Need revision surgery

[wilela]

Hi - I'm new to your forum and will try to make this short. I had a fusion 40 years ago in the thoracic region and now have a lumbar curve. I have diagnosised myself with flatback ( has just recently been confirmed by a doctor) but no doctor in Ontario, Can. will operate on me. I am in constant pain even with continuous codine and can only walk short distances and am always bent over, my legs also bother me. Does this sound familiar to anyone out there? Have you found a good doctor that has helped you? Thanks for any info or help you can give me.

[LindaRacine]

Hi Wilela...

If you were only fused in the thoracic spine, then you probably don't have flatback.

Unfortunately, it's difficult to find scoliosis specialists in Canada, who treat people with prior fusions. Is there any chance you could afford to come to the US for treatment?

Regards,
Linda

[Llweyn]

I have been living on codeine as well, with pain in the legs (especially the right). I finally got the neurology test results and have confirmed that there is some nerve damage from the S1 with a referral to a neurosurgeon since I'm 6 months into a 3 year wait list for the revision specialist in Vancouver. Since you are in Ontario, a friend recommends "A great doctor not just a good doctor is Dr. Michael Ford, 43 Wellesley St. East, Toronto, ON M4Y 1H1 416-961-3978 his secretary is Kathy and believe me you need the name of the office staff in order to set up appointments I have spoken to both of them and he will see patients from the association as long as they have all of their info together such as the medical history and all other medical info including xrays from the entire time possible and recent it seems that people do not realize they are able to request a set of any xrays taken of course there may be a nominal charge but they records belong to the person and a copy of anything can be gotten so always tell them to make sure that they have all off this before setting up an appointment with a specialist." Hope this helps and this friend is also the Ontario Chapter president of the Scoliosis Association and she might be able to give you more information. Let me know if you would like her address if you can't find it.

[wilela]

Thank you Linda for your reply and info. Why do you think that I probably don't have flatback? What do you think my problem might be with the leaning forward and the inability to stand straight? That is my biggest problem - I am constantly looking for something to hang on to since I feel that I struggle all the time to remain upright. It really bothers me that all I can do for exercise is walk on a treadmill since with that I have a bar to hang onto. My doctor and I are looking into our private coverage and provincial coverage to see if they might help me pay to be looked at by a doctor in New York.

Llweyn - I have seen Michael Ford and he does not want to do surgery on me. His associate, Dr. Finkelstein, diagnosed me with flatback and also refused to do anything surgical. He said the risks outweigh the benefits. He did surgery on my daughter last year for lumbar scoliosis she's had as a child. They braced her and it didn't help, at 35 years old she still needed surgery and it was really hard on her. Her incision runs from back to front and although she looks much straighter, she still has quite a bit of pain. It seems the doctor was more interested in her looks than her pain which was backwards to her expectations. I'm scared of surgery after what she went through and I don't want it if the pain will be the same but I would love to be able to walk straight again. Also, I'm 55 years old and not in the best physical condition. Does my problem sound anything like yours? I would like your friend's address for the Ontario chapter of the Scoliosis Association. Thanks for all the information.

[LindaRacine]

Hi Wilela...

I'm confused. In your original post, you said you diagnosed yourself as having flatback, but in your message to Llweyn, you said that Dr. Finkelstein diagnosed you as having flatback.

Flatback is the loss of lumbar lordosis. Since you weren't fused in the lumbar area, I believe that the only way you could have flatback is if you have severe degeneration in all of the lumbar vertebrae and discs. Have you been diagnosed with osteoporosis?

Anyone with degeneration in the lower lumbar area can have the same symptoms as someone with flatback. My L3-L4 disc is blown, and when I've been too active, I look just like my friends who have had flatback.

Regards,
Linda

[wilela]

Hi Linda -

If you look at my first posting you will see that while I did diagnose myself (by reading many articles) with flatback, I also mention that the diagnosis had recently been confirmed by a doctor - Dr. Finkelstein.
The way it was explained to me is that the Harrington rod that was put in my thoracic spine was straight (when you look at my body sideways) instead of having the natural curve that a normal spine has. This has put undue pressure on all my lower discs and vertebrae causing degeneration in the lumbar area. This is what I was told is flatback by Dr. Finkelstein who also told me that the risks outweigh the benefits and he will not do surgery. I have read of many people out there (mostly USA) who have flatback and have had revision surgery, some successful, some not, and that's why I'm wondering why I'm such a big surgical risk. I often wonder why they cannot just do another fusion in the lumbar area without undoing the thoracic fusion - it has given me no problem. I realize I would be unable to bend but it would be a small price to pay to reduce the pain and be able to stand upright.
One 60 year old lady from N.J. told me (she had a successful revision surgery) that the successes have no need of forums and that's why they rarely are seen on the internet. I realize every case is somewhat different but it would be nice to actually see a doctor that is familiar with revision surgery and has done many of them and at least get another opinion.
I get up in the morning in the stooped position - activity just makes it worse. I have been checked for osteosporosis and was told I don't have it. Does this clear up my situation?

[LindaRacine]

Hi Wilela...

I honestly don't think you have flatback. Again, flatback is the loss of lumbar lordosis (which is the curve at the small of the back, just above the waist). What you have sounds like the degeneration that is common in people with scoliosis fusions. If you can get pictures of your coronal and sagittal x-rays, I'd be happy to get a doctor who specializes in the treatment of people with prior scoliosis fusions to look at them.

Here's an article about flatback that might be helpful:

http://www.spineuniverse.com/display...rticle308.html

Regards,
Linda

[wilela]

Hi Linda -

I know my latest x-rays are on computer files in Toronto but I don't know if it would be possible to have them e-mailed to me. I will try and find out.

If what I have is degeneration, what is the normal treatment and is it possible that they could do another fusion that would allow me to stand straight? How does the surgery differ between flatback and degeneration?

The article you sent me is very informative and the problem exhibited by the patient is exactly like my problem. At the present time my biggest problem is finding a qualified doctor to evaluate me. Thanks for your interest and information.

Wilela

[LindaRacine]

Hi Wilela...

I'm not very conversant in the treatment of degenerative (denovo) scoliosis. Because of the poor bone quality, I suspect that there is a lot more involved in fixing it.

Regards,
Linda

[Jane]

Just had 2nd surgery

Hi:

I just had a second surgery in April 2003 and had mine done at Grand River Hospital, Waterloo, Ontario. You can ICQ me at 31390608 if you want to know more details about who did my procedure, I am quite happy with this surgeon.

Jane

[wilela]

Hi Jane -

I don't understand how I can get in touch with you - but I am very interested in finding out all about your surgery. Could you explain to me how to go about contacting you? Thanks, Elaine

[Jane]

Elaine - as per how to contact me...

Hi Elaine:

I sent you an e-mail yesterday but my e-mail contact address has been made public. You my contact me at jcode1068@rogers.com or by communicating via ICQ at 31390608 - my handle there is "chanie" - I stay online in invisible mode so that doesn't necessarily mean that I'm not there, just screen those who wish to communicate with me - alot of wackos using that messaging program...

Look forward to communicating with you soon.

Jane

[Sally]

Are there any specialists for scoliosis in Va? OR surrounding states? I had back fusiion 6 years ago and still have a great deal of pain 24/7. I have the use of my left leg again, but I can't do all of things that I want to do.

[LindaRacine]

Hi Sally...

Although I don't know him, or know any of his patients, John Abbott Byrd, III has been trained by some of the best scoliosis surgeons in the US. You can see his background here:

http://www.atlanticortho.com/doctors/byrd.html

There is also Donald P.K. Chan, although I don't know for sure if he treats adults:

http://www.healthsystem.virginia.edu...il.cfm?drid=72

You definitely want to find a surgeon who has a lot of experience treating patients with prior scoliosis fusions.

You may find that you're going to always have pain if you're participating in activities that put a lot of stress on your back. Have you tried backing off from activities to see if your pain subsides?

Regards,
Linda

[Sally]

Thanks Linda -

I'm 54 so I am not really trying to act like a teenager. i want to work in my gardens, walk on the beach, things like this without pain. My new Dr is going to try something new tomorrow. New to me. Under Floriscope, he will go in at L1 thru L5 and put in meds to reduce the swelling and hopefully the pain. Will let you know what happens next week.

Thanks.