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Simon
31st December 2007, 03:10 PM
Dear all
This is my first time on this forum and for the past few days i have been reading though the help and support people having been giving each other i think its incredible.
Below is a little bit about myself
My name is simon wainwright i live in exeter and i have had kyphosis for a long time now.
Its been getting worse and worse over a number of years.
I have now got a 92% upper thoratic kyphosis and after many years of going to different surgeons last year i finally found the surgeon that is going to do something about me
The previous surgeons i have seen are
mr leovesky at stanmore went private to see him
mr d,o,donoghue at the royal liverpool university hospital
He sent me to the best mr j.b williamson president of the uk scoliosis society he is based at hope hospital Manchester.
From the early years at school i have been called many names hunchback included
i got fobbed of from my gp for years and been to pain clinics to have injections, physio been told to go swimming and the best quote from a doctor was "you wont get any worse it will go away" yea right i thought.
Any way i was seeing mr o,donoghue for about 3 yrs and he said "we will keep a eye on you year by year"
then eventually i was told my back was to complex for him to operate on so he sent me to see mr williamson as he works on complex backs so of i waited and waited and finally got a appointment to see him on the 28th February 2007 at 9.35 so of i popped and waited and waited till midday guess who i seen his house officer who told me that i have a very complex kphosis and that as i had not had a m.r scan for sometime i would need one.
I had my m.r scan 3mths later and got a appointment to see mr williamson at 5pm on the 18th june 2007
the m.r scan shown no intraspinal pathology (whatever that means)
but then the bombshell i would have to go on antibiotics to clear a few minor spots from my back as he said he would not operate till my back was clear of acne due the risks of infection.
3mth later i finally got my pre op appointment so away i went again to see mr williamson his team of nurses to be told my back is not clear enough (i had one spot) gutted i was.
I got advised to go to see a derm (for one spot) to get put on roaccuatane only a derm can put you on them as the side affect s are bad believe me horrible tablets.
last week i got a appointment though for a second pre op next wensday and been told not to book any holidays between end of feb to the end of march as thats when am having my operation am not looking forward to it am a wimp ha ha
anyway am hoping someone can help me with what happens during the operation
how long will it be etc etc
Mant thanks simon
p.s sorry about the spelling

tonibunny
31st December 2007, 03:28 PM
Hi Simon! Welcome to SSO :welcome2:

Wow you've been through it haven't you!! I'm really pleased that you're finally getting to have surgery. I used to get called names at school for having scoliosis so I know how miserable that can be :squeeze:

Regarding the MRI scan, "no intraspinal pathology" is good news - it means that there aren't any complications involving your spinal cord.

Surgery isn't pleasant but we're here to help you through it! Try to focus on the results - there are quite a few guys here who have had kyphosis surgery with fantastic results. Having scoliosis myself, I'm not sure of the exact details of kyphosis surgeries, but I think it's likely they'll cut small wedges out of some of the vertebrae in your back so that it can be pulled straight, and then fix some metalwork in there to hold it straight. After a few months, the vertebrae will fuse solidly together. This does mean that you lose some movement in your back, but even those of us with very long fusions (I'm fused all the way from T1 to L4) don't tend to notice this once we're used to it, and can move as much as we want to :-)

Keep smiling! SSO is a bit quiet at the moment because of the holidays, but I'm sure there'll be more people along soon to welcome you :D

lots of love, and welcome again!

Toni xx

Simon
31st December 2007, 03:36 PM
thank you for your comments
i hope everything you wish for in 2008 will come true
am getting a new spine at last yeaaaaaaaaaaaaaaaaaaaa

xxxx

kidz taxi
31st December 2007, 04:33 PM
Just wanted to say HI :welcome: it certainly sounds like you have been given the run around but glad to hear you are finally getting the surgery you need.This site is full of wonderful helpful people so youve come to the right place. My daughter is 5 weeks post op from scoliois correction and is doing great so great infact shes off to a new year eve party tonight :party: :cheers:

Simon
31st December 2007, 04:48 PM
hi thanks for your comments am so made up your daughter is well may let it continue and hope you and your family have a great new year x

Simon
31st December 2007, 04:51 PM
DOES ANYONE KNOW WHAT HAPPENS IN SURGERY OR WHAT TO EXPECT AFTER SURGERY I.E WILL I BE IN HDU OR ICU , WHAT PAIN MANGEMENT WOULD I HAVE,
OR ANYTHINK YOU CAN SHARE ABOUT THE OPERATION........
THANKS
SIMON :badpc:

Amazed Jean
31st December 2007, 08:53 PM
Hello Simon, First let me send you a big old hug. I am so sorry you are dealing with scoliosis and a whole bunch of idiots! I think you are now on the right track. Hang in there and don't let anyone bulldoze you. There is nothing wrong with questioning consultants and asking for earlier appointments etc. You have to be your own best advocate for your health. It sounds like you are through some unfortunate early phases and are now headed in the right direction. I tell new people to get a notebook and keep it with you to write down questions etc. When you get to see a consultant take the book and write the answers down. (We seem to forget some of the anwers by the time we get home.) You might also try to get copies of xrays and scans and similar stuff. They are usually available if you are persistant and nice to the records dept. You can even take pictures of them. You will need these fro the rest of your life and the best way to insure you will always have them is to hold onto them. Clinics etc. are famous for losing things. Please keep us posted and ask away. Welcome to SSO.

Simon
31st December 2007, 09:30 PM
thank you jean i will bear that in mind am hoping all goes well and i will hopefully get my xrays , m.r scans and ask the surgeon to take some pics and post them on here.
i have been though the mill but am lucky enough to have a good family my surgery is due between feb and march i will keep you posted.....
thanks again

Simon
31st December 2007, 09:32 PM
sorry jean happy new year to you guess were you are its morning here its coming up to 8.30 pm so a few more hrs till 2008 xx

jamielynn
1st January 2008, 04:07 AM
Hi and welcome to SSo! :niceone:
I'm getting my surgery this summer and am kinda curious about everything to do with it.
All I can say is that if you have a brace, you will have to wear it until your back is completely fused... I think for every person that's different, but my orthopedic surgeon has told me that it should take up to 6 months to fuse.. hope I helped a little.
Happy New Year!
xx

Simon
1st January 2008, 01:32 PM
HI JAMIELYNN
AM NOT WEARING A BRACE I NEVER HAVE DONE AS AM 33 YEARS OLD
MY OPERATION IS PLANNED FOR FEB/MARCH
WHAT ABOUT YOU
HAPPY NEW YEAR TO YOU TO X

pink_candy_swirl
1st January 2008, 02:04 PM
Hello simon. My names Nikki. Ihad surgery in February 2007 for Kyphoscoliosis and Lordosis.
I too had to go on those tablets to clear the spots from my back. AWFUL! My skin was so dry and my lips were basically just scabs. My skin was practically falling off.
I'm not an expert but I'm guessing your experience will be similar to mine. You will have a pre-assesment if you haven't already. They will just perform a few tests to make sure your body is fit and healthy enough to have the operation.
When your date coes around you will probably stay in hospital the night before. You won't be allowed a drink after 9-10pm. They will wake you up early in the morning for a drink of juice/water. They will sticks some wires on your head (to monitor your spinal cord) and check temerature, blood pressure etc. You will be sent to the room to be prepped up and put to sleep. You won't know anything while your asleep.
They will perform the op. They will probably use a combination of metal rods/screws etc and bone graft. This will probably be your own. In my case they removed ribs. They use the ribs inbetween your vertebrae (after removing your disks) and put metal there to hold it in place while the spine fuses in to a straighter position. In kyphosis they tend to build cages around your spine also, usually with the bone graft.
When you wake up they will sort your pain meds and send you to either HDU or ICU. It depends on the facilities in the hospital to which one you go in. I went in HDU as they had to HDU rooms on the ward I was staying on after HDU. That way I was on the same ward all along and didn't have to do much transferring, making my stay more pleasant. You will move to a normal ward when you've recovered a little more and you have lost most of the tubes and wires.
You probably won't be allowed to bend or twist your spine for 2-3 months (in my case 10). You won't be allowed to lift much either. You will slowly be allowed to resume normal activitys.
Some people are given a cast/brace to wear at first. Some people have physio after surgery. It all depends on the individuals case. I had both and am attending physio at the moment.
I hope all of this helps.
If you have any more questions, feel free to ask.
Nikki x x x

Simon
1st January 2008, 02:41 PM
hi nikki
thank you so much for that info am so made up that i have found people in here that i can relate to.
the tablets you were on were they called rooacuttane they made my face so red and dry the worst is they make your joints and bones stiff and sore not good when you already have a bad back.
I have also been getting terrible headaches (not sure if its the tablets or my back)
What are the wires on your head for i have not been told about that not been told about much really.
My pre op is wen of next week and got a app for the anesthetist on the 22nd.
how old are you when you had yours done
Am so much in the dark about my op but am looking forward to a new spine.......
Hope you had a good new year
xxxxxxxxx


:drunk: :wave:

Simon
1st January 2008, 03:06 PM
anyone tell me what tube, drains ,cannulas i will have in i have seen a couple of people on you tube that have had the operation (type in scoliosis on you tube to see the vids) and some had cannulas in there neck anyone else have them is it the norm ................xxxxxxxxx

Thaleias spirit
1st January 2008, 03:23 PM
Hi Simon,

The cannula in the neck you mention sounds like a Central Venous Cathether (Central Line) http://en.wikipedia.org/wiki/Central_venous_catheter (is that it?)

I don't remember anyone else here talking about having one so I'm thinking its not a very common thing to have (correct me if I'm wrong people) but I did have one inserted after my surgery. The reason I had it done was I got very sick and was unable to eat/drink anything so they I had it inserted. Through this I received all medications and nutritions until my system was working properly again and I was able to eat, I had it for a week.

chele

Simon
1st January 2008, 03:32 PM
thanks am not so sure either i think thats what it sounds like
think its the same as a normal line.
hope your ok sorry to hear you was sick after
what happened??????????????

Thaleias spirit
1st January 2008, 03:42 PM
Well my bowel stopped working and the whole system blocked up so anytime I tried to eat/drink I got sick. Plus I had infections on top pf it all which didnt help.

so they took me off all foods, inserted a nasogastric tube in my nose to empty the stomach and a central line in my neck to give me whatever I needed to stay hydrated plus give me medications to clear the infections.


Not everyone gets that sick after surgery though so don't worry. I've read plenty of stories here where they have been in and out in a week without any hassle (and of which I'm still totaly envious).

Simon
1st January 2008, 03:51 PM
sorry to here that hope your better now they said i would be in about a week.
what hospital did you have your op done at and how long was you down theater.
sorry about all the questions

Simon
1st January 2008, 03:53 PM
p.s
i have some really intresting photos can i send them to you to put them on this site
thanks

Thaleias spirit
1st January 2008, 04:02 PM
Originally posted by sibowainwright@Jan 1 2008, 03:51 PM
sorry to here that hope your better now they said i would be in about a week. what hospital did you have your op done at and how long was you down theater. sorry about all the questions
No worries about all the questions ... ask as much as you would like ...


Im actually living in Ireland and had my operation done in Dublin. I had a 2 stage surgery, the first stage took approx 4 hours and the second stage approx 12 hours.
I was in hospital for a month but like I said that was because of the getting sick etc. I would have been out faster otherwise.

Simon
1st January 2008, 04:17 PM
16 hrs blimey
thats long ...............

Thaleias spirit
1st January 2008, 04:50 PM
when you add it altogether like that yeah .. but the was a week inbtween each operation so not too bad .. (easy for me to say I dont remember much of it .. my family found the waiting tough though)

GillyG
1st January 2008, 05:19 PM
Hi Simon,

I've posted a welcome in another thread but thought I'd chat a bit more to you here. :-)

Nikki has given you a great guide of what to expect, although as she says, everyone's experience tends to be slightly different, depending on the surgeon's preferences and hospital facilities.

My surgery (for scoliosis) lasted about 8 hours, and I also had spinal cord monitoring throughout, although I must have been out cold when they attached the wires to my scalp! :P I was transferred to a high dependency unit for the first night and then taken back to the ward. I woke with a PCA machine attached (which allows you to self-administer Morphine but don't worry, it's set up so that you can't OD!), a drain from my back wound and a catheter. All were removed by day 3-4 when I was up and walking - well, more like shuffling at first to be honest! :P I came home from hospital on day 8 and the journey was a killer :-o - make sure you have plenty of pillows/cushions at the readyfor then.

My recovery has been a little slower than the young 'uns (I was 49 when I had my surgery), but I returned to work on a phased return at 4 months post-op, built my hours up very slowly and I'm doing great now :D I have never had a brace, either before or after surgery. I think they tend to be used more in younger patients as extra protection while the spine fuses, which takes about 6 months to a year.

From what I can gather, the op for kyphosis is very similar to what I had, but is a little more complicated as they sometimes need to cut out the little wedges as Toni mentioned, making the process and recovery a bit longer.

So, hope that helped a bit, and keep asking questions - we'll help in any way we can :spin:

Take care,

Gilly xx

Simon
1st January 2008, 06:06 PM
thank you gilly that was very informative am looking forward to getting a new back but not to the recovery.xxx

GillyG
1st January 2008, 06:47 PM
Well, you know what they say - 'no pain, no gain'!!!!

Easy for me to say now I'm at the other side of the fence, but we'll all be here to help you through it. I didn't find this site until after my surgery but it's still been a huge source of comfort, information and friendship for me.

jamielynn
1st January 2008, 08:34 PM
My surgery is planned for the summer, not really looking forward to recovering instead of vacationing. :cry:

Simon
1st January 2008, 09:53 PM
am not sure really what to expect
i have seen my dad in intensive care after his heart bypass operation and that scared me..... but hey no pain no gain xx

MOB
1st January 2008, 10:43 PM
Hi just wanted to welcome you to sso. :squeeze:
Muriel

Simon
1st January 2008, 10:54 PM
thank you so much

Little Ali
1st January 2008, 11:35 PM
Hi Simon,

:welcome: I wrote you a long reply earlier and then managed to delete it so here goes again... I had one of the canulas in my neck after my first fusion 13 years ago but not after the last one. I was moving around again after a couple of days. The pain control I had was fantastic. I had a morphine pump for the first day when I was in ICU but then I had oral pain meds every 4 hours and the odd dose of morphine when I had pain in my ribs.

I had a couple of drips in each hand, a catheter and a chest drain (for a few days) My first fusion was around 12 hours and the more recent one 4 and a half.

Take care

titch
1st January 2008, 11:46 PM
Well, I don't know whether this will be comforting or not, but having seen my father in hospital after a triple bypass also, and having had 2 surgeries (not a staged one, 2 separate surgeries 8 years apart) I think I can safely say you won't feel any worse than your dad did :P I hope that is actually comforting in a way, if you see what I mean..... :oops: :idiot:

Regarding the central line, I don't think most people have them left active for long after surgery, but I definitely had one with my first surgery as I have a small scar from it. That one was removed in Intensive Care before I was transferred down to the ward. With my second surgery it was actually left in for about 3-4 days, perhaps a day more - I'm not entirely sure, but it was defintely still in the first couple of times that I walked a short distance, but gone by the time I was managing to get to the toilet and back under my own steam (I remember that because the dressing they taped over it was done while I was lying down, and I found out when I got up to go to the loo that I couldn't look up to see where I was going properly as it was stuck from the underside of my chin all the way to my collar bone, taping my head down :lol: )

Simon
2nd January 2008, 12:00 AM
thanks little ali (love ya name) and thanks titch..
seeing my dad go though his trible heart bypass was a shock as soon as i saw him in icu i had to walk out am usually ok with all that think it was a dad thing seeing your own family.
my mum does not want me to have my operation as she is very nervous and worried about it.
she understands why i have to have it done as she has been with me and supported me all my life with it.
Am hoping to keep in contact with you all when i do have it done am hoping i can nominate one of you superb people to keep everyone updated on my progress though my family.
xxx

Simon
2nd January 2008, 01:07 PM
hi everyone
its wensday the 2nd of january and am feeling a little nervous about my pre op thinking "are they going to cancel"
I think i have been though so much and had a few things cancelled that am thinking well this would be the icing on the cake if they done that.
I have done everythink they asked me to do (stopped smoking 20 weeks ago on the tablets they asked me to go on)
guess am just worring for nothing
(i keep feeling and looking at my back incase any spots want say hi am hoping that they stay were they are PLEASE)
sorry am having a rant he he he.
hope everyone that reads this has a safe and wonderfull 2008 xxx

jamielynn
2nd January 2008, 05:52 PM
Don't be nervous, I hope they don't cancel again.
If I were you and they kept canceling on me I would make a huge stink about it!

Simon
2nd January 2008, 06:05 PM
i kicked up a fuss when they cancelled it in nov but i understand there reasons for it as i had a few spots on my back and they can cause infection. x