the politeness to say sorry he just carried on bombing past Jem nd my friend gabby. I had to get off jim as he was prettified, Gabby kindly swapped horses with me so I rode her horse back. my back is super sore now from that, so I'll stock up on the paracetamol tonight! Since max knocked me over I've lost a lot of my confidence with the horses, I now have this panicking feeling whenever I go in the field to get them, I just don't want to snap my rods, I think it's also because I was comfortable in cantering, galloping jumping and everything before my operation and I haven't managed to get to it yet,I'm still just walking, which ok I'd rather be able to walk on my ponies than do nothing!!!
Kirsty xxxxx

Monday, 29 September 2014

60weeks(14months) post 1st op and 30weeks(7months) post 2nd op-

Well I went to my follow up appointment with my GP and he thinks after seeing me and my blood test results (Although they are not too bad at the moment!) That i may have have Anorexia! How I can have Anorexia? I don't know as im not thin. I have weight on me but apparently not enough, being class as anorexic brings a whole load of new things, appontments, seeing more people, not to mention what my friends and other people will think, there is alot of bad stigma about anorexia, I think he suspected anorexia before I had my blood test as he kept asking about my eating habits and all.  My GP also says this is why im always cold and thinks it has a part to why my hands go a blue/purple colour all the time and why im tired.
I have been given some vitamin D tablet things to take, my Gp was constantly mentioning Anorexia can lead to osteoporosis and He is also stating this maybe the reason why im taking so long to recover from my operations, as im apparently not putting enough in my body to help my back fuse and for me to do normal day to day things.  Its kind of frustrating really, I want to be normal! Is it only me thinks im ok? I like my weight, I love my back, I hate that things are getting in my way, I want to lead a normal life, is that to hard to ask?
Anyway In order to be 'Healthy' I have to gain weight! to 50kg, in all honestly I don't want to, im happy and fine the way I am. When I see the CPN about my anxiety I have also have mention  all this as she may to a further assessment. I don't want to let anyone down by not gaining weight or anything if it going to help but I'm scared to,I don't want to get fat. :(

this was just a quick post really as I did say I would update you, ill post more as this week goes by!
Kirsty! :) xxxx

Tuesday, 23 September 2014

59weeks(13months) post op and 29weeks(6months) post 2nd op-

I haven't really had time to post anything in the past 2 weeks but here is what has happened. I saw my GP not last Thursday but the Thursday before as I kept going really faint, dizzy and just didn't feel right. Well after him taking my blood pressure, pulse and that, He said my blood pressure is really low and I was looking really pale and 'fragile' also kept mentioning my weight when he weighed me, Im now 42kg and I was around 49kg just before my second operation. Apart from being told I need to gain weight, he asked for a blood test to check if everything was ok, I asked f there was anything I could take for my lower back pain as it is bothering me but he said he would discuss it more when I see him next, I also have to now go see a CPN as my anxiety is getting really bad and out of control, its just everyday over the stupidest things so I have an appointment with her in early October..
Last Monday I had the blood test it was so painful and very hard to find a vein, I ended up being prodded in both my arms with the needle a good few times before anything decided to come out! I have gained a lovely bruise on both arms from that now haha! I had the results back and im apparently anaemic so im on iron tablets to help, I have to go for a follow up Appointment on Thursday not sure why though :)
Ive also been signed off doing anything for another 8weeks, I would love to be able to get on with my life without struggling like I am, I never thought I would struggle this much. Most of my friends are back to work in 3 months but here I am 2 operations, 13months on still finding things hard. I wish I could be like everyone else and just be able to just do things  and just be able to walk with out being tired, I guess life isn't just on my side right now:/
Ive been having trouble with my feet going dead and fuzzy, its happening quite a bit now, its weird I will be fine one minute and then the next they will just go. I had hoped it was just a phase and it would pass but I don't think it will.
As well as my ribcage and the area I was knocked over on, I also have noticed I am having like electric shock type feelings in my right lower back, near my hip it will come and go but its worse when I do things like attempt to muck out. im not sure why I am getting that feeling but it spreads to the side of my hips.
Well ill update you on Thursday when I see my GP!
Kirsty:) xxxxx

Wednesday, 10 September 2014

57weeks(13months)post 1st op and 27weeks(6months post op)-

Last week I turned 13months post op(56weeks), I had my CT scan last Monday (we dont know the results yet), the scan actually wasn't too bad it just was the waiting in the waiting room and the bus to get to hospital that hurt a lot. After my scan we went to Birmingham Children's Hospital to see my friend who has her scoliosis Surgery, She was nearly one week post op and was looking great! BCH takes the more complex scoliosis surgeries in which the patients need  PICU after the operation. A lot of patients and me are very lucky really that we only needed HDU after the operation, I mean that was bad  enough for me let alone my family. I cannot begin to think of what parents of kids that need PICU would be like.

We managed to go to Barmouth in wales on Sunday, what lovely weather we had for the trip aswell. it was great to get away for the day really, I even managed to have a walk on the beach. I was tired and sore when we got home but it was all worth the lovely day!
Lately I been feeling really faint and lightheaded, and ive nearly fainted on a few occasion's,  Also I still feel tired when I do things, I take my dog for a walk and I cant even take him far as I just get tired, I am going to see my GP tomorrow to see if she can be any help as to why it keeps happening.
here's some photo's from my trip to barmouth with my family on sunday!
Kirsty xxxx

Friday, 29 August 2014

55 weeks(12months) post op and 25 week (6months) post op!-

Well it has now been 6 months since my second operation! I am getting there I know I am, its just taking its time. I still struggle with some daily tasks like showering and sometimes getting things off the floor but I know with time it will all work out.
I went shopping last week with one of my friends and I did struggle walking around and being on the bus, I didn't actually realise how much pain I was in until I got home, I was in agony. No matter how much pain relief I took helped.
Since my Appointment last week with my surgeon I have now got a date for my CT scan, its next Monday (1st September) I really do hope it comes back clear and I can just continue with my recovery. My back is hurting a lot around where they are doing the CT scan, its go to the point where I am taking 3 or 4 paracetamol at a time, im actually only allowed to take 1 1/2 paracetamol, no matter what I do the pain is not going:(
I had what was suppose to be my last laser treatment yesterday, it went well, I was in pain due to having to go on the bus but it was ok. my back and all still seems the same, I just think it is a matter of just trying to get used to it now, the laser was actually rubbed up and down my back yesterday the other times it was just hovered over it. my back felt very rock like, hard and no feeling. Everyone I see who looks at my scars says now neat they are, which is a bonus:) I have more laser in 6 weeks then again in December, apparently it is not worth just sitting and waiting around for my Pain Management Consultant as I don't think there is much other he can do than tablets.
here's to hoping next week brings good news
Kirsty:) xxxxx

Wednesday, 20 August 2014

54 weeks(12months!)post first op and 24 weeks(5months) post the second op

Well this week has started with a phone call off the hospital to say that my surgeon had received the email the registrar sent him on Friday regarding me being knocked over and he wanted to see me ASAP! so we had to be at the hospital at 2pm that afternoon. I had to have xrays so the wait was ages and ages, Well the results you are probably wondering?...Everything seems okish with the metal and spine apart from the top set of hooks that are not looking right, so he has asked for a CT scan to make sure they haven't broken or moved. he said it could be a xray error but he is not certain it is. I hope it  is but if something is wrong then that adds up to why my back at the top is hurting. If it has moved or broken there is a possibility of more surgery to fix it. not what I or anyone wants really, so lets just hope its nothing! I will have the CT scan in a few weeks and he wants to see me in clinic to discuss the outcome.
My surgeon also said I still have restriction due to my spine not fusing yet..which isn't good. I was hoping when I hit a year post op I could just 'get on' with my life without having to rethink things but I guess its just going to be one of those things in life we have no control of. It has in very few places started to show a little sign of some fusing but not a lot. just have to wait for it to fully fuse and ill be a very happy bunny! while my spine is fusing there is more pressure (or something) on the 'stress points' which are above and below the fusion, so I guess that is why im not allowed to do anything other than walking on my horses and probably why I cant still do things I want.
Because of what happened I had to give Physio a miss on Wednesday, its a shame as I only get it every few weeks. but I have to wait for this CT scan to come through and then the results, Such an exciting life I lead!

Tomorrow I am going shopping with a friend, I haven't seen him since I left college so it shall be nice to have a catch up. Whilst everyone is at college,uni and in job in just sitting here still and I hate it, in some ways I still feel useless but in others I know how far I have came.
here is my xray from Mondays appointment its actually the first time ive seen my spine since I had my left rod trimmed, it looks great now, one year on and my spine is still looking nice and straight!
Kirsty xxxxx

Friday, 15 August 2014

53weeks (12months) post 1st op and 23weeks(5months) post 2nd op- Onwards and Upwards?

Well the end of last week and this week have been full of surprises, not really good ones though, they are really things I could have well done without! On Thursday or Friday I received the letter off my consultant the NRC needed for my interview and college course, wasn't what I hoping for at all, My spine hasn't either fused or fully fused so it means im not aloud to do High impact things or anything that could damage my hardware, spine or fusion. Its a massive blow as he also said he doesn't suggest them testing my fitness ability, so no fitness test! I rang the college see what to do and they have told  me not to bother turning up to the interview and apply this time next year when im more able, fit and I have the all clear. I have to admit I was so upset I read the letter as it was something I was looked forward to and trying to work toward:( I have no idea really what do to with my life now, im thinking of trying my back up plan which is in Health care, maybe a health care assistant or something? Not sure but either way I don't think I have very long to apply if I want to to it as colleges start back in September!
On The other hand On Wednesday, one of my horses knocked me over and I landed flat on my back, as I went to get up I had this nasty burning pain going up my spine and back, it hurt really bad. it still hurts now so my mom rang the hospital and they directed us to the ward where I had my operation, they got a registrar to try and sort it out, I was hoping for an xray or something but no, he got one of my old xrays and said i DONT have anything he can see that can move or break, hmm what about those 2 rods, 22screws and 4 hooks? not forgetting that bone graft! he says i most likely have just bruised it. they have forwarded a note to my consultant and he will say if he thinks i need my appointment bringing forward or if my back still hurts on Monday i have to ring them up and tell them. i hope it isn't nothing seriously or anything at all but surely we cant find out unless they see it.
Oh well i guess we cant do anything until Monday hopefully the pain subsides but i doubt it.
Kirsty xxxxx

Thursday, 7 August 2014

52weeks(12months)post 1st op and 22weeks (5months) post 2nd op- 1 YEAR POST OP!!!

Omg what a year it has been! Yesterday I turned 1 year post op, I cant actually believe that this time yesterday I would have just being coming out of theatre, wow. It has been a very emotional year full of its ups, downs and a few set backs but I really didn't think I would be where I am today this time last year. I am so so so happy that I have had my Spinal fusion surgery. I feel that it is now that I can really relate and help other teens/people through there scoliosis journey, as we all know it isn't the most easiest one. I still remember my highs and lows from my stay in hospital and they will be something that stay with me forever. that very stiff, board like feeling when you are coming around from the operation, and the feeling of not wanting to move incase anything happens, then there is the weird, strange, scary feeling and fear of sitting up on the edge of the bed, it is the littlest things like that you overcome will make you feel like you can achieve anything. All the pain, limitations, worry and fear was truly worth it and I know it will be for everyone else to.  I cant wait to see what the future brings for me now, I can do things I wasn't able to because of this operation. im still struggling a bit and I know im not 100% but I feel better than 1 did before all of this.
I will be posting more about my hospital times in the days to come, but for now, here are some photos from when I was in hospital I found the other day!
Kirsty xxxx

Tuesday, 29 July 2014

51weeks(11moths)post 1st op and 21 weeks post the 2nd op-

Many things happened last week and I didn't have time to post really so here goes-
I have been trying to do some type of exercises  everyday, it is hard, im not as flexible and everything as I was before my operation but what I have noticed is that my lung function seems slightly better, that's got to be good right? I will do this military fitness test for NRC it maybe not turn out good but I am demand to try and have a go, I know the rest of the people have an advantage but I don't care
I started physiotherapy with my new physio Thursday, he isn't as easy going and laid back as my old one, he pushes you a lot, which I don't think is a good thing in moderation, I just don't want to be pushed too far, I see him again next Wednesday, the exact day when I turn 1 YEAR yes you heard it 1 year post op, I cannot believe that in nearly a week it would have been a year since my first operation. I also have Laser treatment next Thursday , my friend Millie is coming with me and my sister so it should be good, I haven't seem Millie in like a year! .:)
Another thing that is bothering me lately is people thinking that they think they know best. the truth and fact is that no-body does, its a part of life we are always continually learning.  the reason im saying this is because a person made a comment about small scoliosis curves, Apparently they cannot cause pain. But every persons scoliosis is their own, unique you will never find 2 alike at all. how does this person know that the scoliosis curves isn't causing pain? it is not her body so she cant say anything and cant judge. I'm also not saying I know everything because I certainly don't but i have done research and lived, experience this for the past 4 years, so i do know my fair share of things. my small scoliosis curve cause me a hell of a lot of pain, so i am example of what can stem of it. it Annoys me when people pre judge and think just because they aren't going through it or don't know about it that its ok to say wile things. its not on and shouldn't happen.
Kirsty xxxx

Saturday, 19 July 2014

49weeks(11months) post 1st op and 19weeks(4months)post the 2nd!-

I have received a phone call this week from my old physio giving me all the details of when I start with the new physiotherapist, it is for next Thursday, Apparently he knows what he is doing so it should turn out ok. Whilst we are on the topic on exercise I had my very first post op run..well slow jog... it felt so strange! At first it felt like someone was kicking me in the back but after a while that subsided, i'm hoping to get fit enough for this fitness test!
Thursday I had my Second lot of Laser treatment, im not too sure whether it is back is still the same, I only have 2 treatments left I am worried that it wont work just like the cream, how weird would it be to go through the rest of my life with no/numb feeling on the whole of back, ribcage and over sensitive areas on my thigh, lower back.  I had to try and put some suncream on my back the other day, it was so vile. Nasty almost. I know people who are a few weeks/months post op and have felt some odd burning/random sensations on the backs where the nerves/muscles are healing yet I have had nothing...for 11months! I wonder why its happened this way for me, I know it probably couldn't have been helped or stopped. I guess the damage is done and we just have to try deal with it.
My lower back is so sore this week, im not sure if this is because I am doing more or what but I do know that taking Paracetamol for my back does noting, Its just basically like me just eating sweets. I have taken an Ibuprofen today one of the ones I was first give when I went to my GP at the start, it is 600mg and it hasn't made a difference.. hope it goes away soon!
Kirsty xxx

Wednesday, 9 July 2014

48weeks(11months)post 1st op and 18weeks(4months) post 2nd op-

Nothing really happened last week it was quite boring really, I have just just been trying to do more with the horses, I will admit it is tiring but that is because im not used to doing it now that ive had a long time off! This week has been full of interesting stuff though, On Monday we went to my physio appointment to get there to be told it was cancelled apparently my physio was ill. It would have been nice to have been told before we had left the house but oh well. I mean it takes most people half an hour to get to the hospital and they tried ringing us at bloody 8:10am when my appointment was at 8:30am so not a good start, We then tried to re-arrange the appointment with my physio to be then told she had no more appointments available until she leaves! I have an appointment tomorrow now with a random physio. I hope to god she knows about scoliosis and spinal fusions and we actually do something or it will be another wasted journey! Today we were at ROH for my sisters pre-op, it went well she still has the lung function test, hyper extension x-rays and spinal cord monitoring test before the operation and then she will just have to wait for her 1 weeks notice, I know she is worried about it all but we are all there for her and I know she can do it! nothing will beat her<3 .
Ive finally had all my dates come through for my laser treatment, it seems to be every 3 weeks which is no so bad... I guess! I do hope they work, even if its just a little bit so my fingers are all crossed!
We had a letter today from the hospital to say my appointment with Mr Mehta had been rearranged, it was 29th of September now its a month later in October, This was suppose to be my one year check up but it seems the one year mark will have already gone by the time I have seen him! I would have liked to have gone through a few things with him, but I guess they may have to wait now.

On a slightly more positive note, i have an interview at the Northern Racing College!!!! Its is on the 18th or 19th of September, im excited about this as it is means my life can hopefully get back on track but the interview involves a military fitness test...I don't even know if i am aloud to do it! it involves running, sit ups and press ups and a lot more. I will admit i am super super unfit. i haven't properly exercised since i left 3 years ago now? so i have a lot of work to do. I also have to obtain a letter from Mr Mehta to say i am fit enough to do the fitness test and the course, it will slightly hard now considering my appointments not until October...So i either have to ring his secretary or ring NRC and ask if there is any chance i can re arrange the interview for like November.. at least id be more fit then right?
kirsty:) xxxx

Saturday, 28 June 2014

46weeks(11months) post 1st op and 16weeks(4months)post 2nd op-

This week has been great! I feel like I am finally starting to get my life back on track and I feel better this week than I have since the firs operation can this mean i'm on the mend to getting fully better? On Thursday I started my Laser acupuncture therapy, it was quite weird, its like a massive torch type thing that heated up, it then was put either side of my scar, my ribcage and my left thigh individually and it took around 30mins. The only down side to this is I have to wear lovely fashionable hospital gowns and some funky big sun glasses! I am having 3 more treatments of this and we will then review if it is working, if it does then I will get top ups every 4months if it doesn't then im not actually sure whats next (if there EVEN is a next), my next one is the 17th july.

Friday I was at a taster day at The Northern Racing College, it was fab, I really like it there, so I am defiantly going to Apply to do the 18week residential course there. (well it is a 12 week residential course and then 6 weeks work experience) The horses seem lovely and it looks a nice place, id love to learn about race horses. I am still uncertain on whether or not to ride there, they don't think I should as falling off is bound to happen, it will happen to most people usually the falls aren't bad but they could be, it only takes one fall and I could break my back or something or damage the very few vertebrae I have left, put that on top of other aspect of the course, my back probably wont cope. the non-ridden course does sound good though, you learn and do everything that the riders do minus the riding. The fitness test to get in is another story in its own it seems very hard, you have to get around a 7 on a bleep test and do other things like sit-ups, planking and so on. If you then get accepted you have to do Military Fitness 3 times a week which is part of the evening classes, its 7am-9pm days and you work one weekend then have from 11:30am(Saturday) until Sunday evening off the next one. I cant wait to send my application form off and see how everything goes,:)

More to the point today is International Scoliosis Awareness day, the only day people from all across the world team up in aid to raise awareness of this condition. people do fundraisers and other meet up in London (Hyde park) with SAUK the UK's only charity to raise money, awareness and help people that need it. Scoliosis Often leaves suffers feeling alone and have a massive affect on how they see themselves, I wanted to chance this, so a while back I started to write my personal story for SAUK which a few days ago I finished sent in and it was put on the website. I do not want people feeling the way I did as it didn't have to be the way and there was people to help..
So here is the link to my Personal story-
I have also put some photos from Friday at the northern racing college!
Kirsty:) xxxxx

Thursday, 19 June 2014

45weeks(10months) post 1st op and 15weeks(3months post op)-

My Physio has gone to France for a few weeks so I get until 7th July off going to physio, I'm still doing the exercises she left me to do but they are only trying to walk up the stairs properly and still trying to work on my walking, i am determent to get better, I want to be do everything again as I hate just still at home doing nothing, its starting to get really annoying boring and just not me at all but i know im not well enough to get a job or anything yet.
My sister is seeing Mr Mehta on Saturday for her MRI results, we are al hoping everything is fine and its all clear, Im guessing we are going to have a few appointments there for both of us in the next few weeks but they are all necessary.
Not much has happened over this past week, its been quite boring. My newer scar has started to irritate me again so i am hoping this laser treatment is going to help it i just hope we are not at the hospital for it next Thursday long as its very big areas they are treating.
I also have notice i am starting to just get my appetite back, i didn't eat a lot before the operation as i constantly felt full and i think it was due to have big my curve was but now i am eating slightly more which i guess is a good thing.
well heres to hoping next week isn't so boring!
kirsty xxx

Monday, 9 June 2014

44weeks(10months)post first op and 14weeks(3months) post second op-

Things are not going quite as expected with the capsincin (chillie cream) my pain management doctor gave me for the hypersensitive and numb areas on my body. I've been putting it on since april 2-3 times a day but I haven't felt a difference and I know lot of people which have used the cream, they all said to be careful  but I put it all over my thigh, ribcage  at first and I didn't feel a thing no tingling or burning like my PM doctor said. Even when i put it on my back there is still nothing. I thought I would have felt even the littlest feeling back but no. Nothing. My mom decided to ring his secetary as it was no point in waiting untill probably very late this year to see him again and I am having to have it all lasered after all, not the outcome I was hoping for but I have atleast go to try it,so I will be having 4lots of it before September when I see Mr Mehta again, like everything there is that chance it won't work but they hope it does and I do to! If not I will most likely either have to have gablapentin, a tablet for nerve damage or something or just get use to the fact that my back, ribcage is numb and I have hypersensitive patches.
I have recently being having stapping type pain in my ribcage it's the side which is deformed due to how my back was. It is horrible and I do hope it passes and doesn't stay, I really don't know what it could be or why it is there., I guess for now it is a mystery. I have stopped being sick yay! I am starting to feel better in myself because of this and I'm hoping it continues like this so I don't have to have the camera in the stomach.
Physio is going great so far, I'm happy with it at first I had some pain in my lower back,near the rods but it's not hurting as much now, I just get tired very easy. I have had one sessions few for a few weeks which is good, all of the muscles in my legs are very very weak and the muscle at the bottom of my leg is very tight so I have a lot of work to do. My physio said I walk the way I do because my body has gone in like defensive mode so I'm trying my hardest to walk more normally which is so so hard. It also seems to to be that my right leg is a lot weaker and I have to really think about what I want it to do in order for it to do it. I guess and I'm hoping it will get better in time.
I am going on a taster day at the northern racing college on the 27th June so I'm looking forward to having a look around and seeing if I want to go there when I'm fully recovered, there is two foundation courses a ridden one and a non-ridden one, I would love to do the ridden one but I'm not sure with my back so I'll ask about it all when I go, I'll also have the chance if I want to have ago on the horse racing stimulators, It will be very interesting to see if I am able to do everything like normal with my back. I suppose all anyone can ever do is try so that's exactly what I'm planning on doing. I've never let my back stop me before so why should this be an exception?
Kirsty xxxx

Saturday, 31 May 2014

42 weeks(10months) and 12weeks(3months) post op- fading and forgetting?

When things no longer seem so dramatic, scary and worring, people start to loose interest. Well that's how it seems to feel anyway. Our brains go into over drive when something hard happens everybody wants to know how you are and just want constant updates on you there is a lot of support around you when you need it the most, more than you probably think. Its the 2 times now I have been in hospital recovering from my operations made me realise this, but it's not untill after the event has happened we stop and think how life changing it has been.
As it happens it's natural just to keep our head down and keep up the battle but it's when we finally procees what has actually happens people start to loose a lot of interest as they think it's over and done with but it's us that have the long long recovery.  It's hard when everyone, friends, family have stories of going out shopping or going for a hack in my case and all I had to say was the struggles of doing daily things like shuffling down the road or not even even able to put my own shoes and socks on.
For me it times lke this when life is truly put into perspective, while they are stressed over 'little' things like not being able o ride as it raining or other things, it hit me what actually could be lying around the corner from them.

Throughout my Entire journey with scoliosis, scheuermanns kyphosis and the surgery there hasn't been one day gone by when I haven't thought about my will never leave you but like your scar(s) they will eventually fade and while It may seem now like people don't care or support you it's just that they have there own lives,  there own problems and other things that happen in life .
So if you are reading and feeling like nobody cares  just keep in mind, just because people don't speak doesn't mean they don't care or are not supporting you because they more than likely are.
Kirsty xxxx

Thursday, 22 May 2014

41Weeks(10months) post op- Starting physio again...

I had a phone call on Thursday last week from the physio department at my local Hospital to see if when we were free for a appointment, Amazing they asked if we were free the next day (Friday) which we were so that was that! it turns out that my physio is thinking my legs are compensating for my new body and the way it has dramatically changed so I am starting in their gym just on the walking bars re-learning to walk properly again... so that will be for the 3rd time? I am really hoping that it will work but my physio did say until we start this they wont actually know if there is anything wrong with my hips,
 Also I have been using the Capsaicin (Zacin 0.025%)cream that my Pain management Doctor, Mt Kumar prescribed but so far it hasn't worked. I have been using it for around 4/5 weeks everyday, a few times a day and it has done nothing my back, thighs and my ribcage all feel exactly the same as before I started to use the cream, Im coming to the conclusion that it probably isn't going work, With the cream you are suppose to feel like a burning sensation because of the chillies but I don't feel ANYTHING at all which I think is strange...Maybe my hypersensitivity and Numbness is to bad for it? makes me wonder! I will most like get my mom to ring Mr Kumar's Sectary back and see if we can make another appointment as there is no point in me wasting my time with the cream if its not doing anything, we could be doing something that may work in that time:)
Ive nearly finished my course of Acid Reflux tablets I am so so hoping that it stops like it did the last time and I don't have to have the camera in my stomach, I know its to check that everything is ok but I really don't want it! even my GP said its not very nice and that is saying something. I still feel sick time to time but at least its not coming up.
I would love to know what its like to be normal but then again its probably overrated!
Kirsty xxxx

Wednesday, 14 May 2014

40weeks(10months)post 1st op and 10 weeks post 2nd op-

Its the Start of the show season in the horsey world! everyone is getting their horses ready and going to shows etc, yet I am sitting here drinking a hot chocolate typing this. show jumping is tonight, one thing that I love to do and really enjoyed last year but I am still un able to yet I am not even aloud to have a little trot or a canter which is very annoying and upsetting. I would love to be able to get on a horse and do everything I used to. You're probably wondering why I am typing al this well, this is just one of the many feelings and frustrations you as readers may be feeling whether it is because of your operation or  restrictions with pain.  It is totally normal to feel this way, its nothing you can help either we have go through some major things and really it cant be rushed, something that will just take its time. although it is hard! we just have to keep thinking of what we (and our bodys) have been through and how far we have come!
While I was on my phone earlier I saw a saying that I loved so I thought id share it- "A Smile is a curve that sets everything straight!" being positive and smiling helps to get through the tough times. its hard I know but I believe that it can make a difference!
kirsty xxxx

Thursday, 8 May 2014

39weeks(9months) post op and 9 weeks post the second op-

Its been 9 weeks since my second operation WOW! I haven't came on my Dyhydrocondine yet all i did stop was the morphine a week or so after the operation. I don't know if it is because my lower back is hurting a lot lately so i need them or the fact i am scared to come off them, i just keep having "What happens if i stop them and my back starts to hurt again?" pop into my head everytime i think about it. i do not what my pain to be as bad as it used to be, before the operation as it was so un-bearable and i felt like i couldn't do anything and i was constantly letting everyone down. I hated the thought of people thinking i was faking my back because i wasn't, having a spinal deformity isn't easy and i don't want anyone thinking it is.

With international Scoliosis Awareness day coming up in a month or so I would LOVE to raise more awareness. Why? your probably thinking.. Well this is because i don't think there is enough information Available for people who have Scoliosis or Kyphosis or parents who have kids with it. I mean i used to have a lot of people staring at me etc and i just don't see why it has to be now. i don't know exactly what I will do YET but i'm sure ill come up with something!
kirsty:) xxx

Thursday, 1 May 2014

38weeks(9months) post op-

I saw pain management on Monday (28th April) and After going through some questions with a nurse I saw my Doctor he was going through all of the options with me, my sister and mom. He has started me off with some cream it contains some type of chillie this is to try and help desensitize all of my back,rib and thighs he said it works in some people and others it doesn't. I am quite scared to us the cream, I know it sounds silly but I am, I cant even touch the parts affected my self so I don't know how im going to get on with it. The other option was him Lasering my back, from what ive gathered its like a bigger Laser pointer? but I guess if the cream don't work he will discuss it in more detail.
I am also getting quite worried about the way I walk, it isn't normal that is for sure and I don't know how or if it will get fixed. I am waiting for my referral off my surgeon for physio but he said I can only have 'Gentle Physio' whatever that means... He has also asked my Doctors surgery to do a futher assessment on my reflux, I now have the tablets and it was going well but today I have been sick.

Although I am still struggling and I do find things hard something are starting to get a little easier I have to admit I never thought it would be so hard for me at first to do the simplest thing like putting a pair of socks on or trousers but that has seemed to get easier, n1ot 100% but it will get there I know it will! things I do still find hard is having a shower (still yes still!) and do everyday tasks around the house like washing up and all. I can make a cup of tea and I can wash up (to a certain extent) but im still not all sorted.

I was tempted to see how far I could bend and that the other day, I didn't do it for long just 5mins but it was a shock at how far I can bend with my fusion (T1-L2) I cant bend much but over time I will get used to it. I have put some pictures below of the outcome and I have also included a picture of how my legs are when I walk..
Kirsty:) xxx

Wednesday, 23 April 2014

37weeks (9months) post op-

Last week was a very tough week, on Monday just before we saw my consultant  we got the news that my loan horse of 4years had to be put down so we spend every afternoon with him it was the longest I've ever stayed at the stables but every second was worth it, on thursday (17th april) we said our final goodbye to boris, it wasn't easy but knowing he was suffering made it easier, I'll never forget Boris he has helped me through so much, I owe him everything.  On a better note I got my body protector on Saturday that meant I could finally ride my horse again, the first proper time in 9months! It was great, I was a little bit sore and tired after but I'm sure it will get better as time goes on.
I'm seeing pain management next Monday (28th) I'm am so hoping they can sort my hypersensitivity and numbness out as it now seems to be getting worse..just after my first operation it was down my thighs but now the one on my left thigh has spreaded to my knee:( I don't want it to keep getting worse, also I still haven't received my tablets for my sickness/ acid reflux I still constantly feel sick but for the past 2/3days it hasn't  happened I'm hoping I can go a few more days with out being sick but I doubt it:/. It cant be that hard to sort some tablets out right?
Below are some pictures of me having a little walk about on Max and Jimbo I wasn't on the long. Jimbo was a bit too fizzy and fast because he has been recovering from laminitis so I don't think I will be riding him again until he calms down abit I really don't want to damage my back this early on. Also I have put a picture of how my scar is looking and a picture of me and boris a few days before he had to be put down:)
Kirsty xxxx

Monday, 14 April 2014

36weeks(9months) post op-

Alot has been happening over the past week or so, I have been trying to do more and more, I have been attempting to take my dog Bruce for a walk every night. It is a challenge but I know If i keep at it i will be able to do it! 
After my second operation my leg started to swell up the nurse I saw reassured me and my mom it was because I wasn't doing enough walking ect so that is why I started walking the dog and trying to see my horse but after a few days it got worse and the stitching I had came even looser so today (14th april) I saw my consultant for my 6 week post op check he checked my leg and told me just to keep the hospital stockings on and to just keep doing everything I'm doing and he hopes it goes down also he got one of the nurses to sort the stitch out, it was very unpleasant but it was over within a second or two! I am also having the same tablets I had the last time as I'm constantly being sick again and I will be starting physio not for my back but for my legs this is because ever since my dirt operation I have been finding walking hard, I walk different to everyone like a penguin really haha! But I'm sure it will all get sorted.
I also asked a few questions which were playing on my mind and guess what?!?!?!
I HAVE THE ALL CLEAR TO RIDE AGAIN!!! Ok ok I am only allow to get on from time to time and Just walk but it is a start!!!! I will be able to do everything again when I'm one year post op including galloping and jumping I will have to wear a body protector from now on but I will it is better riding with a deformed spine and take extra care here and here:) my consultant even said I maybe able to go to the Northern Racing College in the future probably not riding there but doing a non ridden course which is something I thought was so out of the question now my spine is fused. I have 4months of not seeing my consultant it's the longest I have gone without an appointment (well since the operation anyways!) but if I have any problems I am welcome to make an appointment to see him but hopefully I don't have to:) 
I cannot wait now to see pain managent to get the hypersensitive and numb parts sorted and then I'm hoping all will be good!:)
Kirsty xxxxx

Tuesday, 1 April 2014

34 weeks (8months post op) - one month post second operation!!

So I am 4 weeks post my second operation to trim my left rod! Wow I cant actually believe it has been a months, it doesn't even seem that long! Everything is getting slightly better and I did manage to go see my horse on both Saturday and Sunday for a few hours, I may have just stood there but it is a start just like the last time and it is going take its time. Oh well ill get there I'm sure!
I have been having a few problems with my scar, not with healing in such but it just feels so strange and irritating around it. I never had this irritating feeling with my first scar and it is a lot longer but it feels so vile when clothes touch it and in general I just have this constant feeling! I also have a loose stitch type of thing which is at the bottom of my the new scar it is like a greeny/yellowy colour, I really don't know what to do about it as it never happened with the last one and they are dissolvable stitches so I am not too sure why it has happened, I guess it is another thing im going to ask about when I see my surgeon in a few weeks!
kirsty xxxx

Thursday, 27 March 2014

33weeks(8months) post 1st op and 3 weeks post 2nd op-

The sickness is back again, just like it did with my first operation. It is everyday and it is really taking a toll on my body, I'm constantly feeling Ill and tired, I hate this feeling. Last time I was 16weeks post op when I decided to tell my consultant about it but I'm not going to wait that long this time, I see him on the 14th april so i will mention it as it is not something I can put up with and I really don't think it is good for the body either. Last time he gave me some tablets and said that if I was still being sick after the tablets had finished i would have to have a camera in my stomach to see if everything is ok. I am hoping it's going to be like last time and he gives me the tablets again, they did help and after they finish I did feel sick sometimes but I was actually never sick but I guess I only stopped those in January time do it wasn't a long time. I am hoping he doesnt just go for the camera since it has happened again as it just sounds scary really.
I'm also going to ask if I can go back to physio as I'm struggling with my recovery,I was struggling with the first one but I guess the second has knocked me back loads. I want to be able to get the most out of my back or well what's left of it and I just don't feel like I am getting that by my self. I did start physio at 7/8weeks post op but the my physio was giving me exercise I shouldn't have been doing as it could have affected the fusion so I was advised to stop going,  I'm now glad I took the paper she gave me with the exercises on to my consultant as we would have never of known othewise.

Wednesday, 19 March 2014

32 weeks (8months) post op-

I'm 8months post my spinal fusion surgery!! It seems like it was just yesterday in someways but in others it seems ages ago. I Recieved an Appointment for Monday 28th April to see a pain management Consultant not for pain but because of the numb/hypersensitive patches on my thighs, back and ribcage. My Surgoen thinks he will be able to help get some of the feeling back but there are no promises, I'm actually looking forward to what the consultant says and what he can do as its not a nice feeling I have on the patches at all.. Nobody knows what it feels like to have someone touching them on there back and not being able to feel it. Nobody understands the fear of someone touching or knocking my back or thigh. Some people don't even understand when I say I have very very little or no feeling on my back.
I think it is one of those things that unless you have been or even seen someone go through the surgery and know what they are going through, you won't understand.  It's not nice at all,it's not nice to be told you may not get the proper feeling in your back EVER again. Having scoliosis or Kyphosis or both for the matter is not easy but the surgery itself is like a marathon something big that you have to overcome and conquer.
have known people to say that the surgery is not a big deal and given a few weeks I SHOULD be able to do everything just because they can they dont have scoliosis. In fact the surgery is a massive deal, I would like to see them be cut open, having there spine put back into the right place, having  long heavey titanium rods attach by screw and hooks topped by a bone graft all done in hours. (mine took 11hours !) then being told they have to learn most things even SIMPLE things again. Such as rolling on your side, getting out of bed, sitting in a chair and then relearng to walk again. Then they can tell me i should do everything like normal again. It is not easy nor should it seem easy, I think that everyone with Scoliosis, Kyphosis, Fused or not are brave and are true warriors. I for one want everyone to know that!<3
Kirsty xxx

Thursday, 13 March 2014

31weeks(7months) post op-

feel like I have taken tons of steps back since my 2nd operation a week ago, I was only just starting to feel like my old self. I was only just getting to the point of being able to do slightly more. I guess you can say its taking me a good while to recover, longer than some I suppose. im getting annoyed at the fact I still can't do everything I want but I know it's could take up to a year(or longer) to be able to!! It's only been 7months since my first operation so In some ways I'm doing great. I just have to remember that everyones body is different, everyone heals differently and that now  its MY life and can choose how live it,not my back controlling my every move.
Before my operation I became so wonky. My shoulders were so uneven and my right hip stuck out loads, when I used to walk I used to use my right hip to rest my arm on when it ached,I couldn't sit in a chair 'normally' I would fall to the left and slouch, it was embarrassing. I was constantly out of breath. I used to bend to get something off the floor and my massive rib hump would appear, I didn't want it there nor should it have been there but I guess it became a part of me for a while but now I don't I don't have that to worry about my back is straighter than i Ever imagined it to be I may have lost flexibility from the length of the fusion but at this moment in time it doesn't really bother me,I now how have something to be proud of and I am very proud of my journey so far:) 
Kirsty xxx

Tuesday, 11 March 2014

1 week post 2nd operation!

So where have I been? what I have been up to? how come I haven't posted yet?
Well to start off I had my 2nd operation on Tuesday 4th march and everything went well as expected. I had to be at the hospital at 7:15am  on Tuesday morning meaning I was up at 3am getting ready and sorting the last bits and bobs out. (too too early).
When we got there we just waited and waited until around 8am when a healthcare assistant called my name for a height/weight check and we had to wait again! at around 8:30am we was called to see the anaethist, doctor and the spinal nurse they checked all my details ect and explained that they was going to go in and trim abit of the rod that was causing all my pain and discomfort but they would have to extend my original scar. We then returned to the waiting room for 15minutes and then we went on to a ward to do some more waiting!
11am came and it was time for me to get into my gown and into a bed for my pre med or 'knock out' juice as the nurse called it (its a tablet that makes you all relaxed and drowsy) where I was then told I was confined to the bed and told not aloud under any circumstances to get out! A long wait for my mom but a nap for me later I was taken down to theatre and knocked out at 2:30pm.

I was taken to the spinal ward at about 4:45pm so the operation didn't take too long but it was long enough to knock me about! I was in a lot of pain and at first they would only prescribe 1 and  1/2 paracetamol due to apparently my height and weight but after my mom and dad moaning I was given dyhydrocondine and then after still being in ALOT of pain I was given oramorph at around 11pm so I could sleep. I would say each day got better pain wise but it didn't it hurt so much. the nurses were getting concerned on Wednesday morning as I hadn't gone to the toilet yet at first they thought I was probably holding it so I didn't have to use a bedpan so (even though I wasn't suppose to get out of bed yet!) they took me to the toilet too there surprise like I said I didn't need the toilet! they did keep saying if I didn't go soon they would scan my stomach and see about putting a catheter up there but they never did! the physio's came around 1:30pm on Wednesday to try and get to the the toilet again, I went but they wasn't happy with the amount that came out and they wasn't happy with the amount I was drinking either...(naughty me!!) everytime I drank a decent amount I was being sick everywhere it happened a lot and it hurt to be sick.
I had a slightly better sleep on the night and at around 10:30am on thurday the physios came to see if I could walk and bit futher and try going up stairs. I did it, it hurt loads and I had to keep sitting down but I did it! soon after I was old I was being diacharged and after my dinner a porter came to get me. my dad had already taken all my stuff to the car so my mom and sister was with me when the porter arrived and before I knew it I was in the car on the way home! to be honest I really didn't feel well or I didn't even think I was well enough to go but I guess they needed the bed as they rushed the whole discharge thing!
I cant actually believe its been 1 week since the operation though. I am still on the morphine and other tablets and I do feel crappy, in pain but I guess that's expected. today i have reduced my morphine in hope i can start to come off it. At the moment i feel like i have taken 1000steps backwards in my recovery but i see my consultant in  6 weeks time and things will be better then hopefully!
Below are pictures from my stay in hospital and my scar.

Monday, 24 February 2014

29 weeks (7months) post op- second operation

So this afternoon my mom and dad got a phone call from the hospital to say that my consultant has checked my CT scan and he wants me to have my revision surgery next Tuesday!! im so much shock, I only had the CT scan last Monday I wasn't expecting it at all he said he wanted to see us in clinic before he arranged anything in our last appointment and now he said he wanted to operate ASAP! I was at the yard at the time with my brother explaining to him how to muck out a horse for when my sister has her fusion. To be honest i'm scared, as scared as I was when I had my fusion, we don't really know the details of the operation or what he is planning on doing but all we now is to expect me to be in there a few days but im sure we will get the full details when I have my pre op on Wednesday.

I'm hoping to get back on my horse soon, I sat on him whilst he was tacked up the other day (Naughty me!!) it felt so so strange I didn't sit wonky and I didn't hunch over. im quite happy now as I look like any other rider when I get on a horse and not having to depend on people to help with my hip etc.
Below is me sitting on Jimbo for the first time is 7months, I wont be able to get back on him until im fully recovered from this operation now heck im still not recovered from the first one!!
kirsty xxxxx

Wednesday, 19 February 2014

28weeks(7months!!)post op-

On Monday (17th) I had my CT scan i was told to be expecting to wait atleast a few weeks for the scan but infact I only waited 1 week! It wasnt actually that bad we waited a while in the waiting room for awhile because of a few emergencies but the scan it self only took a few minutes which was great also it wasnt as noisey or as inclosed as an MRI scanner which im thankfull for.
We have to ring monday to get an appointment to see the consultant again, hopefully I don't have to wait long as my neck is hurting a lot still and I'm finding no relief!

On the plus side of this all Tuesday saw me 7months post op, I'm hoping once my neck is all sorted I can start to ride my ponies again. Slowly but surely as the weeks go by I'm starting to get better, it's taking awhile (a lot longer than some people) for me to adjust and I am still finding it tiring and hard to walk a good distance but I think if I keep at it I'll be able to soon!
Kirsty xxx

Tuesday, 11 February 2014

27weeks(6months)post op- A not so picture perfect appointment!:(

I saw my consultant, Mr Mehta yesterday with my twin sister, After waiting 2hours in the xray department to have up-to-date xrays taken we were finally called to see him. It wasn't much good news for both of us really, After I told I was having really bad pain in my neck he checked it and said that it could either be a dislodged hook or That its because my left rod is too long either way it will mean another operation, I will be having a CT scan in a few weeks so he can see which one is causing the pain and I will see him after that to discuss it all. I really didn't think I would need another op but if it will get rid or help with my neck pain I have no choice really. I am also being referred to pain management because the numbness/hypersensitivity in my leg and back isn't getting any better so he is hoping that they can give me some type of cream to help with that.
My sister has also been told that her Scheuermanns kyphosis curve is now 76degrees and now has to go ahead  with Spinal Fusion Surgery too. We really wasn't expecting to hear it at all! we knew surgery was a possibility for her but now hearing it is another thing. I really didn't want her to have to go through all I did, the pain, the fear, the toughness, although it does all get better with time, She doesn't deserve it nobody does!! Mr Mehta did say he will be able to do it will posterior surgery only and not what I was going to have to have (Anterior and Posterior!) im glad in a way I only had posteror as I don't think id of coped with having the both operations in one go!

I have uploaded my xrays from yesterday and also my twin sisters kyphosis xrays aswell!
Kirsty xxxx

Thursday, 30 January 2014

Scheuermanns kyphosis..

Not many people have ever heard of scheuermanns kyphosis before its an outward curvature of the spine from the side view of a person with scheuermanns it looks like the person back is an 'S' shape. Everyone has a little bit of kyphosis that is normal (20-40degrees) but when a person has scheuermanns there vertabrae grow wedge shaped instead of the usual building blocks causing the person to have a more of a kyphosis curve than normal.
Sheuermanns kyphosis often leaves a visual 'roundback' or 'hunchback' hump on the persons back
Which cannot be corrected when asked to stand up straight, it can often lead to daily back pain in all parts of the back and can gets worse over time,
The onset of the condition vary from 12-16 years old but it's not always noticed untill adulthood because many people that have scheurmanns are often mislead because many people pass it off poor posture or being lazy which results in a delay of  diagnosis and treatment.
There are ways to help kyphosis which include physiotherapy and in some cases braces areused to help. In curves greater than 70 sugery is recommend.

I have hopefully have given you a little insite to one of the spinal deformities I have, so you can get a better understanding of it. In feb 2011 I was diagnosed with scheuermanns kyphosis at the time I was 15 years old I was told I as too late to wear a brace as now it wouldn't make much difference so I was told they'd watch and wait to see what happened. In april 2012 a year and 2 months after the diagnosis I had another X-ray which after being check stated my curve was now at 95 degrees and surgery was highly recommended but I said no, despite the pain and everything scheuermanns caused me, I went on for another 8 months before saying yes to surgery by that time it was December 2012.
Below are my 2012 and 2013 Kyphosis xrays so you can get an idea:)
This is a link for more in- detailed information on kyphosis.-’s%20kyphosis%2010.13.pdf

Kirsty xxx

Friday, 24 January 2014

Looking back to when I was first diagnosed..

it's now been nearly 4 years since I was first diagnosed with Scoliosis and 3 years since I was diagnosed with Scheuermanns Kyphosis. Alot of emotions went through my mind when I first was diagnosed with scoliosis, I felt very angry, confused, upset and most importantly I felt like I was no longer a normal teenager. Within seconds of the orthopaedic consultant telling me,my brother and mom I had scoliosis my life suddenly  changed, to be honest I didn't want to except that I had scoliosis becausethen it would be admitting I was different, different from everyone else in my year. I was only 14 years old atthat age you dont want to a little but different from everyone else I always thought everyone's spine was straight but now I had to face the fact that mine wasn't it was curved.
I was too ashamed, too afraid to tell anyone at school about my back other than my best friend becky and my sister as I knew they wouldn't judge me and treat me any differently to any other person.Even when it came to our year 11 prom I still self conious about my appreance I didn't want others seeing my back, they saw it through my school uniform and made horrible comments I didn't want the other kids seeing my back in its full ugliness because to me that is what it was ugly and disgusting. I spent ages looking for a prom dress that would hide my back or at least do up when I put it on, in the end after a lot of tears the lady said she would alter it so it would fit over my back, I dreaded the next fitting for my dress 'what happens if my backs got worse?' I kept thinking,  I had every right to be worried because my back did get more deformed. We went a futher dress fitting 2 weeks before my prom and again my curves progressed. I felt so angry with the way I looked, why couldn't I have a normal spine like the rest? 
It had taken me along time to accept my deformed, ugly, big rib hump on my back, very wonky shoulders and my right hip that stuck out a mile.In fact still to this day I look at clothes and still think It won't be able to get over my hump even though it is no longer there or that I am going to look wonky. I think unless you at least try to understand about scoliosis and what the person is going through you won't know how much of an impact the condition, nasty words and even the persons physical appearances it has on them wether it be a short while or life. We will always have to live with it and we will have to live with affects, pain it may cause.
Scoliosis is more than just a spinal deformity, it affects 3 out of every 100 people and it has an effect and impact on how the person who is suffering from it sees them self and the way they feel which not many people that don't have scoliosis are aware off.
I have added pictures of my second ever xrays which were taken in 2010 before being referred to ROH.
Kirsty xxxxx

Tuesday, 21 January 2014

24 weeks(6months post op!!)-

So it has been 6months since my major spinal fusion surgery, YAY!! It's going so fast it only feels like yesterday since I was admitted into hospital for my op the next day.
I'm not going to lie and say it was an easy 10days  because it wasn't I still have the memories of coming around from the anaesetic i thought something had gone wrong because I didn't have much feeling in my legs my family had worried looks on their faces, Thankfully it was just the epidural doing its job and when the doctor came to check all my movement it was fine so the operation was a success! Of course It was probably harder for my mom, dad and sister when they first saw me because they were there in HDU awaiting to see my very drugged fresh-out-of theathre body which was a hard state for most to see.
I remember what it feels like to be completely out-of-it on morphine and other meds, then there was the embarrassment of having people I didn't know do EVERYTHING for me, as i am so used to dong everything myself. Then the initial fear of learning to roll on my side, sit up,stand up and walk with what felt like a really heavy table attached to my back.

I've came a really long way in 6 months though, I'm so greatful for the little things I can do like dressing myself, walking short distances and now I'm so happy I am on very little pain killers! I can't wait to see my consultant again to see if I can start to do more as you cannot bend, lift or twist for 6months+ and you have to wait for the fusion to set untill you can do anything really physical I am hopeing I can start to get back into my hobby horse riding soon, I miss it so much, i have never gone a few weeks without at least going out on a hack with the ponies. I didn't think I'd actually last this long so I'm hopeing I can get back into it soon!
Kirsty xxxx

Thursday, 16 January 2014

Its not the end its just a bend! 23 weeks post op!-

Ive been having a lot of people asking me the same questions lately...
'When will you be able to bend over and touch your toes again?' and 'when will you be able to bend?'
Well lets just say during my 11hour operation  2 titanium rods where attached to my spine by 26 screws after my spine was put into its new position a bone graft was placed over it over the next year or so that bone graft will become solid inflexible bone. The Rods will stop me from bending and the bone graft makes bending my spine near enough impossible. Even if I was to have the Rods taken out in a few years I still will be unable to bend my spine because the bone graft would have set.

So the Answer the question-  I will never be able to bend and touch my toes again, infact i wont be able to bend at all really, All my bending will come from my hips and the un-fused vertebrae i have (L3,L4,L5) My Physio has said that the vertebrae i have left are very little use to me bending wise but we will see!

Many people have said that they wouldn't be able to cope with a life-time without bending and it is exactly what i thought at 16 when the operation was mentioned properly, it was mentioned very briefly in my first appointment in 2011 when I was 15.  Since then I always had it at the back of my mind ' how the hell do you cope with being not able to bend?' but in all honestly it isn't all that bad as time (weeks and months) go by you learn to adjust to it and now i bend my knees or sit down when ever i drop anything or need to pick something off the floor. I now am getting to the point where i don't really think about it before it i just do it like you just bend your back.

Of course i get frustrated because i find things difficult but as more time goes on the more everything will become easier. For example putting my shoes and socks on i have learnt to put my foot on my knee/thigh so no bending involved!
Yes there is times where I just want to bend my back and not have to spend a little bit longer getting something off the floor like any un-fused person would, I'd love to have the straight back I have now and have kept the flexibility I had but it couldn't of happened, i had to think about my future really, if I didn't have the operation my curves could have continued to get worse and I'd have worse lung capacity.
For now and the next few months i guess ill still get used to thinge the way they are.
I don't remember what it feels like to have someone touch my back and feel it, I don't remember what it feels like to not have to worry if someone brushes past me by accident . I don't even remember what it feels like to run. I guess these are some of the things that go through your head and I'm writing it to not scare anyone out of the op I'm writing this so people are aware that they may feel like it too.
But There are many more things, positive things that have came out of it though. the fact that my Spine is stabilised and corrected is amazing and i don't have to now even try to sit up/stand up straight it just a great thing that comes with the fusion, Also the fact i am taking nearly no pain killers is the best thing ever, i never thought i would ever come off the tablets, EVER!  :)
Kirsty xx