What should I expect and be expecting?

My MVD surgery is in 24 days. October 18th :flushed: I’m sooo scared and feel like I shouldn’t be? I’ve never had surgery before. Neurologist is like “you’ll be back to work in a few days” neurosurgeon “you can go back to work as soon as stitches are out” but first appt say “be realistic and think you’ll be out of work for a month” I’m so confused! And now won’t see surgeon until surgery…
I feel like getting my skull cut seems pretty serious. And from what I’m reading fatigue is a major side effect let alone these darn meds!!! I am currently on 1000mg tegretol a day and 20mg baclofen a day and recently started getting pains…
I take caffeine pills like candy and both Drs are aware. I need to be very alert for my job and it’s honestly been hell. I pushed off this surgery for so many reasons fear being one. But now hate it. I get anxiety attacks back especially when the pains come back… I don’t feel like I can handle ANY MORE DRUGS!
Please humor me with this… Has anyone ever had side effects like double vision or dizziness so bad you don’t feel like your gonna be concious for a few seconds? Or like your legs or arms or hands stop working for a second like they give out but you can catch it? Besides all the regular side effects like fatigue, memory issues, constipation? Or is this just me… I feel like this surgery is so close yet so far… I’m 32 female… What should I expect please!? I posted this in surgery category too I think not sure if it worked but I’m desperate for a friend to talk to… Please… The new layout here confuses me so much too sorry.

I was pretty scare when I was told I needed surgery back in 2012. I hate to say it, but I ended up crying a little bit after the appointment because I was so freaked out. I couldn’t help but keep thinking about the scene from Saw III where they have to drill into the old guy’s head to relieve pressure on his brain. I knew that the operation would be nothing like that, but that was all I could think of. Thankfully nothing went wrong; not in the surgery or in my recovery. Really, the worst thing that happened for my 1st surgery was I was really nauseous for the first day or so. I stayed in the hospital for 5 days, and then I got on a plane & left for home. I was pretty nauseous during the taxi ride to the airport, but I was able to walk through the airport to board the plane (I should’ve had a wheelchair, but there weren’t any available).

As for the recovery, I was able to start doing things after 2 weeks, but I had to be careful & take it easy. After 3 or 4 weeks, I was back to full strength & able to left things without feeling like I’d be ripping open the surgery scar behind my left ear (it’s about 4 inches long). As long as your doctor knows what he/she is doing, you shouldn’t have too much pain when they takie out the staples and/or sutures. They’ll probably have to drain some liquid from the area, but as long as you’ve been taking care of it properly & washing it daily, you shouldn’t have too much to deal with.

To clean the surgery site before & after the operation, they’re probably going to prescribe you some special soap/shampoo to use around the site they’ll be cutting in to. Afterwards, you’ll need to wash your hair & head with something other than whatever it is they prescribe. I ended up using Johnson’s Baby Shampoo, mostly because it doesn’t have all the additives the other shampoos had. Wanted something pure & simple so I wouldn’t cause any infections. You’ll want to have specific towels & washcloths set aside for usd on your head & surgery site only. You don’ want a fungus from your foot hitching a ride up to your head & having a party.

Well, I hope this helps you & comforts you. I know I felt pretty lonely when I was getting ready for both of my surgeries (I had an MVD & then a Rhizotomy) & would’ve loved to found this site back then. I don’t say much, but it’s comforting to know that if I ever have complication or question that I have somewhere to turn to that has people experiencing similar issues.

You had an MVD then a Rhizoyomy, are you advocating MVD or was it a failure?

Nanooo might want a little more info, as you sound like you could provide it, besides coping with MVD. Sure, kinda guessing. Can you add to your experiences with surgery x2 ?

Hang on honey,
It takes a month to six weeks to get your energy and cover up your sore scar.
The procedure doesn’t really hurt. But your head and eyebrow can feel a little sore. You cannot wash hair until stitches out usually so no work. You will sleep sleep sleep but you can walk and talk and be normal too.
The anesthesiologist is the person to talk to so tell him or her you have never had surgery before. By the way, have you tried a rhizotomy? Do this first. It might work. Neurosurgeon does them or highly specialize anesthesiologist a at leading medical places. In Cleveland, Samuel SAMs, MD does them at Cleveland Clinic. There is a good neurologist too, Mark Stillman, MD who specializes in TN and Headaches only.

Your Tegretol is causing these symptoms. I am now on 400 Tegretol and all those symptoms left.

You might need a better neurologist. He has you on too high of doses and is misinforming you about the surgery. Many people here can help you find a better neurologist. Tell us your city.

Best wishes for success from your surgery!

Nanoo, I would be sure you have type A TN because the surgery doesn’t help Type 2… The surgery is a horrible experience and I would try as many things as possible before this choice.

@Grecio I am sure what I have since I’ve seen the scans with my own eyes. And have been shown the vessels wrapped around my Trigeminal nerve. Mine is a classic case apparently except for my age. My surgery is scheduled and my pain is not well controlled even with all the meds I’m on and MISERABLE. This isn’t an exploratory MVD it’s a hopeful cure for this hell. You say the MVD is miserable do you speak of experience? And if so WHY do you say that?

@Jean_Marie the Neuro surgeon did not want to do the rhizomety thing (sorry won’t let me look back for the spelling lol) because of my age he thinks this is my best chance at a CURE.

@Nameless thank you… :heart:

It will take a few weeks to feel better. Try some deep breathing when you feel panicky about this op. It helps. I have loads of side effects from meds too. Also caffeine pills!! There is a thought that caffeine exites the trigeminal nerve and can cause more pain. Anyway, I hope the op goes well and you are pain free.

Nanoo, I don’t want to discourage you but that surgery is 4 days of severe pain in the hospital and then 1-2 months of recuperation. My wife had it done at Shands in Gainsville, Fl… The surgery didn’t help. The surgeon said afterwards that it was probably a misdiagnosis. However, if the doctor can actually see the vessels wrapped on some kind of MRI, then the MVD might help. After MVD my wife has had Gamma knife which also didn’t help. She has had numerous needles in the face as well as radiofrequency stimulation and none of that helped. She had a PNS installed last year and that hasn’t helped. Recently she peripheral nurectomy where an oral surgeon goes in the mouth and cuts the trigeminal nerve. That has helped about 30% maybe. She takes a ton of tranquilizers as well as a lot of narcotics. Nothing really helps including Lyrica. She seems to have type 2 and you have type 1. She has suffered for 7 yeras. It started out as a tooth ache. We pulled a tooth before we realized it wasn’t a tooth problem. She hurts around the nerves of three teeth top and bottom only on the left side.