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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richw250 | @richw250 | Aug 22, 2022
In reply to @memberofmayo "Send and and all discs you may have and if you don’t, get them, to Dr...." + (show)
@memberofmayo

Send and and all discs you may have and if you don’t, get them, to Dr. Forest Tennant of the Tennant Foundation. He diagnosed me and thousands of others with AA. He and his wife run the Foundation and are wonderful, wonderful people. I have his email address but I am afraid to leave this page and get it because I may not find you again, that may sound strange to you but this is my second time posting here and I don’t know quite how to operate this posting this. You can look up The Tennant Foundation and you will find the address there. I have this information to one other person as well. I have a list of Doctors as well Dr. Tennant had given me, among others, that I can give to you as well as the people on this forum looking for doctors in their area if they want it they only thing is the list can not be publicized at least that is what doctor Tennant has at the top of the letter head. And I want to be stay in good standing with Dr. Tennant because I still converse with him about my AA. Therefore, if anyone would like the list of Doctors just let me know I can get it to you however you choose. We all need the help and I’d like to do my part any way I can. I hope we all have less pain and may God bless.

Jump to this post

Thanks for posting,,,this is the first time I've been on this site..I was diagnosed by sending dr Tenant my mri 5 years ago, along with the Swedish pain and neuro group in Seattle,,, but since I have moved to NC they don't believe the dx history I have on paper at this pain clinic mostly,,,a have a new PCP also now and he won't deal with the pain part or the ankylosing spondylitis and severe stenosis in cervical,,along with myelomalachia in cervical near 5-6.. so I'm hoping to find a neuro group associated with UNC that has a few facilities in this smaller town of Lumberton... UNC chapel hill is where their main group is and its almost 3 hours from me... please send me a copy of the Dr. list that is hopefully familiar with AA while I can still walk.. which is getting harder and harder,, I also have to put petroleum jelly in at least one eye every evening,,,( very small amount and then patch over it for at least an hour ) my left side is barely usable and it's progressive,,tho very slowly... e.g. went from holding phone w left hand from 10 minutes to 1 minute in last 5 years...
I feel like I have giant slivers in arms and legs and hands and feet tingle and partly numb constant for the last 1.5 years... one radiologist said no AA a few years ago so the pain dr picks that one to listen to instead of the orthopedic that spotted the clumping who sent back to radiologist and then he saw it also..i think they look for the equina ... thing where its totally obvious before they might think about helping better... they did see the scaring in cervical so they do try and help a little but still dont prescribe a inflammatory that breaks the blood brain barrier like minocyclin or acetozolamide which did help before when other dr prescribed it a year ago... had to move away from WA tho after wife of 25 years wanted divorce before I end up in wheel chair ... which I do need if trying to stand or sit more than 40 min... any help would be nice...please use the add photo / file option and see if you can list drs there... thanks,,, RichW

REPLY
1 reply
richw250 | @richw250 | Aug 22, 2022

IF anyone knows of a good Nuero or other dr familiar with AA in NC or SC,,,please let me know...thanks,,,RichW

REPLY
ruby460 | @ruby460 | Aug 24, 2022
In reply to @memberofmayo "Send and and all discs you may have and if you don’t, get them, to Dr...." + (show)
@memberofmayo

Send and and all discs you may have and if you don’t, get them, to Dr. Forest Tennant of the Tennant Foundation. He diagnosed me and thousands of others with AA. He and his wife run the Foundation and are wonderful, wonderful people. I have his email address but I am afraid to leave this page and get it because I may not find you again, that may sound strange to you but this is my second time posting here and I don’t know quite how to operate this posting this. You can look up The Tennant Foundation and you will find the address there. I have this information to one other person as well. I have a list of Doctors as well Dr. Tennant had given me, among others, that I can give to you as well as the people on this forum looking for doctors in their area if they want it they only thing is the list can not be publicized at least that is what doctor Tennant has at the top of the letter head. And I want to be stay in good standing with Dr. Tennant because I still converse with him about my AA. Therefore, if anyone would like the list of Doctors just let me know I can get it to you however you choose. We all need the help and I’d like to do my part any way I can. I hope we all have less pain and may God bless.

Jump to this post

Thank you. I’m very frustrated that the diagnosis does not want to be discussed. I’ll reach out to Dr Tenant

REPLY
memberofmayo | @memberofmayo | Aug 29, 2022
In reply to @richw250 "Thanks for posting,,,this is the first time I've been on this site..I was diagnosed by sending..." + (show)
@richw250

Thanks for posting,,,this is the first time I've been on this site..I was diagnosed by sending dr Tenant my mri 5 years ago, along with the Swedish pain and neuro group in Seattle,,, but since I have moved to NC they don't believe the dx history I have on paper at this pain clinic mostly,,,a have a new PCP also now and he won't deal with the pain part or the ankylosing spondylitis and severe stenosis in cervical,,along with myelomalachia in cervical near 5-6.. so I'm hoping to find a neuro group associated with UNC that has a few facilities in this smaller town of Lumberton... UNC chapel hill is where their main group is and its almost 3 hours from me... please send me a copy of the Dr. list that is hopefully familiar with AA while I can still walk.. which is getting harder and harder,, I also have to put petroleum jelly in at least one eye every evening,,,( very small amount and then patch over it for at least an hour ) my left side is barely usable and it's progressive,,tho very slowly... e.g. went from holding phone w left hand from 10 minutes to 1 minute in last 5 years...
I feel like I have giant slivers in arms and legs and hands and feet tingle and partly numb constant for the last 1.5 years... one radiologist said no AA a few years ago so the pain dr picks that one to listen to instead of the orthopedic that spotted the clumping who sent back to radiologist and then he saw it also..i think they look for the equina ... thing where its totally obvious before they might think about helping better... they did see the scaring in cervical so they do try and help a little but still dont prescribe a inflammatory that breaks the blood brain barrier like minocyclin or acetozolamide which did help before when other dr prescribed it a year ago... had to move away from WA tho after wife of 25 years wanted divorce before I end up in wheel chair ... which I do need if trying to stand or sit more than 40 min... any help would be nice...please use the add photo / file option and see if you can list drs there... thanks,,, RichW

Jump to this post

Hello Rich thanks for your reply. Do you happen to have an email I can send the list to by chance?

REPLY
illpray | @illpray | Aug 31, 2022
In reply to @caklady "The Director of the FDA comments" + (show)
@caklady

The Director of the FDA comments

Jump to this post

Check out this link

arachnoiditishope.com/protocols/

REPLY
debbilee | @debbilee | Sep 24, 2022

I too have Arachnoiditis. Started
1984. I got it when they first came out with the MRI. If you had to have contrast they used Oil base dye or water base
dye..Well after my first MRI with Oil base dye
I was then there after diagnosed with having the awful A.. Now IAM 65 and was in my 20's.
Not in a wheelchair but I feel it's coming..The pain is so alike your's.
Last night in bed was the worse. My Lumbar feeling like I was hit with a baseball bat and both legs numb tingling hurting.Then all the sudden my Right leg hurt so bad from my knee down.Under my knee felt so bad. The top not as much..It went down my leg feeling like it was deep in top part of my bone and my ankle hurt the worst. My foot my toes all numb feels like they get cold like an ice cube. I also have that coldness on the outside of my right leg from knee down.. IAM a workmen's comp patience since 1981. Therefore I have had two surgeries many MRI and emgs. I've been saying for years I need to see a arachnoiditis doctor. And now I am at the point I need to find that type of doctor before I find myself in a wheelchair too. Thank you all for listening Debbi

REPLY
4846 | @4846 | Nov 6, 2022
In reply to @zerootonna1 "My daughter has a rare diseare also name Neuro Myelitis Optica NMO for yourlimbs and nervous..." + (show)
@zerootonna1

My daughter has a rare diseare also name Neuro Myelitis Optica NMO for your<br>limbs and nervous try cod liver aka fish oil i use the fish oil supplement<br>with a multiple vitman. My daughter was parylze off and on for a year due<br>PTS aka painful tonic spasms. This may not be an instant relief but with<br>belief in God and Prayer she is walkiwng running jumping '<br>

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Hi. How is your daughter doing. ?🙏

REPLY
1 reply
debbilee | @debbilee | Nov 7, 2022
In reply to @marlenew "Msaliceinpain so sorry this happened to you, you most definitely sound like you have Arachnoiditis and..." + (show)
@marlenew

Msaliceinpain so sorry this happened to you, you most definitely sound like you have Arachnoiditis and possibility a nipped nerve because it sounds so severe so fast. You need to get a Neurologist or Neurosurgeon to do that MRI on lumber with and without contrast so they can see and read it. My MRI's since my spinal surgery in 4/2015 all say Arachnoiditis can not be ruled out, will my highly respected Neurosurgeon put it on paper as a diagnose? Guess not, I also from surgery now have Cauda Equina. I am in pain everyday with allll types of new and horrible symptoms constantly popping up. The pain meds he gives me are a joke, I need to find a pain management Doctor that understands this disease and how debilitating it is and I just don't know, I'm so afraid they will only want to give me injections and I say h@ll no to that since they are one of the top causes of this disease. I so feel for you this takes your quality of life away and brings you to lows you never thought possible. I am on a Facebook support group called Arachnoiditis Everyday, it helps to at least learn more and not feel so alone. Everyone there talks about an expert on Arachnoiditis in California- Dr. Tennant I hope that's the correct spelling, I don't know if he's taking new patients but I guess it's worth a try looking him up. Best of luck to you.

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Thank You, I have been reading about him..You spelled it right..is name is Forest Tennant..I live in Florida am sure we have someone but I might try to get out there .His name is coming up alot..

REPLY
1 reply
debbilee | @debbilee | Nov 7, 2022
In reply to @dutchgirl1 "Hi, i am also from nc. I was just told that i could have arachnoitis. Scared..." + (show)
@dutchgirl1

Hi, i am also from nc. I was just told that i could have arachnoitis. Scared to death...have you found a dr?

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The best thing for you is to get you a treating doctor . Look up Forest Tennant..He's out California. That's the best thing to do. I know I was very scared at first but now I take my flare ups as they come and they go. Find you a good doctor that you know they're going to take care of you. As for now I have a pain management doctor but I wished when I first found out I had Arachnoditis I would of found a treating AA doctor. Don't give up you will be able to fight this dragon.

REPLY
debbilee | @debbilee | Nov 7, 2022
In reply to @4846 "Hi. How is your daughter doing. ?🙏" + (show)
@4846

Hi. How is your daughter doing. ?🙏

Jump to this post

Thank you so much for sharing your wisdom. You're right believe in God and there's power in prayers.

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