After suffering from TN for 4 years and going through a range of non-invasive and invasive interventions I have now been informed that I have anethesia dolorosa. it affects my left side of my face, the left side of my tongue my eyes my ears. it's painful to do anything...talk eat, smile and actually just about anything at all as the pain is constant and at quite a high level. Everyday and night i face excruciating pain and I feel sometimes like I'm going mad. The surgeon is quite disingenuous - just constantly saying give it time rather than just being honest with me..having read the posts in this forum i can see that this is a way of not taking responsibility for a condition I was not told about when I went for my MVD. I am considering legal action but the form I signed did say that my TN might get worse although it did not say that I could get a completely different condition.

I have been off work for 5 months now (since the last operation) and have tried just about everything to make the pain manageable. I'm currently talking to Cognitive Behavioral Therapy councilor, GP, neurological surgeon, Occupational Health guy, physio, my boss and have just been referred to the Chronic pain unit to learn relaxation techniques to see if that helps. I am so weary I'm fed up with talking about it, I hate what's happening and have thought quite seriously about how to end it all in the least painful way for my family members. I cannot bear to go back to work and face having to face the gauntlet of well wishers asking me how I'm feeling after such a long absence (selfish I know). I just wonder if anyone has successfully managed to be granted ill health retirement as a result of this condition. I live in the UK so maybe examples from here might be more relevant although I would welcome advice from anywhere in the world.

Daisy21, I was never told about A.D. either when I had the worst possible scenerio after an M.V.D that failed and then surgery number 3 at Mayo clinic where the trigeminal nerve was actually severed. Never was A.D. ever discussed by any of the neurosurgeons that did anything for me. In fact I didn't even know a name for it for about 3 years, although I
was given pain meds. I found neuroTalk quite by accident
and was so grateful to find I was not alone. I actually diagnosed myself.
I understand when you talk about ending it. I too knew that it was an option and It almost soothed me to know that. I would tell my husband "I can't do this" and he would hold my hand and say a prayer.
I have about six years of getting disability through Medicare from Social Security I was denied the first attempt but the second
time I was granted. It wasn't for the dx of Anesthesia Delorosa as I didn't have a name for it yet. It was for the extreme pain I faced everyday.
I am so sorry you are going through this. I believe it is the darkest days of my life and there is so much more I could write but this is Christmas Day and I have food waiting to be cooked.
Please let me know how things are going and if you have questions. I will try to help you the best I can.
Bless, Doodle bug7

I forgot to tell you that maybe you should tell the Neuro that you know exactly what it is and you just need the pain meds managed. I was never able to go back to my job on a busy medical floor.My face is numb on the T.N. side and has presented a lot of problems. I am on
several meds now. Doodle bug7

Dear Daisy,
I was granted long term disability from the private insurer that came with the benefits package at work. Boy, am I happy that I chose the highest level of that particular insurance - one is allowed to delegate $50 to whatever insurances they want the best, and a friend told me to put it towards disability, because it was most likely the one that I could need in the future - he had MS and surely needed his - wow, how prescient that was!
Happy holidays!
Lily

I guess it's one step at a time but thanks to people like you who are prepared to share your experiences i guess there is a way through...

many thanks

I have been considering applying for medical disability. I finally retired from my job of 35 years at age 59 because EVRYTHING became too much to bear. I receive a monthly retirement check but that doesn't cover any type of insurance. I pay $630.00 a month for insurance and my medicare doesnt start until I am 65 years of age. I am beyond frustration and I'm not sure if I have the strength to pursue trying to get disability.
My family doctor says it takes 2-3 years to get and trails off as she speaks. My psychiatrist tells me I would have a better chance having my family doctor sign off on it. I have absolutely no use for my neurosurgeon who all I heard from him was give the nerve time to heal it will get better. It has been 10 years now and it hasn't improved at all. Drugs hold down most of the pain but they have turned me in to a zombie. I try to take the minimum because I have a low threshold when it comes to medication. Neurontin and pristiq have kept me on the threshold. I started with tegretol until it wasn't effective, had Gamma Knife Radiation, didn't notice anything, then finally did MVD surgery. Now all three branches of the nerve are affected in my face leaving my left side numb including anesthesized cornea. I have been to a number of doctors and none of them have used the term anesthesia dolorosa. Why is that? I found that from my own research. My frustration lies in every doctor I see wants me to try drugs that I have already tried. They don't seem to understand the great difficulty of going off a drug that keeps you alive to try another one. I have so much anger toward doctors. If you don;t agree with them you are non compliant. My family doctor says to go to a pain clinic. I did that before and I felt as though I was on a assembly line. Everyone there got the same treatment. I was faithful and attended every session. Nothing worked and at the end of Pain Clinic I got a certificate, like I passed a course or something. I would love to get medical disability. Does anyone know if I might have a chance? Is it worth putting forth the energy of getting medical records, etc. Should I get an attorney? I live in Indiana, USA Please help.

I understand and feel every word you are saying. In fact its nearly identical to my story.

My friend...you can and will make it. It will be hard, but you will make it.





QUOTE=Daisy21;728384]After suffering from TN for 4 years and going through a range of non-invasive and invasive interventions I have now been informed that I have anethesia dolorosa. it affects my left side of my face, the left side of my tongue my eyes my ears. it's painful to do anything...talk eat, smile and actually just about anything at all as the pain is constant and at quite a high level. Everyday and night i face excruciating pain and I feel sometimes like I'm going mad. The surgeon is quite disingenuous - just constantly saying give it time rather than just being honest with me..having read the posts in this forum i can see that this is a way of not taking responsibility for a condition I was not told about when I went for my MVD. I am considering legal action but the form I signed did say that my TN might get worse although it did not say that I could get a completely different condition.

I have been off work for 5 months now (since the last operation) and have tried just about everything to make the pain manageable. I'm currently talking to Cognitive Behavioral Therapy councilor, GP, neurological surgeon, Occupational Health guy, physio, my boss and have just been referred to the Chronic pain unit to learn relaxation techniques to see if that helps. I am so weary I'm fed up with talking about it, I hate what's happening and have thought quite seriously about how to end it all in the least painful way for my family members. I cannot bear to go back to work and face having to face the gauntlet of well wishers asking me how I'm feeling after such a long absence (selfish I know). I just wonder if anyone has successfully managed to be granted ill health retirement as a result of this condition. I live in the UK so maybe examples from here might be more relevant although I would welcome advice from anywhere in the world.[/QUOTE]

Yes it is worth trying! It's not that hard, it did not take that long. In Pittsburgh, PA I was able to start on the computer for disablity benefits. I was denied the first time, then had an attorney appeal, had a hearing and won started benefits right away after that. I tryed working after my MVd, the surgery didn't work for me. I worked over 28 yrs. as a dental asst. I couldn't wear a mask with out being in pain, moving my head around all day was impossible I wanted to put my head down. Missing days, coming in late and leaving early. Not being able to do my job because of the meds. I am on. I seem to be able to handle the pain alittle better because I am able to slow my life down. Good luck Cheryl C.

Hi, So sorry to hear about your pain. I know how bad it is. I have it and was told that I will have it for life. Not good news of course. I am on permanent disability. I sure hope you are able to get it for yourslef. Take cre