I have had 2 MVD, CyberKnife and my Oncologist recommened me to go to Pittsburg to get GammaKnife. ( I live in Texas!!) After the doctor reviewing all my medical records he states I did not have enough relief the first time to received Gamma Knife. He is recommending me to have the glycerol rhizotomy. My neurosurgeon here is Texas, strongly recommends against this. Does anyone know anything about this or has anyone had any positive results from this??? I am feeling really down and feel like I have tried everything and all there is left for me is meds and live with this for the rest of my life!!! Thank you so much in advance and I hope all is having a good day (atleast a descent one!!!))
Hi Donna, you may get more responses if you post this on the main page in our forum/discussions section.
I’m so sorry your getting conflicting advice.
I would google all you can on all procedures, even use our search box on the main page to find previous posts about them. It’s so hard to make decisions, but knowledge is power. We must advocate for ourselves.
I’m thinking of you and sending positive vibes your way, (( hugs)) Mimi
Hi Donna, I had a highly successful glycerol rhizotomy about 15+ years ago from Dr. Andrew Shetter at Barrows Hospital in Phoenix, AZ. Prior to the glycerol rhizotomy I had severe TN on the left side of my head with numerous trigger points resulting in jolts of pain (with the frequency of a strobe light sometimes lasting 10-30 minutes) on the inside of my mouth above my front teeth. During bouts of TN, I could not eat easily as many foods would trigger the pain, nor could I drink easily. Slight breezes hitting my face would trigger the pain and even breathing through my nose with my breath hitting my upper lip would trigger the pain. Drugs - a lot of them curbed some of the pain, but since my TN is progressive, the medication dosages were also increased - I became zombie-like and hated the drugs.
In the early 1990's, prior to the glycerol rhizotomy, I had a microvascular decompression of the 5th cranial nerve done by Dr. Spetzler, Chief of Neurology at Barrows Neurological Institute in Phoenix, AZ. The surgery failed and I was placed back on medications.
Finally the disease overtook the medications and I experienced the most severe bout of TN ever, lasting about 30 minutes of constant face-ripping pain. I thought I was going to faint or throw-up and I had to work to stay conscious and calm by blocking out all auditory and visual stimulatlion (I stayed in a dark, quiet bathroom.) My husband sat with me but I could not be touched in any way because it simply took so much energy to focus on staying calm and allowing the pain to "flow through me" rather than struggle against the pain. After the pain was over, my husband drove me to Barrows where I was immediately scheduled for a glycerol rhizotomy.
Dr. Shetter informed me that the nerves would grow back since he was using a glycerol rhizotomy rather than an alcohol rhizotomy - and they are just now growing back. (I have an appointment scheduled with him on 11/30 to treat the pain that has just started again.) However, I am deeply grateful for the years of being pain free - it has been a true blessing.
The downside of the glycerol rhizotomy for me was profound numbness on the left side of my face. I frequently bit the inside of my mouth and didn't know it until I found blood or tasted it on the other side of my mouth. I am unable to feel food or anything else on the left side of my face and lips while eating - so my family and I developed a signal so I would wipe my face with a napkin if we were having dinner guests or out to eat. For the first few years the eye was impacted and I frequently felt that I had something in my eye. And, for the first several years, my face felt cold, very cold. I would frequently hold a blanket to my face to try to warm it. Probably the worst issue was that I got a piece of popcorn under the gum on a molar on the left side and didn't know it and resulted in the tooth being removed.
However, all the downsides are nothing compared to the pain of TN! So, continue your homework and if the glycerol rhizotomy is what you decide, then go for it - hopefully it will be as big a blessing for you as it has been for me. I will keep you in my prayers and warmest thoughts. Please let me know what you decide and how you are doing.