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Sami
03-28-2013, 05:54 PM
4.5 yrs ago I started to feel stiffness and pain that moved around between different part of my back and legs. Imaging showed only scoliosis T 45/ L35. After 2 yrs of trying pt, accupuncture, massage and injections without benefit, I did the surgery and was fused T4-L1. My symptoms got worse and now 2.5 yrs later they are still getting worse. I have so far seen 16 drs of different specialties, but nobody knows what is going on. I take 3 muscle relaxers and narcotics for pain and I can do little. I don't know what to do or where to go. Totally lost

LindaRacine
03-28-2013, 10:30 PM
Hi...

Are you in Dallas or Plano? The doctors that do a lot of complex spine surgery are Michael O'Brien (Plano), Isador Lieberman (Plano), and John Herring (Dallas), as well as Mike LaGrone in Amarillo. If you haven't been to see at least one of them, I wouldn't give up just yet.

--Linda

Kat3573
03-29-2013, 10:56 AM
Are you exercising enough? My surgeon says that when individuals don't exercise it results in back pain and stiffness but this goes for everyone, not just people like "us"

Sami
03-29-2013, 05:14 PM
Hi...

Are you in Dallas or Plano? The doctors that do a lot of complex spine surgery are Michael O'Brien (Plano), Isador Lieberman (Plano), and John Herring (Dallas), as well as Mike LaGrone in Amarillo. If you haven't been to see at least one of them, I wouldn't give up just yet.

--Linda

I'm in Tulsa, OK. Dr. Hostin, the partner of Dr. O'Brian, did my surgery. He was very optimistic and the surgery took only 4 hrs. I'm never sure if what I have is due to surgery or some other problem. I've seen every kind of specialist I could think of and did so many tests, but nothing shows up.

LindaRacine
03-29-2013, 10:43 PM
Assuming that your problems are not in your head, you just haven't found the right specialist yet. You might want to try Keith Bridwell or Larry Lenke in St. Louis.

jrnyc
03-29-2013, 11:36 PM
i am wondering what X rays show...??
also, the suggestion about seeing Dr Lenke..
it seems he solves problems many others cannot figure out...
it seems like a smart suggestion to me...

hope you feel better...please do not give up...
every problem has a solution...
you need the right guy to solve yours...

hope you feel better...
jess...and Sparky

Sami
04-02-2013, 08:35 PM
Assuming that your problems are not in your head, you just haven't found the right specialist yet. You might want to try Keith Bridwell or Larry Lenke in St. Louis.

I called Dr. Lenke's office and talked to his assisstant. He only sees pts with more severe deformities than mine as if severe debility and loss of functionality do not matter. She suggested his student Dr. Zabala. I want the best of the best because my situation is quite confusing.

Confusedmom
04-03-2013, 12:37 AM
What about Dr. Bridwell? I think he has a lower threshold, and he works with Lenke. And also I thought Lenke would see revision patients with smaller curves? (Most people aren't going to meet his 70 degree threshold after having surgery?)

Also, have you had a CT scan to check for non-scoliosis related problems?

Sami
04-05-2013, 05:38 PM
What about Dr. Bridwell? I think he has a lower threshold, and he works with Lenke. And also I thought Lenke would see revision patients with smaller curves? (Most people aren't going to meet his 70 degree threshold after having surgery?)

Also, have you had a CT scan to check for non-scoliosis related problems?


I have had several MRI's that showed nothing. I don't know if CT scan shows different things.

Dr. Lenke's assistant refused to grant me an appointment despite all my begging and poor quality of life. Sometimes I feel lost between the world of the living and that of the dead. I have vital signs, but can't do much to keep my pain and stiffness at a reasonable level.

Confusedmom
04-05-2013, 06:45 PM
Did you explain that you would be a revision patient -- that it's not your first surgery?

golfnut
04-05-2013, 07:43 PM
I think Evelyn (confused mom) made a good suggestion. I would call again and stress that you have already had surgery and have extreme problems. Maybe you told Dr. Lenke's staff . . . if so, I don't understand why he wouldn't take you as a patient.

mabeckoff
04-05-2013, 10:02 PM
Sometimes you have to be pushy to get what you need

jrnyc
04-05-2013, 10:42 PM
i agree with the two posts above...
also...babyboomer was a revision patient, yet Lenke did her surgery
and didn't seem to object to doing a revision...

another thing...every now and then it can help, when long distances on
telephone are involved, to exaggerate a little...it isn't fair that patients
should need to do that, just to get in to see a surgeon, but it is sometimes needed and can often help the patient to get the first meeting with the surgeon...

good luck...
jess...and Sparky

Sami
04-09-2013, 08:34 PM
I think Evelyn (confused mom) made a good suggestion. I would call again and stress that you have already had surgery and have extreme problems. Maybe you told Dr. Lenke's staff . . . if so, I don't understand why he wouldn't take you as a patient.

I will try again and hopefully be more successful. I'm really frustrated. All the people I know believe, this is the way my back will be. It's hard for me to accept that this very limited pain-filled life is the end of the road. I'm only 47.