1. < Spine Health

Arachnoiditis: Looking to talk with others

Posted by arannek72 @arannek72, Jul 3, 2018

I just got diagnosed with arachnoiditis. The radiologist found it on my MRI. I have had 7 steroid injections and I fear that they have caused this chronic situation. My back is worse than it ever was.

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kimspr3 | @kimspr3 | Sep 30, 2019

Happy your cancer is gone. Mine was in 1999, chemo, radiation into 2000. I felt bad because Was Stage 1, told my Oncologist he said to me, Did you have cancer, I said yes, he said you had cancer as the others but perhaps not as bad but you still had it. He was trying to make melee better, but!

I can't sit long, very hard to travel. May I ask a question, would you be able to ask if he knows of a dr. in the New York area who treats, no surgery, no procedures done with that, who teats patients with AA? As I mentioned as soon as I say AA a door closes. So very important to have a good rapport with a doctor including a good sense of humor. I like to know I will have a bit of fun as I have with P. M. DR. Doctor. Very funny. Side effects of throat cancer gone? You have had difficult times also. I understand. Do you have a good support system? Mine, husband and 4, 4legged children. One is so compassionate. He's 95 LBS, big hugs, and kisses from him. I'm trying to make appt. with a Neurologist but first I have to fax him medical information. I hope he won't turn me away. Wishing you a good evening!!!!

REPLY
2 replies
kimspr3 | @kimspr3 | Sep 30, 2019
In reply to @donfeld "Kim, look up Healthywavemat. That is what I ordered for AA. Keep you fingers crossed." + (show)
@donfeld

Kim, look up Healthywavemat. That is what I ordered for AA. Keep you fingers crossed.

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I will, thanks

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kimspr3 | @kimspr3 | Sep 30, 2019

I'm sorry to hear that. Is there a safe plan for you yet? Do you live in Fla. Don has a good doctor.

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kimspr3 | @kimspr3 | Sep 30, 2019
In reply to @arannek72 "Hi Kim, The cya club is the (excuse my french) cover your ass club. I got..." + (show)
@arannek72

Hi Kim,
The cya club is the (excuse my french) cover your ass club. I got AA from an epidural injection. The doctor was rushing, she was having a hard ti.e and she forced the needle into my spinal cord. I felt it, screamed and immediately had a terrible headache spasms I had never had before. The doctor told me to wait and see if I felt the same the next day and if I did, she would give me a blood patch. My headache went away the next day and I only had the spasms sometimes so I thought I was okay. Four months later, the new pains were intensifying so my pain doc sent me for an mri. The radiologist very clearly saw AA. My pain doc tried to convince me it was just a coincidence.

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There is a well known dr. Dr. Forrest Tennant from Calif. retired. He mentioned Blood Patches, not to get them. He started Arachnoiditis Federation. I read about B. P. before. May I suggest, until you find a dr. who is well versed in the disease, to be very careful making your decisions. It upsets me when I hear again these medical biggies and they are never responsible. Please be careful. Try and get as much information as you can. You have to also be educated about AA. Let drs know you have researched the disease so they know you know what you talking about. Good luck to you

REPLY
1 reply
kimspr3 | @kimspr3 | Sep 30, 2019
In reply to @arannek72 "Hi Kim, The cya club is the (excuse my french) cover your ass club. I got..." + (show)
@arannek72

Hi Kim,
The cya club is the (excuse my french) cover your ass club. I got AA from an epidural injection. The doctor was rushing, she was having a hard ti.e and she forced the needle into my spinal cord. I felt it, screamed and immediately had a terrible headache spasms I had never had before. The doctor told me to wait and see if I felt the same the next day and if I did, she would give me a blood patch. My headache went away the next day and I only had the spasms sometimes so I thought I was okay. Four months later, the new pains were intensifying so my pain doc sent me for an mri. The radiologist very clearly saw AA. My pain doc tried to convince me it was just a coincidence.

Jump to this post

You speak French well. SMILE

REPLY
Donald | @donfeld | Sep 30, 2019
In reply to @kimspr3 "There is a well known dr. Dr. Forrest Tennant from Calif. retired. He mentioned Blood Patches,..." + (show)
@kimspr3

There is a well known dr. Dr. Forrest Tennant from Calif. retired. He mentioned Blood Patches, not to get them. He started Arachnoiditis Federation. I read about B. P. before. May I suggest, until you find a dr. who is well versed in the disease, to be very careful making your decisions. It upsets me when I hear again these medical biggies and they are never responsible. Please be careful. Try and get as much information as you can. You have to also be educated about AA. Let drs know you have researched the disease so they know you know what you talking about. Good luck to you

Jump to this post

I am dealing with his ideas for the last 3 weeks and I'm feeling a little better just to let you know. In fact they said some of his stuff to the Mayo Clinic and got a very poor response. Oh well

REPLY
1 reply
Donald | @donfeld | Sep 30, 2019
In reply to @kimspr3 "Happy your cancer is gone. Mine was in 1999, chemo, radiation into 2000. I felt bad..." + (show)
@kimspr3

Happy your cancer is gone. Mine was in 1999, chemo, radiation into 2000. I felt bad because Was Stage 1, told my Oncologist he said to me, Did you have cancer, I said yes, he said you had cancer as the others but perhaps not as bad but you still had it. He was trying to make melee better, but!

I can't sit long, very hard to travel. May I ask a question, would you be able to ask if he knows of a dr. in the New York area who treats, no surgery, no procedures done with that, who teats patients with AA? As I mentioned as soon as I say AA a door closes. So very important to have a good rapport with a doctor including a good sense of humor. I like to know I will have a bit of fun as I have with P. M. DR. Doctor. Very funny. Side effects of throat cancer gone? You have had difficult times also. I understand. Do you have a good support system? Mine, husband and 4, 4legged children. One is so compassionate. He's 95 LBS, big hugs, and kisses from him. I'm trying to make appt. with a Neurologist but first I have to fax him medical information. I hope he won't turn me away. Wishing you a good evening!!!!

Jump to this post

Throat cancer is 10 years out now going on 11 and a feeling fairly well considering but the damage is like another cancer growing it seems like who ate the pain on the side of my head and down my shoulders and neck and the loss of my teeth which is rotting away from the roots inside one big painting up you know what. No saliva glands so that's an issue but the neck spasms that I get without my injection as this doctor is the only one that can do it the right way. It's a specialty on to themselves and you got to be lucky getting the right doctor as I do a couple of them at the Mayo and one is on the borderline and the other one I'm finished with.

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1 reply
kimspr3 | @kimspr3 | Oct 1, 2019
In reply to @donfeld "I've been dealing with marijuana since the 60s and haven't stopped and never will and thank..." + (show)
@donfeld

I've been dealing with marijuana since the 60s and haven't stopped and never will and thank God. They haven't got it all those years and I still have it right as it's a natural wonderful no side effect drug that keeps us calm and collected. They had a special on CNN last night and it's moving in the right direction

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Hi don, Can't smoke anymore I have asthma from GERD. I used get non-stop giggles, Gubber choc. cover nuts so good at that time. I'm sure it would help this pain.

REPLY
1 reply
Donald | @donfeld | Oct 1, 2019
In reply to @kimspr3 "Hi don, Can't smoke anymore I have asthma from GERD. I used get non-stop giggles, Gubber..." + (show)
@kimspr3

Hi don, Can't smoke anymore I have asthma from GERD. I used get non-stop giggles, Gubber choc. cover nuts so good at that time. I'm sure it would help this pain.

Jump to this post

We just got to CBD coffee and it's fantastic. It tastes like the best coffee I've ever had and of course it has CBD in it which is making us feel so much better in the morning after drinking it. If you can't find it online I'll try and get you the link

REPLY
arannek72 | @arannek72 | Oct 2, 2019
In reply to @kimspr3 "Happy your cancer is gone. Mine was in 1999, chemo, radiation into 2000. I felt bad..." + (show)
@kimspr3

Happy your cancer is gone. Mine was in 1999, chemo, radiation into 2000. I felt bad because Was Stage 1, told my Oncologist he said to me, Did you have cancer, I said yes, he said you had cancer as the others but perhaps not as bad but you still had it. He was trying to make melee better, but!

I can't sit long, very hard to travel. May I ask a question, would you be able to ask if he knows of a dr. in the New York area who treats, no surgery, no procedures done with that, who teats patients with AA? As I mentioned as soon as I say AA a door closes. So very important to have a good rapport with a doctor including a good sense of humor. I like to know I will have a bit of fun as I have with P. M. DR. Doctor. Very funny. Side effects of throat cancer gone? You have had difficult times also. I understand. Do you have a good support system? Mine, husband and 4, 4legged children. One is so compassionate. He's 95 LBS, big hugs, and kisses from him. I'm trying to make appt. with a Neurologist but first I have to fax him medical information. I hope he won't turn me away. Wishing you a good evening!!!!

Jump to this post

I am going to see my neurologist this morning. He will only treat my seizure disorder and will not even talk about my AA. The office told me thas t I would have to see neurosurgery for it. Fat chance!
Has anyone ever had any relief from trigger point massage therapy?

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