Hi All
I just returned from my neurologist appointment. I asked him about a reference for a surgical consult, as I am taking the most Neurontin I can, and it is not very effective with constant burning, boring pain in my scalp. I am also starting to have twinges of pain in the other side of my face. I was most interested in a referral to a doctor who performs MVD, but my doctor feels that would not be the correct procedure for me, as he thinks the TN is caused by scar tissue from a pervious brain surgery I had, and not by a artery or vein pressing on the nerve. Granted he did not see this scar tissue on my MRI, but is assuming that is the cause. He said the surgery I would have, if I did have it, would be radiofrequency.
I am confused, since the neurosurgeon who did my first surgery did not see anything on my MRI when I went to him in January, prior to the TN diagnosis.( He did not diagnose the TN, but did not see any relation between the problems I was having and the previous surgery)
I like my neurologist, but am considering seeing a surgeon on my own.
He added Lyrica to my neurontin in the hopes that will help, but did say this is the end of the medication route for me. I have no problems with surgery, as a matter of fact, I would rather have surgery than take a lot of medication.
I am at a bit of a loss here, and would appreciate any and all thoughts.
Thanks
Christine
It’s NOT your doctors choice, it’s yours. He can advise you and share his opinion,but ultimately it’s your right to explore other options.
I suggest getting a 2nd opinion first from a different neurologist, then requesting a referral to a neurosurgeon.
It’s hard, but we must advocate for ourselves.
Good luck!
(( hugs ))
Thanks,Mimi!
Mimi said:
It's NOT your doctors choice, it's yours. He can advise you and share his opinion,but ultimately it's your right to explore other options.
I suggest getting a 2nd opinion first from a different neurologist, then requesting a referral to a neurosurgeon.
It's hard, but we must advocate for ourselves.
Good luck!
(( hugs ))
Look at the doctors tab where we have recommended some surgeons for the brain !
I agree with Mimi and KC Dancer. Be persistent in your pursuit of a cure! My neurologist wanted me to live forever on meds that were not working and said surgery was a last option. I pushed, found a neurosurgeon and had a successful MVD in June. Two compressions were found. I am now pain free. The neurologist said my MRI was "normal." My neurosurgeon, who I consider a genius, said MRI is not a reliable means to diagnose TN. He went almost strictly on my symptoms and was confident he could fix me...and he did! Do not give up!
My PCP and neurologist both said my multiple MRIs did not show any compressions. I met with my neurosurgeon (Dr. Follet with Nebraska medical center) and he saw a compression looking at the same MRIs. My MVD is Thursday. In the consult he went over the 4 main surgical options for TN and why they would or would not work for me.
I don't know if MVD is an option for you , but you should have a neurosurgeon that can discuss it with you.
Thanks Mandie. I am hoping to get an appointment with Dr. Jeffrey Brown in NY. He is a neurosurgeon that specializes in TN and I am expecting he will have some answers for me. Best of luck with your upcoming surgery!
Mandie said:
My PCP and neurologist both said my multiple MRIs did not show any compressions. I met with my neurosurgeon (Dr. Follet with Nebraska medical center) and he saw a compression looking at the same MRIs. My MVD is Thursday. In the consult he went over the 4 main surgical options for TN and why they would or would not work for me.
I don’t know if MVD is an option for you , but you should have a neurosurgeon that can discuss it with you.