Trigeminal Neuralgia and microvascular decompression (MVD) surgery
Ive been a member for over a year now but suffered for chronic pain for over 3 years. I suffer from constant burning pain in the left side of my face. Without medication id rate it 10/10. I take neurontin, paracetamol and verapamil. The verapamil is a drug my neurologist has put me as the neurontin+paracetamol is not enough. Verapamil is used to hold off the onset of migraines and it has helped slightly.
Had a medical breakthrough in the past couple of days.. Ive seen a million different Drs as im sure most of you have but one has finally found, what i hope to be, the cause of my severe facial pain.
The Neuro-Surgeon has read my scans and told me over the phone that i have a vascular loop at the base of my brain at the entry point of the trigeminal nerve and that i am a candidate for microvascular decompression (MVD) surgery.
Have any of you have MVD surgery and what are your experiences with it. I am aware that it is a little scary as they have to cut a hole in your skull to get to the nerve base... At this stage i ahve been suffereing severe pain along the trigeminal nerve for jsut about 3 years now, So i am very excited that someone has finally been able to diagnose and outline a surgical procedure which can cure me. I also realise how lucky i am to have found this as it is a very small percentage of facial pain sufferers that are candidates for MVD...
I still have a 4 week wait to see the neuro-surgeon + how ever long it takes to book in for surgery... i will go private as i can handle this anymore... WIth pain comes > memory loss, inability to handle social situations, i cant read for more than 10 minutes, concentrate too much, be at the mall very long, so many negatives...
Soo happy to hear you finally have a diagnosis. I don't know anything about MVD...but it sounds like you have found a neurologist who does. That is awesome! I hope that there are patients out there that are familiar with MVD and can give you a personal take on it!
Hello, and Congrats. I have not had the surgery. I have heard good things about the success of it though. I am so glad that your path crossed with this neurologist after so many years of not knowing and unrelieved pain. I'm also glad you continued seeing different doctors when the others weren't helping and had no more suggestions. All it takes is finding that one doc out there that knows what the heck is happening, but often finding that doc is like looking for a needle in a haystack. I wish you the very best of luck on your surgery. Hopefully after you have in done you will feel like a new man. Please keep us posted on how you are doing. Good Luck and God Bless Brenda
Yeah ive heard some good things these past 2 days about the surgery.
Crackerjack, you are so right it sometimes can just be a matter of finding the right doctor. Last week i was at the pain management clinic, which is basically a "school" to reduce or get rid of your need for medications... They asked me where i was with my condition and i told them
> I believe that it is a matter of talking to the right person. who knows about this situation. They did seem a little put off by that and were more of the opinion that i should accept my pain and begin to deal with managing it... This being said, yes i should just deal with the pain but i didnt want to give up the search for answers...
Its so annoying that the medical system takes so long, for you to find the right person... I had seen 4 neurologists before this neuro new my conditions.. so the people out there who also feel like giving up... just know that these drs are only human and cant know everything... it can just simply be a matter of finding the person who knows...
Hello hun, I'm not sure the exact reason it takes so long to find a doc who knows sometimes. Here is my opinions of why though I honestly believe in some docs it is sheer lack of knowledge or sheer lack of caring. A lot of times any docs could have probably found the problem but some were either too busy to bother running more tests etc, or some had thought it was this diagnoses instead, and given a diagnoses then were too arrogant to admit they were wrong with what they told you before hand, and wouldn't bother to look further and change the diagnoses, or some never bothered to listen to what you were telling them.
I'm so glad you found a doc that was knowledgeable, persistent, not arrogant, and listened to what you were telling him was going on. If you hadn't found this doc you would have been at the PM school getting your needed meds reduced, and trying to learn to Live with a condition that was could be treated.
Sometimes there isn't anything that that can be done to relieve a person's pain but if they don't search down Every avenue available then they may never know that a treatment is available that could help them tremendously. I just want to say Good for you hun, for your persistence in continuing to try to find answers, and a doc who would listen. I commend you for not allowing someone else who really wasn't helping, dictate your future and allow you to be in pain the rest of your life with limited to no medication to treat it with. Good for you Rooka. Good luck and God Bless Brenda
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