MVD October 18th

24 days. 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!?

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Hello Nanoo48, I had my MVD November 19 2015. I was not a bit afraid because the pain was relentless. I do have to say the night before I woke up and thought I can change my mind. Not sure why I even thought it lol. By the time I was prepped and ready I was begging for them to hurry. I had complete confidence in my doc. There are many different outcomes for everyone.
It’s a vicious cycle of pain panic and fear. I had to stop working due to being in the medical profession and I had no room for error and I finally couldn’t keep up. If your job offers short and long term disability take advantage of it. Take care of yourself. Fear is the unknown. Educate yourself revisit your neurosurgeon and you will make the right choice. I hope this helps and keep us posted. Blessings. K

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I am too in the medical profession I am a cardiac monitor tech for open heart unit. Needless to say being on top of my game has been DIFFICULT. Pain striking me mid sentence at times being looked at funny because I just stop in my tracks. Being so fogged and tired and just feeling drugged up. I have short term disability starting the day before my procedure. I met with the surgeon twice. He seems very confident. He also works in my hospital which is where I’ll be having it done. The NP seemed VERY understanding of my fears, and not really having family around stinks… She gave me her number and told me to call her anytime and I just feel like a chicken ya know? Like I gotta just suck it up. But I’m totally freaked and yet just joking around about it with people. It gives good shock value in a convo LOL. I feel kinda stuck getting it done at my hospital because of insurance purposes. Someone had told me DO NOT LET THIS PLACE CUT INTO YOUR HEAD. And that just rings within me over and over. Meanwhile what I’ve found to read up on this dr he seems qualified. Even teaches about the procedure. He is the only neurosurgeon that specializes in it. So it’s like him or not. My hospital or spend thousands of dollars I don’t have. My short term disability only pays 50% of pay and unfortunately I cannot live on that in good ol NY… So I know I gotta let God on this one. But I’m still scared… And desperate. Makes no sense. I know. But I totally understand that vicious cycle of panic etc…

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Can you tell me how your outcome was? And how your recovery went? Any pointers for an extreme type A, stubborn, I’ll do it myself personality? :flushed:

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I had MVD on sept 8 after 5 years of dealing with TN affecting all three areas of my right side. This past year the pain and efffectiveness of meds had resulted in something needing to happen. I finally found Dr.Day a neurosurgeon at UAMS in Little Rock who said my MRI and symptoms were classic and he felt this was the best solution.
I was terrified to have someone cut a hole in the back of my head and dig around in my brain. I watched a You tube video of someone performing the surgery. I was still freaked out but I knew I couldn’t keep on the way it was going. I was taking 12 tramadol a day along with cymbalta. When I woke up from surgery my eye felt like someone was stabbing me and I just wanted someone to pull my eye out and I thought the surgery didn’t work. I was distraught and came apart But by the time I got to a room from recovery it was not as intense and I began to realise the pain was because of the surgery not still from my TN.

I am home and because any pain I have is alleviated by standard pain meds (oxycodone) that tells me that it’s just surgery pain. I am tired easily and need rest but have been working some from home.

My only issue is that I do feel some stress related discomfort but my doc says it’s my nerve healing and residual in nature in his opinion.

While I have a ways to go to be “healed” I am over the moon excited about where I am now when I didn’t know what my future would hold before. Best of luck and don’t hesitate to ask questions. You can facebook me (Terri Mahan in Arkansas) and then pm
me along the way if you want to. Since I am just ahead of you it might be helpful for both of us.

Again best of luck.

I had my MDV on October 14, 2014. It’s long and detailed. I hope it helps! I am still doing well, even though I do still need low doses of the meds. Prayers that your experience will be as good or better!

My MVD story.pdf (58.9 KB)

@Lynette so how were you feeling after the week 2 did you go right to work after stitches were out?

@Nanooo48 – The pain leading up to my surgery was so horrific and I was on such high doses of medication that I wasn’t able to work at that time. I don’t really remember exactly how I was doing at the 2 week mark. That was when I wrote my MVD story, so I must have been functioning fairly well.

By Thanksgiving, I was well enough to cook a big dinner and resume a relatively normal life. It seems that the fatigue was the worse part, but I think that was more a matter of increasing my stamina due to so many months of little or no activity.

At about the 4 month mark, I had found a full-time job and returned to work. It was still several more months before I felt more myself in terms of strength and stamina… and I am a bit older than you. You may bounce back sooner.

In hindsight, I should have had the surgery sooner. It’s been wonderful to have my life back! Try not to worry. Be strong and have faith that all will be fine. I’m happy to answer any questions you may have.

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Hey Nanooo48. The way I see it. If I did it, anyone could. I still won’t go to the dentist because I’m scared of dentists. You should have seen what it took to get me to go and get the MVD done. But afterwards…so glad I did it. DO NOT go and look at the videos showing you what they do. As I found out, they make it worse than what it is because you get so stressed out worrying about knowing what they MIGHT do to you. Afterwards…you will be sleeping a lot. Hearing weird sounds and music, like I did. hehehe I’m going back to work in a few weeks and I was ready to go back by July actually. My MVD was on May 9th of this year. I was on 2000 mgs a day of tegretol:( But so very happy now…no more pain. Glad I was brave and had it done:) Plus, you get people to wait on you hand and foot;) hehehe Good luck!!

Thanks guys… 19 days. And honestly can’t wait. Not sure what’s happening but I have a call into Neuro. I’m catching a cold or something and last night I think I started getting atipical pain?? Behind my eye in my ear and crazy burning pain on the whole side of my face!!! Was brought to tears with it at work last night so embarrassing! :disappointed: I dono what he’s going to say. And even wth that getting break through pains on top of it! I’m a mess and hardly slept right at all last night. And back to work today. :disappointed::disappointed::disappointed: 19 dayssssss.

Well got a call back he said doesn’t sound like anything common and could be because I’m getting sick but he increased baclofen to 3x a day. :confused:

Sorry for venting before. This can really make you nuts!

I had my MVD way back in 1992. I know the surgery is more advanced and more routine now. I was up to 1200mg/day of Tegretol. Every patient is, of course, different, but for me, it was a piece of cake! Woke up from anesthesia absolutely pain free except for the pain and soreness associated with the surgery. Spent 24 hours in Neuro IC, then to a room for 2 days. I was off Tegretol before I left the hospital and back to work in a week. Someone had to drive me because it took a little time before I could turn my head fully. Was totally pain and meds free for 4 years and the pain returned. Went back on drugs, thinking about another MVD. Around 2004 I went into remission. Why, I don’t know, but, with the exception of a few minor flare-ups, I am still in remission and weaned myself off Tegretol, Neurontin and Baclofen. I hope your MVD goes as smoothly as mine and that it lasts for a very long time.

So I dono about this MVD being a breeze. I spent 24 hrs in Icu then less than that in a normal room. I think I coulda used another day in hospital. I’m feeling pretty miserable recovering. The shocks came back the first night in icu after staff have me a cold pack to use. Bam. And the tears started rolling thinking the nightmare returned. But hasn’t happened since. I’m so grateful. This recovery although has been pretty terrible. I have such crazy pressure pain and heart beat shwooshing in my ear right only. If I exert myself in the slightest bit. Hearing is extremely diminished as well. The swelling in my neck was intense! And still can’t turn my head. I been sleeping a lot on and off. And just trying to keep on top of the pain. And taking the shortest cat naps which are driving me mad. I was really hoping the recovery would be easier than this. I feel I’ve read a lot of false advertising. But then again I do have underlying inflammation issues. Feeling :face_with_head_bandage:

Obviously going through a lot of emotions, it is invasive, give it time and in the mean time think positive. Wishing you well.

P.S. very neat suture job.