I’ve been suffering with GPN for the past 10 years and after many consultations by various Neurosurgeons, all advise that as they cannot see anything in my MRI, I am not a candidate for MVD. Are there any other diagnostic techniques that I should be exploring? I’m determined to find a way to eradicate my GPN. Please help. Thanks!
An MRI is not a definite test for determining whether or not a decompression should be performed. Clinical judgement by an experienced neurosurgeon is key.
now you have me worried. just had the mri in france and thought that as the couldnt find anything we had to look elsewhere. hope my neurologist knows what he is doing
He might not. Physicians trat patients and not just diagnostic tests. An MRI will only help to make and or confirm. Many times the surgeon will see something intro pertinent that was not able to be visualized in a MRI.
I have the same concern. I go back to see my neurologist in a week. My MRI doesn't show anything definitive either, but my doctor has suggested that he believes it is GN. I had read that there is one type that shows on MRI, where the vessel actually loops the nerve and another style where the vessel presses on the nerve and that often doesn't show on an MRI.
My question is if a neurologist suggests GN, do I then go find a neurosurgeon? I can't possibly stay on this much medication for the rest of my life.
-Jessica
Have had MVD surgery on the 24th of May. My sight is blurry, tremor in right hand but no more episodes! surgery isn't that bad. Had it done at the Mayo in MN. JB
My MRI was read by the radiologist as normal but my neurosurgeon was able to see a vessel pressing on my trigeminal nerve. I also had a patient in my clinic who suffered for years with terrible trigeminal pain and multiple mri's were normal. When the neurosurgeon went in he decompressed 3 areas of vessels that were compressing her trigeminal nerve. She came in to see us last month a different person and virtually med-free. MRI's are not the tell all diagnostic tool... your symptoms should be.
To those still suffering. Do your homework and ind a surgeon who is truly experienced in dealing with GPN. I am so lucky that I did!
Thanks everyone for the discussion. RMC, who is your surgeon … If it means traveling to another country, I’m prepared to go.
Dr. Marc McLaughlin at Princeton Brain and Spine. Tell him Rob C sent you.
terrific post.
can't believe it's already been read by 60 people. wow.
PLEASE READ MY PAGE ON GPN. LIKE YOU I SUFFERED FOR 11 YEARS BEFORE ANYONE EVER
TOLD ME WHAT I HAD.
CHUCK GRANT
Not sure if the MRI does much other than to rule our Multiple Sclerosis. TN is often a side effect of MS. If you've had pain for 10 years and symptoms are classic for TN, and have ruled out dental, etc., than you should be able to get the surgery. I had it for 10 years as well and my doctor recommended the surgery after ruling out MS and understanding my pain level. Of course I also exhausted the oral medication - worked at first, then stopped.
All pain ceased after MVD....It is a cure!
My story is that I was not going to be considered for MVD in spite of the long-standing diagnosis. The neurosurgeon told me the risk outweigh the reward, i.e. relatively low success rate with MVD on GPN. After the MRI, they identified that I had TGN also, as well as a "looping" GP nerve/artery. The MVD was then done....but unfortunately, as I've pointed out in other discussions, I was one of the unsuccessful ones. Nine months after the surgery, my pain is as bad as ever. I control with meds but most days and especially nights are still pain filled and miserable. Looking for other procedures. I send this message not to thwart the hope everyone has in MVD, but just to be prepared for an alternate outcome most everyone describes on this website. Not sure what the likely success rates are being offered by the surgeons at the Mayo and Princeton prior to surgery.
I too have a "normal" ct and mri, but having MVD/Resectioning with Dr. Michael Brisman very soon. He said this does not always show up on scans. He also said if he does not see compression he will do the resection of 9th and upper 10th anyway. He said that this is diagnosed by patients histories more than scans.
Dr. John Tew, Cincinnati, Oh. ordered an MRI with and without contrast. He didn't see a blood vessel pressing on a nerve and concluded I was not a candidate for surgery. I feel like I am doomed to live with GPN the rest of my life. I can barely swallow and live with constant pain which varies in intensity on any given day. Also, any cool air that brushes my cheek sets my pain off. Therefore, I avoid going out because the stores are all air conditioned. Even at home I wear ear muffs, as just plain air (non circulating) hurts my ear. Has anyone had this experience. Thanks
You are seeing the wrong Neurosurgeon. Go see Dr. McLaughlin at Princeton Brain and Spine. He treats people not scans!
Rob
I understand your frustration, as I was told the same thing in May. The surgeon told me that my MRI showed no compressed or twisted blood vessels on a nerve. He suggested a diet high in organic fruits and vegetables. Walking was also recommended. I hate to go for exploratory surgery. So I think we need to keep searching.
Dear Dr. Rob,
Do you know if Dr. McLaughlin would look at my scans before an appointment?
Can you tell me more about how your consultation with Dr.McLaughlin? Amount of days spent at Princeton? Where you stayed there and airport used? Additional testing done? What was discussed at consultation and how determination was made to proceed with MVD?
Was it only during the surgery that he saw the nerve issues?
You can pm me at ■■■■■■■■■■■■■■■■.
Deeply grateful, Kathy
I know exactly how you feel. I have been through so much to get help. Nothing so far. My neurologist has even told me that MVD surgery is just not something to jump to because of the cost and more importantly, they wouldn't know where to operate without seeing anything on the MRI. I have had this terrible pain for 2 years now and it scares the hell out of me when I read a story such as yours with a 10 year mark. UGH!!!I just keep praying that I will get to the right surgeon sooner or later for some permanent relief. God help us...