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Thank you Jay, that is the advice I've been getting. I've not only had facet joint injections but caudal as well. The doctor is indeed, as you say, an anesthesiologist and board certified in pain management. I'm on methadone orally, which seems more stable than when I was on oxycontin, as the oxycontin only seemed to last a few hours and then I had to wait 3-4 hours before the next dose in pain. You know sometimes it hurts so much I can't imagine what it would be like WITHOUT pain meds. I'm also finding that the darn PT makes me hurt more than it's been helping. The stretching seems to be okay, and I don't mind doing them and they actually seem to help somewhat, but those core strenghtening things cause more pain. They say "Well, once you have them strenghtened you won't have the pain anymore". I wonder about that, as I also have fibromyalgia which in itself is a pain syndrome, and typically, I can do something once or twice in one day, but the next day I am in so much pain for doing so that I just want to sit around and cry.
Can you tell me what lesioning is? This doctor I'm going to also discussed the possibility of putting needles on/in the facet joint nerves and heating them up a little higher than your body temperature that will cause them to actually "burn" severing them, disallowing the pain messages to get to the brain. Because nerve tissue grows back, it only lasts for 4-6 months, so has to be done again. She didn't tell me what that was called.
I've read on a couple websites (by the way if anyone is reading this some have given me some new ones to look at - I really appreciate it and will check them out)
that it was the dies in the old MRI's etc. that was the invasive procedure that caused Arach.. but, I tend to believe people who actually HAVE the disease or disorder or whatever they term it. What do they term it, do you know? From what I'm getting, it's any invasive procedure that can cause or make it worse?
That's scary, because I think mine has gotten worse since I've gotten the shots, she says that they build upon each other and it takes a while for the steroids to work consistently when I mentioned that the pain was not better, rather somewhat worse.
I live in SW Michigan if anyone knows of a pain doctor who they would recommend. My fibromyalgia group has a "service" we call "Top Docs" and maintain a list of doctors that people have gone to that are good, and we list them by state. I'd be willing to do that for our group if it sounds like a good idea and/or would be helpful to others. I can't work, so if I can help someone out in some small way am always happy to do it.
Thanks. Sue
----- Original Message -----From: jaySent: Saturday, October 08, 2005 2:40 AMSubject: Re: [Arachnoiditis] Need to understand what is ArachSue,
I am a 23 year veteran of chronic pain. I was diagnosed with Arach about four years ago, but
wasn't told about it until last year. During the four years in between, I had several facet joint
injections. I implore you not to let them ever invade your spinal cord again. It sounds like you
have a serious case of Arach. As for developing the core muscles, I tried an avid gym regimen, but
found it too painful to continue. I still work as much as possible, but have my "down days."
Please follow the advice you've been given. It is very rough to "interview" a pain doctor. They
are hard enough to find as it is. The sad truth is that most are anestheologists, and have been
trained to do invasive procedures, such as he lesioning, or facet injections. Again, I implore you
to continue to interview doctors until you find someone who will not try to inject your spine with
ANYTHING!!!That's what got most of us in the mess we're in now.
Please let me know how you're doing.
Regards,
Jay M.
Please also feel free to email me directly.
--- sgrabber <sgrabber@...> wrote:
> Thank you Don, the shots do not seem to be helping. The pain pills seem to take the edge off
> and since I've been taking them for fibromyalgia anyways, it's not really a change. How do you
> treat your Arach? Are you able to work? This doctor is certified both in anesthesiology and
> pain, so I just assumed she knew what she was doing and when she gave me facet joint injections
> it helped, but the caudal injections (where I believe the arach is located, it didn't help at
> all) I believe she's injected a short acting steroid and then Depo-Medrol (in the same shot of
> course) that takes effect after a few days. When I had my diagnostic MRI, I had so much
> inflammation they could actually see fluid on the MRI which from what the doctors told me is
> very rare. It's hard to see fluid on an MRI unless it's very inflammed. I'm so sick of going
> to doctor after doctor as I have other things wrong and it seems like it's my whole social life.
> I don't want to go, I don't want to go to the lab, I don't want any procedures, I'm just SICK
> of it all. I've applied for disability and was turned down and have hired a lawyer and am
> fighting Social Security now. I had a wonderful well paying job that I worked at for years, but
> I just couldn't do it anymore. I can't do hardly anything anymore because of the pain. It's so
> depressing. My husband's wonderful, but I'm sure he has a hard time with it too.
> I'll ask my doctor how many Arach patients they have at their clinic. >From what I understand,
> just like the fibromyalgia I have, more patients are being diagnosed with it than previously.
> One last question, do you go, or have you gone to physical therapy? This is another thing that
> bothers me. It make is hurt so much more. I keep being told that I have to strenghten those
> core muscles, but I try and do the stretches faithfully, but the strenghtening ones are killers,
> again, don't know if it's because of the fibro or the Arach. Thanks so much for posting. I
> have so many questions and concerns just rolling around in my head, I so appreciate it. Sue in
> Kalamazoo, MI
>
> ----- Original Message -----
> From: Don Goeglein
> To: Arachnoiditis@yahoogroups.com
> Sent: Thursday, October 06, 2005 10:11 PM
> Subject: Re: [Arachnoiditis] Need to understand what is Arach
>
>
> Hi,
> If I were you I would think twice about allowing anyone to inject you back or spine.
> THAT CAUSES AND WORSENS ARACHNOIDITIS.
> Since you are new to this you more than likely do as I and most others did, That is just go
> along with what the doctor say's to do but believe me. Most do not know how to treat ARACH.
> Please find someone through a pain center that knows and understands ARACH. It is nothing to
> play with. They can make you worse and not even know that they are doing it. Injections of any
> kind are a no no to me and almost anyone with ARACH. There are some very informative sites on
> the Internet under www.Arachnoiditis.com Please look these over with a open mind for your own
> good.
> I do not know everything but after over 100 doctors and 6 years of suffering, I have learned
> to at least follow my heart and not see any doctors that I do not feel very good about. If you
> have any doubt at all about a doctor, Get out of that office and do not go back. Your heart has
> a way of telling you the truth. I have had doctors that said they knew how to treat me and I
> later found out that even though it was a huge pain clinic, there were only 7 of us with ARACH.
> They had not a clue as to what to do for us and they just kept the pain killers coming until I
> did not know who I was. Please do not let this happen to you.
> If I can help you in any way, please feel free to contact me.
> God Bless, Don & Jeanie St. Louis Mo.
>
>
>
>
> Donald R. Goeglein "( Big D)"
>
>
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