Scared to have surgery

I saw my brain surgeon today and he is ready to do surgery. My attacks last for 17 1/2 hours ( the longest) without relief. It feels as if I have the worst Charlie horse ever in my throat. Does anyone have similar symptoms? They don’t see anything on my MRI. Is that the same for others who have had surgery? I am VERY SCARED. Any input would be helpful. I live in Houston, Texas and my surgeon is with Memorial Herman.

Hi, Chrisie
I had my MVD of CNs 5,9 &10 over two years ago by Dr. Stephen Haines at Fairview in Mpls, Mn. He has been doing this procedure for many years and trained under Dr. Janetta. He spelled out his statistics which were excellent. I had a neurosurgeon from a very reputable system tell me that I would probably need 2 surgeries to address the different locations! I am happy to say the surgery was a complete success and he didnt even shave my head!
I had suffered with dagger pain in my throat as well as TN pain for 13 months before surgery. It came on like a tornado and though controlled with increasing doses of a combo of tegretal and trileptal my sodium levels were dropping too fast. I opted for surgery ASAP because the pain was unbearable, I was barely able to talk or swallow nor did I want any potential long term damage. It did take over a year for the occassional tingling to stop completely.
Dr. Haines and Dr. Nixdorf saw assymmetry of the vessels around the TN on the Fiesta sequence of the MRI which my local radiologist missed and which justified surgery for insurance coverage but the GN and vagal vessels were not evident until he went in. I think you will feel confident when you find the right doctor. I consulted with 3.
My heart goes out to you and all who suffer. I am so grateful to say my life can now go on thanks to the marvels of modern medicine. In the old days, there is no doubt I would have been a statistic. Stay positive! There is hope and a cure!

Hi Sally,
Like you I am on a combo mix of drugs. I too have had the problems with my sodium levels falling. You mentioned permanent damage, does that occur? If so, have you been to what causes it?

What does MVD stand for? My neurosurgeon says it is impossible to see where my glossopharyngeal nerve is "trapped" with MRI, CT or anything. I have had pain all the time for 17 months and want a cure not just keep trying to mask the pain.

I had symptoms like yours but my attacks lasted from 5 to 10 minutes. The short pains I had were jabs or stabs lasting only a fraction of a second, which triggered the long ones. Once the nerve is depleted I had a few minutes of relief where I could eat but it “recharged” and the pains started up again. I had MVD and yes its scary and the recovery can be rough but I’d do it again because my pain stopped immediately and it’s still gone. My neurosurgeon saw the offending vessel on my old MRI but his office said they usually don’t and go by the symptoms. Bless you and good luck with your surgery.

Hi ice pick
MVD stands for micro vascular decompression. I was also told they see more by going in. What surgery did you have?

I think collectively we have all had similar symptoms. For me, I was scared not to have the surgery. I have no regrets as I can now live my life. Good luck to you!

I have an appointment to consult with a neurosurgeon at the Mayo Clinic in Rochester, Mn 10/01. I am going to have the surgery. We have tried every med and combination of meds and they can take the edge off but my pain is getting worse as time goes by. I simply can't live like this any longer. I am afraid because it is surgery and there are risks...but I, too, am more afraid of not having the surgery.

Dear Chrisie,

First of all calm down and do not be panic. We all have gone through same experience "SCARED", Oh! what's happening suddenly? Am I going to be sick for ever? Everyday I was in different hospital to get diagnosed what is wrong with my throat. All the possible ENT's in surrounding hospital. I live in Dubai (U.A.E.). I travelled 3-4 times in last year to Mumbai (India) as I believe the Dr. are more experienced and professional there. Went to some of the referred Drs. who are well known for their expertie, but NOTHING, no one was able to diagnose what is wrong. All the MRIs' and other test showed nothing. I sent my reports to take the experts opinion along with my brain, mouth cavity, throat MRI's and other tests report. They couldn't find anything.

I'm 52 years now. I was worried like HELL! restless! and extremely sad. Though my family was concerned but when all Drs. were not able to diagnose, they just kept on comforting me to calm down. My family was very supportive and never said no for visiting a new Dr. or hospital until I was satisfied. I continued on my medicine for GNP - Neurontin 400mg - 3-4 times a day almost for 4 months. Also after all the above running around in hospitals/Drs. I decided enough! and I will not talk about this pain and will not go to any hospital anymore. Continued taking medicine and today I'm far better. I regularly go to gym, go for long walks in the evening that really helps me to get good sleep. I work 6 days a week that too keeps me busy and believe me from last 1 month I'm without medication. I'm not 100% cured but I do go for check ups but do not worry too much. Initially when this pain started in July 2012 it was HORRIBLE for 3-4 months and I felt as if I will never be fine. My father was diagnosed with throat cancer in January 2012 and died in Oct. 2012, and that also physiologically made me believe that I too have throat cancer and I'm going to die soon.

I would say just calm down. Do not panic. Draw your action plan - step by step and take 2nd 3rd opinion from Drs. as what is the right thing to do? Take right medicine and give it time, you never know it may go soon. Spend more time with your family or loved ones who cares for you and listens to you. Go for long walks and do not forget PRAYERS. It is just a small rough patch of life, you will be cured and pain will disappear. God blessed us with many years of happiness, Joy and fun and sometimes he want to try us. Don't forget to thank God for everything you are blessed with.

My prayers for you to come out of it ASAP. Take care!


Hi Chrisis, I am so sorry you are having that pain. I have it bilaterally from MS, and I know the pain but have not had it for that long. I imagine you hve been through neurologists and tried every medicine known to God? I am familiar with the TN surgery but not the GN surgery, maybe someone else can help here? I take St. Blaze with me, he is the Saint of throats, and somehow that gives me comfort. Chrisie, I do not know you but you are on my prayer list now. Let us know how you are doing and your decision.


Hi ice pick

MVD stands for Micro Vasculare Decompression.

It means that the surgeon isolate the vessels WHO is causing the painattacks.

I have had the MVD 6 weeks ago and my pains was gone after the surgery.

Now i have problems with swallowing food without drinking water after every bite, and my voice are very weak. All because the nerve to my left voicelip is paralyzed.

I´m going to multible therapists who is working on the problems.

But most importent: MY GPN-PAINATTACKS ARE GONE.... !!! :-D

Good luck to you from Brian (Denmark)

ice pick said:

What does MVD stand for? My neurosurgeon says it is impossible to see where my glossopharyngeal nerve is "trapped" with MRI, CT or anything. I have had pain all the time for 17 months and want a cure not just keep trying to mask the pain.

MVD means moving the blood vessels away from the nerves, relieving pressure which is causing nerve damage which is what causes the pain. One of the factors I considered was the possibility of permanent nerve damage which no medicine could help in the long run. Even surgery might not help if the nerves are too badly damaged by pressure over time. So I went with MVD and I’m glad I did.

Christie, I had diskectomy and fusion of C6-C7. My ENT said the glossopharyngeal was stretched too far during surgery which triggered the nerve and it would correct by itself in 9-12 months. But now says it must be trapped in scar tissue and may never stop being stimulated, or I could wake up tomorrow and have it gone. Always hurts everywhere it has branches or communicates on the right side (ear, throat, parotid gland, upper and mid trapizius). It is triggered more by moving arm, bending neck forward, and most by any lifting (even a gallon of milk). So could be trapped anywhere in my neck or in my brain. Triggers that increase pain make me think scar tissue in neck is pulled with movement. Hope your surgery is a huge success. Many prayers are out there for you.

Omg you poor thing! My symptoms never felt like a Charlie horse, in fact that's the first description I've heard. I had SHARP JAPPING ELECTRIC SHOCK pain when I spoke, drank, yawned, laughed, smiled or ate. It was the worst pain of my life and I opted to have the MVD surgery4 years ago and then again last year. I am pain free and medication free.

I pray for all who have to deal with this bizarre illness and hope you get relief from the surgery. The recovery is a piece of cake compared to all the pain I had to endure. Good luck! Check out TNA WEBSITE. it is another amazing support network that saved my life.

Take Care,


Dear Chrisie:

Had the surgery 3 years ago. I was about where you are with regard to pain and was seriously considering how I could end it all with the least guilt and trouble for my loved ones. The surgery brought some immediate relief but was followed by a bunch of minor symptoms that seemed like TN - but they faded away in a month or two and I haven't had any since. I suspect there's some trauma to the other nerves in stretching them apart so the surgeon can get at the G9 - and that's what causes the minor post-operative sensations. At first I still had to take a little Tegretol, but soon went to Baclofen, and then nothing at all. So far, complete success.

Chrisie, no brain operation is to be taken lightly, it's a last result, and different patients and surgeons have different results. But I was one of the 80% who seem to get complete relief and the odds are you will be too. If your attacks are lasting for 17 hours I really don't see what choice you have. The very best of luck and if you need to talk to someone who's had it just call me at ■■■■■■■■-2022.