adult patients

[jullie]

I am new to this but I really want to get in contact with someone who is going through what I am. I had my spine fused when i was 13 I'm 28 now. I found out that my curve went form a 90 degree curve after surgery to a 100 degree curve now. I am on o2 24/7 and still have problems breathing because of my poor spine. if there is someone who is going through this let me know.

[Mobee211]

Hi Julie- I am exactly your age and was diagnosed at 13 as well...or 14...cannot remember. I have not had surgery but my curve is rogressing and I will likely have surgery in the future. I know there are a lot of people on these boards who are having revisions though...youa re not alone!

[Wishing]

Dear Jullie,

Welcome to the Forum and I am sure you will fine excellent guidance here. I too have severe scoliosis with a 90 degree curve after correction at age 16. However, I am now 63 years old. Medical science has come a long ways since I was young and now treatment for scoliosis has improved by leaps and bounds. I think it is imperative that you get yourself to an excellent spine surgeon who is experienced in revision surgery and reconstructing the severe scoliotic spine. Many patients with severe problems have been treated by Dr. Boachie in New York, a veritable magician of a spine surgeon. Also, there is Dr. Lawrence Lenke and Dr.Keith Bridwell in St.Louis, Mo. There are some others in believe in Texas, possible Baltimore and Pa. I know there are only a handfull of major centers in the U.S. that are experienced in treating these severe spine issues. The above surgeons mentioned deal with these issues constantly, are world renowned and have experience in dealing with the severely pulmonary compromised patient as a result of scoliosis. You are way too young to suffer like this much longer. I had given up over the years on getting help and fortunately found at this late date that I can be helped. It is important to note that with severely compromised breathing, it is imperative to get help ASAP. I wish you every success in getting excellent help and do continue to share with us about your progress. There are many wonderful people here who can offer advice and support.

[nzgirl]

Hello, I am 27 and have just had a revision surgery. My curve wasn't as severe as yours, and nor do I experience breathing difficulties but I thought I would introduce myself anyway as being someone who at a young age has faced a revision. I'm based in New Zealand, where there aren't really any people that have had revisions, or if they have they've been much older. I've found a lot of support on the site, although I really have learnt that there are no two people alike in their experiences! I really hope things go well for you.

[jullie]

update

I wanted to update everyone on how I"m doing I still do'nt now if I should try to find A new spine surgon because my lungs are realey squishedand are failling and all the hospitals are fare from families every time I bring uf the topic to my doc.s they tell me I should live out my life because I could end up worse than I am. I am realey depressed because it is no fun watching your life slip away.

[TraumaScoli]

Brace

I am new to this but I really want to get in contact with someone who is going through what I am. I had my spine fused when i was 13 I'm 28 now. I found out that my curve went form a 90 degree curve after surgery to a 100 degree curve now. I am on o2 24/7 and still have problems breathing because of my poor spine. if there is someone who is going through this let me know.

Jullie, I have not had surgery but are in a similar situation. I am 36 and my breathing and my motor skills were in jeopardy due to the fact that I could not get surgery. I was fitted for a Milwaukee brace, to keep my pain down and my lungs safe. Granted, its a rigid, large, bulky brace but it along with excercise has kept me free of breathing problems and of paralysis. I do not have any rods in my back, I guess mine are on the outside. I feel terrible about your situation. I was just suggesting you look into a support system that can free some space up for your lungs, its what I have to do. I too remember the doctors saying that surgery can be worse. I should try to live with it. This brace was a Godsend.

Good luck

Kevin

[Susie*Bee]

Julie-- my heart goes out to you-- and any others with severe problems like those you are experiencing. I don't know who you have seen-- but there are so many very qualified, board certified specialists out there who deal almost exclusively with scoliosis cases-- you may have one of them. If you don't-- if yours is a spine specialist, but not experienced with more severe scoliosis problems, then maybe you should move on and see someone else. There are also some who are so very experienced, even with extreme revision cases, that it might be good for you to try to contact one and see if they would consider surgery in your case. Maybe someone who knows some of them (I'm thinking like Dr. Boachie or Dr. Lenke off the top of my head, from reading on the forum...) would have some suggestions. I also know that sometimes the risk is too great. I will be praying for you.

[Jenlw]

Jullie,

You are very young to feel like you need to live life in pain. I really think you should seek several opinions to see what can be done for you. My heart goes out to you, no one should have to deal with the pain. Where are you located? Maybe someone here could recommend a doctor to you for a second opinion. Even if you have to travel, I think it would be well worth you time.

Best wishes to you!!