Some additional things you may want to know about MVD

General General TN & GPN (Old Site)
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Whilst my MVD is still fresh in my mind, I thought I would post some additional info for anyone who is considering MVD, these are drawn purely from my own experience but things I wasn’t really aware of:-

Yes of course there is surgical pain but the pain I had in other places i.e. forehead and back of the head and neck really surprised me, I found the pain much more severe than the surgical pain site, each day post Op the pain improves, now 1 week on, only taking pain meds to assist sleep.

Pain in lower back and thighs can also be expected, for me this came on day 3 and lasted 2 - 3 days.

Swelling and bruising in other places, I woke up after the MVD with a really swollen lip and bruising across my forehead and down my neck on my right side (MVD was on the left). This is to do with the breathing tube and head clamp which is used throughout surgery. I also had a number of bloody fresh scabs in my head (around 6) where the head clamp fixture points were.

Nausea, whilst this I expected, the first two days, I was sick every time I moved, fortunately anti sickness meds will help.

Dizziness and balance issues, whilst I was warned of this the severity surprised me, whilst the dizziness is much improved, I still cannot walk in a straight line 1 week on.

Difficulty sleeping - I have struggled with this purely because I generally sleep on the same side as the MVD.

Slowness - I was very slow in all movement and speech, as with the pain this has improved with each day and 1 week in my responses are almost back to normal.

Hearing sensation - On day 4 I started getting a blowing wind sound in my ear where I had the MVD, this comes intermittently and I understand can last many weeks post Op.

Tingling across the whole left side of my head, this I expected but it’s quite an odd sensation when it’s in in the head.

The statistics in the UK for post op issues and in particular fluid leak are around 1:30, so I have been monitoring for any yellow discharge which can come from the nose, ear &/or surgical site, happy to report none experienced to-date. It was really stressed to me the importance of going straight back to hospital immediately if this is experienced.

It takes 6 weeks for the brain to re-balance post MVD, knowing this reassures me that my symptoms above won’t last forever!

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Wow, very different than mine - but some similar.

I thought CFS leak was clear fluid - but I wasn't sure. That was a big fear of mine - didn't happen - BUT a handful of people were NOT aware of this on these boards, and let it go on for weeeeks!

Thanks for the reminder.

I basically stayed in bed for 3 weeks - afraid and too spent to do anything but sleep!

I also had the extra stress and fatigue of traveling a few states over.

Mine is all a fuzzy memory now - but it's posted on here somewhere!

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Thanks for you thoughtfulness, Quickie. I hope all the scabs and tingling and ear sensations heal well and soon. You certainly demonstrate great clarity of thought!
Peace and happiness
Bellalarke

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Hi Quickie,

I experienced alot of symptoms you list, also I had bleeding from both ears. It freaked the surgeons out because they only expected kt from left ear. I kept saying worse on the right di not believe me until they saw it for themselves. They locked the head of my bed in upright position for a few days also. I did have muffling noises in my ears too. Alot of nausea but gave me Zofran. Very little pain med, that was rough because I have chrinic back oain from 8 surgeries I have had, and brachial plexus decompression surgery. But its okay made it thru. I read Alot of you had sutures or staples. Not me , glue. Incision was quite largefrom temole to base of skull. I looked like a smurf, my docs laughed. So did I. Was in hospital 6 days. Came home still with symptoms but not as bad except nausea and cognitive issues. Could not pronounce alot of words. That was scary. My daughter is reading specialist for special ed. She really helped me. Was on a second round if decadron, I did nkt like this steroid 10x stronger than prednisone, its for brain swelling. At least I know what I can prepare myself for second MVD on other side. With all this do it in a snap, no hesitation. Still making lots of typos too, irritates me
My Best

Joanne

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I’m two weeks in post op from a MVD surgery. Recovery has been difficult so far. Following the surgery I was really dizzy, nauseous, in a lot of pain requiring dilaudid and break through pain meds every two hours round the clock day 1. Day 2 still nauseous but pain and dizziness were better under control. I had no idea they had clamped my head for the surgery and woke up with a huge bump and bruise on my forehead and a tensor around my head. They had wraps around my legs that were pumping my blood back up towards my head to prevent me from developing blood clots. I had my own nurse looking after me round the clock for two days. They really didn’t shave off my hair, completely vain but I relieved! I was kept in hospital 3 days due to the pain I was having. But, each day it has been improving and now 2 weeks in I am only on extra strength tylennol. I’m still having vertigo, a horrible headache when I first get out of bed, and easily fatigued. I’m usually a type A personality and right now I just have to let everything go because I just can’t do it. The exhaustion is unlike anything i’ve experienced before, similar to recovering from a severe concussion but worse.I can see they recommend taking off 6 weeks! My hearing has been a bit muffled too and some numbness in the face. However, I have had no electric shock pains. I am still taking gabepentin and didn’t want to start weaning myself off until I was over the withdrawel of the pain killers. My nerve was actually dented from the artery constantly rubbing against it. My Neurosurgeon told me it could take up to a year for it to completely heal and there could be numbness and some pain while it’s on the mend. It really has helped to read others posts while recovering from this and to realize what I’m going through is a completely normal part of the recovery. I was concerned I might have a CSF leak but am just being extra careful to rest to avoid this from happening. Walking has helped a lot in the recovery and in reducing the dizziness. I wanted to share to help others going through the same Surgery or those thinking about getting one. It’s been a huge relief to realize the surgery has helped with the TN pain I was having. All the best to everyone reading this forum. My Neurosurgeon, Dr. Honey, has a very informative site on the procedure and post op recommendations on what type of work to avoid post surgery to avoid complications . I think it’s www.dr.honey.org

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Thanks MH for your response and for sharing your experience. Wishing you a full and speedy recovery.

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Hello How are you feeling now wanna know more if you can share Thank you