It’s been exactly one week since my surgery (Microvascular Decompression). I’ve been asked several times what lead to the surgery and what it is, so I’ve written up this. I hadn’t shared much about it online until the last 2 weeks. This post may be of interest or educate you so that the next time you ever hear of it you’ll know about the rare condition. I have never met anyone with it or anyone I know knows someone kind of thing. You may be the person for them that says I’ll introduce you to Terri, she may be able to give you info and offer support. And, please never hesitate to ask me or have a friend contact me. I had NO details. I researched a lot online. My neurologist even said I probably knew more about the condition than he did.
This past March I started having constant pain in the right side of my face. Mainly every single one of my teeth on the right side. Decided to visit the dentist. After X-rays they determined nothing wrong that would be causing the pain I described. There may be one thing irritating the gums causing some pain so they did a deep cleaning. It did not help. Hmmmm… I wait a few days and now it’s just getting worse. So now make a trip to on call dr that day. They’re kinda stumped too, but decide let’s try some steroids and get me some additional migraine meds since at this point I’m getting daily migraines.
Within 2 days feeling remarkably well. But… Once the steroid regimene is over the constant pain quickly reappears. So next trip to primary dr. By my description he says I it sounds like trigeminal neuralgia. What?! If interested you can learn more about it in detail here http://www.ninds.nih.gov/disorders/trigeminal_neuralgia/detail_trigeminal_neuralgia.htm
Because of the research I had done about entire side facial pain it was actually something I learned a bit about and was in total denial that because I did NOT want it to be true. During researching I had told a good friend, I sure hope I don’t have this, but symptoms are spot on. It is labeled “the suicide disease” because of the chronic pain and how painful. I share my concern with the nickname with dr and he says well, if you don’t control it, yes it can be unbearable, but he was confident we could manage with meds. Hmmmm… I get a scrip for more steroids AND gabbepentin (?).
What causes this I have asked many times and a few dr. replies have been along the lines of it’s the luck of the draw. If you know me, I do have a propensity for having uncommon medical conditions. LOL
Feel good once steroids kick in. You can’t take those for long though. And the Gabbepentin I call the devil drug. For me personally awful stuff. Incredibly sleepy and zoned out, feel high or wasted. Just bad stuff. After on it about 3-4 steady weeks it did start to control some of the pain. But you still have the awful side effects.
Time wasn’t on my side because my referral to a neurologist wasted about 6 weeks due to dr schedules. Insurance co didn’t want play nice about trying other drug that he wanted to switch me too. By the time I did meet with neurologist we agreed not a good drug for me, switch that up to another one I can’t remember the name of right now. Went through some new side effects. Constantly tired. Felt like I couldnt carry on a conversation because serious short term memory loss. Just to name a few. In short, this drug was very hard to tolerate. And, certainly difficult to run a business.
Drug 3 to try is carbamazepine. Worked a little better, but now I’m nauseated often along with other side effects. At this point prescribed depokote for headaches, and I get a referral to neuro-surgeon. Need to manage the pain itself until surgery.
First meeting with neuro surgeon it is clear surgery will be our best course, which I was already on board with from my own research. The surgery is called Microvascular Decompression. More detail here
http://www.mayfieldclinic.com/PE-MVD.htm#.VJDiiIg76rU
In short, the surgery is a craniotomy wherein they drill a hole through skull to get to nerve area to place a Teflon sponge between the artery and nerve. While in that area they found some other arteries or nerves attaching to this nerve and were able to address those.
However, December is busiest time of year for surgeries and dr schedules I had to wait about 6 weeks for surgery. That was nearly a week ago. Surgery went well I’m told. Recovery for me was not easy. I’m feeling better, but it’s slower than I hoped for. I still experience some of the pains before surgery because the nerve needs to calm down.
For those 6 weeks I would ask questions, but no one really knew for sure. Everyone is so individual and reacts differently. There aren’t many of these procedures performed so not much documentation or info from other patients to find.
I still have some recovery time but I have high hopes for overall success. I am very grateful for all the well wishes and prayers along the way
