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!!!))
Is your neurosurgeon well versed in your case and in TN? Do you want a second opinion - is there another doctor in your area with TN patients?
Don't stop trying!
Yes he is. He had extensive training in TN and has treated many, many patients with TN. I trust him 100%. I tried to get a second opinion in June and another neurosurgeon seems not to want to treat me due to me haveing previous surgeries. Then, this is a second opinion that I just received so I guess I need to get a third opinion. I think I have decided to received my second CyberKnife, then if that doesn’t work then I will speak with another doc that performes the Glycerol Injections. I have Type 1 & 2 TN and what I have read that you have a very slim chance of it working on Type 2. I don’t know!! I won’t stop trying. I am not willing to accept this is my life. I did fell that way yesterday when I received the news from the other doc. Thank you for your response and I hope you are having a good day!!!
I realize this is tough news for you, Donna. However, the prevailing opinion on multiple destructive procedures for TN among neurosurgeons seems to be “don’t”. There is relatively little difference between Cyber Knife and Gamma Knife. Both are known to create problems with adhesions and arachnoiditis in some patients. The likelihood is fairly strong that you already have mechanical damage to the trigeminal nerve from the three previous surgeries. Adding yet more scars to the nerve with a Rhizotomy of whatever type, entails a significant risk of worsening your pain.
You may need further workup and experimentation with medications to find an improvement in the side effects versus degree of pain relief provided. That’s worth seeking another opinion on. I would personally advise strong caution about further surgical procedures. With your history of past medical procedures, your risks are likely to be high.
Regards, Red