After 5-6 years of being in pain and trying all kinds of meds that haven’t worked, my primary care physician has referred me to a neurosurgeon. I have Kaiser Permanente as an HMO, and they tend to be very conservative with treatment options. I did some research first and decided the best neurosurgery departments would be in LA or San Diego, as they are affiliated with UCLA. I asked to see the best, and to my amazement, she got me a referral to see the two top-notch docs (they work as a team) down in San Diego! It probably helped that I had an attack while in her office, and my weight was down to 118 pounds (I’m 5’ 9", last time I weighed that little I was 11 years old and considerably shorter!).
I love being thin, finally, I’ve been kind of chunky most of my life, but I miss being able to go out to eat without it turning into a freak show! Typically, I can get a few bites in before the side of my face contorts in agony. Not something I like to display in public.
I am hoping to be a candidate for surgery. I was initially diagnosed with atypical TN, but now my symptoms seem to be more like “regular” TN… the attacks hurt much worse, but I typically have no pain in between attacks.
I am really scared of having surgery, but I also imagine how wonderful it would be to live without this pain. Maybe I could even ride my horse again instead of just having a very expensive pet! (ha!).
For those of you who have been through surgery (or even those who haven’t), what kinds of questions should I ask? My appointment is over a month from now, so I have lots of time to think and obsess and scare myself (gotta stop watching those You-tube surgery videos). I would imagine the MVD is the way to go, but I worry about the recovery time. I have a barnyard full of animals to care for!
Suzanne Marriott
Suzanne, I have an MVD scheduled for Monday. Interestingly, I had an attack in my neurosurgeon’s office ~~ I think that moved him in the direction of surgery more quickly than he maybe would have. Thin can be a great thing (I have chased the same 25 pounds around for the last 30 years :-), but I am sorry you lost weight this way.
I am going to blog about my MVD. I am looking forward to being pain-free and hopefully free of facial spasms. I will be happy to share my experiences with you. If you message me, I will give you my blog link!
I don’t have a barnyard full of animals (my sister is a farmer’s wife and the mother of 8 children ~~ Yikes! :-), but I have an old yellow lab and a crabby cat and a darling hubby of 30 years! I just want to be pain-free! I sang in a praise band tonight and my face started to spasm ~~ Ugh.
My neurosurgeon said on a brain surgery scale of 1-10, MVD is a 3. He said to expect more pain at first but feels that there is a 95% chance it will help me. I like those odds. I will think more on the questions I asked him and his answers… it is sort of a blur to me still.
Best wishes and I hope you have a pain-free night tonight!
Hi Suzanne
The most important question I had for my surgeon was.“How many MVD surgerys had he perfomed” and to my amazement he had performed over 400 MVD’s.Also do as much research as you can as to the surgeon the hospital that the proceadure will take place.I was also lucky to find a blog from a lady who had MVD at the same hospital & same surgeon as I was going to have.I emailed her and asked a few questions.Fortunetly i only had this disorder since June 2009.I am just over 5 weeks post MVD.I am completely off the Tegretol and have no pain (knock on wood).Everyone is different but trust in faith and I’m sure all will get better.I also had to get anti axiety meds a couple weeks before surgery to help keep my mind at ease.I WISH YOU THE BEST OF SUCCESS…Godbless
Brian
Hi Suzanne,
When I first went to see my Neurologist he actually triggered my TN by brushing his torch against my cheek as he was looking into my eyes. It was so painful. There were two students in the room and he said “look at this ladies face, that is a classic trigeminal neuralgia grimace” The two students were studying me intently and for a moment I felt like an exhibit at a zoo. Afterwards he apologised but said it was a good example to show them as they hadn’t seen a TN patient before.
I have also lost stacks of weight since having TN. Unfortunatley despite taking a lot of Tegretol I still find eating my greatest challenge. Like you I’m not keen on eating in public and a couple of weeks ago when I went out on a celebratory dinner with my firm I was acutely aware of how slow and awkward I was eating. I felt difficult because I was so slow and then embarrased because I left so much on the plate. I much more comfortable eating at home where I can take my time and not worry about how long others are having to wait for their dessert. My hubby and daughter leave me to it.
I am not a candidate for any of the surgeries for TN as mine is caused by inflammation. I am currently waiting to have a lumbar puncture and other tests as I’m having increased problems with weakness on my left side. I’m hoping to finally get some proper answers as to what is going on. Even if the answers are not what I wish to hear.
I used to ride my cycle almost everywhere and certainly miss that.
Whatever you decide, I hope it works out for you. Please keep us posted.
Love Jo X x
Suzanne,
I wondered how many surgeries my surgeon had performed but I didn’t ask. And I didn’t look at any videos. I did ask my surgeon what he thought I should consider and he said MVD or gamma knife. My MRI was negative. I said MVD and he said I made the right choice. He said I was young and healthy so that was the best choice.
Liz K.