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.

@donfeld

Did you get an MRI with contrast on your pelvic area because that will show whether you have it or not.? I am not a fan of opioids because when I was on it I never felt right and when I came off it the withdrawal was terrible. It is a terrible drug and all pharmaceutical drugs are terrible with side effects which are sometimes worse than they cure. Thank God I smoke marijuana because that's the only thing that calms me down with my pain and relieves it and the THC does work for pain and calmness. Try it you'll like it!

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@donfeld MRI, yes, with contrast, no. I'll talk to my doctor. I don't think I want to smoke Marijuana. I haven't done that since high school and I didn't really like it then, but if it works for some folks then go for it.

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Please join the Facebook Group, "Arachnoiditis: Together We Fight". Then you will need to get an MRI of your Lower Lumbar with/without contrast. Then have a copy of that CD, mailed to: Dr. Forest Tennant, Tennant Foundation, 334-338 Glendora Avenue, West Covina, CA 91790-3043. He will take a look at your images, and give you his diagnosis of your condition. Like you, I had an ESI injection in L5-S1 that went horribly wrong, and it caused my AA. I have been suffering in ecruciating pain for more than 19-months, now, and just got my diagnosis, from Dr. Tennant, tonight. Please join this FB Group, listed above. You will learn so much and will have access to a lot of information. Go to: arachnoiditishope.com and print out the most important information for AA Sufferers, that Dr. Tennant has researched for us. I live in VA., and there are just 1-2 dr.'s, in this state, who know anything about AA. Print out those AA Handbooks, and take them to your dr. appts., as you will need to educate your PCP. PM Doc, and any other spine doctors. It's quite a painful journey, but once you get started on the Dr. Tennant's Treatment Plan, you will begin to get better and feel so much better.

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I was repeatedly told that I did not have AA, too. Once you get your CD with MRI Lower Lumbar images to Dr. Tennant, you will find out, otherwise. Good luck and follow my advice, above, so you won't feel alone in this, msaliceinpain.

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@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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