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sally333
4th September 2005, 02:17 AM
I was thinking that there was someone on here that could give me some information on kyphosis surgery.I found out the other day that my kyphosis is at 107degrees.I found out that I will be having surgery as soon as they can get all the surgeons together.It will be two paarts done at one time.First threw my side and the other down the back.I will be fused from T2 to L4.I will be in icu for two to three days with ng tube chest tube and all the other things that come with this surgery.At first we thought the degree of the curve was 60 and I was told to think about the sugery then and now that they took the proper x-rays and found it at a 107 degree they say how really very serious it is and that the surgery is very serious and that it is major.I am waundering of the pain I will be in after,and just any info any one has.Im no young chicken but a 36 year old one.

Jonny
4th September 2005, 03:02 AM
Hiya Sally - welcome to SSO :wave:

That's certainly severe kyphosis you have. You've found the right place, as not only is scoliosis treatment virtually the same as treatment for hyperkyphosis and hyperlordosis, we have two members with Scheuermann's Kyphosis, at least one of whom is waiting for surgery :-) Slight scoliosis is common with kyphosis - do you have any?

I'm 17 and had surgery for idiopathic scoliosis (and also for significant kyphosis and lordosis) in last July and this March.

It's certainly major surgery, but it's generally successful, and very much worth it. How much pain you're in depends on your body, your surgery and the success of the pain relief, and while it's unpleasant, it doesn't last for ever. Pain should never be a reason not to go through surgery, and in most cases patients are in less pain three or four months post op than they were pre-op.

I'm fused T1 to L3, which is the same length fusion as yours, and while I'm not that flexible, the stiffness doesn't bother me.
You describe an anterior/posterior surgery, which many of us have had, including me. If you'd like to know anything about it specifically, we'll all do our best to answer.

Oh, and chickens of all ages have the surgery - surgeons will operate up to age 80!

Tell us more about yourself :-) where abouts are you based?

Have a read of our forums, especially the material written by Phil and Mark, as they have kyphosis as their primary condition, and Phil is also waiting for surgery for his.

Enjoy your time here! :D

Amazed Jean
4th September 2005, 08:23 AM
Sally,
Welcome to SSO. You'll like it here. We have all sorts of wonky people - I am 54 years old, have Idiopathic Kypho Scoliosis - three curves 150,88 an 55. I have never been braced or otherwise treated. I am probably too late to do much surgically at this point because of my poor lung function. I am hoping that some of you younger people are getting their scoliosis treated so you may avoid the breathing problems I have. I understand being a "chicken". I can "cluck" with the best chickens. Just don't be a stupid chicken - get some opinions and get someone you trust. Hang out here awhile and ask questions. Lots of good info here.

titch
4th September 2005, 11:58 AM
:welcome2:

As Jonny has mentioned, the treatment for kyphosis is very similar to the treatment for scoliosis, so we should be able to help a bit :-)

My first surgery was done in 2 stages, through the side to remove discs and loosen the curve, and down the back for the main fusion. However, my original fusion for my scoliosis was very short, and unfortunately I developed a thoracolumbar kyphosis as a result of it. When I was 29 I had a revision surgery to deal with the kyphosis, and the fact that by that point I was leaning to the left as well. Because the kyphosis was fused in place, with anterior as well as posterior fusion, they dealt with it by taking osteotomies (bone wedges) from the back of the spine - when the wedges were closed, it pulled me backward into alignment. As it is now, I'm fused T3-L4, very similar to what is planned for you.

Having your body configuration changed that much is quite something. Because my kyphosis, which was approaching 50 degrees, was at the back of the waist, being changed from having that part of my back stick out to having it actually dip in, in a 30 degree lordosis, felt so weird I really can't describe it. I actually felt as though I must be lying with a pillow under the small of my back!

Going through it all at the older age was harder than with my initial surgery, but in the end has been well worth it. One of the biggest changes has been that I don't get neck ache nearly so much as I used to when I was having to crane my neck all the time. I am quite stiff as a result of the long fusion, but actually I was getting increasingly stiff before the surgery anyway, because of all the inflammation and pain, and the fact I was developing bone spurs as my body tried to fuse itself as a response to the problem. It's a longer road to recovery as an adult than a teenager, but even so - they'll probably tell you that you'll be feeling so much better at 6 weeks, and if you're anything like me, no matter how much you may disbelieve them at 4 and even 5 weeks, you'll suddenly find just as 6 is coming up that you really do :D

Again, welcome to the site :-)

BeckyH
4th September 2005, 12:03 PM
i can't speak much for the surgery you're going to have because i'm only fused T11-L3, however, that was only 7 weeks ago and titch is right - you never believe somebody who tells you you'll feel a lot better but i started to really improve just before i hit 4 weeks post op. the downside to you with all this? i'm only 18. but i do think the recovery is better than you think it will be. it's frustrating and seems painfully slow but you tend to notice the baby steps you take.

welcome to SSO, i'm sure you'll find it useful here for gathering information and getting support from others

Phil
4th September 2005, 02:30 PM
Welcome Sally. I have a 70+ degree kyphosis with scoliosis and compensating lordosis. I am hoping to go into surgery November time. Have been waiting since February. I am also having two stage surgery.

I had extreme difficulty in getting someone to operate on me, where are you having your surgery done?


I highly recomend this place for support and advice, they are all great!

sally333
4th September 2005, 04:01 PM
Ok-I just got home from work.I don't think I will be going to work tonight because the pain is just to much,and the only way to get relief is to just lay around and rest for a few days.I have been in pain for a number of years and did my best to hide it.The last year has been the worst and I can't hide the pain anymore,this is why I finally have to do something about it.I have never been to the DRs for this kyphosis before and I don't think that the DRs are very amused by this.At this point I am in a angry stage.I am mad that I didn't have it taken care of when I was alot younger,or even when I was old enough to have it taken care of on my own.I can't help to think had I done something sooner I would have never gotten to this point.I am not scared of the pain of the surgery as I know it will be a good pain because it will then finally go away.The pain Im in now will be here forever if I don't have the surgery and that I couldn't accept.So surgery is hope.I first went to a neuro surgeon who told me there was nothing wrong with me,and that really makes me mad.That was in Feb.Had I lisened to him my quality of life would not have been tolrable.I now saw a ortho doc who actually gave me the time of day and is going to do surgery right away.I am just asking how the surgery goes and how people have felt after.What should I expect,what can I do,what kinda restrictions are there when your home,things like that.I live alone and just wonder how easy it will be to recover.How long one is off work,things like that.Im actually a ERnurses aid and have seen just about everything.I know things will be better after.I also am familar with most of the medical terms,tubes ivs caths so all that doesnt scare me,makes me not want any of it but it helps to know all that stuff,so that does makes things easier I guess.Well this is just getting to long,dont want to bore anyone so mabey I wll write more at a later time.I was going to go threw and correct my spelling as I am very poor at it as you can see,but Im to tired and I think you all get the point.Thanks for all the timely replys.I am impressed by this site.And one question I forgot to answer is yes I have scoliosis also,but I dont think it is to bad.I don't know the curve degree The kyphosis is the whole back or looks like it anyway.So that is what the doc is mostly concerend about.

sally333
4th September 2005, 04:23 PM
I guess I do have a couple of more things to ask.
Problems are I have so much pain when I walk,I end up walking bent over after awhile because of the pain.Friends of mine keep telling me I need to walk,they don't understand how come I can't at times.I can't even make it around the block.The painfull walking was the first most painfull thing that came with this kyphosis.
As time has gone by now it is even very painfull to stand or to sit.When I sit in a chair I can't sit up straight as the pain is so intence I end up sluched foward.Are these problems sounding familiar with anyone?How do you help your friends and family understand this.They make me feel so lazy.I know im blowing alot of steam but I have never talked about my problems to anyone before so I guess its all coming out now.So thanks for taking the time to read this.

tonibunny
4th September 2005, 04:30 PM
Welcome to SSO Sally! :welcome2: :D

I'm so sorry that you're feeling so bad right now, and I hope that you are able to have a nice relaxing evening. If you look in the Common Room, somewhere near the top there's a sticky thread full of hints and tips about what to expect from surgery, so hopefully that will answer some of your questions, and we're always here to answer any more specific questions you might have. Also, you'll be able to get great feedback from Phil when he has his surgery in a couple of months time :-)

Whereabouts in the world do you live?

tonibunny
4th September 2005, 04:38 PM
Originally posted by sally333@Sep 4 2005, 02:23 PM
Are these problems sounding familiar with anyone?How do you help your friends and family understand this.They make me feel so lazy.I know im blowing alot of steam but I have never talked about my problems to anyone before so I guess its all coming out now.So thanks for taking the time to read this.
Hi Sally,

Sometimes it is so difficult for friends and family to understand the discomfort and stress that scoliosis/kyphosis can cause :( I've even emailed digital copies of my x-rays to my friends at work before, so they can see that when I am off work because of "back pain", there's a good reason for it!! I'm so glad that you've found SSO because lots of us understand exactly how you feel, and we're always here for when you fancy letting off steam :squeeze:

Toni xxx

titch
5th September 2005, 10:55 AM
Kyphosis is a form of Fixed Sagittal Imbalance - there's another form which is common in the scoliosis world, that occurs in some people as a result of old style Harrington rod fusions, called flatback (the Harrington rod literally flattens the back, so reducing the kyphosis too far, and if it extends into the lumbar region also flattening the lordosis there).

Something which seems to be true of any form of Fixed Sagittal Imbalance is that it is very fatiguing. As Toni has said, it can be very difficult for friends and family to understand that there really is a problem. Once I realised what was wrong, I tried to show a family member what the problem was, and got the reply "Well of course your back will look bad if you stand like that", and people just didn't believe that I could be having the kind of pain that I was, or that I could have gone from being someone who would cheerfully go on a 20 mile ramble to being barely able to shuffle round the supermarket. I know for a long time I actually really believed I was being lazy and if I would just work harder at exercising, surely it would get better. Of course, there was no way that it could :( Has it made any difference to people's opinion to know that the problem is a bad enough one for you to need surgery for it? It seemed to help a bit with my lot when they realised that there really was a medical cause for it all, and that I wasn't just making it up or exaggerating it.

I think you will need to try to arrange for assistance for a few weeks to help you to recover from the surgery. Initially you are likely to be very restricted in terms of what you can do for yourself. It sounds like you are US based? I know that quite a few of the hospitals that do large amounts of revisions have affiliated rehab centres where you can stay for a few weeks, both to recover more and to be taught new ways of dealing with things and living with your new body. It could be worth finding out if there is anything like that at your hospital - it could make all the difference of having support for long enough to be able to manage on your own once home.

sally333
5th September 2005, 01:53 PM
I see how family and friends have been.I have actually been going threw this for several years,and now that I have finaly chosen to do something about it,and will ahve surgery set up soon,people are looking at it differently.I was just venting cz there is no one to vent to here and I could not do that to my friends.I have shown some my x-rays and it has gotten a little better but this has just been since Friday that I saw the ortho doc.I actually work a the hospital I will be having surgery at and they are droping my plan a insurance in Dec so as they understand this I will not have to wait long for the surgery.So now I have a 107 degree curve and when it is fixed he thinks it will be 40 degrees.That is a big jump.As far as having someone around,I was told I could be home by myself but will be in the hospital for about a week.I will just take it eazy and have people come over and help with what I cant do.The idea of being in a hospital swing bed program is a good idea for some.They do have one at the hospital I work at but trust me I would rather be in my own bed and learn to dela with it myself.Every day it will get easier and if a few days of bed rest is what it takes,I dont mind watching tv 24hrs a day while I recover.Just so I am at my own home.This site is very help full and thanks for all who are replying I guess I didnt rally expect it.This is great knowing when I am feeling down or confused I can come on here and read this ,thanks everyone and yes I am from Minnesota.

sally333
6th September 2005, 03:32 PM
I still haven't heard how everyones surgery went and how they did after.Just how long it takes to recover,what the first few weeks are like being home.Things like that.Is there alot of pain right after surgery how long does it last,when do you feel good again.Any experiences would be very helpfull.
And I thank enyone and every one for sharing.

Thaleias spirit
6th September 2005, 09:53 PM
Hi Sally,

If they could reduce your curve from 107 to 40 that would be great.

I have a 155 degree thoracic curve so my kyphosis is severe.
I'm seeing a consultant about it and currently we are just monitering the situation.

I understand the frustration you feel though. My pain started to become an issue about two years ago but the last few months have realy seen a change. Somedays I just have to stay lying down to relieve it. Its very frustrating when it happens.

Feel free to rant as much as you need to. Many of us here felt we couldn't really talk about it until we found people who understood exactly what we were going through.

chele

sally333
8th September 2005, 07:21 PM
Originally posted by Thaleias spirit@Sep 6 2005, 07:53 PM
Hi Sally,

If they could reduce your curve from 107 to 40 that would be great.

I have a 155 degree thoracic curve so my kyphosis is severe.
I'm seeing a consultant about it and currently we are just monitering the situation.

I understand the frustration you feel though. My pain started to become an issue about two years ago but the last few months have realy seen a change. Somedays I just have to stay lying down to relieve it. Its very frustrating when it happens.

Feel free to rant as much as you need to. Many of us here felt we couldn't really talk about it until we found people who understood exactly what we were going through.

chele
Have they not offered you surgery yet?I don't understand at that curve size why they would be watching it and not fixing it yet.It is dangerous to le let it go.
My bigest problem is that I just can't walk very much do to the pain.The longer I am on my feet the worse it gets.Even things like washing dishes and thigs you do everyday irratate the pain.
The pain at my point is not the real reason for the surgery it is what is happening inside me.Your lungs,heart and other organs are getting squashed in there and that is why it is so serious.
That is why I question your DRs for not doing more now?

Thaleias spirit
8th September 2005, 08:50 PM
Sally,

Its because the curve is so large that nothing is being rushed into.
At this point surgery will only be done i there is evidence of nerve damage to the spinal cord.

My lung capacity and heart have been monitered and both are pretty good. It doesn't look like the scoliosis had done any damage there.

If surgery was to be carried out it would be in two parts and would involve halo gravity treatment. Also the fact that the thoracic curve is so large they also need to bear in mind that the spinal cord is also stretched. Too much too fast could give me more problems than it's worth really.

There's also the fact there is no proper medical history on my scoliosis.
My first set of xrays were only this year.

So it's nor harm to moniter for a while and get a proper record of how I'm coping with it.

chele

sally333
9th September 2005, 06:38 AM
Originally posted by Thaleias spirit@Sep 8 2005, 06:50 PM
Sally,

Its because the curve is so large that nothing is being rushed into.
At this point surgery will only be done i there is evidence of nerve damage to the spinal cord.

My lung capacity and heart have been monitered and both are pretty good. It doesn't look like the scoliosis had done any damage there.

If surgery was to be carried out it would be in two parts and would involve halo gravity treatment. Also the fact that the thoracic curve is so large they also need to bear in mind that the spinal cord is also stretched. Too much too fast could give me more problems than it's worth really.

There's also the fact there is no proper medical history on my scoliosis.
My first set of xrays were only this year.

So it's nor harm to moniter for a while and get a proper record of how I'm coping with it.

chele
May I ask what your age is?
I guess every doctor has his own way of doing things.

I also have never had any other treatment.I had my first set of real x-rays Last Friday at the orto docs.I do have a degenrative,progressive form.So they figure.He said at my age this is not right.There would be all kinds of problems in the future if this surgery is not done.My surgery is also going to be actually two.The first threw my side so they can get at the front and the second threw the back,and is very large that it would be fused and roded t2 threw L4.My spine is already presed into my esophagus and aorta.I am short of breath already due to the fact that the lungs are kinda tight with the rib cage.I am on kadian(morpheen)50mgs twice aday with lor-tabs for break threw pain.I still have severve pain when I am on my feet for to long or just siting here at the computer.I miss so much work because of the pain I am in.I work in a emergency room,which requires alot of walking.I don't know where your from but the halo traction here is a thing of the past.
Do you see a ortho doctor?Do you think having the surgery would be better for you know,I mean the curve is serious and as we get loder it will get worse.You know the gravity thing,are disk dry out and osteo arthritius and things that come with age.My doctor can't understand why I didn't seek treatment sooner and stresses how serious it is,and it is not even as bad as yours.
Aren't you in alot of pain,do you work,are you on any pain meds?

tonibunny
9th September 2005, 01:58 PM
Hi Sally,

Just thought I'd mention that Halo Traction is still used, although rarely, in especially severe cases in the USA. For instance, it is recently been used to treat severe forms of infantile scoliosis at Shriners Hospital in Salt Lake City, Utah.

Toni xx

sins
9th September 2005, 02:06 PM
I spoke to a consultant about two years ago and while we were discussing my early treatment with Halo tibia traction, he told me that halo traction was now almost obsolete but there were rare circumstances where Halo Gravity traction is used now.
I suppose with progress in anterior surgery and newer segmental instrumentation, stubborn curves can be tackled more effectively.In Thaleia's spirit's situation, the risk attached to doing surgery on such a large curve is that the spinal cord will not respond well to correction as it's so curved.The Halo traction may offer a slower controlled correction of the curve over a week as opposed to a sudden sharp correction of fifty or sixty degrees in one go during the surgery.
Sins

sally333
9th September 2005, 04:39 PM
Originally posted by sins@Sep 9 2005, 12:06 PM
I spoke to a consultant about two years ago and while we were discussing my early treatment with Halo tibia traction, he told me that halo traction was now almost obsolete but there were rare circumstances where Halo Gravity traction is used now.
I suppose with progress in anterior surgery and newer segmental instrumentation, stubborn curves can be tackled more effectively.In Thaleia's spirit's situation, the risk attached to doing surgery on such a large curve is that the spinal cord will not respond well to correction as it's so curved.The Halo traction may offer a slower controlled correction of the curve over a week as opposed to a sudden sharp correction of fifty or sixty degrees in one go during the surgery.
Sins
Thanks for everone replying on this.I know some doctors in some places must still use the traction,All I know and is aware of is they do not use it where I am from.
I had my first real kyphosis x-rays taken and measured on Friday September 2nd,and my first ortho doc apoitment right after they were done.He measured my x-rays that day in front me me and took down my medical history.I never had ever gone to the doctor for this before this was my first vist ever.I have a large and serious curve of 107 and he thinks it can be taken down to fourty.Mabey I am being rushed into this to fast,the surgery will be withen weeks.Mabey I should be getting a second opinion now I am worried that it is to fast,My pre op is Sepatember 16th.This is serious and major surgery and is also two surgerys done at once,threw the side and down the back,it already has been planed at the one vist.What would you all do get a second opinion?You actually got me worried on this wait and watch it stuff however my pain is far to bad to wait i guess.This has also caused many disc buldges.

tonibunny
9th September 2005, 05:12 PM
Hi Sally,

Having two operations at one is nothing to be alarmed about, it's quite normal to have a 2-stage procedure and I think that most people here who have had surgery will have had this done.

The first operation, as you know, is done through the front at the side. This is called an "anterior release", and involves removing discs so that the vertebrae have more space to move into when they are straightened out. Sometimes an anterior rod is put into the front too.

The second operation will be a posterior fusion, where the instrumentation is put into place.

You will be having a long fusion, but again, this is not abnormal. Myself, Abbi and Jonny all have fusions of that length, and there are probably quite a few others here who do too. So don't let that worry you :-)

Thaleia's Spirit has been told to watch and wait because hers is an extremely severe case, and surgery may be dangerous to do without monitoring her for a while beforehand. After years of very poor quality treatment by the health service in Ireland (they have a notably poor track record as far as scoliosis treatment went in the '60s and '70s), she is finally being seen by a top scoliosis surgeon and we have every confidence that she's now in the best hands. I am sure she'll reply herself when she gets in from work.

If you are very worried then having a second opinion may help to reassure you, but it sounds like you have a very good doctor there - and he's confident of getting you a great correction! :D

Toni xxx

sins
9th September 2005, 05:16 PM
let's see what we can do to help you sort things out in your mind?
I think getting a second opinion is a very good idea.I suspect the second doctor will recommend surgery also ,as 107 degrees is quite a wicked curve.The only question really,Do you want this doctor to do it?Are you happy with his experience in kyphosis surgery and large curves?
It seems like in your situation, your quality of life is suffering very badly and the surgery represents your best shot at having a normal life.
Discuss with him the risks and possible complications.
Who is the doctor? maybe we can find you some information on him.Is he based in Minnesota?
Sins

titch
9th September 2005, 06:22 PM
The revision surgery I had to correct the kyphosis I developed took me from somewhere over 45 kyphosis, to a 30 lordosis, so that was at least as much correction as your doctor is hoping to get for you. Possibly the biggest difference is that because of the anterior fusion and the postion of the kyphosis, a lot of the correction was gained by cutting a large osteotomy (bone wedge) from the back of my spine. However, as long as they are careful, and spinal monitoring is used, very good correction can be achieved, especially when they are able to "soften" the curve over a lot of vertebrae, which it sounds like they are able to with you, given the length of fusion they are expecting to do.

With the amount of pain that you are in surgery will hopefully improve things considerably for you :-)

Thaleias spirit
9th September 2005, 08:19 PM
I see most of them have explained the reasons for not doing anything just now ...
They actually explained it better than me... :hammer:

Sally I'm 32 .. I work full-time and until about 2 years ago I had no real problems with my scoliosis. It was only when I actually found out more information that I went about having an appointment.

In the past two years though I have noticed a changed reagarding pai .. unfortunately it has gone from occuring on a random basis to a daily basis.
Im just taking things easy.

My gp and respiratory consultant are keeping a close eye on everything at the moment.

If you have any other questions please feel free to ask :-)

Chele