I'm trying to do research as this has to be my next step, all i see to see and read are horror stories about recovery, and not working or worse than before surgery. I don't know what would be worse this constant pain and numbness, a hand gun or having surgery to just go deaf have massive headaches and new pain. I really need some feedback here
Hi sluggo,
Most people who post on these forums are people who are still struggling with TN, those that have had successful procedures usually move on with their lives and don’t return to the support forums.
That being said, we have several members here at LwTN who are pain free with meds, alternative therapies or mvd surgery. They continue to support and share their stories.
Check out the mvd group, there are a few success stories there, also we have a group called “success stories” read there too!
You need to read and research as much as you can and truly only read or get consults with medical professionals who specialize in TN. It may mean travelling…
My mvd is in a different province, we are flying there 2 1/2 hour flight. But he is a specialist. The neurosurgeon in my province was willing to do it, but he doesn’t deal with TN as much.
There are many studies and statistics out there on the Internet, you need to make a personal decision after much research, as we are all different.
The risks are minimal with mvd, that is why I chose it, yes it’s invasive brain surgery, but NOT damaging to the nerve, that’s what it is important to me. I researched for 6 mths before I made my decision …
(( hugs)) Mimi
I agree with Mimi. A lot of people fade away from these sites when they are pain free. I am pain free right now with meds (for the most part), but I still try to check in a few times a week. I think if your neurosurgeon thinks your a good candidate for mvd, then do it. Sometimes you have to do it a 2nd time, but that's ok too. Make sure whoever does your surgery has experience doing it and has experience with TN. Hugs!!!!!!!!!!!
Hi Sluggo, I agree with Mimi. When people, including myself are pain free, find something more incouraging to do. Having TN is a very difficult diagnoses to swallow. It is also difficult to hear story after story of failure. I have just returned to the site because my tn returned and I decided to go thru with MVD. I had my surgery April 1st by a well respected Doctor at (MUSC) Medical University of South Carolina. I went to my consultation a week before my surgery and knew I had the right surgeon. I cant say enough about the Doctor, staff and hospital!!!!! So far so good! I have some double vision that is getting better everyday and the TN pain is completely gone, I am still on meds but in process of being weaned off. Most people dont report the good news but I want to so you can receive some hope. May God bless you
Sluggo,
You make a very good point. This blog seems to under-represents successful surgeries and over-represents unsuccessful surgeries in terms of comments made. In defense of the blog, it does help a lot of patients. I do believe that the majority of MVDs, rhizotomies and gamma knife operations are successful. Along with being an information exchange source, the blog gives members the chance to vent about their experiences. Most successful MVD patients have better things to do than hang around a blog,they move on. However, I believe that the medical community underreports unsuccessful surgeries and there are surgeons that oversell surgeries as a solution.
Sloggo, here are a few suggestions requiring a some effort..
Start a new discussions. "Anyone with a successful MVD, please contact me."
Ask your surgeon, neurologist, primary care physician for patients who are willing to talk to you about their MVD experience. While one may say no, I think there is a good chance one of them will say yes. It does not hurt to ask.
Get 2 or more second opinions from surgeons on whether you should get the MVD. It is worth it even if your insurance won't cover it. I have found each surgeon giving me information I did not know before.
BTW, my surgery was unsuccessful, so don't talk to me.