As a type A personality it is a bit difficult to relax. That being said I do realize it is important for recovery. I will try to embrace this time to do the things I never have time to do.
It's so good to hear of another MVD success story. I'm glad you're doing so well, Rob. I hope all of our successes will help others to make the huge decision to have the surgery if it ultimately becomes the only solution to their pain. I know it was a very difficult and frightening decision for me, and I wish I'd had this forum back in 2009 when I really needed it. A big thank you to the person who created this web site!
Hi Sally and Rob,
Thank you for your post and I am new to the site. I have atypical GN. I am wondering if you did have atypical and also if prior to surgery did any of your scans show the nerve vompression or looping? A local neurolgist performed a MRI and MRA and aside from saying I had a very large vetrebral artery having issues and a test they did by pasting electrodes on my head showing trigeminal issue, nothing else was found. Neurosurgeon in Tampa said I did not have typical TN, so basically was dismissed as that was his fortey in doing surgery. My pain in worsened by talking and I also have deep ear pain and a gripping throat pain at times. I am kind of at a loss as to where I should go next.I don't know whether to go to a place like Mayo or another local neurologist who was recommended to me or pain management. Thank you for your thoughts as the no talking issue has boxed me in or I should say out of life. Kathy
Hi Kathy,
I am a Physician myself and went several specialists who said my scans were normal. I finally went to Dr. Mark McLaughlin who took the time to actually show me the looping artery. I went to Dr. sen in NYU and he did the same. The bottom line is you need to find the right doctor!
Great Advice RMC!
rmc said:
Hi Kathy,
I am a Physician myself and went several specialists who said my scans were normal. I finally went to Dr. Mark McLaughlin who took the time to actually show me the looping artery. I went to Dr. sen in NYU and he did the same. The bottom line is you need to find the right doctor!
Kathyg said:
Hi Sally and Rob,
Thank you for your post and I am new to the site. I have atypical GN. I am wondering if you did have atypical and also if prior to surgery did any of your scans show the nerve vompression or looping? A local neurolgist performed a MRI and MRA and aside from saying I had a very large vetrebral artery having issues and a test they did by pasting electrodes on my head showing trigeminal issue, nothing else was found. Neurosurgeon in Tampa said I did not have typical TN, so basically was dismissed as that was his fortey in doing surgery. My pain in worsened by talking and I also have deep ear pain and a gripping throat pain at times. I am kind of at a loss as to where I should go next.I don't know whether to go to a place like Mayo or another local neurologist who was recommended to me or pain management. Thank you for your thoughts as the no talking issue has boxed me in or I should say out of life. Kathy
Hi, Kathy,
My neurosurgeon, Dr. Haines, was able to see assymetry in my artery with a fine tuned MRI called the “fiesta sequence” where they focus on that area of the brain where those nerves originate. Until I had that test, and until an educated physician (neurosurgeon especially) interpreted it, the assymetry was missed on a regular MRI read by my local radiologist even though my neurosurgeon saw it on that first MRI as well. I really didn’t need that second one after all. Many hospitals do not have the capability to do these fine sliced MRIs. However, this assymetry was seen affecting my trigeminal as I had to have this nerve decompressed as well. My Dr. was not certain until he went in what was causing my throat pain but from my typical symptoms was almost certain it was the GN. He assured me that he could decompress all nerves in one surgery. I have heard of doctors who say they can and then find it too risky once they get in. I had 2 arteries which I recall being the posterior inferior cerebellar artery pressing on my GN and vagal (as well as a vein), and my anterior inferior cerebellar artery pressing on my trigeminal. WOW! That was a mouthfull. It makes the surgery justified to the insurance companies when something can be visualized on scans. I was fortunate to be “typical” that way. However, an experienced dr. may find your symptoms explainable. It’s well worth that 2nd or 3rd opinion. I saw 6 Drs. before I was certain that I trusted one opinion and it paid off. The others seemed somewhat confused that I would be the very rare one to have so many nerves involved and/or they couldn’t fix them all with 1 surgery. I met quite a few of the neurosurgeons personally at the 20th anniversary of the Fascial Pain/Trigeminal neuralgia conference sponsored by Mayo in Rochester, Mn. which helped immensely. This group has conferences twice a year, one on each coast usually, and I would highly suggest attending one of these. I could not have made my decision without the info I obtained there and meeting others in similar pain was inspiring. I hope this helps you in you search for answers. Stay hopeful! Sally from Wisconsin
Rob, Hope you did well with your surgery. I'm a physician also. I just started back two days ago after getting some relief from neurontin. Hope you are recovering from your surgery.
Hi Ern,
Thanks for your kind words. Things are progressing well. Still a bit week but to be expected.
Rob
It is good to know you both were very brave, are out of your nightmare, and taking time to share and guide others in kindness. Just a few more questions please. Did you both have typical and striking GN? Mine never fully goes away, but at times I will have a flare and it is hard to settle down.
My MRA showed several artery/vein issues and at the time was ordered and read by a Neurologist that retired shortly after ordering it. I had an open MRI with him as well, but, it was not a Fiesta study. I went on to a Neurosurgeon about an hour from my home, who had his understudy Neurosurgeon in training talk to me for about 30 minutes. By the way, she was taken back that I was on disability for a condition such as mine and didn't seem too interested in my case, shaking her head as she left the room. She relayed all the information to the Neurosurgeon and he then stepped in for two minutes and ordered the Fiesta study MRI, saying he only did surgery on typical TN. They were both "no shows" at the follow up appointment and after driving an hour and waiting an hour, I was told by a nurse that he did not look at films or reports and would no longer see me as I was not a typical TN case, but if he had a chance he would review them and call me, but this did not take place. I finally ordered the reports/CD and it just said normal MRI on it without Neurosurgeons review, only Radiologist. It made no mention of looking at any cranial nerves or arteries etc. My concern was that it was looked at in a general manner and not ordered to look specifically at the issue of GN or TN. I also had a BAER study that showed trigeminal issues with the retired Neurologist. Thank you for your time, empathy, and thoughts. Kathy
Kathy,
What is typical! Most Physicians have no clue what to look for with GPN…including me. I went to some highly touted Neurologists, Neurosurgeons and Neuroradiologusts who told me that my scans were totally normal. You know your body and know what is normal or not.
My symptoms were intense ice pick type pains to my left ear, throat and head. The symptoms were going on for nine months and were 24/7. The intense pains came every 30-60 seconds. Couldn’t sleep. I am a really happy go lucky guy, that was finding quiet places to cry! Didn’t want my kids, wife or staff to know my pain.
When I met Dr. Mark McLaughlin and he understood me and took the time to explain things to me, I knew I would come through this. He made all I was going through REAL…I wasn’t going crazy! I knew he would heal me and he has.
If I can help ou in any way I promise I will. You can be healed. Is it easy, absolutely not!
Dr. Marc was a very accomplished collegiate wrestler…I am a wrestling coach, and one thing we always preach is "make it happen, don’t let it happen!
Take control of your situation and live life to it’s fullest.
Rob
Dear Rob,
Wow, just when I think I've come to so many "road closed" signs, this painful mouth smiles with the notion that I may indeed find a detour or even a better road. Thank you for the encouragement to fight on and the offer to help me. What blessed patients you must have with your compassion, which I am sure now is a wide as the ocean. I am praying for swift wisdom in regard to setting up an appointment with Dr. Marc and have his expert opinion on the MRI/MRA studies I've had done. May I ask how long it took to secure an appointment? My 19 year old daughter has offered to go anywhere with me as my advocate before her fall college session starts in late August. Finances are a bit tight, but as my daughter said today, "I long to see you well and out of this horrible pain, Mom. I want to shop with you and go out to lunch. Mom, whatever it takes, I need you well."
Well, I could say more. I will close with a big thank you, Rob. I sense I may find a way and have a life that is more than just barely hanging on for the day. I'd like to stay in touch and accept your future offer of help to make it happen! God bless you, Kathy
It took me about two weeks to get am appointment. Let me k ow if you would like me to contact Dr. Marc on your behalf.
Rob
Jbimadingdong,
Did you go to mayo jacksonville or Minnesota. How did your surgery go?
JBimadingdong@aol.com said:
Hi…Yeah, I have passed out from the pain and it gets really bad. Go to the Mayo. Dr. Carrie Robertson knows exactly what is it. Will be having Dr. Pollock do MVD on the 24. I need a life and so does my hubby. He is such a blessing but I am such a worry to him. Let me know if you see these Drs. They are tops. God bless. JB
Hi RMC....thanks for your encouragement and courage. I've had MVD for both TGN and GPN in LA and the pain is now worse 9 months later. Not sure what to do. I am a recent new member on this support group site, looking for hope. Your surgery was very recent, are you pain free?
My surgery was 4 weeks ago. I am healthy strong and pain free. I am so sorry to hear you are still in pain. How can I help you.
rmc said:
My surgery was 4 weeks ago. I am healthy strong and pain free. I am so sorry to hear you are still in pain. How can I help you.Thanks, RMC, my questions are related to medication. What were you taking for GPN prior to surgery? Post-surgery? Are you taking anything now, 4 weeks out? I am wondering since they never reduced my meds (oxcarbazepine) post-surgery and then months later added topiramate and increased dosages for both, pain worsening all the time, could it be the meds causing my pain? I really don't know but I guess I need to start asking the questions.Thanks for your willingness to share. Your experience with the the MVD surgery, as you can see, is of great interest to all of us, for those considering it, and those like me who have already had it but still dealing with pain from GPN.MSov
I tried one of the anti seizure meds…Trileptal, Neurontin…didn’t help at ll and felt like a zombie! Took large amounts of Extra Strength Tylenol to take he edge off. This was not a long term answer.
Once my procedure I have taken only few Motrin as needed. No prescription meds needed post operativly.
Thanks again for your time....I have let my neurologist know that I would like to start reducing my meds...waiting for a reply although I think I know the answer. I guess my situation was that I was never pain free post-surgery is why they continued the meds. Not sure what to do at this point. You seem to be really headed in the right direction. Thanks again.
MSov (mike)
Mike,
Don’t give up. You need to keep searching for answers.
Rob