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How do you get diagnose?


#21

Funtsie, thanks for your kind reply.

As I read my previous comment, I thought I would clarify my suggestion concerning asking doctors tough questions and whether they have seen a patient with GPN. I’m specifically talking the doctors you choose wile going through the process of trying to find out what illness you have.

When you have a condition like GPN, it can be very difficult to get a proper diagnosis, especially if you don’t live in an area where you have access to top medical care or you happen to have a specialist nearby that by chance has experience with GPN. In my case, years went by where I was diagnosed with conditions like TMJ and atypical facial pain. This led to treatment that did not help.

For those of you who don’t know what “atypical facial pain” is, it’s basically a default diagnosis given when the doctor does not know the cause of your chronic neuropathic pain. Looking back, I should have moved on to a different specialist more quickly after they gave me a diagnosis of atypical facial pain. There are some world renowned doctors that don’t believe atypical facial pain should be used as a diagnosis. There may be some truth in that but I’m not sure I would go that far.

Going back to my point, once you think you have been properly diagnosed, I think its fine to have doctors that don’t have experience with GPN. The doctors you end up choosing at this stage must be committed to learning about GPN and also taking the advice of a say another doctor experienced with GPN. For me, both my primary care doctor and pain management doctor, have never seen a case of GPN. But they have taken the time to learn about GPN and they take the advice of the neurosurgeon who did my MVD, Amin Kassam, MD.

Hopefully my experience will help those out there who are still looking for a proper diagnosis, even if they don’t have GPN.


#22

Thank you, Gipp, for your advice.
Yes I agree… The hardest thing is to get a right diagnose.
I also had a Tmj trestment too long because my many Tmj drs keep saying it’ll take time to see improvement.
So your case, you went to see Dr. Kassam for GPN? Or another dr referred you to see him?
My current neurosurgeon told me he is not familiar with GPN but he knows a good dr at university of Utha( I believe)
Another surgeon I saw before only treats and maybe believes in typical TN and GPN… and after he took time with me less than 1 min, he just left room just saying you should go to pain clinic…


#23

Hi Chizuru, sometimes a physiological issue cannot be identified by MRI - this doesn't mean you don't have it, just that there is no visible cause - which is usually treated predominantly medically. Some surgeons, may choose to go in and have a look around and sometimes they successfully find a cause - but surgery isn't always the solution. It sometimes takes a while to find the right mix of meds that work for you, but you'll get there.


#24

For clarification, I had a few local doctors who agreed that the major source of my neuropathic pain was in the throat, tongue, and ear. The nerve that controls pain and sensation in those areas is the glossopharyngeal nerve. My local doctors did not find a solution for me. I ultimately found the solution myself.

I used Google and searched for “Glossopharyngeal Neuralgia” in 2008. At that time there were only a few medical institutions with websites that said they had experts with GPN. One of those medical institutions was the University of Pittsburgh Medical Center (UPMC). The acting director of the The UPMC Department of Neurological Surgery in 2008 was Amin Kassam, MD. From my home in Colorado, I called Dr. Kassam’s office and talked to his medical assistant and nurse. After describing my symptoms over the phone to his nurse, she said my description sounded like it was GPN. She recommended I fly to Pittsburgh and meet with Dr. Kassam.

Then over the following week I arranged a flight and an appointment with doctor Kassam. Once I met with Dr. Kassam and described my pain, he told me I likely had GPN. He said based on his experience, I would not be able to manage my pain with medications. The effectiveness of medications for people with GPN typically wears off over time. He said I would ultimately need surgery and recommended I have a MVD of the 9th cranial nerve. He also warned me that the longer I wait to have surgery, the greater the chance I have permanent nerve damage to the glossopharyngeal nerve. This is the reason I suggest to people on this forum that there should be a sense of urgency if you think you have GPN.

Before I had my surgery, he sent me to an ENT (ear, nose, and throat) specialist at UPMC to rule out a condition called Eagle’s Syndrome. Eagle’s Syndrome can produce similar symptoms. See: https://en.wikipedia.org/wiki/Eagle_syndrome

I would recommend anyone searching for a diagnosis to read the following webpages:

http://www.neurosurgery.pitt.edu/centers-excellence/cranial-nerve-program/disorders-treated/glossopharyngeal-neuralgia

http://www.columbianeurosurgery.org/conditions/glossopharyngeal-neuralgia/

I am starting to consider writing a book based on my experience. I think there is a lack of knowledge concerning GPN and other rare disorders and how to go through the process to find a solution to your illness. If anyone out there finds my information helpful, please let me know. I feel like I have an obligation to help people based on my experience. I don’t want anyone to go through the experience I had. It is a shame in this day and age that our society does not have a better mechanism to help people with rare pain disorders.

Hope this helps!

Gipp


#25


Gipp, Just wanted to let you know that your information is very helpful. It has given me strength to not give up in getting a diagnosis. My symptoms are textbook (exactly the same as your's) and during a major flare-up my neurologist diagnosed me. I was so happy. Happy that after 4 years a doctor finally believes me. Neurologist referred me to a Charlotte, NC neurosurgeon. Yesterday the neurosurgeon said my symptoms are not from GPN. He was blowing me off and kept trying to end the appointment. I didn't give up. I kept explaining that I'm only able to eat soft foods due to the pain. Not until I told him I have lost 30 lbs. in the last 2 months did he order the MRI imaging for 7th & 9th cranial nerves. So thank you Gipp.


Gipp said:

For clarification, I had a few local doctors who agreed that the major source of my neuropathic pain was in the throat, tongue, and ear. The nerve that controls pain and sensation in those areas is the glossopharyngeal nerve. My local doctors did not find a solution for me. I ultimately found the solution myself.

I used Google and searched for “Glossopharyngeal Neuralgia” in 2008. At that time there were only a few medical institutions with websites that said they had experts with GPN. One of those medical institutions was the University of Pittsburgh Medical Center (UPMC). The acting director of the The UPMC Department of Neurological Surgery in 2008 was Amin Kassam, MD. From my home in Colorado, I called Dr. Kassam’s office and talked to his medical assistant and nurse. After describing my symptoms over the phone to his nurse, she said my description sounded like it was GPN. She recommended I fly to Pittsburgh and meet with Dr. Kassam.

Then over the following week I arranged a flight and an appointment with doctor Kassam. Once I met with Dr. Kassam and described my pain, he told me I likely had GPN. He said based on his experience, I would not be able to manage my pain with medications. The effectiveness of medications for people with GPN typically wears off over time. He said I would ultimately need surgery and recommended I have a MVD of the 9th cranial nerve. He also warned me that the longer I wait to have surgery, the greater the chance I have permanent nerve damage to the glossopharyngeal nerve. This is the reason I suggest to people on this forum that there should be a sense of urgency if you think you have GPN.

Before I had my surgery, he sent me to an ENT (ear, nose, and throat) specialist at UPMC to rule out a condition called Eagle’s Syndrome. Eagle’s Syndrome can produce similar symptoms. See: https://en.wikipedia.org/wiki/Eagle_syndrome

I would recommend anyone searching for a diagnosis to read the following webpages:

http://www.neurosurgery.pitt.edu/centers-excellence/cranial-nerve-p...

http://www.columbianeurosurgery.org/conditions/glossopharyngeal-neu...

I am starting to consider writing a book based on my experience. I think there is a lack of knowledge concerning GPN and other rare disorders and how to go through the process to find a solution to your illness. If anyone out there finds my information helpful, please let me know. I feel like I have an obligation to help people based on my experience. I don’t want anyone to go through the experience I had. It is a shame in this day and age that our society does not have a better mechanism to help people with rare pain disorders.

Hope this helps!

Gipp


#26

I appreciate your kindness. Just to let you know, if you do have GPN you probably will get a normal MRI unless there are other issues. Why? The 9th cranial nerve is very small and usually will not show-up on an MRI. From what I'm told, even the best MRI machines cannot show the 9th cranial nerve. So why do they take an MRI of the brain with a GPN diagnosis? There are many reasons. I fear saying too much and scaring you before your MRI. But if you have have dealt with GPN pain I'm guessing you are ready to face anything at this point. Sometimes a tumor, benign or malignant can be on the nerve or pressing-up against the nerve causing your symptoms. If you have had this for 4 years then its unlikely malignant. The neurosurgeon wants to rule out any secondary causes. When I had my MRI of the brain before my MVD, it was normal. If your 9th cranial nerve is being pinched by blood vessels and you don't have any other issues, the neurosurgeon must decide based on what you have told him if he thinks you have GPN. I was told by many doctors that neurosurgeons will not do a brain surgery unless they have an image showing a problem. That is incorrect. I would ask your neurosurgeon how many cases of GPN he has seen and how many MVDs of the 9th cranial nerve he has done. If he has not seen many cases, I would get a second opinion, even if he says you have GPN. I'm happy that you seem to moving along toward a solution. It took nearly 11 years before I found a neurosurgeon and said I had GPN. Let us know how your MRI turns out. If you have any questions, please let me know.

Regards,

Gipp


#27

Gipp, that is the most sensible and thoroughly helpful post I have read. I had the nerve cut 19 years ago now and still live with burning ongoing pain all the time. No resolution for me, however just hearing of others with this pain and the number of Doctors we encounter just some how makes me normal as far as a gpn can be. Thank you. WW


#28

I almost scheduled for MVD surgery… and then I got a diagnose with Lyme disease. I knew I had more weird symptom like heart pumptation, fatigue and joint pains… but no dr gave me a right diagnose for 3 years.
Now I’m in the treatment for Lyme, but my GP and TN pain are very bad.
Does anybody take lyrica? If so, how much do you take?? My Lyme dr prescribe me 75mg, and just started it yesterday, but not working…


#29

Gipp,

Thank you for this very helpful post as well as many other helpful posts you've written on this forum. I think you should write a book!


#30

I was diaganosed 9 years ago with GPN, not one doctor in Las Vegas has ever treated GPN (at least back then) it comes and goes - sometime it vanishes for 16 to 20 months then BAM, clear your throat and its back. It’s been back for 9 weeks and medication is kinda useless. It can take away the pain but then I cant remember my name (oxcarbapezine) I tried gabapentin too but it does nothing. Waiting for a non related test to come back before I make plans to go to Pittsburg.