Mri and ct show "normal

I went to Mayo clinic in Rochester, MN recently and was advised the MRI and CT showed no compression of the cranial nerves. The neurologist and neurosurgeon, Dr Atkinson, do not believe it is GPN although my neurologist diagnosed GPN in April this year. I have been through all of the meds and combo of meds to treat GPN and while some of them relieved the pain to a tolerable level the side effects made a normal life impossible. I was hoping to schedule MVD surgery while I was at the Mayo. The neurosurgeon at Mayo said he would go in and sever the 9th cranial nerve if this is what i believed should be done but warned me i have a 20% chance of losing my voice permanently. Have others had an experience of not locating an artery/vein irritating the cranial nerve?

Based on my pain and triggers both my neurologist and I believe I have GPN. I have requested to be referred to Dr. Haines at Fairview in Minnesota but my dr. referred me to Aleganny(sp?) in Pennsylvania. I live in Eastern Iowa and do not wish to travel that far but I need a dr willing to go in "blind" looking for whatever is irritating the nerve and hopefully have the Jenneta procedure done (MVD).

My neurosurgeon’s office told me the frequently do not see MRI evidence of vascular compression. Mine was so bad it showed up, and in reality was worse than expected, since he found two vessels compressing my gpn.

Can you not find a pain clinic willing to prescribe pain meds ( opiates ) and injections of Bupivicaine every two months ? That would seem preferable to iffy surgery . I know a woman who had MRI proof of compression , had the surgery by Dr. Fukushima ( associated with Duke and who is touted to be the very best ) and she has had a return of pain within a year . My neurologist has advised me to avoid surgery unless there is no other recourse ...and as far as one M. D. saying you have it and one not agreeing . I would encourage you to at least be glad you had someone who recognized it as GPN and was willing to label it as such for insurance purposes . ( Looking for a silver lining here ) ; what if no one had supported you with a GPN diagnosis? Very bright doctors often disagree about rare matters . It does not make your pain any less true. I have met a lady who had a forme fruste of Cystic Fibrosis . She went to the Mayo Clinic and was told her symptoms were psychological . Her local Family Doc finally did a sweat test and found the cause of her years and years of undiagnosed respiratory symptoms was an attenuated form of CF ! Sooo--the Mayo Clinic is not perfect .

Like you many of us have been through this pain and it seemingly take forever to get a diagnosis of GPN and get the medication you need. As my neurologist told me, my MRI showed no compression but since I was not having an “attack” at the moment the MRI was done, it may not show up. In my case the Tegretol works most of the time and my neurologist has increased the dosage. I would prefer to not have the surgery as long as the medication is working but if it gets to the point where my attacks get more frequent and longer lasting then I will think about it. It took me a year of pain to find a doctor who recognized the symptoms as GPN and go me to a neurologist who confirmed the diagnosis and got me on the appropriate meds. If your doc wants you to go to PA then I would think about it. He could be the answer to your prayers. Good luck and keep us posted.

You can try Dr. Raymond Sekula at the University of Pittsburgh Medical Center, he studied under and along with Dr. Peter Janneta. I saw him and although he thought it would be too dangerous to do MVD on me I respected his opinion completely. He has a special cut of MRI that he likes to do using the Fiesta 3d and prefers to have it done there, but may be willing to review your scans for you. It was a trip and time well spent in my opinion. Let me know if you want the "backdoor" contact information. Wishing you nothing but relief!

Hi Tina,

It is quite possible that you could have other reasons for GPN. I have multiple scleroris (MS) and have GPN associated with that. I have had MRI's and CT's to rule out Eagles and compressions etc., and it is definitely my MS. So if your problem is associated with inflammation of the 9th cranial nerve, surgery will not be the answer.

With your MRI, was it just looking at the brain stem? Or was it a whole brain MRI? As if it wasn't the whole brain, I'd be inclined to talk to your neurologist and ask for a full brain MRI scan to look for any signs of MS. You possibly may have been suffering from some MS symptoms too and not be aware they are related to MS.

MS can present symptoms well before a lesion appears. Also lesions on the brainstem can be so small they can easily be missed. Also it can be inflammation and no lesion, but if MS was suspected there will more than likely be other signs. Also too it depends on the strength of the MRI you had done as to how much it reveals. 3T machines are better than 1.5T. There's even higher strength machines now. What strength was your machine, do you know?

So before heading into surgery I would definitely suggest you be looking into MS and other autoimmune disease screenings first, as other autoimmune diseases can be assoicated with this as well.


I am so sorry to hear about your experience. My symptoms weren't classic and over 18 months I had three different MRIs. It was only the third MRI that they saw something that was "possibly" a compressed nerve.

I was lucky to meet a great neurosurgeon in Denver, who agreed to do my MVD surgery in March of this year. Since my symptoms were not classic he did advise that the success rate might not be there - but I was at the end of my rope after 2 years of debilitating pain. He did a final MRI which showed possible compression and that just gave me more confidence, but I was going to do the surgery regardless and my neurosurgeon supported that. He ended up decompressing 5,7, and 9 for me and my recovery was without issue and got rid of almost all of my pain. All my nerve and facial shooting pain is gone - I still get headaches that were associated with this (not a normal symptom) but they are manageable.

Personally, I would never have let anyone cut the nerve - unless I had already gone the path to attempt decompression. Keep looking for an MVD surgeon who will work with you on what *you* need - not strictly on the MRI.

Best Wishes -