The shark went straight for the neck!
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
Interesting how all of our incisions are at different angles. Mine goes almost straight up and down behind my ear.
Yeah, I can see that now. Being on this site the last couple of months and then especially watching so closely and with such personal intensity the MVDs happening this week has been a real eye opener. Thanks so much for all you’re so willing to share. My neurologist was really excited by what she too and sure didn’t appreciate interference from the other pain doc.
Not surprising you have some disturbance around that ear. Great no deafness.
Hey Shindig, here’s my battle scar…Mimi xx
Ps. I also have the ear fullness…
342-image.jpg (46.5 KB)
Nobody seemed to notice the giant blood vessel on my nerve in my MRI either, even the surgeon who operated on me never said anything about seeing it in the MRI! When I went to the team of face pain specialists in the med center yesterday the neurologist, neurosurgeon and radiation oncologist all pointed the giant blood vessel out to us independently! They even took the time to show us exactly where it was on my MRI. It all depends on having someone really good read your MRI!
Me too Shindig!
TN pain was intense everyday, all day…not a whisper so far of TN pain!
One day at a time…my neck is sore and various parts of my head too, the ear fullness is driving me batty.
Take it easy!
Mimi xx : )
I still have the ear fullness every once in awhile at 8 weeks but its almost completely gone. It does fade.
I think that is unusual to have your staples out so soon --- a surgeon doesn't have to remove them --- I had a nurse do it at the local clinic....It was the 4th or 6th week..... do you have magic staples? Many have also said much longer to keep.
My surgeon said 7-10 days for staple removal…
Thats pretty funny right there! I'm sure if anything larger opening woudl provide better Visualization/ access, so since you weren’t concerned about appearance maybe thats why he went big!
shindig said:
I expected the procedure to be much worse than it was. I did ask the surgeon to make sure I got a cool scar out of the deal lol so maybe that's why.
I think my staples came out at 2 weeks. I think my stitches came out at about the same time. I had a staple in my forehead from where they screwed me in and I started gushing blood everywhere. They yanked that out at 2 days to avoid a big scar on my forehead. The nurse didn’t have the proper staple removing utensil so she just tanked it out with hemostats or something. It hurt like holy hell. I didn’t know they had special staple removing tools so I thought they were all going to hurt like that. They just felt like mosquito bites really. Where they cut me mostly there wasn’t a lot of innervation in the tissue so not a lot of pain. When I woke up with a staple in my forehead in nearly the same spot again the second time, I made sure they used the staple pulling tool. Didn’t hurt at all and that was the day after. Of course, the surgery incision takes longer to heal, but I would think they wouldn’t pull them if they weren’t comfortable it would heal ok. You don’t need a doctor to do it at all though. My docs PA, pulled mine from the actual surgery site. I’ve had medical assistants that didn’t even go to nursing school pull stitches and staples from other wounds in the past, but that wasn’t brain surgery.
I only had 11 staples and I thought that was a lot!! I was I’ll prepared for the size of my incision. My surgeon told me how big the hole in my skull would be but failed to mention the 11 staples part.
Shindig SuperScar
I am trying to visualize what went on in there…
Jesus Christ that is the biggest MVD incision I have ever seen! If your pain is gone and it isn’t bothering you though I would take the big incision no problems either!
They gave me option
1 bedpan or
2 cath...... ewww
I chose 1........ however since I was so weak from laying around for weeks on end pre-op
it was hard to lift on and off bedpan -- but the thought of a cath made me have extra strength LOL --- I'm glad they gave a choice!
I could not look at your MVD picture -- I am too ewwww for stuff like that --- I didn't even look at the back of my head till right before staples came out in 3-4 weeks!
Yeah first mvd I had no idea about the catheter. I was SOOOO out of it from whatever they were giving me it wasn’t until I woke up the next morning in icu I looked at my mom and was like “I haven’t gotten up to pee in like a REALLY long time. I think something might be wrong.” That’s when I found out about the catheter. I just thought that was one of my 500 tubes rubbing against my leg. After the pulled it I kind of wanted it back bc they made such a huge deal about me not getting up to go pee by myself since I was a fall risk. I did it anyway, but whenever they caught me they put the alarm on my bed so iti alerted them when I got up. It didn’t seem like they were as bad about it the second time, but my mom stayed the night with me the second time.
Also yours has a big curve. I didn’t have surgery at a teaching hospital so nobody was learning from me. Maybe they wanted everyone to have a good view of all of your structures?
So glad you are doing well! When my husband got his leg got all torn up from a spider bite and the three surgeries needed to fix it the surgeons said his leg had “manly scars” and I think that must be the same kind of scars that you’ve got too! Take care the fish are waiting!
Of your neck muscles continue to stay sore ask your doc for physical therapy. It speeds that healing up sooo much. So far you sound like you are doing great. I don’t handle anesthesia well so anytime I’m put under I feel like crap for at least a month. Maybe I’m allergic to something they use or something. I never bounce back well like you are doing. I’m jealous!!