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.

@walker4

I thought Dr. Tennant retired?? Do they charge to do the phone consult after reviewing your MRI?

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@qball2019

@walker4

I thought Dr. Tennant retired?? Do they charge to do the phone consult after reviewing your MRI?

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Yes, Dr. Tennant retired in 2018, but he is still helping us. Contact him. He does not do a phone consult, but rather writes you a letter with his findings. You send a Donation to his Foundation, after you get your diagnosis.

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I had one injection. Had Sharp pain during but went well after. About 4 months later started having hip and low back pain. Now 14 months later burning in low back and LEGS. Had 3 MRIs nothing showed . Don't understand. I do have just been diagnosed with Axonal Neuropathy and small fiber polyneuropathy. Could any of these cause this or do I have AA.

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@haggyrae

I had one injection. Had Sharp pain during but went well after. About 4 months later started having hip and low back pain. Now 14 months later burning in low back and LEGS. Had 3 MRIs nothing showed . Don't understand. I do have just been diagnosed with Axonal Neuropathy and small fiber polyneuropathy. Could any of these cause this or do I have AA.

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Please contact Dr. Forest Tennant at 626-919-7476
veractinc@msn.com
California
He can help you understand.

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How are you doing with your. Arachnoititis?

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@jackiekinney

Hi! I’ve been suffering for almost 5 years constant back pain with terrible muscle spasms. I can’t stay in one position for long because of the pain. This started right after I had my epidural for my last child. I had to have a c section for both my kids with no problem with the first. I’ve been seeing my general practitioner for 4 yrs and have had absolutely no relief and they can not tell me what’s causing this. I’m a physical therapist assistant so I’ve always been active and caution with my back but I can not even work. I have difficulty raising my kids because of the pain and barely sleep at night since it wakes me up in terrible pain. I’ve been searching for years to find out what’s wrong and came across arachnoiditis. I get occasional tingling and numbness in my legs but it’s inconsistent. Any suggestions?

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How are you doing with pain from Arachnoititis and is it adhesive?

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PLEASE HELP…. struggling with arachnoiditis cannot find help… live in MA! all help welcome!

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@dkhouri

PLEASE HELP…. struggling with arachnoiditis cannot find help… live in MA! all help welcome!

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@dkhouri Have you tried Boston General.. very good Clinic/Hospital..

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@dkhouri

PLEASE HELP…. struggling with arachnoiditis cannot find help… live in MA! all help welcome!

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@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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@c_edward

Possible Clue……..While researching myelograms I came across ‘arachnoiditis’ for the first time.

Now a few years back I had a series of (3) epidural steroid injections as treatment for pain caused by fused C4-5 vertebrates having “came loose”. Very shortly afterward I began to live in constant pain like I never had experienced….never knowing why but thinking it was nerve damage. Two EMG’s and both came back negative.

Today I read two articles, one on WebMD and the other on Spine Universe (this site does not allow me to post links – I may try again in a few days time). Each states “….there is a concern that preservatives found in epidural steroid injections may cause arachnoiditis.” Arachnoiditis may in part, full, or not at all be my condition but the information in these articles so closely mirror my symptoms and struggles it’s scary. So I’m on a journey now, to see IF it is probable the epidural steroid injections I received contained preservatives and the possibility this caused my condition.

I hope this information will be useful to you in some way and I hope you find significant relief. I will post any findings.

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I just saw your post. I hope you are still on the Mayo Clinic site. I also had a steroid injection in my neck area that immediately caused severe neuropathy pain in my feet, legs, hands, and arms. None of the doctors that I have seen (Cleveland Clinic, Johns Hopkins, etc.) want to acknowledge that the steroid shot could have caused my pain. I have not found any doctors who will address it. However, I did find a former doctor who has started a foundation to help arachnoiditis patients and also people who suffer from intractable pain. He recommends a drug protocol that is supposed to help inflammation in the spinal canal. The foundation name is "Tennant Foundation". I have been following it partly for a few months. I cannot say that it has helped appreciably. My pain is a little more manageable, but it is hard to tell what is helping and what is not. I think that the steroid injection could definitely cause arachnoiditis. My shot used Kenalog, which is supposed to be very toxic to nerves. Do you know what steroid they used on you?

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@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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@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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