[doublehippy]

Hi...

I just joined this board and am looking for some advice/input.

History: 2 total hip replacements (2003 & 2006) and have been diagnosed with moderate to fairly severe DDD and stenosis. I am unable to walk any distance (in spite of 2 perfectly functioning bionic hips!) without using a walker. The pain in my left leg is, at times, unbearable...and I am no stranger to pain.

I've done PT for core strengthening, had 3 epidural steroid injections (no help at all) and was given a script for Neurontin from the pain management people who did the injections. I ended up throwing the bottle away....am scared silly of the side affects.

After meeting with my back doc last week, he more or less told me not to come back unless I wanted surgery....a 2 level fusion. Big surgery, as you all know...long recovery, etc. This doc is an orthopod....nice, nice man, knows his stuff.

I simply am not ready to bite the bullet...yet! I take nothing for pain and basically had to beg him for some Tramadol and he gave me 50....with no refills! That's it. He said he write me another script for the Neurontin if I wanted, but I haven't called to ask for it....yet.

I understand that narcotic pain meds don't really help the neuropathic/sciatic pain I have in my leg....and that is my big issue. Has anyone tried the Neurontin and, if so, did it help with the sciatica? I'm just about ready to ignore the side affects to get some pain relief. How about Topomax? I've read it has similar side affects, but one plus is weight loss. My back doc said he wouldn't prescribe it as he hadn't had any clinical experience using it for his patients. I could call pain management and I'm sure they could give me a script.

Have any of you had the Axia LIF procedure for your fusions...or know of anyone who has? After doing some homework, I've found a neurosurgeon here who does this less invasive surgery and will probably be calling his office for a consult. I know I have to do something eventually and want to explore all of my options.

I'm so very frustrated. I had a couple of pain free years after I had my hips replaced and then my back decided to head south. To be honest, I limped along with my hip pain without the use of walking aides prior to my hip surgeries. This leg pain is 10 times worse and makes walking any sort of distance impossible.

So, any advice, thoughts, recommendations are greatly appreciated. Thanks so much for reading.....
Linda

[Leesa]

Dearheart DO NOT HAVE SURGERY!!! You will just end up needing more and more surgery!!! Don't let this doctor sell you down the path. With fusion and regular spinal surgeries, the levels above/below the surgery site will FAIL and you will find yourself needing more surgery. That's because those levels have to take on more of the load -- and the doctors don't tell you this!!! It's called the domino effect - and it happens all the time. I had 2 open surgeries and it happened to me both times -- but I had my surgeries before the internet so I had no way of knowing this or doing research.

The American Medical Soc. said that last year the fusions that were performed had NO better outcome than the people who were referred to physical therapy!!! They said that there were THOUSANDS of NEEDLESS surgeries in the U.S. Now, isn't that scary?? If I had known HALF of what I know now, they never would have touched me back in 1986 & 1995.

I've had sciatica for 26 years, and I finally have found some relief -- I now use the Fentanyl Patch along with Methadone ~ and this actually WORKS!!! I've tried every pain medication you can imagine. I also use Topamax for nerve pain, and that works GREAT -- I no longer have the burning, stinging pain that nerve pain causes. Perhaps your doctor will prescribe these for you.

I wish you the very best -- I know how awful this pain is. But for heavens' sakes, don't let them operate on you or you'll end up with more pain than you have now. Surgery does NOT fix pain. It only fixes mechanical problems. If any doctor says he can fix your pain, run away from him because he cannot do that. God bless and take care. Hugs, Lee

[Jomar]

What about a TENS or other e stim? or implanted pain pump or SCS??
Have you looked into any of those options.

[Dr. Smith]

Hi doublehippy,

Nice handle, & welcome.

Originally Posted by doublehippy

[I] was given a script for Neurontin from the pain management people who did the injections. I ended up throwing the bottle away....am scared silly of the side affects.

Did you happen to try it before giving it the heave-ho?
1. Not everyone responds the same or suffers all those SEs.
2. Many of the side effects are temporary and dissipate after a few weeks.
3. Some folks need a lot less (and have less/fewer SEs) than the prescribed norm.

After meeting with my back doc last week, he more or less told me not to come back unless I wanted surgery.... I simply am not ready to bite the bullet...yet!

Then don't go back to him until then. In the meantime, get into pain management. IMO, from what you say, this guy is pressuring you for more surgery, and surgery should always and only be a last (third tier) resort.
http://www.poweroveryourpain.com/und.../paincontinuum

I understand that narcotic pain meds don't really help the neuropathic/sciatic pain I have in my leg....and that is my big issue.

Narcotic pain meds are not first-line treatments for neuropathic pain, but everyone is different in what works/doesn't, and often, narcotic and neuropathic pain meds work better in conjunction than either does separately. Again, everyone responds differently.

Did anyone mention Lyrica? It's supposedly very similar to Neurontin, but without so many SEs (for some). Personally I have heard worse stories about Topomax (a.k.a. Dopamax, Stupamax) than Neurontin, but again, everyone is different.

So, any advice, thoughts, recommendations are greatly appreciated. Thanks so much for reading.....
Linda

This is a process - a journey. There are many roads that can be taken; some can be backtracked/rerouted - others (surgery) are one-way.
You might give this a read too:
http://pain-topics.org/pdf/IntractablePainSurvival.pdf

Best wishes,

Doc

[doublehippy]

Originally Posted by Leesa

Dearheart DO NOT HAVE SURGERY!!! You will just end up needing more and more surgery!!! Don't let this doctor sell you down the path. With fusion and regular spinal surgeries, the levels above/below the surgery site will FAIL and you will find yourself needing more surgery. That's because those levels have to take on more of the load -- and the doctors don't tell you this!!! It's called the domino effect - and it happens all the time. I had 2 open surgeries and it happened to me both times -- but I had my surgeries before the internet so I had no way of knowing this or doing research.

The American Medical Soc. said that last year the fusions that were performed had NO better outcome than the people who were referred to physical therapy!!! They said that there were THOUSANDS of NEEDLESS surgeries in the U.S. Now, isn't that scary?? If I had known HALF of what I know now, they never would have touched me back in 1986 & 1995.

I've had sciatica for 26 years, and I finally have found some relief -- I now use the Fentanyl Patch along with Methadone ~ and this actually WORKS!!! I've tried every pain medication you can imagine. I also use Topamax for nerve pain, and that works GREAT -- I no longer have the burning, stinging pain that nerve pain causes. Perhaps your doctor will prescribe these for you.

I wish you the very best -- I know how awful this pain is. But for heavens' sakes, don't let them operate on you or you'll end up with more pain than you have now. Surgery does NOT fix pain. It only fixes mechanical problems. If any doctor says he can fix your pain, run away from him because he cannot do that. God bless and take care. Hugs, Lee

Leesa....

Thanks for your response. I realize that surgery may (and probably will) create more problems. I'm sorry you suffered so long before finding some relief.

My doctor did say that a lot of patients get relief from the leg pain with the fusion surgery and I suppose, because of my successful hip surgeries, I'd consider the surgery to eliminate the sciatica. Hips and backs are two different animals, though.

A call to pain management is in order and another script for PT.

Another question: can seeing a reputable chiropractor help my problem at all? I am willing to try anything to avoid surgery.

Again, thank you and take good care!
Linda

[doublehippy]

Originally Posted by Dr. Smith

Hi doublehippy,

Nice handle, & welcome.



Did you happen to try it before giving it the heave-ho?
1. Not everyone responds the same or suffers all those SEs.
2. Many of the side effects are temporary and dissipate after a few weeks.
3. Some folks need a lot less (and have less/fewer SEs) than the prescribed norm.



Then don't go back to him until then. In the meantime, get into pain management. IMO, from what you say, this guy is pressuring you for more surgery, and surgery should always and only be a last (third tier) resort.




Narcotic pain meds are not first-line treatments for neuropathic pain, but everyone is different in what works/doesn't, and often, narcotic and neuropathic pain meds work better in conjunction than either does separately. Again, everyone responds differently.

Did anyone mention Lyrica? It's supposedly very similar to Neurontin, but without so many SEs (for some). Personally I have heard worse stories about Topomax (a.k.a. Dopamax, Stupamax) than Neurontin, but again, everyone is different.



This is a process - a journey. There are many roads that can be taken; some can be backtracked/rerouted - others (surgery) are one-way.
You might give this a read too:


Best wishes,

Doc

Thanks for your response.

You're right...this is a journey and I haven't tried all of my options yet. I plan on calling the pain management doc (a wonderful woman, top notch anesthesiologist, professor at our medical school) to see what else she may have in her "bag of tricks" for me. As mentioned, I got no relief from the ESIs. She originally prescribed the Neurontin because most insurance doesn't cover Lyrica, which is very expensive. However, I will call my insurance co to get the scoop before asking for a script.

No, I did not try the Neurontin at all. I've heard it referred to as "Morontin"...same as "Dopomax" for the Topomax. I know we all react to drugs differently and I will have to give one or the other a try.

I suppose my focus was on the surgery because of the wonderful results I had with my hip replacements. After much reading and research, I realize that back surgery is so "iffy" - and, given my luck, I'd be trading one problem for multiple others.

Again, thanks and I'll keep you all posted as it goes!
Linda

[Jomar]

Originally Posted by doublehippy

Another question: can seeing a reputable chiropractor help my problem at all? I am willing to try anything to avoid surgery.

Again, thank you and take good care!
Linda

If you can locate an expert/advanced/skilled Chiro, or perhaps a bodyworker of some sort, they might be able to help. You usually can ask for an evaluation appt first.
and you can do a search for videos (Google or you tube etc) to get ideas on the techniques & different styles of treatments.

Eric Dalton has good videos and explains what he is doing very clearly.

[doublehippy]

Originally Posted by Jo*mar

If you can locate an expert/advanced/skilled Chiro, or perhaps a bodyworker of some sort, they might be able to help. You usually can ask for an evaluation appt first.
and you can do a search for videos (Google or you tube etc) to get ideas on the techniques & different styles of treatments.

Eric Dalton has good videos and explains what he is doing very clearly.

JoMar....

I will do my homework on this, too!

Thanks so much,
Linda