I am 3 weeks post MVD and have complete numbness in the side of my face that used to have pain. It feels like my face is full of cotton wool and while it feels heavy and distorted it is moving normally and doesn't 'look' any different.
I wondered if there was someone out there who had numbness after their MVD which past as they healed. I keep being told it is very early days and that there's lots of swelling and inflammation that needs to heal but I'm scared that I'm left with this new unbearable sensation/feeling.
My MVD was complicated because I was rushed to ITU and needed ventilating for 12 days. So I AM 3 weeks post MVD but I had a short emergency in the middle of my initial recovery!
I really hope someone could help me calm my mind about this numbness as I feel like all I'm doing is stressing, which won't help my recovery.
You say unbearable - do you have pain with it? Or is it just too weird? Somebody will come on here and relate - I just wanted to tell you that after MVD - things like my hearing in my left ear - was diminished - now back to normal.
Don't stress - because whatever happened - stress causes your muscles and nerves to be tight, even though you can't feel them, you should relax if you can, - most faces do not even get re-evaluated for a year - because it takes so long to get everything to settle I believe
I had a MVD in Sept 2010. I had numbness and headaches for a long time but, I don’t remember exactly how long. I know around the incision site was numb the longest!! The surgeon told me give it 3 months and whatever u have will always be there. Unfortunately I had PAIN back in my teeth and nose by the 10th day postop…And that is what I have still!! My eye pain did decrease somewhat for longer but, eventually that was back also. It was my lowest point since my diagnosis. Since then I have had a peripheral nerve stimulator placed and got on a very good med regime so my pain control is the best it has ever been. I hate to give negative reports because I know the MVD has worked for lots of people but, since you were asking I thought I would share!! I pray you have a quick recovery from now on out and are left with NO PAIN!!
The numbness feels like it is heavy and dragging. Apparently my face is moving 'normally' but I couldn't tell you that without a mirror because it is so numb. It has started vibrating when I talk...which is a really painful sensation and obviously making me reluctant to talk! Not wonderful when you have a 6 year old little boy who doesn't stop talking to you!
Despite this vibration when I talk I still have the same level of numbness and still can't chew anything because I have no feeling in one side of my mouth. My teeth feel sensitive so I'm using a toothpaste to try and help with that, but again its just a cold kind of feeling.
If there is anyone who can relate it would be wonderful. I'm being reassured that the nerve was pulled around a lot in surgery that it will take time for that to heal and obviously, being only 4 weeks post surgery not, there is still a lot of swelling. I just wondered if other people had facial numbness that disappeared over time and I have been told that I need a lot of patience because it could take months. I can only hope and wait....and that is really hard.
Anything anyone can share would be so helpful...thank you
I had my MVD in September of 2011. I know when I woke up, that the entire right side of my face was numb. The first to leave and gain back sensation was the right side of my forehead, and then under my eye and now some of my cheek. Also, my mouth went numb with pain and SOME of that sensation came back.
I had the cotton stuffed in the ear feeling. Actually, it felt like someone shoved an entire bag of cotton down my ear into my face. If you aren't doing it, start to open your mouth as wide as you can, and then close it very often. That sensation could be the muscles starting to give. I had several serious complications with my MVD, but doing this exercise with the speech therapist did get rid of that cotton ear feeling. I want to say I had that for two months, but I could be mistaken. Sometimes, people also sounded like robots to me when they talked. That was fun- not LOL.
Despite the pain you are living with now and the impact it is having on your 'life' you have given me hope that something may change and that each morning I wake up I just might feel something other than this numbness. I will keep using those muscles....I'm waiting another appointment with the speech therapist as they have to decide when I can have anything other than mashed food after having a tracheostomy in ICU. I assume they will help me keep my face/mouth moving.
I can only hope that gradually sensation returns and I can feel something other than the discomfort I feel now.
I cannot have gone through the last month for nothing. I fought so hard to get off the ventilator in ICU because I wanted to live. I hope life gets a little easier...for us all.
Thank you for your reply and I truly hope your pain can be helped in some way...and soon.
Hi Nikki, After my MVD my entire left side of face went numb in ICU right after they gave me the brain swelling med. I thought I had a stroke at the time. I was very upset because I wasn't told this could happen. He said the nerve was manipulated quite a bit and it would take time to see if the feeling comes back. I was told that it usually does. Even the left side of my tongue was numb and it effected my taste. All the feeling came back completely. At six weeks when I went back to work, only the eyelid was numb. As the feeling was coming back I would get little squiggly feelings under the skin. This was not pain but odd feelings. That has all went away. I had the surgery in May 2009. Good luck and take it easy. Three weeks after surgery is not a long time. You need your rest.
I am so very sorry for your complications. My MVD caused a stroke, foreign accent syndrome ( I sound austrailian or british instead of American English now), dymetria ( a permanent coordination problem) and a host of other severe problems; mainly the pain. BUT I can tell you that the cotton feeling does go away. When I complained to my neurologist about it, he told me that the vestibular nerve was the last to recover. When I told my speech therapist, he started me on movement practices for those muscles. They truly did recover. Part of my ear canal is still numb but waking up every day; I am so glad that the cotton ear disappeared. Don't be alarmed if things start to sound weird, or if you hear noise and can't figure out EXACTLY where it is coming from. That will pass too. It did for me and I am rooting for ya!
I am so grateful for your words of advice and comfort, however I am so sorry your MVD caused you so many problems. I am working the muscles until I see the speech therapist, which is due anytime soon. They advised the soft diet but that was due to my trachyostomy and not the numbness, so the next appointment should help with dealing with the numbness. I have some vibrating sensations that are hard to describe, they happen mostly when I talk but I figure any sensation is a good thing, however hard it is to cope with. I just hope they keep changing and ultimately I find I have some feeling somewhere. For now I remain completely numb from the scalp down to the bottom of my chin with a few vibrating areas in between. Thank you again for telling me your experience, I have to believe this still has time to improve. The surgeons said 6-12 weeks just for the swelling and inflammation to go down, let alone the regenerating of a nerve that has been pulled around. Surely there is still time for the numbness to go.....I live in hope...and it is wonderful to have you rooting for me!! Thank you again :)
Hi Nikki I am six weeks post op i still have a sort of numb very sensitive tongue which concerns me. Certain foods irritate it toothpaste stings and i do not like long conversations as my tongue feels like it is swelling. My facial numbness has practically gone just the left side of my bottom lip is still numb. I have not had my post op check up yet so will see what the surgeon says. thinking of you x Sara
Nikki said.
The numbness feels like it is heavy and dragging. Apparently my face is moving 'normally' but I couldn't tell you that without a mirror because it is so numb. It has started vibrating when I talk...which is a really painful sensation and obviously making me reluctant to talk! Not wonderful when you have a 6 year old little boy who doesn't stop talking to you!
Despite this vibration when I talk I still have the same level of numbness and still can't chew anything because I have no feeling in one side of my mouth. My teeth feel sensitive so I'm using a toothpaste to try and help with that, but again its just a cold kind of feeling.
If there is anyone who can relate it would be wonderful. I'm being reassured that the nerve was pulled around a lot in surgery that it will take time for that to heal and obviously, being only 4 weeks post surgery not, there is still a lot of swelling. I just wondered if other people had facial numbness that disappeared over time and I have been told that I need a lot of patience because it could take months. I can only hope and wait....and that is really hard.
Anything anyone can share would be so helpful...thank you
Sara I am 5 weeks post op tomorrow and have a LOT of numbness in my face and mouth. It sounds like you're doing really well and at 6 weeks you still have a lot of healing to do. My surgeon says it is between 6 and 12 weeks just for the swelling and inflammation to reduce and then the nerve needs to recover from being messed around.
Please let me know the outcome of your follow up appointment. Mine isn't until June 14th but here they give it time to heal before they see you again.
Thank you for taking the time to reply. I am very anxious and scared that this numbness is here to stay forever.
Hi Nikki This is the most challenging time of our lives and have to stay positive. I know we have to be patient but it is so hard as we still have to look after our families. I hate people asking how i am as i want to say "fine thanks" but can't. I have three children in their teens and want to be their happy Mum as i used to be but some days feel so miserable. Trying to come off Tegretol which was my life saver before my MVD but have dreadful headaches when i cut down and the' shakes'. Resting helps a lot but want to get back to work as going stir crazy at home. We have to believe time heals a look after ourselves for a while x Enjoy your little boy they grow up so quickly.
Nikki said:
Sara I am 5 weeks post op tomorrow and have a LOT of numbness in my face and mouth. It sounds like you're doing really well and at 6 weeks you still have a lot of healing to do. My surgeon says it is between 6 and 12 weeks just for the swelling and inflammation to reduce and then the nerve needs to recover from being messed around.
Please let me know the outcome of your follow up appointment. Mine isn't until June 14th but here they give it time to heal before they see you again.
Thank you for taking the time to reply. I am very anxious and scared that this numbness is here to stay forever.
The general rule of thumb with an MVD is that after a YEAR , if it is still numb, it is there to stay. My oral surgeon told me 18 months. Sometimes, I think they say that so they can tick down statute of limitations if they cause anaesthesia dolorosa ( like I have). Please stay positive. Thinking of you.
I had MVD surgery on June 19, 2014 (almost one month post op now) and had complete numbness to my forehead, cheek, lips, chin, teeth, tongue, roof of mouth, ear and scalp when I woke up from surgery. I'm get some feelings back in the tongue, scalp, ear. I am still numb mainly in the cheek, lips, chin and teeth. I was wondering if your numbness ever went away and you got all your feelings back. I know you had your MVD surgery in 2012, but I'm just now reading your post.