I had MVD on 10/27/14, so less than 2 weeks ago. I spent 3 days in the hospital. My neurosurgeon took me off of all meds (including Lyrica, which I had been on 450mg for 3 months). It was an oversight on his part and I went through major horrible withdrawels 2 days ago. I thought I was dieing. I’m back on Lyrica for a few more weeks and will wean off. I had a vein entangled in the 5th cranial nerve, so the surgery was more involved than first thought. I have no hearing in my left ear and some facial paralysis on my left side. I was not expecting that at all. My ear still hurts really bad, but it isn’t the deep stabbing pain it use to be (Geniculate Neuralgia). Overall, I feel horrible. I have very little energy to do anything. I feel lightheded, achy, and the pain in my ear is pretty bad. Does everyone else have pain after MVD surgery in the ear that was bothering them before surgery? Has anyone else lost hearing in that ear? How long should I expect to be like this? This doctor said my hearing should come back in 3 months. I’m wondering how long I will have this overall yucky feeling, and exhaustion. I’m otherwise a healthy 38 year old, so this is really new and depressing to me. Any suggestions or advice is welcomed. I’d just like to know how long to expect this to continue, especially the pain in my ear…I need to get back to work and it is getting tougher to stay positive.
Hello Danielle
I had a lot of problems with ear, but it was due to the swelling and the liquid that they wash round the brain during the op was still trapped in there and stuck until the swelling reduced, it took a couple of months to get better. I know hearing loss is a problem with this op but hey know if they hit the hearing nerve during the operation. I felt rubbish and I am same age as you too. You just have to take it easy. Not a nice op but i hope it helps you.
Take care
Nat
Nat,
Did your ear hurt as bad after surgery as before (or close). I’m laying here in tears, in pain and just frustrated because I didn’t think I should still be having so much ear pain afterwards.
Thank you for your response. It really helps to hear others experience. It is helping me in so many ways.
XOXO,
Danielle
I will throw my 2 cents worth into this ring. I had my MVD in September 2013 and had ice picks stabbing in my ear while in Hospital. This still continues to plague me though it is not as constant. I think this is a new way for my Tn to torture me. I have had my inner ear checked numerous times thinking I had an ear infection but each time I am told my ears were clear. I am still having pain in my face; the same triggers with a few new ones thrown in for good measure.
As far as your feeling exhausted and yucky, that is normal. You must give yourself time to recover. Lots of time. Eat healthy, lots of rest and be patient. The reality of this surgery is that recovery takes time and for some of us it takes more time than others. Just as Tn affects each of us differently, so our recovery will vary.
Keep us posted. We are all in this together.
Thank you Patty. I had to call the NS on call at the hospital I had surgery and add back Carbatrol to the mix of meds I was already taken off of…too abruptly I am almost 100% sure. My NS even stopped Lyrica all at once when I was on 450mg for months. I went through crazy withdrawels 3 days ago and I know that set my recovery back a few days. I called the next morning and was put right back on the Lyrica for a few more weeks and then will wean off. Now my nerve pain is consistantly getting worse, waaayyy worse. Worse than the pain EVER was before surgery. So I decided to add back a Oxy here and a Ibuprofen there, until I had taken a lot of opiates and Advil.
I sat and thought what in the world is going on. I don’t know why I didn’t think of it sooner, but I decided I have a bag full of prescriptions that I was taking and now am not…there has to be something in here that will help…but what? Well, I eventually realized I could call the NS on call after hours and ask what to take. He put me back on Carbetrol. So, here I am advocating for myself agian, realizing that my doctor needs to reevaluate my meds and put me back on whatever is necessary to get the pain manangable.
I want only one thing more than being med free- and that is being pain free. I will be calling him Mon to get it straightened out. I trust my doctor and know he is trying to help my digestive system and my body by reducing the meds, but I know my body more and realize that I need them, still. My face is even getting droopier (more paralysis) by the day…that is supposed to be getting better, not worse. Something is just not right. I’ll keep you all posted. I am interested in everyone’s journey. Reading everyone else’s experience is what led me to self diagnose myself with GN and make it this far.
We are all in this together. I just wish I wouldn’t have stopped advocating for myself, but I “figured it out”, as we say in the South (US).
Take care and thank you for your input!
Best Wishes,
Danielle
Hello Danielle,
I feel awful for you. I didn't have too much pain in my ear until after the surgery. Some Doctors don't realise how bad you can feel coming off any medication, if it is not tapered properly it can cause nasty side effects. The doctor put me on some anti motion sickness drug after the op to try and stop that swirling feeling, they gave me more to take when i left hospital. They gave me no advice about them. 2 weeks after i had used them all and stopped taking it, I was very ill, severe vomiting severe migraine, i though something was wrong after the operation, had to go back for ct scan, they said everything looked ok. My boyfriend and I realised it was withdrawal off the anti motion sickness drug so bought lower strength over the counter and tapered it down. No doctor realised what was going on. I could go on and on about my experience with doctors. Trying to cope with the pain is best so you can cope better and have more strength to recover from the operation. You know your body and hopefully you can get off the meds when everything settles. Best wishes Nat xx
Hi Danielle,
I had MVD in July 2014 and have had ear problems as my recovery continues. I've gotten used to some of the ear pain problems however the one that drives me crazy is what I can only describe as helicopter ear. When a helicopter flies low and you can feel the thud and pressure in your body. That is how my ear feels many times. The sound and feeling actually becomes painful at times. Before MVD I would have some ear pain problems but nothing to this degree. I haven't brought this up with my doctor so I'm not sure what is causing it or if it will eventually go away.
Stay strong! We can do this!
Jeanie
Wow Jeanie, that sounds extremely annoying. It sounds like perhaps a form of tennitus? I have developed tennitus since surgery. I have a buzzing in my ear everytime I speak or if something vibrates loudly near me.
I went to my ENT today. My NS told me my hearing would come back on its own in 3 months, along with my facial paralysis. My ENT does not agree. He specializes in the nerves of the ear as well. I had a hearing test done before my surgery and one today. I have no hearing in my left ear and have no high frequency in my right. He recommended getting as much steroids in my inner ear to eventually get it pushed all the way to the trigeminal nerve, to give me any shot at having hearing. I had my first one today and will have another tomorrow. Sounds great right? Nope. To do this required him to put Phenol on my ear drum to burn a hole in it so he could give me a steroid shot into my middle ear. IT HURT SO MUCH! And I have to have many of them.
Ugh, every day there has been a new hurdle for me. Today is the 14th day after surgery. I have had non-stop issues post-op. I need to get my pain under control so that these other things aren’t so much to handle. I should have answers tomorrow for a new pain management plan or will be seeing a pain management doctor. I refuse to live post-op with this pain, just to have permanent hearing loss as a result of MVD surgery. Bleh!
Thanks for responding. I think I’m in a low percentage of people with hearing loss. I haven’t found anyone else. Maybe that means it will come back!
I’m still staying positive. It’s not easy, though.
Best Wishes,
Danielle
Jeanie said:
Hi Danielle,
I had MVD in July 2014 and have had ear problems as my recovery continues. I’ve gotten used to some of the ear pain problems however the one that drives me crazy is what I can only describe as helicopter ear. When a helicopter flies low and you can feel the thud and pressure in your body. That is how my ear feels many times. The sound and feeling actually becomes painful at times. Before MVD I would have some ear pain problems but nothing to this degree. I haven’t brought this up with my doctor so I’m not sure what is causing it or if it will eventually go away.
Stay strong! We can do this!
Jeanie
It’s been 3 months now and I still do not have hearing and still have intermittent ear pain. I am trying to find out more info on csf in the ear that may cause hearing loss, but am having a difficult time finding info on that. Any suggestions?
Thank you!
Hello
I had hearing loss for about 3 months, I had so much swelling internally behind the ear and the the fluid that they wash round whilst doing the op got stuck in there and until the swelling reduced it was trapped an this is what was causing the loss. Not much i could so really until it reduced. I just used antibiotic/ anti inflammatory ear drops.
Cheers
Natalie
Thank you Natalie! I will see about getting antiinflammatory ear drops.
XOXO
Danielle
Wow. It does get slowly better. I have perminant hearing loss also a similar experience I am still dealing with complications. Take it slow. Your on disability so the bills hopefully will be taken care of. I don’t think you should try and push recovery. Remember your surgery was complicated this means the right nerve might of been scared and the cerebellum a bit “beat up” call the doctor for a follow up. Try and ascertain the situation with the 8th nerve and other concerns. I rushed going back to work and I now regret it. This is a major procedure
Stay well
Ed
Hello Im Nicole in VT and just had my surgery two weeks ago. No hearing loss. They put these probes all over my head. Cemented the things into my head and it was just awful but they said they had to do it in order to be sure I wouldn't lose my hearing during the surgery. I ended up having to cut chunks of my hair out to get the goo out afterwords but I guess it couldn't be helped. Anyway no hearing loss however I am totally numb on the right side of my head including my eye, lips, tongue and throat. Scared and glad to have found this blog. ■■■■■■■■■■■■■■■■■■■■■■■■
Hello I would really like to know how you are doing now? Nicole in VT I just had my surgery two weeks ago and totally numb and scared. TY!
I am curious to know how you are doing? I have atn and geniculate neuralgia. I had mvd over a month ago but I'm not feeling any better yet.
Oh Hi Jeanie Has your ear problem go away