Doubting My Diagnosis

General General TN & GPN (Old Site)
1

I have been dealing with this for almost four years now and really started to believe it was all in my head. My doctors wanted to wait and see if it would go away and didnt run any tests to try and see if my complaints and symptoms were even valid. I would talk to friends and family and they all thought it was weird but at the same time brushed it off as if it were nothing. I finally went to a neurospecialist here in Dallas and just this week he diagnosed me with Atypical Trigeminal Neuralgia. He did EKGs, blood work and MRIs everything came back normal but due to my symptoms he diagnosed me with this. I was hoping for a quick fix like a cyst or something that could just be removed and it would all go away but instead nothing was found. I have done some research on ATN and Im doubting I was diagnosed properly. Everyone seems to have so much pain however mine isnt like that.

I constantly have numbness like when your arm falls asleep on my right side of my face, into my scalp, and down my neck a little. My ear feels weird all the time as well. There are times it gets a lot worse it seems to fade in and out randomly. When its at its worst My ear feels like it could burst, my cheek swells just slightly and it feels like its slightly stiff. Also it all feels like its on fire. I have not ever really experienced sharp pains though. It seems random I need to pay more attention to what sets it off worse because I only paid attention to stress which had no effect on it.

The doctor proscribed me Neurontin and I go back in a month. I feel like this is such a painful horrible disorder to have to deal with for others that I dont want to say I have this if I truly dont. Who knows maybe Im still in such denial and it to be honest this all just feels so weird to me that this is real Im not imagining my symptoms. I want it to go away but it never does and I just want to know what this is. So please if anyone could guid me in this I would appreciate it. If anyone thinks I should get a second opinion because it doesnt really sound like what yall are experiencing or even guidence on how to deal with it I would appreciate it more than you would know. Im really just tired of not knowing what it is or how to deal with it, and Im so tired of feeling alone.

2

Good evening,



YOU…are not alone, at all! You are now with us…as we share together!

Thank you, and keep looking for what you need to learn and then feel comfortable! with your findings as only then when it feels right for you!



Gerry

3

Hi, I have other TN symptoms but I also do experience what you said 'My ear feels like it could burst, my cheek swells just slightly and it feels like its slightly stiff'. I am new to TN and sometimes in denial but as soon as I forget to take 1 dose of Tegretol that denial is gone and reality sets in. I am sure more experienced members will have more to say and your questions will be answered. Take care.

4

I have neuropathic pain. (It presents itself like ATN). Right after my injury, I had numbness down into my neck but that has since gone away. I don't get numbness. Rather at the best times, I feel like my face is stone underneath the skin and it hurts and at the worst times, I feel like my face is in a grip and I'm constantly being stabbed. I also have a constant stinging feeling where my molar used to be. My pain is constant, though. Over 4 years as well.

I am on Neurontin as well. When I was on a high dose, it was effective but I couldn't think and was very tired. Too tired.

There is a specialist in NYC who I went to because he is excellent at determining what people have: Dr. David Sirois. He is a dentist but he has a PhD in neurology from Penn. Not sure if you want to make the trip but it might be worth it. Perhaps, though, someone has another specialist closer to you.

Remember you are not alone; you have this group. We understand.

JanetM

5

Thank you so much I appreciate it

Gerry said:

Good evening,

YOU...are not alone, at all! You are now with us...as we share together!
Thank you, and keep looking for what you need to learn and then feel comfortable! with your findings as only then when it feels right for you!

Gerry
6

Thank you for sharing your symptoms Im sorry you experience them I wish no one had to go through this. However Im glad Im not the only one I dont feel so strange and alone in this now.

collette said:

Hi, I have other TN symptoms but I also do experience what you said 'My ear feels like it could burst, my cheek swells just slightly and it feels like its slightly stiff'. I am new to TN and sometimes in denial but as soon as I forget to take 1 dose of Tegretol that denial is gone and reality sets in. I am sure more experienced members will have more to say and your questions will be answered. Take care.

7

I truly am sorry for your pain I wish Neurontin had a better response for you. Thank you for sharing your neurospecialist I may have to look into it later on down the road. For now I have a good neuro here his name is Dr. Cruz and he has been amazing and so sympathetic to my issues. I hope you only progress and get better from here.

janetm said:

I have neuropathic pain. (It presents itself like ATN). Right after my injury, I had numbness down into my neck but that has since gone away. I don't get numbness. Rather at the best times, I feel like my face is stone underneath the skin and it hurts and at the worst times, I feel like my face is in a grip and I'm constantly being stabbed. I also have a constant stinging feeling where my molar used to be. My pain is constant, though. Over 4 years as well.

I am on Neurontin as well. When I was on a high dose, it was effective but I couldn't think and was very tired. Too tired.

There is a specialist in NYC who I went to because he is excellent at determining what people have: Dr. David Sirois. He is a dentist but he has a PhD in neurology from Penn. Not sure if you want to make the trip but it might be worth it. Perhaps, though, someone has another specialist closer to you.

Remember you are not alone; you have this group. We understand.

JanetM

8

My wife is going to see this Dr next month for options a treatment. We live in Dallas and he is at UT Southwestern Dallas. He is highly recommended by the Texas TN Assc. I have a family member who is a neurologist with 40+ yrs experience and diagnosed my wife correctly the first visit. Best of luck to you

JW

http://www.utsouthwestern.edu/fis/faculty/35953/jonathan-white.html

9

My symptoms were very similar to yours. My pain was concentrated deep in my right ear; I felt like I had a constant ear ache, with some "lightening' jolts to my upper teeth, and cheek area. The medication certainly helped, but I would have almost daily "breakthrough' pain that was certainly hard to deal with. I, was also diagnosed with Atypical TN. On May 23rd, I traveled to Winnipeg Health Science Center in Manitoba, Canada and had MVD surgery. Dr. Kaufman was very patient listening to my symptoms as I also thought perhaps I had been misdiagnosed. Because my pain had started as a constant ear ache (four years) and progressed to lightening jolt pain, he explained that Atypical TN is less likely to present the same as "everybody else" and is more "unique" to each individual. He is a highly recommended nuero surgeon in our area. He recommended I have the MVD surgery, explaining the surgery "may not" totally fix the deep ear pain, but it would certainly take care of the jabbing pain I occasionly felt. I had a MRI which confirmed the compression of the fith trigeminal nerve.

It has been four days since the surgery, and I can say, it is the best thing I ever did. I also did a lot of research before the surgery, and decided before I even saw him, that this is what i wanted, given my health, age, sucess rate etc. of this surgery.

Post-Op to this surgery has been great. The jabbing pain is gone, and the deep ear pain, for the most part, is less severe, and certainly more liveable than it has been for the last four years. I am slowly being weaned off my medication (I was on the highest dose I could get) and so far, have had no complications. I feel great. The incision behind my ear is barely noticeable, and most people, if they did not know, would not even know I had an operation. His work is amazingly neat. As with most surgery, there is no 100% guarantee this is going to last forever, but I am willing to play the odds. I am slightly nauseated, have very little appetite right now, and require more sleep than usual, but all of that will disappear as I heal. My family and friends are amazed at how well I am doing considering the extent of the operation, and so am I!

Just because you are diagnosed with Atypical TN does not mean you have no options, a second opinion is usually wise, do your own research, and if possible, have a MRI. Although my pain was diagnosed as Atypical TN, the compression of the nerve, warranted surgery, and I am glad i did.

Wishing you all the best,

Deb

10

JanetM, You're right about Dr. Sirois. If I lived on the east coast he'd definitely be the doctor I'd want to see.

11

Thank you very much I will check it out.

JW said:

My wife is going to see this Dr next month for options a treatment. We live in Dallas and he is at UT Southwestern Dallas. He is highly recommended by the Texas TN Assc. I have a family member who is a neurologist with 40+ yrs experience and diagnosed my wife correctly the first visit. Best of luck to you

JW

http://www.utsouthwestern.edu/fis/faculty/35953/jonathan-white.html

12

Thank you for replying and sharing your experience. I know it sounds aweful but Im glad Im not alone in all of this. Im so sorry you are going through all of this. Im glad your operation was a success I hope it continues to have positive results

debram said:

My symptoms were very similar to yours. My pain was concentrated deep in my right ear; I felt like I had a constant ear ache, with some "lightening' jolts to my upper teeth, and cheek area. The medication certainly helped, but I would have almost daily "breakthrough' pain that was certainly hard to deal with. I, was also diagnosed with Atypical TN. On May 23rd, I traveled to Winnipeg Health Science Center in Manitoba, Canada and had MVD surgery. Dr. Kaufman was very patient listening to my symptoms as I also thought perhaps I had been misdiagnosed. Because my pain had started as a constant ear ache (four years) and progressed to lightening jolt pain, he explained that Atypical TN is less likely to present the same as "everybody else" and is more "unique" to each individual. He is a highly recommended nuero surgeon in our area. He recommended I have the MVD surgery, explaining the surgery "may not" totally fix the deep ear pain, but it would certainly take care of the jabbing pain I occasionly felt. I had a MRI which confirmed the compression of the fith trigeminal nerve.

It has been four days since the surgery, and I can say, it is the best thing I ever did. I also did a lot of research before the surgery, and decided before I even saw him, that this is what i wanted, given my health, age, sucess rate etc. of this surgery.

Post-Op to this surgery has been great. The jabbing pain is gone, and the deep ear pain, for the most part, is less severe, and certainly more liveable than it has been for the last four years. I am slowly being weaned off my medication (I was on the highest dose I could get) and so far, have had no complications. I feel great. The incision behind my ear is barely noticeable, and most people, if they did not know, would not even know I had an operation. His work is amazingly neat. As with most surgery, there is no 100% guarantee this is going to last forever, but I am willing to play the odds. I am slightly nauseated, have very little appetite right now, and require more sleep than usual, but all of that will disappear as I heal. My family and friends are amazed at how well I am doing considering the extent of the operation, and so am I!

Just because you are diagnosed with Atypical TN does not mean you have no options, a second opinion is usually wise, do your own research, and if possible, have a MRI. Although my pain was diagnosed as Atypical TN, the compression of the nerve, warranted surgery, and I am glad i did.

Wishing you all the best,

Deb

13

Thank you so much I wish you the best of luck. I had MRI's done and those came back normal but Im not sure if they looked at the trigeminal nerve. I will have to ask the radiologist at my work who read them and my doctor on the 21st at my follow up appointment. My Neurospecialist is Dr. Cruz he has been so sweet to me and I do like him its just all so new to me as far as the diagnosis and treatment.

debram said:

My symptoms were very similar to yours. My pain was concentrated deep in my right ear; I felt like I had a constant ear ache, with some "lightening' jolts to my upper teeth, and cheek area. The medication certainly helped, but I would have almost daily "breakthrough' pain that was certainly hard to deal with. I, was also diagnosed with Atypical TN. On May 23rd, I traveled to Winnipeg Health Science Center in Manitoba, Canada and had MVD surgery. Dr. Kaufman was very patient listening to my symptoms as I also thought perhaps I had been misdiagnosed. Because my pain had started as a constant ear ache (four years) and progressed to lightening jolt pain, he explained that Atypical TN is less likely to present the same as "everybody else" and is more "unique" to each individual. He is a highly recommended nuero surgeon in our area. He recommended I have the MVD surgery, explaining the surgery "may not" totally fix the deep ear pain, but it would certainly take care of the jabbing pain I occasionly felt. I had a MRI which confirmed the compression of the fith trigeminal nerve.

It has been four days since the surgery, and I can say, it is the best thing I ever did. I also did a lot of research before the surgery, and decided before I even saw him, that this is what i wanted, given my health, age, sucess rate etc. of this surgery.

Post-Op to this surgery has been great. The jabbing pain is gone, and the deep ear pain, for the most part, is less severe, and certainly more liveable than it has been for the last four years. I am slowly being weaned off my medication (I was on the highest dose I could get) and so far, have had no complications. I feel great. The incision behind my ear is barely noticeable, and most people, if they did not know, would not even know I had an operation. His work is amazingly neat. As with most surgery, there is no 100% guarantee this is going to last forever, but I am willing to play the odds. I am slightly nauseated, have very little appetite right now, and require more sleep than usual, but all of that will disappear as I heal. My family and friends are amazed at how well I am doing considering the extent of the operation, and so am I!

Just because you are diagnosed with Atypical TN does not mean you have no options, a second opinion is usually wise, do your own research, and if possible, have a MRI. Although my pain was diagnosed as Atypical TN, the compression of the nerve, warranted surgery, and I am glad i did.

Wishing you all the best,

Deb