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Arachnoiditis: Looking to talk with others
Spine Health | Last Active: 4 hours ago | Replies (405)Comment receiving replies
@dkhouri
Hi. I am very sorry to hear the desperation in your voice. Yor condition of Arachnoiditis sounds terrible. Interestingly I was just reading about pain pumps (another person on Connect is considering having one put in) and I read that Arachnoiditis is one condition that pain pumps work well for. In case it interests you, here is the website I was reading:
https://paintheory.co/chronic-pain/intrathecal-pain-pumps-for-chronic-pain/
You say you can not find any doctor to help you. What type of doctors have you seen so far? What did they say? Obviously you need to find someone in the right speciality who is willing to treat you. If it is truly incurable, probably a pain management doctor? What have you taken so far for your pain?
I also see that medical marijuana can be helpful for your sufferers of your illness, which is legal in MA I believe. Hope you find the help you need. Best, Hank
Replies to "@dkhouri Hi. I am very sorry to hear the desperation in your voice. Yor condition of..."
yes its terrible. I have seen various pain and spine docs where I live in MA. I have tried non traditional medicine as well. The problem is this is so rare that 99.9% of doctors will go their entire life without seeing 1 patient with this disease. It is also underdiagnosed so that's an issue as well. Its a mix between the fact i havent found the right doctor and that its so rare and there is no cure most doctors I have seen openly admit they have no idea what to do to help and have never seen a case like me before. There has to be a doctor out there who can at least understand me let alone help me. I just need to find that person .The doctors I have seen are the type that do an epidural injection if you have a herniated disc, or do facet joint injections. Very common things, that frankly can cause Arachnoiditis. So I need a real true highly qualified specialist, I just cant find one and I am wasting away, feel like I dont have much time left that I can live this way. I beg of anyone with any idea of a doctor anywhere in the world to help me, please let me know!
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Hank, thank you for sending this as my pain doctor has mentioned this as I finally found pain doc that understand Arachnoititis. I think my disease is progressing but it very difficult to know for sure because after 8 surgeries along with a operation that went bad for herniated disc. It took 3 operations to fix and therefore I have a lot of scare tissues and some doctors at Mayo do not recomend stimulator or any surgery. I get very skittish about implants of anything in my body especially from people with stimulator.
The worse part of all this pain is that I am a good golfer and live on one which causes real bad feelings about future along with losing contact with fellow golfers and the camaraderie.
Thanks again for your thoughts and help and I WELL revisit.