Double curvature

[mbeckett]

Hi everyone,

I am 53 years old and have had scoliosis since I was 13 years old. It wasn't until 8 years ago that I started having problems. I use to be an advid walker but each year I've had to cut back more and more because of the pain. I've had epidural injections, facet joint injections and recently they wanted me to do a nerve abalation procedure. Has anyone had this procedure done? If so, do you feel it was worth it?

I see the surgeon on April 9 and have all kinds of questions for him. I have a double curve and from what I have heard from people who have had surgery, it isn't a pleasant surgery to go through.

I would just really like to hear from some people who have had the surgery and/or RF ablation procedure and your thoughts on either one.

[sccrm08]

HI Mbeckett

I have had both done. For me the nerve abalation procedure did not help. I was getting ready to have a second one done when we decided to have the surgery. Best of luck with making your decesion.

[txmarinemom]

A link to a thread where it was discussed ... (that links to *another* thread where it was discussed ;-)

http://scoliosis.org/forum/showthrea...light=ablation

Regards,
Pam

[mbeckett]

Thank you for providing that link to where nerve ablation was discussed. Many of the same concerns that I have were brought up. I had cancelled my procedure and decided to wait until I talk with the surgeon. Burning nerves for some reason just doesn't set right with me. From all my reading, the nerves do grow back. And the doctor even told me that they grow back so in 6-8-12 months, your faced with the pain all over again. In most cases, the doctors only speak about doing the procedure a second time. Well, then what? If the ultimate cure if you can call it that is to have surgery, then I guess we might as well cut to the chase and do the surgery. Can't believe I'm even at this point. I hear the surgery is long and the recovery is painful. I'd like to hear from some folks that have had surgery and give me their honest feedback as to whether or not they are glad they had it done, would do it again if they had to or wished they never had surgery.

[CHRIS WBS]

I’m glad I had surgery. I regret that I did not have it at a younger age though, but I was not even aware that this surgery was available to adults my age until I started having problems and began consulting with surgeons. There’s no denying it. It’s one rough surgery especially for those of us who are older and require more extensive surgeries. But I think I’ve come a long way since my surgery last June and while I still get achy from time to time, for the most part I’m pain free and enjoying the benefits of the surgery such as improved posture and appearance, standing duration and increased stamina for activities such as shopping, long walks and hopefully some traveling this summer. Yes, I’d do it again in a heartbeat.

[jrnyc]

hi mbeckett
i have been seeing my pain doc in Manhattan for several years now..i've had many treatments...the botox shots i get in thoracic area help prevent muscle spasms...but little has helped my lumbar pain...have done epidural injections, nerve ablation, facet block, sacroiliac joint injections...most have lasted zero days to one month...sacroiliac injections gave me complete relief for a lovely 3 weeks to one month! the only epidural injection that helped me was the one (of total of 4) i had for nerve pain..sciatica... a worsening sciatica on left side...it didn't used to bother me...suddenly became much worse very fast...epidural i had for that gave me complete relief from sciatica pain for 2 months...just recently evaporated on me...expect to arrange another one...
and then, of course, the oral meds...i take hydrocodone...cant handle morphine, didnt get anything from any of the anti inflammatory meds, or neurontin, etc...

my curves are remaining, for now, at 42T and 61L...but degenerative disc disease is worsening and causing a lot of my current pain, per my surgeon...
also complicating it is arthritis of spine, stenosis, listhesis, hypokyphosis, etc...the whole 9 yards!

hope you find your answers...and feel better...
jess

[JenniferG]

Welcome Mbeckett. I can't advise you on the nerve ablation but I had the surgery at almost 58. There were some hiccups in the initial weeks (early pain control issues and dizziness from 6-12/13 weeks, but by 13 weeks post op things suddenly improved and I felt great.

So for me it was three months recovery and in return I got all the benefits Chris mentioned. Pain free and halting the curve progression into the future, is a pretty good payoff.

I wish you luck in your decisions and I hope you get the benefit of the experience of people on this forum.

[LindaRacine]

hi mbeckett
i have been seeing my pain doc in Manhattan for several years now..i've had many treatments...the botox shots i get in thoracic area help prevent muscle spasms...but little has helped my lumbar pain...have done epidural injections, nerve ablation, facet block, sacroiliac joint injections...most have lasted zero days to one month...sacroiliac injections gave me complete relief for a lovely 3 weeks to one month! the only epidural injection that helped me was the one (of total of 4) i had for nerve pain..sciatica... a worsening sciatica on left side...it didn't used to bother me...suddenly became much worse very fast...epidural i had for that gave me complete relief from sciatica pain for 2 months...just recently evaporated on me...expect to arrange another one...
and then, of course, the oral meds...i take hydrocodone...cant handle morphine, didnt get anything from any of the anti inflammatory meds, or neurontin, etc...

my curves are remaining, for now, at 42T and 61L...but degenerative disc disease is worsening and causing a lot of my current pain, per my surgeon...
also complicating it is arthritis of spine, stenosis, listhesis, hypokyphosis, etc...the whole 9 yards!

hope you find your answers...and feel better...
jess

Hi Jess....

I didn't really think about it until just now, but you might want to talk to Dr. Lonner about whether you might be a candidate for fusing just the fractional curve. One of the surgeons I work for, Sigurd Berven, is taking a retrospective look at about 8-10 patients on whom he's done this sort of surgery. In this surgery, he fuses just 2-3 vertebrae, usually L4-S1. These are the vertebrae that are causing the pain. He ignores the rest of the curve(s), because they're not causing leg pain. It's a much smaller surgery than fusing the entire curve(s), and patients recover much faster. There's a risk these patients will require revision surgery, but so far, I think all of the patients are still doing OK. Since I know that it's the scope of the surgery that is daunting to you, this might be a good option if you're a candidate. If you have a lot of back pain above that level, you would probably not be a great candidate. (I think you've mentioned that you have pain in your thoracic spine, but I don't know if that's something with which you can live.)

If Dr. Lonner has any questions about it, I'm sure that Dr. Berven would be happy to discuss it. (They definitely know each other.)

--Linda

[Back-out]

Hi Jess....

I didn't really think about it until just now, but you might want to talk to Dr. Lonner about whether you might be a candidate for fusing just the fractional curve. One of the surgeons I work for, Sigurd Berven, is taking a retrospective look at about 8-10 patients on whom he's done this sort of surgery. In this surgery, he fuses just 2-3 vertebrae, usually L4-S1. These are the vertebrae that are causing the pain. He ignores the rest of the curve(s), because they're not causing leg pain. It's a much smaller surgery than fusing the entire curve(s), and patients recover much faster. There's a risk these patients will require revision surgery, but so far, I think all of the patients are still doing OK.

Linda,

How far back does this retrospective study look and do you have any links to papers abt it by Dr. Berven? This might be interesting for me, even though I realize the chances I'd require more surgery later are very high. (I regard it in a way as a complex kind of pain management).

As I work on my own best analysis of my problems, I'm struggling to figure out how to deal with the mysterious Cobb angle issue. In sum, beyond reader differences, it seems it is NOT progressing - certainly not dramatically (as I'd thought back in March of this year). It would have been convenient if it HAD been, since it would have made the decision about surgery much easier.

Last year, I finally decided reluctantly to investigate deformity surgery despite the repeated false reassurances I'd gotten locally, that my scoliosis has remained stable - at least, in that one crucial measure. My search was validated at first, by the apparent revelation that my lumbar Cobb worsened greatly in the last year or so.

Now that in turn seems to have been a false lead. Trying to adapt to changing information with less lag-time, I'm again basically discounting my elusive Cobb measurement . It doesn't seem very meaningful in my case. Instead, I'm focusing on my sacrum, lumbar kyphosis, flat back and degenerative lumbar disks. I figure they are responsible for most of my pain and disability. Attending to that Cobb will-o-the -wisp has just confused and delayed me in seeking/finding help.

If these conditions ARE my primary sources of pain/disability (as well as 4" lost height), it does suggest a rationale for a more restricted fusion - even if in a sense, it's temporizing. Dr. Berven's approach might suit my needs.

Besides him, though, do you know of any surgeons - perhaps at your facility -who have focused, even experimentally, not only on that segment, but also on creating lordosis in case of idiopathic flat back (I gather this is rare)? Likewise, on other aggressive techniques designed to relieve symptoms in the lower spine only? Dr Berven's is the closest I've heard of, but don't know it he works to create and strengthen absent lordosis (and sagittal imbalance). I would imagine this would require an anterior and posterior approach, even if the anterior surgery is M.I.

It might well be worth my traveling to consult with such a surgeon even if s/he is distant, especially as it sounds like my recovery would be much easier. That would mean all transport and lodging requirements would be much more restricted for me. If so, such surgery might be feasible economically and practically. I wonder if I could forward actual imaging (NOT reports) first to find out if it's worth a consult. Some surgeons are willing to pre-screen this way

Thanks!

[jrnyc]

thanks Linda
sending a private message

jess

[LindaRacine]

Amanda...

I think most surgeons, at least all of the top surgeons, would address lumbar lordosis during surgery. If not, you would almost certainly be headed back for more surgery before long.

I think I've said this before, but it bares repeating. I think we all need to be careful about trying to be over-informed about our disease. I've seen the dynamic of a patient with too much information several times. They come in asking what they think are great questions, when in fact, they're working with incorrect assumptions. The surgeon then has to spend time undoing that, and they often seem to get frustrated that their time isn't being used optimally.

If I'm understanding you correctly, I think you may have misunderstood if you think that surgeons you've spoken to weren't going to address lumbar lordosis (if it indeed exists).

--Linda