There are a number of options available to you in case the medications do not work for you, or if you find the side effects unacceptable. Some of those options include Gamma Knife, Radiofrequency, Glycerol Injections, Balloon Compression & Microvascular Decompression (MVD) to mention a few. My knowledge is with the MVD. Hopefully one of the other people who have had these other procedures will write to let you know how these are done.
Before I start let me just say, no two people are alike, and what is right for one may not be right for someone else.
This is my story of how I decided to go for the MVD. I am 49 year old woman who struggled for 13 years with TN before I made my decision. In July 2005 I had an MVD. Today I am pain free and medication free.
If I had known then what I know now, I would have never lost that much of my precious life.
If even 1 doctor had the guts and honesty to tell me "this will never get better and will never go away"....
If even 1 doctor had told me "the meds will have to be increased to keep you pain free as your life goes on"....
If even 1 doctor had told me "you are a young woman and an MVD will give you your life back".
All these things are true, yet no one said them. I always was told, "If the drugs work, then stay on the drugs". Those drugs compromised my life for so many years.
I opted for the MVD over the other procedures because it is the only procedure available that does not destroy the nerve. All the other procedures work by damaging or destroying the nerve in some way to give you relief of pain. The pain of Trigeminal Neuralgia is usually caused by a vessel (artery/vein) beating on the nerve and thus wearing away the myelin sheath - which in turn causes the nerve to misfire after a stimulus to the trigger area. The myelin is critical in how the signals travel along the nerve fibers so if it's worn or gone, things go all haywire in transmission of touch signals and they end up being sent to the brain as jolts of pain instead of light touch. During an MVD the root of the TN is examined and all offending arteries and veins are padded off using Teflon pads. This frees the Trigeminal Nerve and in most cases the pain is gone but the nerve is left intact and unharmed.
MVD is the most invasive of all the surgeries. It is cranial surgery and is performed by making a small incision usually about 3-4 inches behind the ear. Then a small area of skull is removed. They say about the size of a quarter. The surgeon then uses his tools and expertise to remove any offending veins or arteries compressing the trigeminal nerve and padding it off.
MVD has the highest success rate of all the TN procedures. The percentages differ depending on which report you read, but I have seen anything between 92-98% success rate.
Here is what I’ve learned though. That general success rate means very little. The thing which is more important than the general statistics is the statistics of the surgeon you pick. Not all surgeons are equal and not all are necessarily very experienced in MVD surgery. The most important questions to ask your neurosurgeon are: How many of these surgeries have you preformed? What is your personal success rate and what do you consider to be a successful MVD? Some doctors will tell you “being pain free” and some will tell you a “reduction in your medication”. The bottom line is you want to have this done by the very best surgeon you can find. Travel if you have to, but don’t settle for a doctor that is conveniently located to you, unless he is the best. This is major surgery and in the hands of an inexperienced doctor and team you may not get the results you are hoping for. You want someone with many MVD procedures under their belt. My doctor had done over 300 (at the time) in the past few years and his success rate was 95% to be completely pain free. I interviewed about 6 neurosurgeons over the years before I chose this one. Once again I cannot stress enough, the importance of your surgeon. Don’t let the desperation of your situation guide you into making a quick decision.
You will have an MRI at some point to not only see if there is something compressing the nerve, but to also rule out things like MS, tumors etc. It is very difficult to see compression on an MRI, however through advancements in that field there is an MRI available called a 3D thin cut MRI. This type of MRI has a better chance of showing compression, but again many people do not show compression on any of the imaging. I am one of those people. I had the MVD without any compression showing anywhere. On the advice of my surgeon (whom I trusted) I had the surgery. 2 arteries and 1 vein looped around the Trigeminal nerve were found. None of this showed on the MRI.
MVD is most successful in people who have Typical TN. If you have Atypical TN, it can still be successful however you will have to discuss the success rate with your surgeon.
There are many emotions involved in any surgery and this one is no exception. All I will say about this is the weeks before the surgery were so much worse for me emotionally, than after the surgery. I was an absolute basket case. After reading many others' experiences with MVD I see now that I was not unique. In most cases the fear of the unknown is far worse than the recovery of the surgery.
When I was trying to make the decision to have the MVD I looked for all the information I could find. I wanted personal experiences, not just textbook information. I had a hard time finding much so I decided at that time I would keep a diary of my MVD from day 1 to 6 months post surgery. Here is a link to that diary. It was written in real time, not after the fact. I hope it helps some of you make your decisions and then through your recovery.
The recovery from MVD was not nearly as bad as I thought it would be. I was in ICU for 24 hours, then in a regular room for 2 days. Most of the uncomfortable surgical pain was diminished within 24 hours. The first day I was given Morphine, the 2nd day I went to Tylenol with Codeine and the last day in hospital I was only taking Extra Strength Tylenol to manage the pain. I stayed home for 3 weeks after the surgery before returning to my work, which is a desk job. If you have a job that requires more manual work you may want to wait a bit longer. Take your cues from how you feel and speak to your doctor. I was able to drive after 2 weeks, although turning my head to check the car's blind spot still hurt.
The incision is the last thing to heal and that can take a long time. Things like wearing glasses can be uncomfortable if the arm of the glasses sits on the incision. A small area behind your ear exactly where the incision is will be shaved. You can shower and wash your hair after a couple of days and my surgeon encouraged me to do that as it keeps the area clean. The staples come out after about 10-14 days and that takes less than a couple of minutes and is no big deal at all.
Here is a link to information that explains the procedure:
I know what you are going through now is just horrible. I wish you all the luck in the world on your journey to a decision that is right for you. I am on the forum regularly and am always available to answer any questions you may have. Please don’t hesitate to send me a PM (Private Message) or post a new thread. Good luck.