Well, I had an MVD (which was actually an internal neurolysis) a week ago today. The recovery has been good by all accounts, and aside from the expected facial numbness and general soreness, there’s no side effects or complications. So yay!
However, last night, I noticed what could be the beginning of a minor infection, so I followed orders and headed off to a local ER where they took care of me. Part of their prcoess was perform a CAT scan and make sure any infection hadn’t spread internally… good news! It hadn’t…
There are multiple (two main ones) sub aracnoid haemmorages (no longer actively bleeding) now in there, and I would not have know about them at all had I not had a CAT scan done.
The local hospital called the on call Neuro guy at OHSU (where I had the procedure) and they reckon that it’s “normal”, but I have to call them myself today to discuss it.
I’m leaning toward it being internal bruising of the brain that happened during the procedure (after all, it’s been a week an I do feel better everyday), but I’ve read about SAH and none of the reading is good… indeed theres only been a few cases of MVD that ended up with and SAH, and certainly not multiple.
I’m trying too stay positive here, but shpuld I be demanding more than a cursory “you’ll be fine”? It’s frankly scaring me half to death…
Edit: after talking with my surgeons today, they told med they have no clue. In faction somewhat of a medical curiosity at this point. They tell me not to worry, and brought my initial post op up to the 16th this month… I giess if theyre not concerned, should be? I’m not sure I can quote get over the fact that I essentially discovered by accident something fairly major…
wow,that has to be scary.I am guessing-hoping- a moderator comes on and shares what they have found out over the years.
I am so thankful for the gabapentin because it makes me forget things fast.
I say-keep positive,breathe deep and do everything you can to give your body a chance to heal.
Wishing you wellness
Well here’s a quick update…
Went to my first Post-Op exam a week ago, and as it turns out, the “hemorrhages” were actually a false positive… It was just blood from the procedure that had worked it’s way up and around the brain and settled in the gaps in the cortex.
By all accounts, it looks like a stroke on a CAT scan, but it was benign. It’s just rare for anyone who just had the procedure done to get a CAT scan, so it wasn’t expected
That’s a whole lot of weight off my shoulders for sure.
And I’m apparently well and truly on the mend, and no need for any additional post-ops… Next step is to get my FAA medical back in 2 months, then finally get back to work
I am so happy for you and if I am ever in a plane I hope to have you as my pilot.(I think you are the pilot guy,but my brain is mush)Look for the toothless old lady.
Wow.That would be scary. Glad you did so well.overall though. Can you tell me more about the numbness. Exactly where it is, etc. OHSU has recommended MVD (3rd one) but this time with internal neurolysis and I am scared to death about the numbness. I have an almost constant drippy left nostril because my V1 is mostly affected with eye pain and that dang runny nose. I would hate to be walking around somewhere with a drippy nose and not know it because I couldn’t feel it. Hope you continue to do well and pass your FAA medical. Don’t overdo while healing.
Thanks for any helping info.
The numbness isn’t too terrible, and apparently feeling will return slowly (not to full strength, but mostly). In my case, immediately after surgery, the entire right side of my face, forehead and behind my ear was numb (including my eye, tongue and teeth). Almost two months on, there’s a couple of patches that are still 100% numb, but it is coming back slowly. Most of it returns quickly, but it was explained to me in my post op thatf any areas that are still numb after 6 weeks or so will taked about 6 months to return to normal as those areas need to reprogram themselves to use different nerve fibers.
The weirdest part was the tongue and teeth… it makes chewing a little difficult on that side as you really can’t feel anything at all. I caught myself chewing my lip and tongue a little from time to time, though thankfully not severely. I also have certain words that sound a little different to normal now, but it’s not so bad you can’t understand me… it’s more I just can tell it’s slightly different.
I have had moments in restaurants where I have stuff dangling from my lip and don’t realise it, but I quickly adopted the habit of wiping my chin just to be sure .
Honestly, I would take this over the pain any day. It’s different, and it’s a tiny bit disruptive, but the numbness isn’t preventing me from doing anything I did before; indeed it’s helping me resume things I had to give up, so I’m willing to accept it
If you do decide to go ahead, good luck! Just be ready to adopt some new habits to cover the numbness… in your case, keep those tissues handy and just keep wiping anyway
Thank you for the information. It’s very reassuring. For now surgery is going to be on hold. Pain management just started me on a new med that’s usually used for Alzheimer’s, it’s an NMDA inhibitor (as is Ketamine) and much to my surprise, my pain has lessened and I have not had any side effects (yet). But it’s nice to know that the IN option is still there and it won’t be as horrible as I imagined.
Hope you are continuing to progress in healing and remain pain free. Please keep me posted on how you are doing. Have a very pleasant weekend!