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guybrush
11th September 2007, 11:35 AM
Hi,

i have 80 deg kyphosis, and some lordosis and scoliosis !

at 32 years, i have finally (after much effort) been seen by a consultant at RNOH stanmore (S Molloy) - he has suggested spinal fusion surgery. I have been sent for a mri and have to go back to see him in a month or so. Would i have to make a decision then??

After years of being told there is nothing anyone can do to help me i was somewhat shocked to be offered surgery! Made me very sad, rather than excited. I have been doing pilates and my pain is quite low (certainly tolerable), I have only had back pain for 2 years.

The thought of an operation just terrifys me.

He was talking about a 3 week stay in hosp, 2 operations, and upto 6 months recovery time!

Anybody been through this, and can offer any advice it will be much appreciated. I have about a million questions to ask if anybody has the time to listen

Thanks in advance - G

pink_candy_swirl
11th September 2007, 11:43 AM
YUP! My main problem is scoliosis but I have lordosis and kyphosis as well! I had the operation in one go but it lasted 9 hours (got it right this time, I always say shorter lol).
Ask away with the questions. Everyone's operation is different but I'm sure I'll be of some help. I always have time to listen.
Ask away!
Oh and do you know how many degrees your scoliosis is?Or how many scoliosis curves you have, I don't know the degrees of my kyphosis ect, only my scoliosis. Also where abouts is you scoliosis curve, it will help me understand the other two.
Hope I can be of some help.

Nikki x x x

tonibunny
11th September 2007, 01:26 PM
Hi Guybrush!

There are many people here who have been through surgery and come out smiling :-) Kyphosis surgery is generally more complex that scoliosis surgery, and there are fewer people here who have had it, but those that have seem well pleased with the results.

Surgery is a scary prospect for anyone, but we're all here to help you through it if you choose to have it done :-)

The "six months recovery time" doesn't mean you'll be out of action, sitting still for months on end. Most people feel back to normal a lot sooner than that, but after six months your spine should be totally fused, which means you'll be able to do practically everything you did before.

Of course we have time to listen to your questions! That's what we're here for, so fire away :D

Keep smiling!

Toni xx

GillyG
11th September 2007, 03:39 PM
I can sympathise totally with the shock of having surgery suggested after years of being told nothing can be done! That's exactly what happened to me except mine was for an 80 degree scoliosis curve and I was 49 at the time! :shock:

From what I understand, surgery for kyphosis is very similar to that for scoliosis, although kyphosis seems to be a bit more tricky, possibly because it isn't as common?

We're all here to help answer any questions you might have as best we can. Make sure you are as informed as possible as it will help you to decide whether surgery is for you. Make a note of everything you want to ask Mr Molloy at your next appointment and write down his answers so you don't forget them! (Amazed Jean also gives the same advice, perhaps it's just us who can't remember anything?!!)

Only you can make that final decision but, something to bear in mind, is that your condition won't get any better, is likely to get worse as you get older, and you will heal and recover more quickly the younger you are.

Good luck! 8)

Gilly xx

Amazed Jean
11th September 2007, 05:05 PM
Hello and welcome. I hope we can be of some help. I have had neither surgery or brace so I can't offer specifics on them. I can also tell you that my curves started out in the 50+ range and I now have three substancial curves that have not been treated. Mainly I listened to the wrong doctors that said nothing could be done and not to worry about it. That gets me where I am today on oxygen full time and wearing a bipap machine at night. My curves just got worse and worse and I have a fair amount of pain. My heart and lung functiion is what they term "compromised" to the point that it is far too risky for any surgeon to undertake now. I would say if you are able that you should definitely consider having surgery if you get the chance. You don't want to wait 20 years and find out you can't do anything. Since I discovered this site I have yet to hear from anyone whose curves(s) don't "progress" if left untreated. On the positive side there are many people here that have great outcomes from having spinal surgery. Some I am afraid get so much better that we don't get to hear from them after their recuperation. They are just out having normal life - which is great.
As Gilly said I reccommend getting a notebook to write down questions and concerns as they come up. Keep the notes with you so you can note down answers when you see the consultant ( I always forget half of what the doctor tells me so having a note saves me wracking my brain at 2 AM) Also you should try to get copies of any xrays or scans or lung function tests or take photos of them. You won't beleive how often those kinds of things get lost in clinic. If you have copies you are saved from those hassles. Clinics etc. are pretty cooperative when you ask to take a photo of an xray etc. Whew! Again i wrote a book when I really mean to just welcome you and wish you well.

guybrush
25th September 2007, 01:13 PM
Sorry for the late reply. I have letter explaining the fusion but dont have it at hand, will post what it says soon.

Doc did not tell me what degree of scoliosis i have, its more of a kink than an s shape, from the x-rays i'd guess 10 - 20 degress maybe, i'm not sure - but will ask when i go back.

My questions so far:

post op, how much of a mental strain are things? the doc asked if i was strong mentally (id say no)

I was told i would need two ops, one for 'cages' and another a week later, I would be in hosp for about 3 weeks. How long will it be before I will be up and about and do things for myself? I am not good at 'waiting' and i know the longer it is before i am able to do stuff for myself the more i will worry.

How much does it hurt ! ! ? I am not good with pain and most painkillers ive had so far dont really agree with me.

How long before i can go back to work? as i have said, i get bored really quickly, and will worry horrendously if i cant get on with things

i have been to stanmore for my mri and dexa scan but felt it was somewhat 'run down' would someone please tell my its nice inside the wards? please...

how much looking after will i need? will i need full time care when i get home?

How long do you wear a brace?

more to follow i'm sure

Thanks in advance - G

Amazed Jean
25th September 2007, 10:08 PM
Take a really depth. It takes a while to absorb what has been said at the doctors office. Others who have had surgery will log on and be able to help with your questions and concerns. It's normal to be a bit confused and overwhelmed. Hang in there.

Phil
2nd October 2007, 04:59 PM
Hello guybrush. Welcome and again, welcome to the road you could possibly take. In Dec 2005 I had surgery for fusing my kyphosis. Again, I had compensatory scoliosis and lordosis. My curves measured around 75 degree kyphosis, 35 scoliosis. At this stage easy as it may sound go with the flow. Take everything in, maybe keep a notebok/diary. Also absorb all the help around you.

I had 2 surgeries like you would possibly have. Both lasting 8 and 7 hours. I did not have to wear a brace but many do. I needed full home care from the first 4 weeks once being discharged.

Do you need to be mentally strong? I dont think it matters really. I would class myself as very mentally strong but the surgery broke me more than once. You dont know how you will be untill you go through it.

As I say, at this stage just go with the flow. Ask lots of questions and give yourself time to adjust.

Good luck :)

Kentish
10th October 2007, 02:37 AM
Hi Guybrush

Welcome to the site. First off, I dont think anything is as bad as the day they tell you that you need surgery and what it involves. Yes its a shock and it takes a while to sink in but things improve. You dont need to have made a decision by the time you next see your specialist. It would help if you knew so that they could get the process in motion but if you havent made your mind up, tell them that and ask if you can confirm with them later. Just because we dont pay for surgery in the UK, doesnt mean that your not the customer so ultimately you decide if and when it happens.

I had my surgery for Kyfoscoliosis in 2001. It wasnt as bad as I was expecting. They were able to do both my surgeries on the same day and was nicely asleep during the whole 12 hours. You would be in charge of your pain relief for the 1st 3 days or so and I made sure that I had no pain. You will then be encouraged to walk around this point if everything has gone to plan and hopefully out of hospital after a week.

I was lucky that I was able to go stay with my mum for 2 weeks although at no point did I need help for anything like bathing etc. I think preparing food may have been too much to do on my own and was very helpful to have someone to go to the chemist for me but dont think that you're gonna be relient on someone else. I only stayed with my mum for 10 days in the end as I was desperate for my life back so went back to my own flat.

As for whether you need to be mentally strong, I dont think you really know how strong you'll be till it happens. When I went for my surgery, I was taking anti-depresants so didnt think I was that strong but soon started fighting for my old life again. You sound like you would miss your independence and thats the best thing for getting you up and out again.

I was back to work 2 months after my surgery and yes it did hurt a bit and probably didnt need to go back that soon but I think you are the best judge of whats best for your physical and mental health.

Just 2 years after my surgery I went back packing for a year which I never would have been able to do before the surgery due to the pain it would have caused.

I hope this has helped a bit. There are a lot of us here that have been in your situation so dont be scared to ask questions. Its so easy to be shell-shocked when your with your specialist and forget all the questions you meant to ask.

Jose Curvo
14th October 2007, 10:51 PM
I was 20 when I had the surgery, so I'm not sure if that's why my stay in the hospital was only 3 days rather than 3 weeks. I was told my healing time would take anywhere from 6 months to a year, but I was really only out of it for about a month. I could start driving after a month, and after 3 months I was told I could go back to working at Kohls. My shoulders hurt from time to time, but I'm currently in physical therapy to hopefully help that out. The surgery wasn't too bad at all, I was on great pain killers and there were only a few times were I felt pain. It's been 5 months since my surgery, and I've been feeling fine, besides the shoulder pain every once and a while. If you have any specific questions about anything feel free to ask!

guybrush
30th October 2007, 01:59 PM
i would say most of my pain comes from stiff muscles. and i don't mean like when you have done too much excercise and they ache. its difficult to explain but its like they just go rock hard (mainly in my back) and then if i put pressure on them, i.e. leaning back in a chair, they hurt. if am not sure whay causes it and its really difficult to explain - the specialist said they were being overworked all the time.

But recently I have been having another issue with my upper back, again tricky to explain but its a bit like being winded. i dont find it difficult to take a full breath in, but as i breath out it is uncomfortable - not painful though, just 'wrong', like a crushing feeling of sorts - is this familier? It is made worse if i do somthing that involves leaning my head forwards instead of being upright - like reading for example.

G

Little Ali
30th October 2007, 07:00 PM
Originally posted by guybrush@Oct 30 2007, 01:59 PM
i would say most of my pain comes from stiff muscles. and i don't mean like when you have done too much excercise and they ache. its difficult to explain but its like they just go rock hard (mainly in my back) and then if i put pressure on them, i.e. leaning back in a chair, they hurt. if am not sure whay causes it and its really difficult to explain - the specialist said they were being overworked all the time.

But recently I have been having another issue with my upper back, again tricky to explain but its a bit like being winded. i dont find it difficult to take a full breath in, but as i breath out it is uncomfortable - not painful though, just 'wrong', like a crushing feeling of sorts - is this familier? It is made worse if i do somthing that involves leaning my head forwards instead of being upright - like reading for example.

G
Yep...I know exactly what you mean. My neck, shoulder and upper back muscles go rock hard and I just become one big knot!! It's really uncomfortable.

I've also had the 'crushing' feeling when breathing but that has gone since I had the surgery.

zerodegrees
8th November 2007, 04:34 PM
hi, I had surgery to correct kyphosis 80 degrees and scoliosis in oct 2005. You can find some of my posts from those days in the historical areas. My surgery was about 15 hours and was done in one go. My recovery was about 6-8 months but as toni said it is a graudual recovery so after a few weeks you can start regaining your life albeit quite "ginerly"!
I am completely thrilled with my correction and it was the best thing I have ever done (and possibly the scariest!)
You'll get plenty of support around here so ask as many questions as you like.
cheers
john

guybrush
14th November 2007, 01:38 PM
can you tell me how long i will be unable to work? ish? i can imagine telling my boss i wont be back for 6 months being very dificult ! he will not be happy and it will greatly impede any future promotion i might be due - hes not very understanding!

also, what questions should i ask the consultant?

apart from, pain, how long til i can look after myself, risks of having surgery, and risks of not having it done etc..

i have had my mri and due to go see him in december.

mark
16th November 2007, 08:28 AM
Johns right, you will probably be off from anywhere from 6 - 9 months depending on size of fusion, your capacity to recover and various other factors.

The average return to work time from what i can gather reading posts on this and other sites is around 6 months.

Sarah
21st November 2007, 08:46 PM
Hi

I had kyphosis surgery in 1995 @ 14yrs old, so quiet a while ago now. But I have also had a scoliosis surgery 1st when I was 7 so I know how different the 2 were (I don't know if it was because of age or the difference of the curves)... and like toni says somewhere here, kyphosis can be more complex.

For me though, my scoliosis surgery was a great success. But my kyphosis didn't get much if any correction as the surgeon that did mine didn't want to risk it on my spinal cord to straighten it and the curve was stiff, it was more or less stabilised and fused. When I asked my kyphosis curve had held fused at 85 degrees. But most do get excellent corrections.

I had to wear some cast afterwards for about 3 or 4 months for the kyphosis but I was out of school for a good while, simply because of my scar and the school was crap for getting knocked to often.

I don't think it took me that long to get more or less back to normal, it was just the time to let you body settle down after the surgery and get used to the new posture and learning to do everything that was 2nd nature before. I think it took me 2 years or less to be completely back on track, as I could get the odd twinge telling me I hadn't done it in a while.

Everyone gets wobbly at the mention of an op, but go for it, if that's what you want and ask lots of Q's to your surgeon. :-)