I was told last year after a regular sort of MRI (without contrast) that my MRI didn't show any involvement of veins etc touching my trigeminal nerve. Is it possible to have nothing on an MRI but then in reality in an MVD or other surgical interventions has found the cause of the TN?
It feels a bit hopeless when I get breakthrough pain that should be under control by medication and that I have a negative MRI so neurosurgery may be a waste of time.
In my case, I’ve had bilateral TN since 2002, over the years I’ve had many MRIs and NONE showed any signs of compression. This past April I had to have an MVD for my left side TN2 as it became resistant to meds and was progressively getting worse.
During my 3 hour op,3 compressions were found. 2 big arteries and a vein.
With some specialized MRIs, compressions can be seen by an experienced neurosurgeon, but it is not a guarantee.
I have read of some who had an MVD and no compressions were found.
There are many suspected causes for TN, and some like MS, tumour or damage from an injury that are certain causes. But for others there is no known cause…doesn’t mean you don’t have TN, just means more research is needed in the medical field so that treatments can be found.
Having a negative/ normal MRI is a good thing. It eliminates ms, tumours or other abnormalities as a cause.
My neurosurgeon explained to me that even the tiniest blood vessel compressing the nerve can cause excruciating pain. The area where most compressions are found is very difficult to see the compressions, even during surgery…but an experienced NS will look as closely as possible during MVD to find all.
Any treatment for TN is a gamble or as I like to think a leap of faith and a whole lot of HOPE.
Not enough is known about TN …yet to ensure a complete cure. There are no guarantees.
But individually we must research and weigh our options, find qualified experienced doctors, neurologists, neurosurgeons or pain specialists to help guide us with our care and help us find quality of life.
Always have hope, I know how hard that is, but we must make every effort to believe it can get better.
Huge ((( hugs ))), Mimi
I had 2 MRIs in the past 2 years and no compressions were found by Mayo Clinic, my clinic here in ND or by my neurosurgeon. During my MVD they found a large vein compressing my trigeminal nerve as well as a lot of scar tissue rubbing on 4 of my cranial nerves including the Trigeminal, Vagus, Glossopharyngeal and Vestibulocochlear.
My neurogsurgeon even had a couple of students in the OR and during the operation he showed them how the vein was compressing the trigeminal nerve but couldn't be seen on the MRI.
I have heard of this happening frequently but like Mimi said, I've also heard of a few that had no compressions or known cause during their MVD so nothing is guaranteed with TN.
Nothing showed on my MRI. When they went in for MVD they found 3 compressions and 3 tumors. One tumor was on my brain stem. Luckily my surgeon had a hunch and found it. I woke from MVD numb on the right side but pain free.
I don 't know if this where I should put this. I have read many times of mri's not showing the blood vessels etc. but why when it did show two different places Dr. Casey said he even had to take out another part of bone to get to it. I 'm sure he explained it to me but that was 7 or 8 yrs. ago. My memory is terrible.I know I am far from being alone on that. I kinda look at it like if Dr. Casey couldn't fix me who can? I KNOW WITH HIS PASSING, HE IS GREATLY MISSED BY MANY!!
In 2010, my thin-slice MRI (as doc called it) showed the artery sitting on the nerve. When doc did the MVD he also found a vein wrapped tightly around the nerve, so much so that it left a deep impression on the nerve when he removed it. I suspect this is why my TN is ongoing.
Dawn, Dr. Ken Casey died? When?
Mimi, I believe it was during this last spring break. He thought he was just tired and needed a vacation, when he came back he was sick with an infection and put in the hospital where he passed away a few days later. I had been in conversation with his nurse, during those couple of of weeks. He is missed greatly it was so sudden. I hope everyone has the most painfree night possible. (HUGS.) Dawn.
I had 2 MRI's with contrast and nothing was seen by 2 neurologists and 2 neurosurgeons. I consulted with Dr. Ken Casey last month and he clearly saw a vein twisted around my trigeminal nerve and even showed me. I have scheduled an MVD now with Dr. Casey. Not because of this, but for a host of other reasons, mainly his extensive experience with this disease and this surgery. Sometimes it takes a well trained eye to see it.
I just saw Dr. Casey in July. I have an MVD scheduled with him in October. Maybe it was a different surgeon?
It was a different surgeon. Dr. Casey is alive and well.
Thanks for all your replies. I happened to get assigned the neurosurgery ward at my hospital to work in for a shift (at the moment I go nursing all around the hospital) ... I had a conversation with the nurse manager and she said the neurosurgeons were really good here and do lots of MVDs. So that's good to hear if I ever should need it. We also just got health insurance that can allow me to have a private operation if need be up to $100,000 even when it is a pre-existing condition. At the moment it's not too bad, meds cover it for the most part, was just frustrating to have no clear answer on an MRI!