I have had a MVD surgery 11 days back and I wanted to share my experience- why did I go for the surgery, why did I not choose any other less invasive surgeries like radio surgery (Gamma Knife) etc..
A brief history of my TN pain
I am now 43 years old and was diagnosed with TN in 2003 i.e. about 10 years back. I have been on carbamazepine (Tegretol CR) all these years. The dosage was adjusted according to the level of pain. Max I went upto is 800mg and lowest was 200mg of Tegretol CR.
Why did I go for the surgery (especially after so many years)?
To be frank, I think I should have gone for the surgery many years back. The Tegretol was keeping the pain in check and I was somehow able to take the TN pain in my stride and was not effected much with it emotionally.
I had visited a reputed Neurologist about 5-6 years back and had specifically asked him whether I should go for MVD- his answer was a clear no. He said that I should not even think of it. I did not question him further as to why he said so. I guess the reason is that people feel why take the risk (and pain + cost) of a surgery when the pain can be handled by medication, especially when the problem (TN) is benign otherwise.
I would like to add here that this experience has shown me that Neurologists and Neurosurgeons think in different ways. For a Neurologist surgery is the last option. A Neurosurgeon thinks that if the pain can be got rid of by a surgery then why not go for it.
In past month before my surgery my pain increased and would not go back. Dosage went to 800mg Tegretol, I probably needed a higher dose but my body couldn't take a higher dose- I felt sort of out of balance. I could, as earlier, able to bear the pain but I always hated to be on medication for all my life + the drowsiness the medication brings has affected my work effciency.
At this time I got an inner call (or it can be called conviction) that I wanted to go for surgery.
What articles or links helped me to decide on the type of surgery to go for?
The thing that helped me most is the book Striking Back! The Trigeminal Neuralgia and Face Pain Handbook written by George Weigel and Kenneth F. Casey. George Weigel himself has had TN and then went for MVD surgery. The book is written for layman, like most of us who do not have a medical background as such. This book is my bible for TN. The material on the web is pretty scattered and wasn’t that helpful. This book covers everything very nicely- also give stats of things like success rate, success rates over time for all the different kinds of surgeries- the though the cheek ones, Gamma Knife and MVD. This book is a must read- plain and simple.
http://www.fpa-support.org/2011/01/striking-back-the-trigeminal-neuralgia-and-face-pain-handbook/
I of course searched around on the web too. This Living with TN site and discussions on it were very useful as there are a lot of people who are having or have had TN.
This TNA Online Community was useful too .
http://www.fpa-support.org/forumlanding2.html
More information on Gamma Knife TN Treatment
http://www.neurosurgery.pitt.edu/centers-excellence/image-guide-neurosurgery/trigeminal-neuralgia
What were my findings? Why did I choose MVD over other surgeries?
My main findings were-
- MVD is the most invasive surgery out of the other options like glycerol injection, balloon compression, radiofrequency rhizotomy and radio surgery (Gamma Knife - GK).
Note: Though GK seems non-invasive as there are no cuts made, it is really speaking not so. It causes damage not just to the trigeminal nerve but also a little to surrounding area (so I believe). - Other than MVD the other surgeries like glycerol injection, balloon compression, radiofrequency rhizotomy and Gamma Knife were destructive surgeries. They damage the trigeminal nerve so that it does not carry back the pain signals to the brain. The tradeoff is that due to injury to the trigeminal nerve there is some permanent facial numbness that will come.
- MVD has the highest rate of success compared to other surgeries. Different sources give different figures. My neurosurgeon has performed more than 700 MVDs and he said that the success rate is 93% or higher.
- MVD is more likely that other surgeries to cause complete pain relief. It also has more likely to bring long term relief. In other surgeries the chances of the pain coming back in a few years is quite high.
From above I was sure that MVD was the one for me. It’s the best option if you are physically fit enough, if not then the other surgeries can be considered.
Were there people who felt that I was making a wrong choice by going for MVD?
Yes, I had visited a reputed neurologist some 5 years back. He advised me to not even think of MVD due to the risks involved. When I read the above book then I realized that neurologists and neurosurgeons think in different ways- neurologists will always favor the medicine route while neurosurgeons will favor surgery. It’s finally up to us decide what to do. I was given reference of two more neurologists but I did not visit them as I did not want to get confused.
My family members too where apprehensive about me going for MVD due to the risks involved. But I was clear in my mind. Other thing is that, I think the risk for MVD is exaggerated. I am not a medical expert but I do firmly believe so- especially after the figures given by my neurosurgeon + going by my own experience.
Who was my surgeon and what made me choose him?
I was operated on by Dr Jayadev Panchwagh of Pune, India. I found his website from google and then went and visited him soon after that. On meeting him I was clear that I need not look further and could completely trust Dr Pachwagh and his team to operate on me.
He and his team have done more than 700 MVDs. He sounded so confident and at the same time was pretty open in sharing the facts. I had gone to visit him along with my wife (who herself is a doctor) and my mother. We all got a positive feeling on meeting him and Savita Khaladkar who assists Dr Panchwag.
My family and I am and always will be thankful to him and his team.
Note: you should always choose the surgeon and hospital where MVDs are done frequently. This increases chances of success a lot as the operating team is geared for the surgery.
Alright, now coming to the actual surgery- how did my surgery go?
Surgery went very well. It’s been more than 10 days now since I am without Tegretol and without any pain. It’s such a nice feeling! There is numbness on my right side of face but I am told that it will go in a few weeks.
I am very happy to have got this surgery done. It brings back a lot of quality to my life- no more sedative effect due to Tegretol and no more fear of the pain.
What was the procedure followed at the hospital for the surgery?
I got admitted day before the surgery. Different tests were done to make sure that I am fit for the surgery. Some of the tests done were checking blood sugar level, checking blood pressure, different blood tests like hemoglobin level, HIV test etc.. An intra-cat was inserted for injecting fluids into my body (no medicine was injected before the operation). They completely shaved my head and also the pubic area. This was done to avoid chances of infect. Pubic area was done as the catheter is inserted there for the urine bag. Once I was told why they are doing the shaving I had no problems with it. BTW- head shaving was ok, but after pubic area shaving that area looked so different and ugly without the hair!
Before the surgery I was taken to the OT and given general anesthesia through the intra-cat. I did not even realize it- in no time I was knocked out and do not remember anything. Surgery lasted a little more than 2 hours. After the surgery I was moved to the ICU for monitoring. When I was being moved my family members were with me and I could recognize them. They were quite relieved to see that.
I was in ICU for one day. I was conscious almost all the time. The first two days were difficult. I did not get sleep and was not able to orally take in even water and vomited it out. I could not get up to sitting position from the bed or lie done on my own as there was weakness in my neck. But after three days I could sit and sleep on my own. I was able to go for short walks. I got a lot of support from my family- someone was with me all the time in the hospital. When I came home they made sure I get good rest and good nourishment.
After the surgery, after each day there was dramatic improvement which everyone could notice. I was discharge after 5 days. After the first few days the progress is slower. The facial numbness has reduced but it will take few weeks to months for it to go.
I had 11 sutures put. They were removed after the 10th day. Removing them takes just about a minute.
How soon can I get to work? Any precautions I need to follow?
After 2 weeks from the surgery I can work few hours a day. After 3 weeks I can work even more. I was told not to drive to work for one or two months more as after any brain surgery there can be problem with physical balance.
Any tips for fellow TN people?
It’s been just 10 days since my surgery so it’s a little premature for me to say anything. But my experience so far has been very good. I have made the right decision. It’s not worth living with TN for the rest of your life and managing it with medication. After I have been off the carbamazepine I feel less sleepy during the day and my bowel movements are also better. Wow, what a relive!
I would say that do not keep thinking too much. Do your research and choose the best option. But if say you decide to go for surgery then get it done quickly. Go with a positive frame of mind.
It of course goes without saying that I will be most willing to answer any specific question someone has :)