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View Full Version : Scheuermann's and post-traumatic kyphosis, age 52 surgery?



nan
06-15-2005, 06:10 PM
I am a 52 year-old female. Until two years ago I had never heard of kyphosis. In 2003, I had a rapid deceleration accident which caused 20-30 degree compression fractures of T11 and T-12. I had never had back pain before but have suffered from chronic pain since the accident. The radiographs showed that I also had Scheuermann's kyphosis, never diagnosed as I had never had pain or a reason for back radiographs. My curvature is in the 60 degree range and increasing as is my pain. I have frequent pain radiating around my torso and at times have pain while trying to take a deep breath. My posture has never been picture perfect but since the accident it's certainly gotten worse. My doctor has told me that I will eventually need surgery to stop the increasing curvature and to reduce the pain. I am frankly terrified of having rods put in my back(from approximately T-1 to T-12.) But I am in increasingly more pain and taking more and more medication. I have also had a sudden increase in my blood pressure which may be explained by chronic pain or could it be from changing postural pressure? I also have developed some intestinal and esophageal inflammation most likely from meds but again, could it be from postural changes. They also discovered a syringomyloma(sp?) in my spinal cord from T-4 to T8 which is probably due to the trauma but could have already been present. It has not changed in the past two years since it discovered 3 months after the accident.

I was in perfect health until this accident and now it seems as though the wheels have fallen off. Does anyone out there suffer from anything similar?
I know most people are diagnosised at an early age and I might not have ever been diagnosed if I had not had the accident. What about a first surgery in your 50's. I had always heard that you shouldn't have back surgery until you had to crawl into the surgeon's office. I think I'm getting close. I am also under the impression that few people get away with only one surgery and that many people are just as much pain or more after the fusion surgery. What is a girl to do?

LindaRacine
06-15-2005, 06:50 PM
Hi Nan...

Actually, the vast majority of scoliosis surgery patients only have to have one surgery (or two if they have A/P surgery). There's just no need for those who have one surgery to seek out patient forums such as this. Although I don't think there are any studies that show outcomes for adult patients with kyphosis surgery, you can find links to a bunch of surgery outcomes studies on my website:

http://www.scoliosislinks.com/Outcomes.htm

In addition, here's another study:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15830215&query_hl=1

Since your kyphosis is actually relatively minor (kyphosis in the normal back is between 20 and 50 degrees), I suspect that it's doubtful that it could be causing all of your other symptoms. It could be causing your pain, as could the compression fractures.

I personally think the medical community isn't doing us any favors by telling us things like not to have spine surgery "until you had to crawl into the surgeon's office." Sometimes, surgery really is the best treatment. My recommendation would be to get a second opinion to be certain that you've been diagnosed correctly, and that you've chosen the right surgeon. If you let us know where you're located, someone may be able to recommend another surgeon in your area.

By the way, I think it's pretty common for people to feel like they're falling apart when they hit their 50's. :-)

Regards,
Linda

Lavinia
06-16-2005, 11:51 AM
Just to say that I'm 6 months post-op for spinal fusion for scoliosis - my fusion was T2-T12, so quite like your possible surgery. It's nerve-racking beforehand and a long recovery, but I'm improving all the time and very glad I had the surgery. Do ask any questions you want.

Best wishes, whether you have surgery or not,

Lavinia

Helen64
07-27-2005, 08:47 AM
:rolleyes: :rollyes: I thought that i would post my thoughts and hopfully make some friends with in this site.
I am a 40 yrs young woman, i have been diagnosed with this rotten disease 6 years ago, i had a car accident and thats how it was found. A huge answer to why all my teenage years where clouded with pain! now the pain is chronic and i am at my wits end. I for the past years just put in for my medication ( not to often) as i am a marter to my pain ( or was) things are so bad now that i have begun visits to my Gp or should i say a new one mine left!
Guess what? i went to see this lovely Gp and when i told her what i had she said" thats something you get with your eyes" isnt it???? this is the gospel truth! well you can imagine what was going through my head hu????? oh no!!!! yeah that was it, NOT!!! i was thinking oh god help me is this my GP!!!!
Well to cut along story short i am no further forward no one in my GP practice knows anything about his disease so what am i to do???????
Helen

zerodegrees
07-28-2005, 05:44 AM
Helen,

What a nightmare! The nhs service here in the uk is definetely "hit or miss"! I have Scheuermann's (36yo male) and am due to have surgery in about 8-9 weeks time(aaaarrrggghhh!).

I was given the flick by my gp for many years until my persistance paid off. There are several experts in the uk though you may need to travel. I have chosen to have my surgery with Mr JK Webb @ Queens Medical Centre in Nottingham. They have a dedicated spinal unit & he is an expert in dealing with structural problems in spines. He has a particular interest in Scheuermann's.

The best way to see him is to call him to get a private appointment (cost about 150), you'll need to get your gp to do a referal letter to take with you. Once you've seen him, if hes the right man for the job then he can put you on the nhs waiting list.

Scheuermann's can be painful & depressing. There ain't a lot of support out there but this forum is a great way to connect for support & advice:) I am about to undergo my surgery soon & have a mix of both terror & excitement to keep me company.

I hope this info is of some use to you.

Helen64
07-28-2005, 02:29 PM
Thank you for your reply, i am most grateful for the information. Nottingham is somewhere i go for short breaks as i have connections with people there. I was at the Gp today, saw a different one. Waste of time really! No one knows anything about what we have there, i am most fortunet that i dont have a stoop or a hump, i am in chronic pain with this disease and the lastest thing is that all my joints are extremly painful too, do you have that? My leg gives me a huge amount of pain a bit like a restless leg. Cant keep it still or it draws something terrible, i think i have a trapped nerve. The Doc sat as i chatted and the feeling i got was he thought i was kocky! as i asked if he knew anthing about Scheuermanns?? he was not happy about that!! although he has reffered me back to Derriford hospital to see a Orthapedic Surgeon again. I know there is a change in my body as my back feels as though i stoop when sitting. I also feel as though my rib cage is moving forward! is this ringing any bells. When i wear a bra ( not that you know about that LOL) it feels as though my ribs are holding it and it causes me loads of discomfort.
Well i have probably bored you by now so i will close. Keep in touch will ya and let me know how your getting on!!!
Helen

Helen64
08-10-2005, 06:59 AM
I have previously posted but i dont seem to be asking the right things as no one ever replies! Boo Hoo" i feel alone as my gp is les than cooperative, he knows nothing about this disease. My previous gp has left and he was so helpful, this new one on my first visit to him was " scheuermanns is that something to do with your eyes" ???? i ask you please is this a sign of what i am up against??

I was diagonsed 6 years ago and i am expereincing new problems can anyone through some light as to whether they are connected with my disease??? i have been feeling as though my rib cage has moved forward! as when i wear a bra it is so painful also i am expereincing chronic pain in my elbows knees and hips and feet! i read somwhere that osteoarthritus can come on early due to the scheuermanns is this right???? i have bone on bone crunching in the knees and i am feeling so down as i had little movement before and now its getting worse due to the other bits failing as well, please could someone enlighten me what symptoms are for oestoarthritus
Helen

carebear23
08-10-2005, 05:19 PM
I hope you find a doctor that can help you get checked agian. It could be progressing.. either that or ask your current gp to refer you to someone who is more specialized in your situation.

He might not know much himself but maybe he has connections? Just a thought.

Best of luck!

Karen Ocker
08-11-2005, 11:01 AM
Helen:

If ALL your joints are hurting I recommend seeing a rheumatologist to rule out a rheumatic or auto-immune problem which requires non-surgical treatments.

Let us know how it goes.
Karen

sweetness514
08-11-2005, 03:29 PM
Just want to say that orthotics can be of tremendous help for leg/knee/feet/hip/lower back pains, as it cured a LOT of mine.

Helen64
08-13-2005, 12:25 PM
Helen:

If ALL your joints are hurting I recommend seeing a rheumatologist to rule out a rheumatic or auto-immune problem which requires non-surgical treatments.

Let us know how it goes.
Karen
How sweet of you to reply, thank you and to the others. I have had a letter from the hospital saying i will be seen in 17 weeks or there about! i think i have osteoarthritis, i have been diagnosed with scheuermanns 6 years ago and that causes enough pain on its own.
will let you all know how i get on Helen