Went to see the new neurologist today. They are the Experts in face pain in my area. She looked at my MRI and said there was a HUGE vein growing right into my nerve. She pointed it out to us and it was amazingly humongous! She said I really should be doing better by now. They think at this point I’m agood candidate for gamma knife so they are squeezing me in to see the neurosurgeon this afternoon so I can get on the schedule. They think I ALSO have cluster headache so I have to be treated for that as well. They think my autonomic nervous system symptoms like my face getting super hot and burning are not from my TN. I’m willing to try anything at this point. Seeing that giant vein almost makes me feel vindicated if that makes any sense. You hate to know you have this but seeing it makes it real and means I am really not crazy!
Wow , you're lucky they found one! Most of the time they don't see them until they get IN your head doing the MVD.
I don't know anything about the knife, but I am glad they have any solution for you. Research the heck out of it for sure.
Keep up the happy thoughts.
I’ve already had two mvd’s so I’m running out of options for getting rid of this pain! I can’t stand being stuck in bed getting fat from these meds much longer sitting in the waiting room waiting to see the head honcho surgeon, the gamma specialist, and their nurse. I’m going to get all the info possible and set a second appointment in which my dad can come with me too. He’s much firmer in getting his questions answered and people are afraid of him because he is so tall (6’7") lol. He gets things done. Anyway, going to mull over all the info from here, plus my original neuro and surgeons opinions and info. These are big decisions. It’s my head after all.
Glad to see you posting so so Shindig! I hope you are feeling as well as can be expected post mvd!
Not sure how I feel about the knife...my surgeon didn't think highly of it at all.
Please get a lot of info on the gamma knife before you have it done. I know it works for some people. It was the first procedure I had done and didn't do anything for me except make the back of my head painful and swollen for weeks. I've since had an mvd done that lasted about a year and a half, and also 2 radiofrequency ablations about a year and a half apart. I am currently pain free since my last RF procedure on March 1st. When I had my gamma knife done I was rushed into it by the surgeon (not my current one). Looking back I never would have had it done. I'm worried about all of the radiation I received and how it will affect me later in life. Ask a lot of questions.
Oh geez, Heather. You are in a tight spot. I too am wondering how that could have been missed on your most recent MVD, but I know what you mean by feeling vindicated by today’s reading. Sometimes I feel like I am balanced on such a fine line in the “crazy” department too. It will be really interesting to hear how you and your family put all the information together and what your decision will be. I haven’t had a procedure yet so no good words there but I am really pulling for a good outcome for you.
Be very wary of getting GK. It can leave you with something called Dysesthesia and or Paresthesia ... not pleasant at all. you feel like something is crawling under you skin on the side of the face that has TN .... also numbness along with burning the medication which relieves it somewhat makes you feel (out of It).. I wish you well !
I’m getting all the info. I feel very comfortable with these doctors. Something has to be done. I can’t continue to live this way. I’ve had two failed mvd’s and my medication isn’t going to work out long term. I’m a useless lump on the dosage I need to dull the pain.
Good you’re getting the info. This will allow you to be cautious but informed, and you can be fearless and strong in your choice. This will go a long way in your recovery. I know you are at your wits end. I would tilt toward procedure too if it looked good. I’m rootin’ for ya.
I feel a bit weary of looking up too many personal gamma knife fail stories online as I know they do not represent the typical outcome from the procedure. On the other hand I’ve already fallen into the 10% that have failed mvd TWICE. The neurosurgeon I saw today said what my surgeon is by “roughing” (I thought he’d been saying “rubbing” the nerve this whole time!) doesn’t work so he didn’t know why he did it. This guy is really my mvd surgeon’s head boss. I have my family around for all of the appointments and procedures so at least I don’t have to make a decision on my own. My mom is an obsessive researcher just like me, so I’m sure by tomorrow she will have web innards and charts and graphs and everything else to look at lol. I will keep everyone posted for sure. This site has been the only thing keeping me same for the last 6-8 weeks.
In your heart, do you believe MVD's failed because of your surgeon or because the way your anatomy is? I'm sure you have an inkling - if you are a research hound..... Did your MVD surgeon learn FROM the head boss?
I would not probably look at a bunch of Gamma stories but I would want a firm percent range of success before jumping in.
I'm glad you have the A-Team to get you through the Q and A process!
Keep us posted!
Have you discussed a radiofrequency ablation procedure with your dr.? I have had 2 and they have worked really well for me. My first procedure was the gamma knife and then an mvd. Since then I have had the 2 RF procedures. Might be worth asking about too.
Positive vibes as your research your next step!
(( hugs )) Mimi xx
Hi Hcal, any reason why they wont do MVD? Validation does make us feel as though we are not crazy. Is the compression on the same side? You’ve had MVD already correct. So you have had 2 MVD’s is there a reason it did not show up first or second time. Feel so bad for you i hope this works for you. Not fair to go thru so much
Well you’ve been really “roughed up” that’s for sure. It’s a lot to have to make big decisions when you are in agony. Great parents you’ve got there. Sending good coastal energy to help you all get through another round of treatment.
When I was just googling around looking at stuff about my new neurosurgeon I found this. I didn’t even know he was the neurosurgeon for Gabrielle Giffords! She has had a dramatic recovery from being shot in the face. I feel even better about choosing him for my care from this point forward. http://www.cnn.com/2011/HEALTH/01/28/giffords.doc.profile/index.html
Wow, I think we can all relate to that. You feel like everyone is a doubting Thomas until they actually see something. If pain had a color we would be respected a little more. You are not crazy although that's definitely how I feel as well.
Geez Heather, you are in excellent Kung- fu- faking- hands! do you think your parents would adopt me?