Arachnoiditis: Looking to talk with others

Have you checked the Mayo Clinic for info on how many cases of your illness they treat/have treated? I checked them for two friends who have unusual conditions and got the number of these cases they tend to see and treat per year (200 & 800).

@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:

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

thank you all for the kind words, its very scary to need help more and more each day and try so hard but be unable to find any help.

thank you all for the kind words, its very scary to need help more and more each day and try so hard but be unable to find any help.

Hi Colleen, thank you so much for your response! I have considered travelling for sure, and my life is truly on the line as this has progressed to be eating my body alive. Yet, is very difficult for me to be in the sitting position, so I would need to get a medical flight to Mayo. I would be willing to spend the money to do this for sure, I just need to find a doctor at Mayo and be sure I can be helped prior. Is there ways to do that. Also, as far as Boston, I am having a very very difficult time finding a doctor experienced with this disease. It is very rare so I am not surprised, but I have been bounced around for rover a year, without a management or treatment plan --- while the disease is progressing. I'm beginning to feel hopeless and forgotten. I'm sure many with this disease feel a similar way. What I am hoping to do is find a doctor who has seen and cared for patients with this disease before; that is my main issue locally over the past year. I am not overly willing to risk surgery for a spinal cord stim (unless I can find a doctor who truly has seen patients with AA before) since surgery and scarring is highly risky, and the cause for most people with arachnoiditis.

please may I ask who your doctor is. I need help so badly. i will not risk a stimulator surgery with arachnoiditis. I worry that I will find a doctor after a year who understands me but the answer is "we cant help you at all". I'm very worried my condition is progressive very much so. Its been only a year of progression I am 31, I have no idea how I will make it "lifetime" as this is horrible.

If you would be willing to share your doctors name, I'd greatly appreciate the help. I will travel jsut about anywhere. I will get a medical flight I will sell my home. I'm in dire need of assistance.

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!

@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

@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