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Arachnoiditis Sufferers User Group
Happy to have found others with this condition
About This Group:

Arachnoiditis is a rare chronic neuropathic disease that has no cure. If you are looking for others who have this disease, you have found the right place. Take a moment to tell your story. Together we can help each other in our journey with Arachnoiditis.

Founded by mummy3too on July 30, 2010
24 members
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Happy to have found others with this condition

I was happy to have found a group of people with arachnoiditis but it appears that no one has been to this site for over a year.  I was dx in 2010 after my 10th back surgery (several reasons for the surgeries but its not worth listing all).  I will say it all started with a car accident in 2001.  I have been seeing a pain management dr for 6 years and he and his team offer injections and pain meds as treatment.  Whenever I say my pain is getting worse they schedule me for another injection.  I am his only patient with arachnoiditis.  When I was seen by one of his PAs she had to leave and go ask someone what the condition was.  Are there any doctors that really know how to treat this problem?  I would go anywhere in the US to see someone who does.  I would love to hear from others in this group.....I'd like to know how all of you stay hopeful when the pain gets unbearable.  Please let me know.
Tags: arachnoiditis treatment
6 Comments
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Hi..I saw your post.  I just came here and posted and was hoping to find someone to talk to about adhesive arachnoiditis, which I'm pretty sure I have.  My first post is here explaining my story and questions.in case you don't see it, here it is again.  also did you ever find a support group?  Thanks and nice to meet you, I'm Julie.
Idk if I have adhesive arachnoiditis but I have a good idea that I do.  I have systemic lupus and have 9 nerve entrapments dx all at once and progressing.  I have dx by my neurologist from EMG with carpal both hands, tarpal both feet, ulnar both arms, radial on the right, pereonal on the left.  I also have trigeminal neuralgia both sides, geniculate neuralgia on the right and occipital neuralgia both sides.
Some of most incredible cooincidences that MIRROR my condition include having symptoms of cranial neuropathies, burning mouth syndrome, solar urticaria, neurogenic bladder, burning feet pn and the misdiagnosis when having adhesive arachnoiditis of cervical spondlyosis (check), ulnar and carpal tunnel (check), cervical spondylosis (check) and EMG (check again)
In addition and I am not sure if this is relevant is that I have some cns involvement, my recent EEG after a possible TIA showed slowing of brainwaves on the left side.  My ANA's while high on occasional tests, is constantly kicked back from the lab with a note that says "unable to obtain results due to immune complexes".  My rheumatologists always raise an eyebrow during this but the only info I get from the lab is that my blood looks like little pacmen eating each other up..???  Idk if that is important, lol.

I've often suspected some kind of inflammation of blood vessels since my cranial neuropathies are intermittent.  

I also recently started having dental problems, sores on and under my tongue, some lymph gland inflammation and my teeth are starting to chip.

My neurologist says he suspects seizures and is studying my recent MRI's.  

I am being scheduled very soon for an anterior fusion of my cervical spine.

I recently had a bout of sacroillitis (it was awful) and have occasional hip and near tailbone pain.  I have osteoarthritis and dgenerative disc disease with some lordosis of the cervical spine as well.

My grandmother also had my exact symptoms at the same time of life as I do.  Lupus, inflammatory arthritis, bouts of sacroilllitis, TIA's, extensive nerve problems, bells palsy, burning mouth syndrome, trigeminal neuralgia, lordosis (hers was severe) and she had ankylosing spondylitis.  I suspect I am or might be at the beginning stages of this as well but I have not had an MRI to confirm.  I had an xray of the area and all they found was a slipped vertebrae at L4 but I can tell the difference in pain, are you kidding?, lol and THAT is not the same as the bout of sacroillitis I experienced.  I couldn't move without pain, had to have help getting up and down, couldn't be touched in my hip and right side of my tailbone area, couldn't find a position to sleep in, etc.  Not from the slipped disc.  It was an incidental finding in my strong opinion.

So that's it.  I've been in pain management for many many years for oa, peripheral neuropathy (the entrapments are new but I had (not anymore!) pn for about 14 years.  I get radiofrequency ablations in my neck and cortisone shots in my feet for really bad plantar fasciitis.

What do YOU think?  What tests should I ask my neurologist for?  Would a nerve/muscle biopsy answer any questions?

My plan right now is to keep treating the symptoms.  I'm on lots of meds including pain meds and anti-seizure meds.

I'm used to living with pain.  My grandmother in spite of having these problems lived to be 94.  Her mother lived to be 105.  I'm happily married 23 years am age 51 and have two children, one grown and a 12 yr old boy.  I live in Phoenix, AZ.  Truth is I'm not worried about being dx'd for this condition.  I understand it's alot like my lupus, you don't wait till things get worse and treat the symptoms and conditions they cause as they come and move on.  I work from home now and am a graphic designer.  I applied for SSDI (social security) but was denied several times in spite of them recognizing I have a dozen chronic illnesses and I have a lawyer now and have been waiting the last year for a hearing date to be seen in front of an administrative judge.

That's about it in a nutshell.  Thanks for being here and I hope you get this email.  I understand this condition is rare.  If there something I can do to help someone I would gladly do it.

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Thanks for writing.  I was dx after my 3rd myelogram.  I've had other myelograms since and each shows the same condition with some progression.  I don't know if there are any other tests that might show arachnoiditis.  The scary thing about myelograms is that they are listed as a possible cause of arachnoiditis.  I have a neurostimulator so I cannot get MRIs.  I hope you are not dx with this condition.  You are already suffering through so much.  Good luck and my name is Barbara.  
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I was wondering how long it took for symptoms to show? I received an epidural 4 months ago and stated showing symptoms 2 months after. It's hard to find any information about this.
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I'm amazed that you've had that many meylograms. My spine problems started in 1982 and I had ONE myelogram in December of that year. None of my other doctors seemed to ever even consider them. Since then I've had either CT scans or MRI's whenever there is a reason to look at things again. I've also had multiple spinal surgeries, including a fusion, a repair of that fusion, and a repair of stenosis after the bone growth got overly exuberant. During my last spinal surgery in 1986 the dura was accidentally torn and the surgeons diagnosed extensive arachnoiditis by visual inspection. I was told that nothing could be done about it, and I believe that because I have a number of other problems with scar tissue in other parts of my body and attempts to help with one of those has only made it much worse. I was also warned that it could be progressive, but thankfully it does not seem to have progressed much over the years. I am treated for pain only, with narcotics. I turned down a neurotransmitter because I just don't want to ever again have any surgeon near my spine, not unless it is a life or death situation.

So, do you know why your doctors are relying so heavily on myelograms? I kind of thought they had become outdated, but maybe I'm wrong. BTW, I've had that experience of medical personnel not knowing what arachnoiditis is too. It's really scary when its coming from a doctor who specializes in pain medicine or spinal problems!
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The reason my doc has ordered so many myelograms is because I cannot get MRI's because I have the stimulator installed.  Each time something new happened they would do a myelogram to figure out what was going on.  I doubt that I will allow any more myelograms though unless it is absolutely necessary.  I'm glad that you haven't had much progression and I hope that you never do.  Good luck!  
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Well I guess that makes sense but I'd agree with you in not having any more unless conditions became really threatening. I didn't get far enough in considering the implant to have been told about the MRI difficulties. I did just look it up on Wikipedia and read that Medtronics makes the only stimulator implant that is MRI-safe and even then it may not be safe if the installation includes some parts made by other manufacturers. I thought they would just be worried about heating up the metal parts (and I know good MRI operators can deal with small amounts of wire being present as my back still contains some) but apparently they can cause the unit to go beserk and result in serious injury. Yikes! So how much relief do you get from the device? I had a external TENS unit long ago but it only gave me about 20% relief and was a huge hassle. I think it gave me a more negative outlook on trying the implant. I had the same response when offered an implant for delivering narcotics directly to my spinal cord - I've been so very unlucky about spinal surgery it seems that if anything can go wrong it will for me. I've been getting by with regular narcotics in quite modest amounts, but geez, it sure does keep getting harder to get a prescription filled. My doctor is fine but the anti-drug hysteria keeps causing shortages in local pharmacies.
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