Looking for a surgeon

[Betty B]

I am 60 had Harrington Rods t4-L4 at age 27, then a revision L4-5. I continue to have radicular pain through my right SI joint radiating down my right leg.
What about all this laser surgery, and pain management. I would prefer not to have another surgery.
Who should I see. I live in Florida but will travel to find the answer.

[jrnyc]

hi Betty
welcome to the forum....
there is much support here from good people...

i do not understand what you wrote...laser surgery is still surgery....
so i don't understand if you are really looking for a surgeon or just a good pain managent doctor...

i have a pain management doctor in NYC...
i also had a pain management doc in CT, where i live now...he gave me SI joint injections that gave me
a lot of pain relief...however, the shots he gave me in January were too much steroid all at once...
as a result, i now have severely low cortisol...it is one side effect of steroid injections...
i am not having any more shots, and am getting more blood work done mid month, to see if my
cortisol is improving at all...
low cortisol causes EXTREME exhaustion....

but...that is not to say that shots shouldn't be considered...i got wonderful pain relief from the SI joint
injections, and nothing else ever worked for me...not epidural injections, nor facet block, nerve
ablation, or any other of the shots they tried with me...
i should mention that i have not had spinal surgery...ever...yet....
and no doctor could figure out why the SI joint shots worked...i was just glad that they did...
i expect the pain to return now that i will not be repeating the shots....

best of luck...i hope you find a pain management doctor who can help you...they are not all
surgeons...i had one who is an anesthesiologist...
there is a chance that you do need a surgeon for revision surgery....perhaps you need to see
both a surgeon and a pain management doctor....

jess

[Betty B]

hi Betty
welcome to the forum....
there is much support here from good people...

i do not understand what you wrote...laser surgery is still surgery....
so i don't understand if you are really looking for a surgeon or just a good pain managent doctor...

i have a pain management doctor in NYC...
i also had a pain management doc in CT, where i live now...he gave me SI joint injections that gave me
a lot of pain relief...however, the shots he gave me in January were too much steroid all at once...
as a result, i now have severely low cortisol...it is one side effect of steroid injections...
i am not having any more shots, and am getting more blood work done mid month, to see if my
cortisol is improving at all...
low cortisol causes EXTREME exhaustion....

but...that is not to say that shots shouldn't be considered...i got wonderful pain relief from the SI joint
injections, and nothing else ever worked for me...not epidural injections, nor facet block, nerve
ablation, or any other of the shots they tried with me...
i should mention that i have not had spinal surgery...ever...yet....
and no doctor could figure out why the SI joint shots worked...i was just glad that they did...
i expect the pain to return now that i will not be repeating the shots....

best of luck...i hope you find a pain management doctor who can help you...they are not all
surgeons...i had one who is an anesthesiologist...
there is a chance that you do need a surgeon for revision surgery....perhaps you need to see
both a surgeon and a pain management doctor....

jess

Thank you for your reply. I am not sure what I am looking for I just want the pain to stop. I have had multiple injections in the SI joint about 13 years ago, they did not help. Since then the pain radiates down my entire leg. I was considering the epidural injections or a nerve facet block. About 10 years ago a myleogram was attempted but after an hour it was not possible to get through my scarr tissue. This makes me wonder if I would be a candidate for other pain injections.
Thank you for warning about the cortisone levels

[LindaRacine]

Hi Betty...

Laser surgery will not help you. It isn't (or at least, shouldn't) be used in deformity surgery. I just met a patient last week who had laser surgery in Florida. Her insurance wouldn't pay for it, as it is not indicated for deformity. The surgery destabilized her spine further than it had been, and she is going to have to have a major reconstruction.

I know how hard it is to make the decision to have more surgery, but I can tell you from first-hand experience that it can be super effective. After having surgery a year ago, I now have no lower back or leg pain.

There are some really good revision surgeons around the U.S. Where are you located?

Regards,
Linda

[golfnut]

Welcome to the forum. I was 60 when I had my first surgery and certainly hope it is the last, but i am pleased with the results and have no regrets. Good luck in whatever you decide to do to relieve your pain. I know that many have had revision surgery and are happy with the results. I would never consider spinal surgery unless I had one of the best surgeons in the country because think it makes a huge difference in one's outcome.

[Betty B]

Linda, thank you for your reply. My problem is coming from the two levels below my rods and fusion that is why I was wondering of laser might work on the last two levels. As you know they take a lot stress with the 12 above being fused.
I am located in south west Florida but would travel for a good out come.

Hi Betty...

Laser surgery will not help you. It isn't (or at least, shouldn't) be used in deformity surgery. I just met a patient last week who had laser surgery in Florida. Her insurance wouldn't pay for it, as it is not indicated for deformity. The surgery destabilized her spine further than it had been, and she is going to have to have a major reconstruction.

I know how hard it is to make the decision to have more surgery, but I can tell you from first-hand experience that it can be super effective. After having surgery a year ago, I now have no lower back or leg pain.

There are some really good revision surgeons around the U.S. Where are you located?

Regards,
Linda

[Betty B]

Dr. Lenke is now on my good list. You look great!!!!

Welcome to the forum. I was 60 when I had my first surgery and certainly hope it is the last, but i am pleased with the results and have no regrets. Good luck in whatever you decide to do to relieve your pain. I know that many have had revision surgery and are happy with the results. I would never consider spinal surgery unless I had one of the best surgeons in the country because think it makes a huge difference in one's outcome.

[jrnyc]

if you read some of the posts in the revision section of this forum,
you will find people who had their surgeries redone years later, with successful results...
perhaps it is time for you to ask a surgeon what can be done for you...
a top scoliosis surgeon might have answers for you....
pain management for scoliosis related problems is usually just temporary...

best of luck...
jess

[LindaRacine]

Linda, thank you for your reply. My problem is coming from the two levels below my rods and fusion that is why I was wondering of laser might work on the last two levels. As you know they take a lot stress with the 12 above being fused.
I am located in south west Florida but would travel for a good out come.

Unfortunately, laser surgery would still be of no help to you. Beware of the Florida surgeons who are advertising it as a solution to just about every back problem.

When I had revision surgery in Jan 2011, I also had the 2 levels below my fusion that had gone bad. Nate Lebwohl, in Miami, does revision surgeries. Also, Khaled Kebaish at Johns Hopkins has a great reputation. If you don't mind traveling, New York has an abundance of surgeons who specialize in revision surgery.

--Linda

[Betty B]

Linda thank you so much for the great references. Perhaps I will start wtih Nate Lebwohl in Miami it would certianly make life easier, it is a 3 hour ride from my home.

Unfortunately, laser surgery would still be of no help to you. Beware of the Florida surgeons who are advertising it as a solution to just about every back problem.

When I had revision surgery in Jan 2011, I also had the 2 levels below my fusion that had gone bad. Nate Lebwohl, in Miami, does revision surgeries. Also, Khaled Kebaish at Johns Hopkins has a great reputation. If you don't mind traveling, New York has an abundance of surgeons who specialize in revision surgery.

--Linda

[yacpatty]

Hi Betty...I am also 60...had a bone fusion in 1963 T4-L2 at the age of 13. I have been in chronic pain for the past 26 years and am at my wit's end. What exactly did they do when they did the revision surgery on L4? Also, do you have neural foraminal stenosis and did you have surgery for that?

[Betty B]

Hi Betty...I am also 60...had a bone fusion in 1963 T4-L2 at the age of 13. I have been in chronic pain for the past 26 years and am at my wit's end. What exactly did they do when they did the revision surgery on L4? Also, do you have neural foraminal stenosis and did you have surgery for that?

yacpatty:
I was pretty good from 1979 to 1990, then I got terrible pains deep in my left calf. I hav a L4-5 partial hemilaminectomy, medial facetectomy and forminotomy for nerve root decmopression with disc removal. I was only in the hosital two nights and pretty good after 6-8 weeks. However, about 1998 I started getting pain in my right SI joint, now it radiates through my thigh and calf. my thigh feels like the muscle is having a spasam and the calf feels like it has a tight blood pressure cuff on it. Good days bad days. I can not be more specific about your question as I had to pull out my surgal report and copy what I typed.
I just made an appointment with a physician in Miami. http://srs.execinc.com/edibo/PublicDirectory this is a web site I have been hunting for doctors on as well as ones that got good references from people on the forum. Be careful as I think any one can join the foundation, it does not mean they are good at what they do.

[LindaRacine]

http://srs.execinc.com/edibo/PublicDirectory this is a web site I have been hunting for doctors on as well as ones that got good references from people on the forum. Be careful as I think any one can join the foundation, it does not mean they are good at what they do.

This is the Scoliosis Research Society, and membership is relatively exclusive. For physicians to be members, at least 20% of their surgeries have to be for spinal deformity.

[Tableone]

[QUOTE=Betty B;137696]yacpatty:
I was pretty good from 1979 to 1990, then I got terrible pains deep in my left calf. I hav a L4-5 partial hemilaminectomy, medial facetectomy and forminotomy for nerve root decmopression with disc removal. I was only in the hosital two nights and pretty good after 6-8 weeks. However, about 1998 I started getting pain in my right SI joint, now it radiates through my thigh and calf. my thigh feels like the muscle is having a spasam and the calf feels like it has a tight blood pressure cuff on it.

Betty: I am interested that you had a disc removal surgery plus the other procedures in the area below your fusion. From what you say, it seems like it gave you relief for several years. Could you please let us know where you had it done? Also, how do you know that the pain is from your SI joint? I'm trying to figure out where my pain is coming from. Thanks.

[Betty B]

Glad to offer my experience:
I had a discectomy @ L4 and left laminectomy in 1991-good outcome. Later right leg problems May 2013 I went to University of Miami Spine Institute. I saw Mark Brown, a semi-retired surgeon, researcher who diagnoses and sends you to the right surgeon in the group. He had me see Seth Williams who mainly does Lumbar work. He was the only one who would do a laminectomy on L-4. It leaves an unstable joint but would bide time. I was only 60 at the time so I wanted to postpone another fusion as long as possible. Anyhow I was thrilled and had NO pain for months after. Unfortunately as predicted it did not last. Since then I have had multiple injections at a pain clinic. Including an epidural- no help- nerve ablasion - no help. The last two sets of shots were at the nerves coming out of the facets and SI joint. I am doing well for now.
I would go back to Dr. Seth Williams when time comes for more surgery.