When to demand revision???

[jamie77]

Hello everyone!

I'm new to the boards here. I've actually been reading threads for a few years, this is my first time posting.

Let me give you a some background info. I had fusion surgery in 1991 with harrington rods, I'm fused from T2 to L4. I was corrected from 103 degrees to about 54 degrees. I'm unsure of the exact degree of the curvature now, but it is still severe.
About 3 years ago I started having severe sciatic pain in my right leg. It was bad for a long time. So bad that I would have dizzy spells at times and feel like I was going to pass out. Still to this day, my entire right foot and almost my entire right leg are numb from the nerve compression. I don't have the pain so much anymore, because I have stopped doing the things that cause the pain, like working out. Now I'm starting to gain weight, which I really, really hate.
I have had two surgeons tell me I need the revision surgery to go ahead and fuse to the sacrum, but I need to wait until I'm older. I'm 33 now.
I really don't understand the concept of waiting until I'm older and neither of them have explained it to me. They have both diagnosed me with disc herniation and stenosis at L4 and L5. I did find one of the surgeons on the SRS that everyone here recommends.

Now I have also been diagnosed with a Chiari Malformation and RSD in my right foot. I'm really thinking that now may be the time to go ahead and get the revision thing out of the way? Any suggestions would be welcome.

[LindaRacine]

Hello everyone!

I'm new to the boards here. I've actually been reading threads for a few years, this is my first time posting.

Let me give you a some background info. I had fusion surgery in 1991 with harrington rods, I'm fused from T2 to L4. I was corrected from 103 degrees to about 54 degrees. I'm unsure of the exact degree of the curvature now, but it is still severe.
About 3 years ago I started having severe sciatic pain in my right leg. It was bad for a long time. So bad that I would have dizzy spells at times and feel like I was going to pass out. Still to this day, my entire right foot and almost my entire right leg are numb from the nerve compression. I don't have the pain so much anymore, because I have stopped doing the things that cause the pain, like working out. Now I'm starting to gain weight, which I really, really hate.
I have had two surgeons tell me I need the revision surgery to go ahead and fuse to the sacrum, but I need to wait until I'm older. I'm 33 now.
I really don't understand the concept of waiting until I'm older and neither of them have explained it to me. They have both diagnosed me with disc herniation and stenosis at L4 and L5. I did find one of the surgeons on the SRS that everyone here recommends.

Now I have also been diagnosed with a Chiari Malformation and RSD in my right foot. I'm really thinking that now may be the time to go ahead and get the revision thing out of the way? Any suggestions would be welcome.

Hi Jamie...

I would be concerned about demanding surgery from a surgeon who is recommending that you wait. Instead, you might want to find another surgeon. The pain in your foot was reason enough to do the surgery some time ago. Now, I would be very concerned that the numbness and RSD are permanent, and revision may not hold the same benefits that it would have 3 years ago.

Where are you located?

Regards,
Linda

Where are you located?

--Linda

[jamie77]

Hi Linda,

Thanks for the reply.

I am in Dallas, TX. My surgery was done at Scottish Rite Hospital back in 1991. The surgeon I'm leaning toward now is Dr. Richard Hostin at the Baylor Scoliosis Center.
He told me that with a fusion as long as mine, revisions have to done about 90% of the time. I don't remember my original surgeon telling me that was a possibility. My mom doesn't remember them telling us that either. It's really frustrating. I didn't have any issues for such a long time. I've been pretty active up until the past few years and now almost everything I do puts me down for days at a time. Needless to say, it's driving me crazy. I have a 4 year old and a full time job and just hate feeling useless.

I guess "demand" was a bad word choice. It's just I feel that sometimes you have to take charge of your own medical issues. I feel that doctors don't always listen as much as they should.

[naptown78]

Jamie,
It's very true that you need to "drive" your own medical care. Nobody will do it for you. If you feel that waiting is not an option for you, do tons of research and get more than one opinion. Be proactive, keep in touch with the members here. There is no better place for support and information ;-)))

Good luck in your search for care...

[Lue]

Hi Jamie, I had surgery in 2002 in Pa. and it was good for 8 years, now the Dr. who did surgery back then is sending me to Johns Hopkins, for revision (May 9). and June, He does not do revision, I have flatback, and can not stand upright for more then 2 min. without holding on, and the pain is bad, so maybe you need to see another spine surgeon. It was last thing I though I needed , but now I know I do. good luck Lu