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mjt8
22nd November 2006, 02:20 AM
Hi, I am new to your site and am wondering if anyone has myeloma related kyphosis. 5 and 1/2 years ago at age 38 I was diagnosed with mutiple myeloma (a bone marrow cancer). At the time I was 5'8", less than a year later I was 5'1" due to 4 vertrabrae collapsing and 2 fractured. I had a proceudre called kyphoplasty done twice with no success. I have an 83 degree kyphosis with causes with constant pain. I am wondering if there is any type of surgery available. I saw a local neurosurgeon who said that he could not put in a rod due to the dismal condition of my bones. I guess I am hoping for a miracle. Any thoughts would be appreciated. Thanks, Mary Jo :angel:


Sorry, I do not know the proper way to reply. I live on the East Coast in Portland Maine. Thanks for the help and support.

titch
22nd November 2006, 11:08 AM
It sounds like you've been through an awful lot :(

To be honest, I don't know what procedures would be available to you, but I would recommend finding a good adult spinal deformities surgeon near you. There are now neurosurgeons who can deal with some of this, but there still are not very many of them, and they don't have the same kind of experience and training as orthopaedic surgeons.

If you let us know roughly where you live, we may be able to suggest some surgeons/hospitals to contact - a good spinal unit will have dealt with many different causes of spinal problems. When I had my last surgery, there was a woman in the bed opposite me who had had emergency surgery for collapsed vertebrae in her neck (secondary to a recurrence of malignant melanoma) and next to me an elderly woman who had a lumbar vertebra collapse due to osteoporosis. Both were making extremely good recoveries and in fact I think the older woman had more energy than most of us less than half her age :lol: So while there are no guarantees, it seems that at least getting an opinion from a top centre would be worthwhile. If nothing else, if there are things which can be done to relieve your pain, that would have to be a good thing.

Meanwhile, I'm sorry for the circumstances that have brought you here, but :welcome2:

mark
22nd November 2006, 12:30 PM
Hi Mary

:welcome: to SSO, i'm sorry to read about the problems you have been facing. I'm afraid like titch i have not any knowledge in regards to the issues you are facing. However as titch says if you tell us where abouts in the world you are we may be able to put you in touch with a specialist who may be able to help

Once again welcome to SSO we are have a great support network on the site so feel free to post anything you like and hopefully someone should be able to answer your question. I hope you can find someone to help

take care

mark

Nancy_doc
22nd November 2006, 02:01 PM
Hi Mary,
I'm so sorry to hear this!..
First you need to find a specialist as Titch says. Maybe an anterior strut grafting or cage reconstruction with post op radio/chemotherapy will be effective.
Welcome to SSO.

Little Ali
22nd November 2006, 10:47 PM
Hi, Just wanted to say :welcome2:

I'm sorry to hear everything you've been through and the trouble you are having!

This is a great site and I wish you lots of luck with finding a way to ease your pain! :squeeze:

Mandy
23rd November 2006, 07:22 AM
There is an orthopedic surgeon in NYC who is reguarded as one of the best. His name is Dr. Boachie-Adjie (SP?) He works out of the Hospital for Special Surgery. You can also look at www.srs.org to find a scoliosis surgeon near you, but make sure that you call and find out that they have experience with ADULT scoliosis and complex cases such as yours. Good luck finding a surgeon and a solution. Sounds like you have been through a lot and you deserve a break.
Mandy

titch
23rd November 2006, 10:20 AM
I'll second that, Dr Boachie-Adjei is always top of my list to suggest that people visit :D

netty
23rd November 2006, 01:53 PM
Just wanted to say hi and welcome.You've been through an awful lot, my thoughts are with you, Netty

titch
23rd November 2006, 08:46 PM
Hi again Mary Jo :-)

If you scroll to the bottom of the screen, you should see that the thread ends with a series of links:
<Next Oldest | Kyphosis, Lordosis and Flatback Room | Next Newest>
Below that are some buttons, Add Reply, Fast Reply and New Topic and below that again is the Fast Reply box.

To reply all you need to do is type into the Fast Reply box, and hit the Add Reply button under it :-)

As to surgeons, the best known highly skilled surgeons with a lot of experience dealing with complex problems in adults who are (moderately) close to you are Dr Frank Rand in Boston, and Dr Boachie-Adjei in New York. There is also Dr Thomas Errico who works out of New York and New Jersey and I believe Dr Jean-Pierre Farcy is based in the same region.

If you can (and are willing to) go further afield, other good doctors to get an opinion with would be Dr Mike LaGrone in Amarillo, Dr Keith Bridwell in St Louis, Dr Anant Kumar in Denver and Drs Serena Hu and Sigurd Berven in San Francisco.

I know it must sound like everything is a long way away from you, but unfortunately as an adult with a particularly complex case there just aren't that many surgeons who are really qualified and skilled to deal with it. If it will be too expensive for you to travel, I may be able to get some advice and information from someone I know on another list who helped a woman who used Angel Flights to see her surgeon in Denver, so there may be ways to get to distant appointments :-)

mark
29th November 2006, 11:31 PM
Here are some links that may be of some use

http://www.myeloma.org/main.jsp?newsletter...sletter_id=1121 (http://www.myeloma.org/main.jsp?newsletter_type=detail&type=query&tab_id=13&menu_id=0&id=6&newsletter_id=1121)

http://www.clinicalgeriatrics.com/article/6343

http://www.neurosurgery.pitt.edu/spine/pdf...kypho_cyber.pdf (http://www.neurosurgery.pitt.edu/spine/pdf/nf_kypho_cyber.pdf)