Denervation...advice

[susancook]

Now that everyone has provided some info, I went back to the pain managment MD at OHSU who had me bend backwards right and left and forwards and slow him where my pain was, and he said that he didn't think that a Radiofrequency Neurotomy would be helpful, and that I should consider the scoliosis fusion offered by the surgeon for pain relief. At which point, I did what any mature 65 YO woman who had all of her hopes on a pain relieving procedure does, I started crying. I was so bummed. So then he upped my pain meds, which I don't want more systemic sedation and gave me a presciption for Gabapentin. I left his office crying and forgot to make a follow-up appointment. There has to be some other pain relieving procedures that I can have on my back short of a T3 to S1 fusion for pain relief! Before I saw the current pain management MD, I had a thoracic lidocaine injection. That was 4 month ago. It worked for 24 hours but it was amazing for the 24 hours, I was back to the old me. Thanks for taking the time to read this....I'm just bummed......
Susan

[rohrer01]

I know what it's like to be bummed. I've had doctors tell me contradictory stuff so much that I don't know what to believe any more. The last two visits to my spine doc I left crying. So 43 y/olds do it, too. I hope you can find some peace in what ever decision you make.

Best Wishes,
Rohrer01

[susancook]

I know what it's like to be bummed. I've had doctors tell me contradictory stuff so much that I don't know what to believe any more. The last two visits to my spine doc I left crying. So 43 y/olds do it, too. I hope you can find some peace in what ever decision you make.

Best Wishes,
Rohrer01

Thanks for your support. I also saw the surgeon this week. He said that I was a "good candidate for surgery" and to call him when if I decide to have surgery. I have decided to stick my head in the sand for 9 months barring loss of function or a great increase in pain and then have another set of xrays done in Jan 2013. I'm at peace with that decision and have made plans to go off to Fiji for 2 months Sept-Nov 2012 to do women's health teaching. I think that I can control the pain OK. I can't live on the fence of should I have surgery or not, so making the decision to wait at least until next spring feels right. It's a balancing act: Dr. Hart [the surgeon] said that in his experience at one year after surgery, 80-85% of the patients have decreased pain, 10-15% have the same pain, and 5% have more pain. For the amount of pain that I have right now, I don't feel that I want to risk having a big surgery that will impose great post surgical limitations for the possible risk of 20% being the same or worse.

I don't know where the well of tears came from, yes, I do, they came from the lack of control that I have over this whole pain and scoliosis process. Inspite of doing everything that I am told to do, I still hurt alot at the end of the day. So many other things in life I could control by going to more school, working harder or spending more money but this one doesn't seem to listen to me and that's where the tears come from, I think anyway. I just wish that Dr. Sibell [the pain management MD] could have offered me some alternative other than more sedating drugs. I sent him a post visit email that I was disappointed that the neurotomy procedure was not a option and that I hoped that we could revisit that in the future [or other procedures, non-medications] and he said that was an option. Maybe just getting my hopes up again.....Thanks again for your response. Great to know that there is someone out there listening or reading and someone else who melted into tears under pressure.

Susan

[jrnyc]

how many pain management guys have you consulted with....???
are you willing to try another one....?
i have had pain doctors tell me they are not so sure a procedure will help me, but since
it is in office, if i am willing to try it and the insurance approves it, they will go ahead for me...
i have had it happen more than once, with more than one pain doctor....
sometimes the procedure helped for a few weeks, sometimes not at all....
i never regretted trying any of the procedures...i was desperate...
and none were worse than surgeries i have had in my lifetime...not spinal, but other kinds...
all were tolerable within a doctor's office...to me, no big deal....
i always appreciated the doctors' willingness to give me a chance....

jess

[rohrer01]

Thanks for your support. I also saw the surgeon this week. He said that I was a "good candidate for surgery" and to call him when if I decide to have surgery. I have decided to stick my head in the sand for 9 months barring loss of function or a great increase in pain and then have another set of xrays done in Jan 2013. I'm at peace with that decision and have made plans to go off to Fiji for 2 months Sept-Nov 2012 to do women's health teaching. I think that I can control the pain OK. I can't live on the fence of should I have surgery or not, so making the decision to wait at least until next spring feels right. It's a balancing act: Dr. Hart [the surgeon] said that in his experience at one year after surgery, 80-85% of the patients have decreased pain, 10-15% have the same pain, and 5% have more pain. For the amount of pain that I have right now, I don't feel that I want to risk having a big surgery that will impose great post surgical limitations for the possible risk of 20% being the same or worse.

I don't know where the well of tears came from, yes, I do, they came from the lack of control that I have over this whole pain and scoliosis process. Inspite of doing everything that I am told to do, I still hurt alot at the end of the day. So many other things in life I could control by going to more school, working harder or spending more money but this one doesn't seem to listen to me and that's where the tears come from, I think anyway. I just wish that Dr. Sibell [the pain management MD] could have offered me some alternative other than more sedating drugs. I sent him a post visit email that I was disappointed that the neurotomy procedure was not a option and that I hoped that we could revisit that in the future [or other procedures, non-medications] and he said that was an option. Maybe just getting my hopes up again.....Thanks again for your response. Great to know that there is someone out there listening or reading and someone else who melted into tears under pressure.

Susan

My last pain doc said I have so much pathology that I will NEVER be off of narcotics and muscle relaxants and that surgery will make me worse. My scoli doc doesn't want me on any meds and says the surgery will make me worse. So where does that leave me? It's very frustrating to say the least. Arghh...

[susancook]

how many pain management guys have you consulted with....???
are you willing to try another one....?
i have had pain doctors tell me they are not so sure a procedure will help me, but since
it is in office, if i am willing to try it and the insurance approves it, they will go ahead for me...
i have had it happen more than once, with more than one pain doctor....
sometimes the procedure helped for a few weeks, sometimes not at all....
i never regretted trying any of the procedures...i was desperate...
and none were worse than surgeries i have had in my lifetime...not spinal, but other kinds...
all were tolerable within a doctor's office...to me, no big deal....
i always appreciated the doctors' willingness to give me a chance....

jess

This is my third pain management MD and probably the smartest one. He said that my insurance wouldn't pay for it since he couldn't recommend it. I see his point, why take the risk of a procedure if he really doesn't think that it will have a benefit. But then again, my back is so complicated with arthritis, DDD, and scoliosis, that I'm not convinced that it wouldn't help. He recommended "the surgery" which is the big fusion, which is what he thinks will really help me the most. I don't think that my pain level is enough to justify the BIG GUN. So then he offers more pain pills which lead to more sedation, and I don't like that either. He said that we could revisit the procedure possibility again, so we left it there. Thanks for you advice and hopefully with re-examintaion in the future, that procdure or another will seem appropriate for me.
Susan

[jrnyc]

many scoli patients also have DDD and arthritis, as well as stenosis, listhesis, etc...it is not unusual...
i have never met a pain management doctor in favor of scoli fusion, unless to stop progression...
every pain doctor i have met...and that is several...has advised against the surgery, unless it is
"to stop progression...if you are doing it to address pain, don't do it"
then they tell me about their patients who come to them for pain management AFTER they
had the surgery....
scoli surgeons tell me the exact opposite...they tell me pain management may help for a while, but it
only addresses the symptoms caused by the problems...pain management is not capable of fixing
the problem(s)...to fix the problem(s) requires surgery...

however, no surgeon wanted to operate on me when my curves were smaller...
now that they are 42 and 70, surgeons keep telling me surgery is the only "fix"
but the next thing they say is "i cannot give you any guarantees"
so it makes the decision very difficult...

i am not trying to be negative...only realistic...
surgery is not a guarantee of solving the problem...for some lucky people, it seems
to be right...for others, even with a top scoli surgeon, it is the start of
more surgeries...
it amazes me how different the outcomes can be, even with an excellent experienced doctor....

jess

[rohrer01]

Jess,
They can NEVER give any guarantees. What I've heard from most of the doctors that seriously talked fusion with me is that 80 - 85% of patients have a reduction in pain. Susan's case is different than ours. Her scoliosis is adult onset scoliosis cause by the degeneration of her spine. This means that her spine is not stable. Our cases, at least mine, the degeneration is caused by the scoliosis. So if the scoliosis is stable, then we can do other things to treat the pain from the degeneration. I hope that made sense. I've never heard of a pain doctor recommending surgery, either. So if one did, then it is probably the right thing to do. Leahdragonfly used Dr. Hart and from what I understand he's pretty good. Susan wouldn't be having the fusion, per se, for the scoliosis. She'd be having if for the other problems with her spine.

Susan,
It's a hard decision to make. I'm not saying which way you should go. I would seriously consider it if your pain OR your curves worsen. Your case is different, as I mentioned to Jess.

Best Wishes,
Rohrer01

[jrnyc]

i have DDD, scoli, spinal arthritis, listhesis, hypokyphosis, spinal stenosis, etc etc...
every time i see pain doc in Manhattan and bring up surgery, he warns me not to do it for pain....
EVERY time...
only surgeons recommend surgery to me...
i am so hesitant...because IF it doesnt go right, regardless of how good the surgeon is,
all that is left is more surgery....revision....
i read the revision section of forum and it stops me in my tracks...
and my scoli was not diagnosed til i was 31 years old, though i suspect it was there
much earlier...but i cannot prove it...

just a note...i think surgeons will not just do DDD surgery on someone with scoli....they insist
on doing complete fusion....which i think is a shame....i would be willing to just get DDD surgery
in a second...no hesitation...

jess...& Sparky

[susancook]

Backs are certainly complicated

At OHSU the Pain Management MD and the surgeon seem to work together. It's not a conspiracy, but they support each other. Yes, the parting note from the pain management MD was "I advise that you strongly consider surgery for your pain". There is not one scoliosis as I am learning. Scoliosis that starts in adolescence or earlier and then progresses into adulthood is a whole DIFFERENT bird than my scoliosis, that of degenerative adult onset scoliosis. Kind of like apples and oranges. How can a MERE 36* curve be so painful for me? Dr. Hart said that he had a patient with adult degenerative scoliosis with a curve smaller than mine who had substantial pain that he had just operated on this week.

Thank you to everyone that responded and thanks for your support. It is comforting to know that I am not alone in this endeavor. My brain is certainly foggy as I said before when he declined to do the procedure, he upped my pain pills and added Gabapentin and life seems foggier now. Pain is the same. Pain is now my new companion in retirement. I am thinking of creative ways to incorporate my new friend into my life. Susan

[leahdragonfly]

Hi Susan,

I am so sorry to hear that your appt with Dr Sibell was so disappointing. I can't help wondering what changed that he had previously recommended the blocks followed by the denervation, then changed his stance on that. I thought they figured these things out from looking at MRI's, not from having you bend on physical exam. What do you make of that?

I had another opinion several years ago in Eugene from Dr Chris Noonan, who is a spine specialist but not a deformity specialist. He told me I could try some epidural steroid injections but he was doubtful they would help me for any period of time, I think because my spine was unstable and the pain was mostly due to mechanical slippage/instability. As I think I mentioned when we met, I did try two rounds of these injections, at a pain clinic in Eugene which did not impress me at all. I got no relief from these injections, and the second one made things temporarily worse. So perhaps the pain doc recognizes that your problems can't be helped by nerve ablation. I am guessing that you have a lot of these same problems.

Dr Hart will be happy to give you the names of several patients similar to you, so that you can speak to them by phone. I did this and found it very helpful before having surgery. If you call and ask for Robin she can help you with this.

I was offered gabapentin by my primary care doc at one point about two years before my surgery, but I am really sensitive to a lot of drugs, and the descriptions of it made me decide not to take it. I am really sorry that your prescriptions make you feel foggy but with unrelieved pain. That's a crappy combo.

Hang in there...

[Karen Ocker]

My case very complex

No one in medicine, even for non-scoliosis issues, gives guarantees. That being said, it's always "risk vs likely benefit". My case was one of the most complex I have read about here. So when a doctor says no guarantees that did not, in my case, deter me.

With my medical background, I did not see how living with a collapsing spine would reverse itself in my remaining years. I did not see, how covering up my pathology with pain management would magically make my life better. I did everything possible to keep fit and it did help. Pilates was very helpful and reduced pain. I walked 3 miles at a time but it did not halt my collapsing spine and I saw myself getting worse and worse despite all reasonable alternatives.

Many doctors, who do not have the correct skills, I have noticed, will discourage helpful surgery out of ignorance---claiming "the pain would be worse". Scientifically speaking, straightening the spine-even a little, would relieve pressure on the nerves being crushed by the curve. One jerk did not believe I had actually HAD a successful revision at age 60. He said "scoliosis surgery was never done over age 19"!. This was 7 years ago.

Scoliosis surgery is NOT new. It has been done for over 50 years, successfully, and constantly being perfected.

I have absolutely NO pain after a very complex revision. It was done at age 60 - 9 years ago. I got my life back.

For people who fear revisions: My original, primitive surgery, lasted over 40 years.

[jrnyc]

my expected benefit from surgery includes a curve reduction to 35 degrees..
so i would be left with a 35 degree lumbar curve AFTER surgery....

it is a tough decision...i hope there is something short of surgery that can help you....
it took me over 5 years to find the sacroiliac joint injections that killed most of my lumbar pain...
temporarily....but now i have a new worry with low cortisol, caused by the steroids...
i know everything short of surgery is temporary...
so i hope, if you have the surgery, that you are one of the 85% of patients who get reduced pain
after healing....
i wish you the best solution that leads you to a life without pain....

jess...& Sparky

[susancook]

Jess,
They can NEVER give any guarantees. What I've heard from most of the doctors that seriously talked fusion with me is that 80 - 85% of patients have a reduction in pain. Susan's case is different than ours. Her scoliosis is adult onset scoliosis cause by the degeneration of her spine. This means that her spine is not stable. Our cases, at least mine, the degeneration is caused by the scoliosis. So if the scoliosis is stable, then we can do other things to treat the pain from the degeneration. I hope that made sense. I've never heard of a pain doctor recommending surgery, either. So if one did, then it is probably the right thing to do. Leahdragonfly used Dr. Hart and from what I understand he's pretty good. Susan wouldn't be having the fusion, per se, for the scoliosis. She'd be having if for the other problems with her spine.

Susan,
It's a hard decision to make. I'm not saying which way you should go. I would seriously consider it if your pain OR your curves worsen. Your case is different, as I mentioned to Jess.

Best Wishes,
Rohrer01

Thanks for trying to make sure clarity out of a very confusing situation. Right now I am dealing mostly w/ worsening sciatica. The question is should I just have the minimal sciatic problem taken care of, of just do the whole spine. Of course, Dr. Hart said, the whole spine. He does not do the minimally invasive lumbar procedure that is very appealing for me to have done. I'm not hurrying into anything. Thanks for the support. I need it.
Susan

[susancook]

my expected benefit from surgery includes a curve reduction to 35 degrees..
so i would be left with a 35 degree lumbar curve AFTER surgery....

it is a tough decision...i hope there is something short of surgery that can help you....
it took me over 5 years to find the sacroiliac joint injections that killed most of my lumbar pain...
temporarily....but now i have a new worry with low cortisol, caused by the steroids...
i know everything short of surgery is temporary...
so i hope, if you have the surgery, that you are one of the 85% of patients who get reduced pain
after healing....
i wish you the best solution that leads you to a life without pain....

jess...& Sparky

Thanks for your support.
Susan