Anasthesia Dolorosa

I´m wondering if anybody here suffers from Anasthesia Dolorosa and if so could tell me more

about what you do ?

Yes I have that plus atypical neuralgia. The only things I can think of are topical lotions that have mentol and lidocaine. I am not in that great of a place to give advice right now. Feb. 24th came and that was my b-day, it put me in a deeper depression. Having this AD and the atypical TN for 7 years is just too much. I made the mistake of having more surgeries thinking I would get better and it just made things worse. What kind of neurlgia do you have? I did do yoga and got on the treadmill and that really seemed to help. Plus I buy these sugar free cayanne pepper lozengers that help me. If you want the info, I can get it for you!!! Nice to meet you!

I had MCS and had it removed. It did nothing. I have AD and atypical TN. Jeffrey Brown did it. So far I think most people have had theres removed or just keep it in. I am glad I got it removed. But it was the most painful thing in the world. Let me know if you want more info. Totally feel the same way about seeing happy people, even in my family, although I am glad they are happy, I am so sad that everything was stripped from me. I was soooo happy before this happened. I really would like to get cancer and die gracefully most days…had to sound that way but I am in so much pain it is unbearable most of the time…

Pat said:

Hi Anna,

I feel the same way, like I found a kindred spirit. I just wish we all could have found each other under much better circumstances. It's good that you have Anders to help and care for you. I am fortunate to have my husband, Fred, be the same kind of person. His parents came to the US from Finland - his mother who is now 90 is Swedish.

That reminds me, have you heard of a product called Trignotab from Oslo? I don't know if it's effective at all but it claims to be natural and supposedly helps with the pain of TN. That doesn't mean that it would do anything for anesthesia dolorosa though.

What you said about life being so much easier before just breaks my heart as I completely understand the longing that goes on inside for just the simple, yet pain-free life that we lived before. The havoc that this intractable pain wreaks shatters our spirit no matter how hard we try to keep ourselves in tact. We have a public golf course behind our house and each day I watch people outdoors having a good time enjoying a sport, laughing and talking and I find myself so envious. Even when I watch advertisements on television and people are eating normally, smiling, laughing, etc., it's sometimes too much to bear seeing how much I/we have lost. Normal people don't realize just how much they take for granted. Now I am grateful for any little thing that I might be able to do. Of course I can't help but wish for more, that's human nature.

I wonder what came of your hospital visit the other day? Right now I'm researching motor cortex stimulation but am not feeling comfortable with what I am learning. It seems that the procedure has not advanced enough for surgeons to have a way of knowing who will benefit from it and who won't and where to place the electrodes for maximum benefit. The longest I've read of it lasting is close to 2 years. Not that 2 years without pain wouldn't be heaven, but I am still skeptical at this point.

Some people in this country with AD have had a peripheral nerve stimulator or spinal cord stimulator implanted and they say that it has reduced their pain by 40-50% and so far are very satisfied with it. Apparently the surgery is far less invasive but in the US considered experimental so some insurance companies won't approve it. It's another option to consider if the surgeon feels your situation could benefit from it.

Take care, Anna, and I hope you find something that will distract you from your pain for a time today.

Pat

Shouldn't say that I never got a call from Dolores (though I did) because AD is not a laughing matter.

I have a numbness in the back of my head from the MVD, and a brachial lesion which causes no physical pain.

Some interesting alternative therapies, including pain diversions/distractions, some of which I employ as my TN pain status is active. Here is the Google link http://ning.it/g09840

Nice of you to stop in Dawn, all of the words here touch me deeply. (((HUGS))) bob


This is certainly not a good disease, but you dont die gracefully from cancer. I assume you are in NY because i was and hae seen Brown. Perhaps you should be a bit more careful about what you are writing.I hope you get better!
Dawn O’Malley said:

I had MCS and had it removed. It did nothing. I have AD and atypical TN. Jeffrey Brown did it. So far I think most people have had theres removed or just keep it in. I am glad I got it removed. But it was the most painful thing in the world. Let me know if you want more info. Totally feel the same way about seeing happy people, even in my family, although I am glad they are happy, I am so sad that everything was stripped from me. I was soooo happy before this happened. I really would like to get cancer and die gracefully most days....had to sound that way but I am in so much pain it is unbearable most of the time..

Pat said:

Hi Anna,

I feel the same way, like I found a kindred spirit. I just wish we all could have found each other under much better circumstances. It's good that you have Anders to help and care for you. I am fortunate to have my husband, Fred, be the same kind of person. His parents came to the US from Finland - his mother who is now 90 is Swedish.

That reminds me, have you heard of a product called Trignotab from Oslo? I don't know if it's effective at all but it claims to be natural and supposedly helps with the pain of TN. That doesn't mean that it would do anything for anesthesia dolorosa though.

What you said about life being so much easier before just breaks my heart as I completely understand the longing that goes on inside for just the simple, yet pain-free life that we lived before. The havoc that this intractable pain wreaks shatters our spirit no matter how hard we try to keep ourselves in tact. We have a public golf course behind our house and each day I watch people outdoors having a good time enjoying a sport, laughing and talking and I find myself so envious. Even when I watch advertisements on television and people are eating normally, smiling, laughing, etc., it's sometimes too much to bear seeing how much I/we have lost. Normal people don't realize just how much they take for granted. Now I am grateful for any little thing that I might be able to do. Of course I can't help but wish for more, that's human nature.

I wonder what came of your hospital visit the other day? Right now I'm researching motor cortex stimulation but am not feeling comfortable with what I am learning. It seems that the procedure has not advanced enough for surgeons to have a way of knowing who will benefit from it and who won't and where to place the electrodes for maximum benefit. The longest I've read of it lasting is close to 2 years. Not that 2 years without pain wouldn't be heaven, but I am still skeptical at this point.

Some people in this country with AD have had a peripheral nerve stimulator or spinal cord stimulator implanted and they say that it has reduced their pain by 40-50% and so far are very satisfied with it. Apparently the surgery is far less invasive but in the US considered experimental so some insurance companies won't approve it. It's another option to consider if the surgeon feels your situation could benefit from it.

Take care, Anna, and I hope you find something that will distract you from your pain for a time today.

Pat