Anxious about surgery

General
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NSE[quote=“debram, post:1, topic:9989, full:true”]

Hello everyone;

I am new to this site, and this is my first post. I live in a small NW town and am being sent to Winnipeg for MVD surgery on May 23. This is a 6 hour drive from where I live. I have had TN for many years, but it was mis-diagnosed. Since August of this year, the pain has been excrutiating, and not letting up. I am on meds, (Carbamazipine and Baclofen) which has offered some relief, but have break through pain I find hard to deal with. I had a MRI which has confirmed a vascular loop.

Because of the long distance I am coming from, I will see the neurosurgeon on Tuesday, and my surgery will be Wednesday morning. I would like to know if there is anything I can bring with me to make the long car ride home more comfortable. I have been told I would only have a one night stay in hospital, one night stay in Winnipeg, and then home on the third day. I have severe cervical stenosis and I am concerned about my neck being "held" in one position during the operation. Does anyone know if a cervical collar would be of benefit for the ride home? Or is this not a good idea....Is there anything else someone can think I should have for this ride...our highways are not "rider friendly" at the best of times, and I am having some concerns about riding these highways after a brain operation. What do you think?

Thanks for any replies,

Deb

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Hello everyone - I’m new to this site in terms of posting. I am scheduled for MVD surgery on 11/30/16. I have been reading the post surgery blogs here and I am now reconsidering my decision. I was diagnosed about three years ago, first with numbness on right side which lasted about three months. That gone, the shocks were periodic and light. Not something I couldn’t handle. In September, the shocks/pain progressed and by October it was daily while I was awake. I took 400 mg. Gabapentin which made me sleepy, so was sleeping all afternoon. It would settle down for a bit when I awoke, enough time to eat. I don’t have to tell you about the unbearable pain, but that had me crying, which I don’t normally do. My pain threshold is pretty good, having had rheumatoid arthritis for 44 years. I also have pulmonary fibrosis, secondary to the arthritis. I have type 2 diabetes as well😱. My anxiety is growing daily regarding the surgery, especially after reading the issues with post surgery. Right now I am pain free due to 400 mg. tegretol, but wondering how long that will last. Wondering whether to postpone surgery until tegretol stops working. Something else, I had a “twing” on my other side this morning! What now? So many health issues that can retard the healing process! Met with the anesthesiologist and trying to get all my docs to send medical records to see if it’s a go. What do you all think. Just needing to vent with some that have been there. Thanks. Gloriannax

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If Tegretol is giving you relief from pain you should tell the neurosurgeon he will postpone the surgery until medication stops working. Surgery should be the last option unless medicine has adverse side effects.
I am on tegretol & gabapentin since 1974 it works well. I also get spontaneous remission from pain during which I stop taking tablets.

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Hi,
I have a couple of thoughts for you. I have bilateral ATN with constant pain and pressure that moved from (mostly) the 1st branch to the third branch after 12 years, just after 1.5 years of controlled pain in that 1st branch. It was always much worse on the right side so I had MVD surgery on the right last year on 10/29/15. I was lucky enough to go to Mayo in Rochester,MN, which I recommend highly. They do so many of these that I felt a little like a burger on a conveyer belt- they weren’t warm and cozy, like they are with cancer patients - but they are really good at what they do. My surgery was a breeze (compared to what I’ve read here) and I have a lovely small scar that never showed any sign of bruising or infection. I went there all the way from AK because they are supposed to be the best.
As soon as I realized that ATN is supposed to be a “progressive” condition, where the nerve continues to get worse, I figured a more aggressive approach was better asap, but I’ve always been wary of any of the methods that kill or numb the nerve. MVD does neither! They will go in, cut and cauterize any veins that are compacting or growing into the nerve, and then move any arteries out of the way- securing them with teflon-felt pads so that they won’t touch the nerve. I had an artery spiraling around the nerve that DID NOT SHOW UP ON MY MRA. Luckily, it looked compacted enough and I somehow convinced them that I was ready for any consequences, just for a tiny chance that this would help. Boy, did it help. Unfortunately, all my friends, my family, my ex-partner (who couldn’t handle life with someone who has chronic pain), and my regular MD had forgotten that I would still have constant pain on my left and were quite frustrated or confused about why I wasn’t “fixed.” Still, it’s much better. I’ve tapered down considerably on my opioids and am mostly using gabapentin, a little diazepam, and a tiny dose (HATE the side effects) of tegretol to control the constant pain in my jaw and teeth on the left.
That being said, you are right to reconsider, or at least to consider strongly, whether this extremely intrusive surgery is right for you. It totally worked for me but I do feel a little different. I’m not as quick as I was with numbers. I forget things more easily. It’s hard to know exactly how much is the Tegretol side effects- but I went off of it for about a month and still noticed that I’m just slightly slower than I was before the surgery. However for me, if this is the worst side effect from the surgery and it worked, I’ll take it! I know those little veins and arteries can grow or move again so I’m just crossing my fingers that this will last as long as possible, and by the time it becomes ineffective, there will be a new procedure.
As for your ride home, I was driven from just Minneapolis to Madison (3-4 hours?), on the day I got out. I had my ice pack, which helped enormously for weeks afterwards; comfy clothes, and water. We stopped anytime I needed a stretch. I was ok when we got to Madison and all thru that evening. However, the next day I was in excruciating pain and my (now ex-) partner and my sister were very scared. I kept waking up to them standing anxiously at the end of our floor mattress, looking at me, and whispering anxiously about what to do. It was kinda funny in retrospect, but not fun while it was all happening.

My point is that after you get out, each 24 hour period makes a pretty big difference. If there’s any way you can afford a hotel or motel for one or two nights in Winnipeg after you get out of the hospital, I’d recommend it highly. Then once you feel a little less fragile, you could travel those 6 hours in a car. Especially considering you have neck and other health issues on top of this, I would be very careful about when you travel or you will be in for some terrible pain and at least one day where you will need a lot of help.

Also, could you go to Mayo? From what I’ve experienced and seen on this site, they truly are the best. I guess it depends on your insurance, but check it out at least. I thought I would need all sorts of references or something special to go there, but all I did initially was call them and they made me an appointment right away based on my symptoms and that I had been diagnosed by a neurologist. They work with people from out of state and/or the country regularly so they made me an appointment to see a neurologist one day (who didn’t think the Neurosurgeon would do the MVD procedure because they couldn’t tell how compressed the nerve was on the MRA) and the Neurosurgeon the next (who also wasn’t sure about it until we took another look at my MRA together and he used the word “sandwiched,” in reference to the nerve. All I said was, “sandwiched??” and he took a second look). You might have to really be sure and advocate for yourself there though; they only like to do MVD procedures if they are 80-100% sure that it will help. After 15 years of constant pain on both sides in branches 1 and then 3, I was happy with a 2% chance!! Also, if you can bring someone who DOES support you, that can be extremely helpful as well. Finally, if you go to Mayo (or anywhere for this, really) be SURE to bring a copy of your MRA and the report in your hands- do NOT count on your Neurologist to send it to Mayo. They have so many patients that it will get lost and they won’t spend the time to look for it and you will not get the procedure done.

I think that’s all. I hope this info helps you in any way. Good luck! Let us know how it goes if you have MVD done. Lots of people will benefit from your experience!

~Christy