Hi. I just saw neurosurgeon today.
I’ve suffering for almost 3 years of pain and weirded symptoms… been throug many many doctors including Tmj specialists, nuero, facial pain specialists, ENTs, Chiro… With no relief.
Now I suspects I have some spine issues or GPN/VN.
I brought my recent spine MRI to surgeon, and he said he doesn’t find any abnormality.
Now he orderd BRain MRI ( I took it 2 years ago, negative) with FIESTA(??). At this point, I just hope to get a tight diagnose…
How did everybody get diagnosed with GPN/VN??
Hi. I just saw neurosurgeon today.
This may be redundant, I typed a reply and not sure if it was sent or deleted. Regardless, I had a similar problem several years ago, and as an Otolaryngologist I diagnosed my own disorder after several years of intermittent varied symptoms. Neg. physical exam, neg. CT scan for Eagles or tumor, then ordered "Fiesta" MRI which was positive for vascular involvement. Endoscopic decompression in Orlando Florida by Dr. Melvin Field, awoke without pain and have remained without pain since, approx. 2 1/2 years ago. Good luck. MRR
Thank you for replying in such a short time. Do you live in Fl?? I live in orlando area. I’m planning to make an appo with Dr. Melvin but I needyo have MRI first to get scheduled.
Thankou again for the info!!
Good Luck. Please give Melvin my regards and tell him " Go Gators" Mikell
Diagnosed by ENT doctor by symptoms alone. CT and MRI reported negative.
I was diagnosed by a Neurologist. He did an MRI, MRA, and a CT scan from the neck up, with and without dye. The reading Radiologist noticed a blood vessel impinging on the number 9 cranial nerve.. Sadly, it is not always so clear for some sufferers. Good luck!
Thank you for replying.
I’m still waiting for radiology to call me to schedule for MRI with Fiesta.
Besides symptoms of GPN and VN( I have heart pumptation and faintness)
I also have lots of neck(or skull) cracking sound. I was told that I have barre Lieou syndrome by prolotherapist… It’s neck instability… But then neurosurgeon said that MRI and ct doesn’t show any instability…
I wonder any GPN sufferers have neck problems also…
If you have the money, I would advise flying to one of the top medical centers in the country. Why? As you can probably tell by now, most local doctors do not have experience with GPN and its symptoms. Their only experience is likely reading about it in a text book in medical school. It is that rare. I believe you are in Florida based on your profile. Unfortunately I don’t think you will find a top medical center located there but maybe some of the other members of this site may have a good suggestion of a doctor located in Florida. Many of the top medical centers are located near the northern east coast. However, there are a number of excellent doctors and medical centers throughout the U.S. that can diagnose and treat GPN.
If you have GPN, you would likely need to get a microvascular decompression (MVD) of the 9th cranial nerve (glossopharyngeal nerve) at a top medical center. So I would find a place and make the flight. GPN is so rare that even some of the top medical centers do not have experienced doctors with GPN and have experienced doctors that would perform a MVD of the glossopharyngeal (GP) nerve. When I did my initial research in 2008, I ended-up going to the University of Pittsburgh Medical Center (UPMC). Unfortunately my neurosurgeon, who was also the head of neurosurgery at UPMC at that time, it no longer there.
A couple of things to consider. Based on the academic research, the longer you wait to have a MVD, the less likely you are to have complete relief after surgery. The longer you wait, the more likely you will have residual and permanent neuropathic pain after the MVD. Why? If you have GPN, then you likely have blood vessels pinching the nerve. There are other causes of GPN but this is one of the likely causes. The longer the nerve is pinched or compressed, the greater the chance this nerve compression creates permanent nerve damage. Permanent nerve damage can also be caused by how severely your nerve is pinched. Also, a MRI may or may not show the GP nerve being pinched. This nerve is so small it is unlikely to show-up on even the best MRI’s. The neurosurgeon will need a current MRI however, to rule out other possible causes of your neuropathic pain.
There are other qualified medical centers other than UPMC in Pittsburgh. I would start from the list of top medical centers in neurology and neurosurgery provided by the “U.S. News & World Report” shown here: http://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery
Whoever you talk with, ask them how many cases of GPN they have seen and how many MVD’s of the 9th cranial nerve they have performed. You will not likely find someone who has performed say 300 surgeries. But you don’t want to have someone perform a MVD on you that has done say 30 surgeries or less. Also, you may run into doctors and neurosurgeon’s that will tell you the treatment for GPN is like other neuralgias. That is simply untrue. GPN and its treatment are very unique. So you want a neurosurgeon with the most experience you can find. Even if that means waiting a few more weeks or months to see them or taking a flight to a medical center out of Florida. If you are considering having an MVD performed, remember you likely only have one chance to perform this surgery. I’ve been told that having a second MVD, on the same side of the head, greatly increases the risks of the surgery. Those risks include loss of hearing, and other issues, including increased pain. Just something to think about as you go through this process.
My neurosurgeon, is named Amin Kassam. He now is the head of neurosurgery at Aurora St. Luke's Medical Center in Milwaukee. From my research of him in 2008, he has performed 100’s of MVDs of the 9th cranial nerve. He is world renowned and famous for his innovations in brain surgery. When I saw him in 2008, I was told by his nurses that he had a particular interest in GPN. Because of this, he has published a number of academic papers on this condition and knows a lot more about it through experience than most other neurosurgeons. At that time, I believe he had performed the most MVDs of the 9th cranial nerve in the world.
If you are interested in Dr. Kassam, here is a link to Aurora St. Luke's Medical Center: https://www.aurorahealthcare.org/
After going to this webpage, click on “find a doctor” under “hello, I’m here to”. Then under “Search by Doctor’s Last Name” type in “Kassam” and click on the “Find” button. He should be the only doctor listed. Sorry, but I could not find a direct link to his webpage.
His contact information:
Aurora Neuroscience Innovation Institute
2801 W Kinnickinnic River Pkwy
Milwaukee, WI 53215
Provider Phone: 414-■■■■■■■■
Best of Luck!
Dr. Kassam certainly is well trained and experienced in this surgical problem. Undoubtedly a fine choice. The surgeon that I mentioned, that did my MVD, endoscopically, Dr. Melvin Field, trained at Pittsburg with the surgeon who performed Gipp's surgery. I was scheduled to have my surgery done in Pittsburg by that same surgeon but the pain became intractable and required hospitalization and immediate surgery. I was extremely fortunate to have connected with Dr. Field. https://www.floridahospital.com/doctor/melvin-field-md-1962451823 . I believe that you mentioned that you were in Florida. MRR
yes I live in orlando area. I knew Dr melvin’s name but I couldn’t make an appointment with him without recent MRI… That’s why I went to see another Surgeon. Now After I take MRI fiesta, I’ll go see Dr. Melvin for sure.
But I’ll keep Dr. Kassam in mind. Thank you for his info, Gipp.
I don’t even know if I have GPN, so I’m still trying to go see other doctors for Lyme desease, facial pain, and barre lieou… Many of them are out of states, but I have no choice…
Does GPN affect only one side?? My pain is mostly left, but I have tightness and nerve pain in right side also…
Hi, I am sorry for your pain and the run around. I know what GPN is, what is VN?
Chizuru kikuchi said:
yes I live in orlando area. I knew Dr melvin's name but I couldn't make an appointment with him without recent MRI.. That's why I went to see another Surgeon. Now After I take MRI fiesta, I'll go see Dr. Melvin for sure.
But I'll keep Dr. Kassam in mind. Thank you for his info, Gipp.
I don't even know if I have GPN, so I'm still trying to go see other doctors for Lyme desease, facial pain, and barre lieou... Many of them are out of states, but I have no choice...
Does GPN affect only one side?? My pain is mostly left, but I have tightness and nerve pain in right side also..
GPN is typically one-sided. Why? Because each person has two glossopharyngeal nerves. One on the right and left side of the head. Usually one of those nerves becomes damaged. You can still have GPN even if you have pain on both sides of your head/throat/tongue/ear but this is extremely rare. The reason why is very complicated and not very well understood by doctors.
The Mayfield Clinic in Cincinnati, Ohio, seems to have a good description of GPN. See: http://www.mayfieldclinic.com/PE-Glossopharyngeal.HTM
GPN is classified into two categories; typical and atypical. The typical form is easier to diagnose and treat. It involves only one side of the throat, back of the tongue, and possibly the ear. The pain is not constant. Patients get electric shock like pain on one side of the back of the throat, back of the tongue, and sometimes the ear that last a few seconds, to several minutes that are excruciating. The actions that trigger this pain are usually swallowing, chewing, talking, coughing, yawning, and laughing.
The atypical form is much harder to diagnose, treat, and even describe. This is the form I have. Since it is atypical, it may not involve the same characteristics as the typical form. In the atypical form, it’s usually one-sided but not always. You would still have burning and/or electric like pain in the throat, back of the tongue, and possibly the ear. You may have numbness on one side of the throat, back of the tongue, and/or ear. You may or may not have episodic pain that is excruciating. Even though I had the atypical form, I still had excruciating pain episodes. The pain can spread to other nerve groups, especially in the head and face. If the pain spreads, it can be very difficult for the patient to isolate where the pain originates when a doctor asks you this question. This can confuse the doctor and lead to an incorrect diagnosis. The spread of pain usually occurs on one side of the head and face but sometimes it spreads throughout both sides of the head and face. Like I said originally, having pain on both sides of the head and face is extremely rare with GPN. Experienced doctors that are neurologists and neurosurgeons are much better at diagnosing the atypical form than non-experienced doctors in my opinion.
The key to the atypical forms of GPN is the throat, back of the tongue, and possibly the ear. If the pain first started in these areas then spread to the rest of your face and head, then you likely have atypical GPN. Many doctors will classify you with atypical facial pain in this instance. But the experienced doctors should be able to properly diagnose atypical GPN.
In either case, find the most experienced doctor you can. Especially if you think you have the atypical form. I made the mistake of seeing local doctors’ too long diagnosing me with TMJ, atypical facial pain, etc... By the time I went to a top medical center with doctors that specialize in GPN, I had permanent nerve damage.
It is also an unwelcome part of MS, and with that is frequently bilateral. No surgical treatment, just medical. It can also be in your jaw, mine is with just pressure there.
When I got MRI brain and neck 2 years ago to rule out MS, it was negative.
Can I ask how you got diagnosed with MS?
Gipp, thank you for your comment.
You are right about pain… I have hard time describing my pain and discomfort.
I also spent long time to correct tmj with many appliances…
And they told me I need to correct my posture, therapyc, relaxations…etc. and I knew they won’t help me…
I’m still waiting for MRI. I’ll keep posted. Thank you
Dx for MS by MRI and a boat load of symptoms. Happy you do not have it! :)
Chizuru kikuchi said:
Gipp, thank you for your comment.
You are right about pain.. I have hard time describing my pain and discomfort.
I also spent long time to correct tmj with many appliances..
And they told me I need to correct my posture, therapyc, relaxations...etc. and I knew they won't help me..
I'm still waiting for MRI. I'll keep posted. Thank you
I have learned that many doctors will suggest you see one local specialist after another without taking the time to analyze your symptoms properly. They will not consider you have a rare condition that requires help from the best doctors. Many of these same doctors will not say "I don't know". As a patient, you need to able to ask your doctor tough questions. Questions like "when you went through medical school and your residency, did you ever see symptoms like mine?" This will put them on the spot. If they say "no" you probably should see another doctor. They should not be offended by this type of question. If you ask each doctor this question, and they continue to tell you “no”, then you likely have a rare condition that requires help from a top medical institution.
Great comment and suggestion Gipp. My Dr. has not treated this and said so. We live rurally and I have had this for 20 years. I am going to ask again if anyone gets cardiac arrhythmias with this, and add again, it is frequently bilateral with MS.
They treat it with antiarrhythmic medications just like any other arrhythmia I think.
Thank you. Another weirded symptom is that my bite has changed and my neck or skull make a lots of sound, too. That is why I’ve been treated for a TMJ for almost 2 years…
Do you think it can relate??