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Arachnoiditis: Looking to talk with others
Spine Health | Last Active: 5 hours ago | Replies (405)Comment receiving replies
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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@dkhouri
The more I read about this, the more I am in the deepest sympathy for your situation. I have to believe you have already read all the online articles. I can't imagine anyone with this rare condition not reading everything they can get their hands on. But for the sake of discussion, I will mention two.
It looks like spinal cord stimulators have helped this condition, as per this article:
https://consultqd.clevelandclinic.org/rare-pain-condition-still-exists-in-new-forms-with-new-hope-for-relief/
You mention not wanting to have one without first finding the right doctor to put it in. I agree 100% but I think there should be a god number of those doctors around, a lot of these are being done these days, no? Also, try to understand the percentage of people with your illness who have had an SCS got significant benefits from one.
Another article here: https://www.marijuanadoctors.com/conditions/arachnoiditis/ This article states:
"medical marijuana can provide patients with immediate pain relief for their muscle spasms. Cannabis Indica strains can work to alleviate pain, aid in sleep and relax muscles. Cannabidiol has proven to demonstrate remarkable progress in relieving inflammation and easing the tingling and numbing sensations associated with Arachnoiditis."
I asked previously, have you or would you consider med. marijuana? At least as a stopgap pain reliever?
I do hope you find the doctor for you. I would strenuously try to get the attention of places like Mayo, Clevelands Clinic, etc. Or at the very least a teaching hospital. Again, I am saddened you have this, at any age, but 31 is way too young to have this burden placed upon you. You do at least need immediately to be provided a way to manage the pain enough so that you are not in unrelenting excruciating pain. You mention having seen a number of pain doctors already. What have you been offered for your pain and has anything been effective as yet?
Best, Hank