I wanted to check in after my surgery and tell you all how things have gone. I had rhizotomy of 9 and MVD of 10 on June 23rd. I just took a drastic drop on my medication this week and have no pain! There is some burning when I drop, but that passes in a day. I "woke up"yesterday after being so sedated, off balance and having horrible bouncing vision for over a year. I was marveling at the beauty of everything yesterday. There had been no obvious compression on either of the MRIs I had. When the surgeon went in, he found compression of both 9and 10. He spent most of his time decompressing 10. I woke up with no swallowing difficulties and my voice was unchanged. He said decompressing 10 rather than cutting upper rootlets was a better approach to lesson the chances of major complications. He is dropping the medication slowly. He believes in being more conservative with the discontinuation of the medication. I my first post on this site was my fear of this procedure and having deficits after surgery. I am so glad I went through with it. I was having to raise my medication every week to control pain even though I was already on 2900 mg of Trileptal, 3600 mg of Gabapentin, and 400 mg of Lamictal. I have liver damage from the drugs, I broke my nose and two ribs, and bruised my spleen falling from the side effects of the medication. I hope this helps those thinking about surgery. I wish I had done this before so much damage had been done to my body. I am 40 years old and was a complex patient. I have CNS lupus and Sjorgren’s syndrome. They managed to keep the procedure safe and the recovery as comfortable as possible. This was my second brain surgery with the same surgeon. I came out of surgery with the same function as I went in. I am down to 1900 mg of Trileptal and 2600 mg of Gabapentin. This drop was done over a week. No return of the stabbing electric pain that once dropped me the floor and stopped my breathing. Please believe there is hope. I had lost mine. Love and prayers for everyone here. We are all brave and strong. I have hope again. I believe I will get off all of the medication. I hope this helps.
Nicole, I also had a rhizotomy in July. How are you doing now. What are your results after 6 months out? Gloria
I am on a small amount of Gabapentin, but basically pain free. It took a
long time to wean off of the drugs and had rebound discomfort during the
process. It was a God send. How are you feeling?
Thanks for your answers. I am glad things are going well for you. I still have the numbness and itching. But compared to the electric shocks I am pleased. I have a brain tumor on my brain stem that touches my Trigeminal nerve. I am just glad for the relief. Hope things will stay good for you. Gloria
I’m glad your pain is better. There is really nothing worse. My ninth
cranial nerve and tenth cranial nerve were compressed by an artery. Is the
tumor operable. I had an amazing surgeon at Cedars Saini in Beverly
Hills. If you would like his information, just let me know. I’m praying
for you.
The tumor is supposedly inoperable. My age, over 70, and the fact that it’s in the most inoperable place,brain stem, makes it a to risky. I am down to one pill now. The itching needle pricks and the numbness can be irritating at times. I will opt for the rhizotomy again if the excruciating pains return. Thanks for the doctor information. An east coast-west coast thing. God bless. Gloria
You are in my prayers. I am glad it has gotten better. God Bless!