1. < Spine Health

Arachnoiditis: Trying to find a specialist

Posted by msaliceinpain @msaliceinpain, May 22, 2016

I am from North Carolina. And out of the 15 doctors I have seen since 2015 have said that arachnoiditis is rare and you do not have it. But no one is listening to my symptoms. Received a shot in my L5. But the doctor missed and hit the nerves while injecting Since that date I went from being able to walk to not at all. I am now in a wheel chair. Pain is in both legs to toes. None of the pain meds that my pain management has prescribed touches the pain. I have jerks in both of my legs. Weakness. Tingling and numbness in feet. My right eye has lost vision. I sweat on the top of my head for no reason. And out of the 3 MRIs I have had none have been done on the lumbar wth contrast. The pain gets worse week by week and no luck on finding a doctor. We are willing to travel if necessary. Please help.

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contributor | @contributor | Jun 7, 2021
In reply to @donfeld "First place even the top pain doctor at the mail says it can't hurt you or..." + (show)
@donfeld

First place even the top pain doctor at the mail says it can't hurt you or does it harm you and it may work. It's been around for years Nasa uses it for the pilots coming back from space after a year to get their body back in shape I should does increase blood flow which reduces inflammation and reduces pain. I've spoken to this doctor who promotes some of his machines and he claims that he can cure it and he'll give you a 45-day trial. If you don't like it get your money back. I am going to do it cuz I have nothing to lose and so do you. Look into it. Healthy wave mat I think it's called is rated High and the prices like eight hundred bucks. 45 day free trial. I'm ordering it tomorrow and after 45 days I'll know if it's worth it. We must try things out of the box as long as it's not dangerous. It's far better than surgery or pills or injections. If you have trouble looking up I'll get you some more detail of where to go. If you look up pemf you'll go to a number of different sites and comparison reports. Don

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Hello, did the Healthy Wave Mat help your AA?

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1 reply
contributor | @contributor | Jun 7, 2021
In reply to @qball2019 "@dkhouri I'm so sorry to hear that you're suffering and can't find help. I can definitely..." + (show)
@qball2019

@dkhouri

I'm so sorry to hear that you're suffering and can't find help. I can definitely relate to you. I've been in a similar position for 17 years but have recently found help!! I'm so happy to be able to pass this info. on to others.

http://arachnoiditishope.com/ (Dr. Forest Tennant)

This site provides a ton of info. and it's so validating and eye opening! You can print some of it out to bring to your current doctors for consideration. It also provides a self help protocol. If you have arachnoiditis then this is where you need to be. You can also contact Dr. Tennant's team with questions.

https://intractablepainsyndrome.com/ (Dr. Forest Tennant)

Anyone that is in pain should visit this site! Again, it provides info. for you to bring in to your current doctors, a self help protocol, and you can contact Dr. Tennant's team with questions.

https://www.frankfeigenbaum.com/ (Dr. Frank Feigenbaum)

Dr. Feigenbaum is going to perform surgery on my Tarlov cysts. He specializes in Tarlov cysts but does a bunch of different procedures. I'm pretty sure he would also be able to take care of arachnoid cysts!

https://www.hypermobilitymd.com/medical-services (Dr. Linda Bluestein)

I have been seeing Dr. Bluestein for a couple years now. She is an integrative pain specialist and anesthesiologist. She specializes in hypermobility (EDS) but also treats patients from all over the U.S. for a wide range of pain. When you hit this link, scroll down to the bottom of the page and click on "Office Policies And Procedures". There you will find her rates and contact info. She does not accept any kind of insurance so you will have to pay yourself but it's so worth it. This is a doctor you will want in your corner. Her expertise and understanding of your condition will amaze you!! You can see her in person or via televisit. She knows Dr. Tennant whom I mentioned above.

** Dr. Tennant and Dr. Bluestein both recommend palmitoylethanolamide (PEA) for pain. I started taking it about 3 weeks ago and I can already feel a difference in the hip pain when I stand up. You will need to be patient because like so many other supplements, it will take 3 to 6 months to feel the full effects. It is supposed to be as effective, if not better than opioids! Below is a link to an article about PEA that I came across. If you don't want to read all the scientific stuff then scroll down to the part where it talks about the results it has in their patients. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3500919/

I hope this helps you an anyone else that comes across this post! Take care everyone!

Terri

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Please tell me which brand of PEA you are taking? Thank you.

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1 reply
Moderator
Amanda Roe | @amandajro | Jun 8, 2021
In reply to @contributor "Hello, did the Healthy Wave Mat help your AA?" + (show)
@contributor

Hello, did the Healthy Wave Mat help your AA?

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Hello @contributor and welcome to Mayo Clinic Connect. I can see from your posts that you are interested in connecting with members @donfeld and @qball2019.

While we wait for them to respond, can you share more about your experience with Arachnoiditis?

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qball2019 | @qball2019 | Jun 13, 2021
In reply to @contributor "Please tell me which brand of PEA you are taking? Thank you." + (show)
@contributor

Please tell me which brand of PEA you are taking? Thank you.

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Sorry for taking so long to reply. I just haven't been on my laptop very much. The PEA I take is Lake Avenue Nutrition PEA (Palmitoylethanolamide). They are on Amazon.... link below. These are 300mg and I take 2 of them twice per day. You can take up to 1200mg twice per day though per what I've read at http://www.arachnoiditishope.com and on the NIH website. Maybe start out at 600mg for a month and if you're still not getting enough relief go up from there. I say a month because you have to take it for awhile before notice some relief. Have you read the article on the NIH website? Here is the link for you https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5094513/ There's a bunch of scientific stuff but try to kind of skim through it. Read the article but pay most attention to the chart they have with the different doses for different kinds of pain. Please let me know if it helps you! Best of luck!

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contributor | @contributor | Jun 14, 2021

Thank you so much for this information. I was hit by a car and AA has taken over my life and I am desperate to get better.

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judithelaine | @judithelaine | Jul 7, 2021
In reply to @kimspr3 "You mention 2 great doctors, may I add, The Burton Report, There is another informative web..." + (show)
@kimspr3

You mention 2 great doctors, may I add, The Burton Report, There is another informative web site, Arachnoiditis a quiet web of suffering. find them also on Facebook. Within their pages we can offer information on Aracachnoiditis, Adhesive Arachnoiditis which is worse, do's and dont's when thinking about therapy, aqua therapy, exercise or miracle cures. PT, Aqua Therapy, Stretching, I did it all because dr's thought it would help but it caused more pain. They were not to familiar with AA.I trusted them. I have A.A./BJA: British Journal of Anesthesia, Chronic Adhesive Arachnoiditis. Very informative. Joan you are so right when you say research.

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Yeah, even sitting here typing, treading standing, step-ouch, step-ouch. Thanks for Burton Report, will look at it. My best to ALL

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kenyalama | @kenyalama | Jul 8, 2021

Symptomatic arachnoiditis and DDD, pain, numbness, stiffness but EMG is normal

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kenyalama | @kenyalama | Jul 8, 2021

You should go to any Mayo Clinic in the country
It sounds like my story
No doctor in Houston ( best medical center in the country, Methodist Hospital) wanted to order an a MRI with contrast. That was the first test idoctors at the Mayo Clinic ordered. when I went . And they diagnosed my arachnoiditis.
Unfortunately it has gotten worse in my case and I get nerve blocks once in awhile or epidurals ( not great )
I also use a wheelchair
Good luck!

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kenyalama | @kenyalama | Jul 8, 2021

I will ask a question again and my apologies if this was posted already
I would like to know if anyone with symptomatic arachnoiditis diagnosed through MRI has had a normal EMG
I know my pain, stiffness, numbness, tingling. My new neurologist it seems, is trying to convince me I should not have any of it with the normal EMG

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1 reply
contributor | @contributor | Jul 9, 2021
In reply to @kenyalama "I will ask a question again and my apologies if this was posted already I would..." + (show)
@kenyalama

I will ask a question again and my apologies if this was posted already
I would like to know if anyone with symptomatic arachnoiditis diagnosed through MRI has had a normal EMG
I know my pain, stiffness, numbness, tingling. My new neurologist it seems, is trying to convince me I should not have any of it with the normal EMG

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My EMG was not terrible, but not completely normal. After getting hit by a car while walking, I got a whiplash concussion with a brain bleed. I was not diagnosed with Arachnoiditis for over a year after an MRI of my spine. My symptoms are burning feet and leg pain, and electric shocks all over. I am taking gabapentin at 600 mg a day and it relieves the pain somewhat, but I can't handle any higher dose. Loopy and memory issues. I need to find a neurologist that knows something about this. Very frustrating.

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