That incision is massive! The neurosurgeon i see says the hole in the skull is only twoonie size. A twoonie is our two dollar coin. Perhaps they used a tribal size coin for your mvd. 
Patty did you see mine? Dr. K did a very neat job. I posted a link to my pic a page or 2 back in this thread or you can find it on my page.
Mimi
Hey Mimi, I missed that jpeg yesterday. It is a very neat job. ( still a big deal though!) I wonder if it depends on the surgeon, the area he envisions working in, or a combination or a whole bunch of stuff we canāt even imagine. Your staples will be coming out soon!
Mimi said:
Patty did you see mine? Dr. K did a very neat job. I posted a link to my pic a page or 2 back in this thread or you can find it on my page.
Mimi
Why are they sending you for a spinal tap Bellalarke? I got one after my second mvd bc they thought I might have meningitis due to my extreme headaches. No meningitis but they caused a leak and the most horrific scream inducing positional headaches you can imagine for 4 days until I was able to get a blood patch. The actual spinal tap wasnāt that bad, but unless they are looking for something very specific and it was their LAST option I will never let them do that to me again. The mvd hurt WAY less than the headaches from that leak.
Bellalarke said:
Hey Shindig, thanks for that explanation. gives me hope. I have a lot of the same type of pain that you had. My second MRI, FLAIR protocol ordered by my present neurologist showed lots of looping and contact of superior cerebellar artery. She requested consult with NS at UBC and that was over a year ago and I am on his list. In the meantime I ended up in the Vancouver Pain Clinic and that head doc ordered another MRI Fiesta, with contrast and non contrast and that came back negative and drove my neuro nuts. She said now maybe NS won't see me. In meantime I'm going for a spinal tap May 9th. I think I need to make some kind of personal appeal and will cite your success.
So great you're getting home today and that you have the new job to look forward to. Don't rush it though.
Peace and Joy for your future
Bellalarke
shindig said:The surgeon said type 2 does not mean MVD will not work it's just much less likely, where having TN1 has something like a 90% success rate. He said when there is no compression showing and atypical pain the surgeon is more likely to have a complication after opening you up. Probably because they have to look around more not having an actual image showing the location.
Because the artery and vein were strangling the nerve it rubbed raw and caused constant pain. I think if you HAVE type 2, AND a blood vessel shows on the MRI, you're a candidate for MVD.
My symptoms were TN 2 and the surgeon said the MRI really helped me get the surgery.
elstep said:Mr and Mrs Shindig
I wonder why an artery touching the nerve causes Classic TN in one person and TN2 in another?
Will we ever know the answer to the questions........Who knows? The important thing is your free of pain and recovering from your surgery, take care of each other xxx
After my first mvd I was cleared to drive at two weeks. This time Iām still not cleared because they have me on so many heavy meds. Just call your doc and ask. You are doing so well he may say its ok for you to start driving a little now. Who knows?! Still take it easy though. Sounds like it is all going really well for you! Itās so nice to see a positive recovery.my guess is that most people stop posting here after they are pain free since they donāt need a support group anymore. Thatās why we are all scary and in pain here lol
shindig said:
Yeah this incision is deserving of a mohawk haircut lol
I'm supposed to go in for my first day of work next Weds so I'm just resting up as much as possible. I felt fine this morning when I woke up despite having not taken drugs since last night.
First day of work is just going to be playing with cameras/sensors and some software, no heavy lifting and it doesn't have to be a full day.
How long until the doc clears you to drive? I was hoping he would when I get my staples out.
Hereās my first mvd when I had staples (I feel like this is the scene in Jaws where everyone compares scars on the boat lol).
Darn it the pic didnāt post! Here it is!
341-image.jpg (1.1 MB)
Heather, in response to your question about the spinal tap: back in early March, during an appointment with my neurologist, I broke out in a hideous hemi-facial spasm that was fairly unusual. Iād had them a couple of times before, on big traveling days. She whipped out her iPhone and recorded it, then took me into the examining room to do the standard neurological exam. Then she went back and consulted all the notes and thought that since this whole thing started more than three years ago with what what thought to be an ear/ sinus infection, that we had better rule out anything like Lyme, or weird fungal infection or anything else - other than compression - that might fly beneath the radar, especially since both TN and GPN have been diagnosed. So yes, she is looking for something, but mostly to rule stuff out. She wanted me to come back in the next week and I didnāt think I was up to another trip to Vancouver (which is 2ferry rides, bus, subway, etc and an overnight stay to get there if I donāt fly). The next week so we booked it end of March. (She is away all of April). But I cancelled the end of march appointment to because i just felt put through the wringer with tests, MRIās etc, and made it for May 9th. I am going to fly over on the seaplane right from here and a good friend is going to take me and keep me at her place in case of problems, and then make the journey home and hang out for awhile to to make sure Iām okay.
I am definitely not looking forward to this. I had an epidural 38 years ago during a hard, induced labor, and it was just awful, plus it only took on one side. So I have some scared feelings about this but I do think it is necessary. Could be it is old trauma coming back to haunt me. I am usually pretty game about most things in life and adventurous. Not this.
Now Iām kind of glad I waited. Just got back from GP and she told me to stop the trileptal immediately. Last week I had bad vision problems so had blood work done. My sodium has really dropped as well as hemoglobin, and oddly, sugar. Also blood pressure UP. So I only got to 450mg and held there for awhile because I felt it wasnāt good for me in a systemic way. I also failed on carbamazepine two years ago. So itās just good old gabapentin for now and a bit of tramadol and a little nortriptyline (which gives me nightmares). Iāve tried flexeril as a booster too but it is so deadening that I donāt care if Iām dead or alive.
Anyway, thatās a much longer explanation than I planned to write. Thanks for asking.
HCal said:
After my first mvd I was cleared to drive at two weeks. This time Iām still not cleared because they have me on so many heavy meds. Just call your doc and ask. You are doing so well he may say its ok for you to start driving a little now. Who knows?! Still take it easy though. Sounds like it is all going really well for you! Itās so nice to see a positive recovery.my guess is that most people stop posting here after they are pain free since they donāt need a support group anymore. Thatās why we are all scary and in pain here lol
shindig said:Yeah this incision is deserving of a mohawk haircut lol
Iām supposed to go in for my first day of work next Weds so Iām just resting up as much as possible. I felt fine this morning when I woke up despite having not taken drugs since last night.
First day of work is just going to be playing with cameras/sensors and some software, no heavy lifting and it doesnāt have to be a full day.
How long until the doc clears you to drive? I was hoping he would when I get my staples out.
Was the second incision in the same place?
In two years, I've only seen ONE other person go back to work around the one week mark after MVD WOW !!!!
And she had a desk job at her home.
I'm speechless - and that nevvvver happens!
What a nightmare! Mine all started with a horrendous sinus infection also. October 2011. They tried 6 rounds of antibiotics and a bactriban nasal wash before they got it cleared out. They did surgery to correct some structural issues left over from a sinus surgery in 2001 2 months before my first mvd. I feel like Iāve had it all done at this point! They tested me for all kinds of autoimmune stuff when that sinus infection wouldnāt stop and I was just sooo lethargic nobody knew what to do with me. I havenāt had any children, so I can only imagine having someone poke around in my spinal cord during labor and the having only half of it take! Yowzers! I often wonder if I may never get to have children now. Maybe I missed my chance. Iām single and I canāt imagine anyone wanting to get involved with the kind of problems I have.
Well that was heading off on one of my famous medically induced tangents lol. I guess you were lucky the doc was able to catch the hemofacial spasm on video! I really hope they get to the bottom of things with you and get you into a very long remission. Even better a cure!! Itās really awesome that you have a friend to help you out. Iāve always wanted to go on a seaplane!
I doc want to mention I had ANOTHER sinus infection in between my two surgeries that was really nasty. The doc actually exclaimed āyuck!ā when they scoped my maxillary on my TN side (I had to take a lot of Xanax and a norco beforehand) and they actually took a culture this time. They ended up getting me capsules that were antibiotic, antifungul, and a steroid compounded for me so I could make a special nasal rinse to use 3 times a day for 30 days. It hurt like hell on my tn side but finally did the trick. Was back at ENT todayā¦ I have ANOTHER sinus infection. Back on antibiotics. It never seems to end! I refuse to give up hope though. They will figure out what is wrong with both of us and pain free days are on the horizon!
After your spinal tap if you have any sign of positional headache call your neuro and head to the hospital for a blood patch immediately. It stops the headaches immediately. I was so mad I suffered 4 days when I could have had that done immediately!
This is really getting long, but Iām apparently chatty tonight lol. I also had a dangerous drop in sodium a few weeks ago. My neurosurgeon said to go buy salt tablets (I got mine at a health foods type place) and drink lots of Gatorade. It seemed to do the trick. My neurologist was concerned that nobody was checking my sodium levels anyway because apparently both gabapentin and carbamazepine can cause your sodium levels to drop. So now I have to have blood drawn periodically to keep an eye on it. Iām eating gabapentin like candy trying to keep this pain at bay until I have gamm knife on may 6th. Anyway, wanted to mention the sodium thing just in case those werenāt things you had thought of yet. I really hope you get some answers from the spinal tap. I took a Xanax right before I went in and it was really no big deal at all. I barely even felt the pressure they said I should feel. Maybe your doc would give you one for beforehand also.
My second incision was in exactly the same spot, but I had stitches instead of staples. I asked the PA about it and she said a different doctor closed me up and it was just personal preference. Hereās the picā¦
Bellalarke said:
340-image.jpg (1.58 MB)Was the second incision in the same place?
Grabbed the wrong photo! Here it is right after I got home
339-image.jpg (1.09 MB)
Oh my god that looks so sore. I am fascinated by these incisions but they also are tough because Iāve had so much pain in that area for so long that it kind of ābleepsā when I lookā¦
I think we are hijacking this discussion so I am going to message you about some of the other stuff. But thanks for the heads up on the Gatorade. I simply put my hands on the well and headed for the next ferry when I left my GPs office. But I will get some. Iāve had fairly regular blood tests done. And two major rounds in early march, so this was a big drop./>
HCal said:
Grabbed the wrong photo! Here it is right after I got home
Yes totally hijacked! Iām AMAZED at your recovery. I could barely do anything at one week. You are like superman or something.
A-M-A-Z-I-N-G !!!! x
I'm so happy you are doing so great!!
You must have the constitution of a race horse!
This is just a great story and very up- lifting.
May it continue.
Just be sure to conserve some energy for your new job (sorry, couldnāt help itā¦the mother in meā¦)