Please allow me to present an overview of my MVD surgery. It was a positive experience. Understandably this Forum has more negative experiences documented overall than positive ones. I understand the nature of this and certainly have compassion for those who MVD is not possible or did not work out as expected. My hope here is to give optimism to those awaiting MVD or deciding to proceed with it.
On the afternoon of July 17, 2012 I had MVD surgery at The Massachusetts General Hospital (MGH) in Boston, Massachusetts, USA. The surgery was performed by Dr.Emad Eskandar, the Director of Stereotactic & Functional Neurosurgery and the Director of the Neurosurgery Residency Program at MGH, also Associate Professor@ Harvard Medical School. He was assisted by a team of Drs including specialists from The Massachusetts Eye and Ear Institute to monitor my hearing during the surgery. The surgery was successful in eliminating my TN pain.
I had been on Tegretol and Neurontin since my TN diagnosis in April of 2011. Whenver the pain increased so did my dosage of carbamazepine and so did my mental "fogginess". This became intolerable in late 2011 and I looked for another option. MVD seemed the likely choice for me.
I decided I needed advanced care from somewhere with frequent TN contact and experience. This led me to MGH. Their credentials are outstanding ( easily looked up). I met with a neurologist there and we added a medication ( Indocin) that eliminated the hemi-cranial headaches I was experiencing and tinkered with my carbamazepine dosage. During this time (early 2012) I had a thin slice FIESTA MRI of my brain, head and neck performed. No gross abnormalities according to the report but some compression around the right trigeminal nerve.
Prior to meeting for the first time with the Neurologist at MGH I was investigating who could/would perform MVD for me. My research led me to Dr.Eskandar at MGH. Experienced (wasn't sure how experienced yet,) credentialed and associated with one of the worlds finest hospitals and medical schools.
I attempted to make an appointment but his office suggested I proceed with the neurological team at MGH and if needed they would refer me to him. Good. They eventually ( April 2012) did refer me. I had an appointment for May 8.
I met with Dr Eskandar ( Dr.E) on May 8th and he showed me the MRI. He described and pointed out how my left trigeminal nerve was clear ( no compression) and how my right was not , he felt that there was a significant compression there. I could see the difference plainly. He felt I was an excellent candidate for MVD. 90% success rate and less that 1% complication rate. I asked how many MVD's he had performed (hundreds) and how often (50/100 annually.) This was very acceptable to me. Studies have shown that how often the Dr and facility perform MVD has a positive correlation to success rates.
July 17 came and I went to MGH. Everything was very smooth. Check in, preparation, etc and I was sent to preop. The Drs and nurses all came in, said hi, explained and double checked ( actually i was asked 5 times) what they were going to be doing .
An IV line was inserted. I was taken to a new (8/2011) operating room and was quickly asleep. I awoke 3 hours later in a dedicated neurological intensive care unit. I was very thirsty but otherwise OK I was monitored very closely for the entire night and half the next day when I was moved to a regular room for 1 more night and left on the morning of July 19.
I was given mild pain killers after the operation for mild discomfort, emphasize mild. I felt better than expected. A little sore from the operation but nowhere near TN pain and I havent had ANY TN pain since.
Saw the Dr the following morning after being visited several times by the neurolgical residency team, some of whom assisted in the surgery. I had a very large compression of the nerve caused by a cerebellar artery. It was in two places. It was moved and buffered so it was not in contact with the nerve. Classic MVD surgery.
I have a 5-6 inch incision that was sutured with dissolvable sutures and this was covered with a dissolvable protectant which has since dissolved. The sutures are almost gone.
This past week I went for my follow up visit with Dr. Eskandar and was cleared to resume normal activities.
I still have a bit of a numb tongue and chin from the manipulation of the nerve which should subside ( already has) ina few weeks.
If you have any questions about my experience PLEASE contact me. I am very happy to share my experience. It has been nothing but positive. Just to be able to wash my face and brush my teeth without any pain has been worth it, let alone the other triggers.
Please consider this life changing surgery as a solution for TN. When it is successful it FIXES the problem. It doesn't mask it as medicines do. It has worked for me. While there are no guarantees going forward I expect that this will be a lifetime fix.
Best,
Rick ( Coventry, RI, USA)