My surgery is set for next Tuesday, I have learned a lot from this group and thanks to everyone that has shared their experiences. I have one last question to those of you that have had the MVD and have been through the recovery phrase. What are the top few items you can share with me about your experience in your recovery from the MVD, - Surprises - good and bad.
John
I am having my MVD surgery tomorrow. Wish I could give you some pointers but we seem to be in the same boat. All the best. Can’t wait to hear your success story.
Thanks Patty, Best wishes to you as well in your recovery look forward to hearing your success story as well
John
One thing I will tell you is I had very diminished hearing and a feeling of fullness in the ear on my MVD side. My hearing was monitored throughout the procedure and it really was fine, but I did have this feeling for three months. It also made loud high pitched noise very difficult to tolerate. It did freak me out a bit, but it DID go away.
Best of luck with your surgery, and take your time with recovery!
Expect to have mild headaches and soreness due to your head being kept still for hours. You may experience some numbness on the side of your face and even on the side of your skull. When I had mine done I was able to sleep in my own bed and get up and down the stairs the first day I was home...Within a few days I was taking walks and honestly by the 3rd week I was anxious to get back to work. I had a spinal leak at the base of my incision which extended my hospital stay as they had to put a spinal tap in to relieve the pressure but other then that I felt really good. After going through TN pain for 8 yrs recovering from the surgery was nothing. Patty and John wishing you the best of luck and dont be surprised if you are up and around in a few days after coming home.....Good luck!!
John,
Helpful tips for recovery…
extra pillows
I found it difficult to get my head/neck comfy the first 2 weeks after surgery, extra pillows helped me find that “soft spot”.
nausea
Make sure in case you experience nausea at home that you have things you tolerate normally when nauseated, like tea and toast, ginger ale.
bruising
Due to the halo type device they secure your head in for the surgery you will have bruising and sometimes scabbing in the areas it was attached. It feels tender for several weeks after surgery.
In my case I woke up from surgery with copious amounts of dried matted blood in my shoulder length hair. I asked my NS and he said when they tightened it to my skull it actually caused me to gush blood…yuck! I must’ve looked lovely in icu! LoL I think I’m the exception though…
Ice packs
While in TN pain ice or cold never ever worked to relieve pain only heat…BUT in the days after MVD, ice packs really helped to ease the discomfort of the bruising as well as the itchiness of my incision as it healed.
insomnia, this surprised me …my sleep schedule was very skewed the first few weeks…I watched movies or read a book in the middle if those nights when I couldn’t sleep.
the ear fullness / deafness feeling is quite normal, many people have it for days to weeks after surgery. It was the most annoying thing of the whole recovery period for me. Nothing you can do about it, it clears up on its own.
Be cautious about doing too much too soon as well as lifting! I forgot a few times about the lifting rule and caught myself luckily each time…just in time.
let your body be your guide, we all heal and recover differently.
All the best of wishes! I promise the anxiety pre-MVD is the worst of it…
Please update when you can, take care of you!!
(( hugs )) Mimi
What Mimi said!
I stayed in bed for two weeks…mostly in bed week 3… Was scared, in case of rebound…and I was sooooo tired. Head weighed 20 lbs!
Hi Patty
Best wishes and good thoughts for tomorrow. Keep us posted.
Bellalarke
Patty said:
I am having my MVD surgery tomorrow. Wish I could give you some pointers but we seem to be in the same boat. All the best. Can’t wait to hear your success story.
John- Wishing you the best for next week. Thanks for posting and asking the question. (My MVD next week too, just found out.)
Bellalarke
Ed, if you don’t mind me asking, how old were you when you had the surgery?
B
Ed said:
Expect to have mild headaches and soreness due to your head being kept still for hours. You may experience some numbness on the side of your face and even on the side of your skull. When I had mine done I was able to sleep in my own bed and get up and down the stairs the first day I was home…Within a few days I was taking walks and honestly by the 3rd week I was anxious to get back to work. I had a spinal leak at the base of my incision which extended my hospital stay as they had to put a spinal tap in to relieve the pressure but other then that I felt really good. After going through TN pain for 8 yrs recovering from the surgery was nothing. Patty and John wishing you the best of luck and dont be surprised if you are up and around in a few days after coming home…Good luck!!
My pain was pretty bad the first week or two & staying on the 6 hour regiment of pain meds was very important to keep the pain manageable.
Keep you head elevated when you lay down; when the head gets towards heart level the discomfort intensifies.
After the first 4 weeks & continued soreness my neurosurgeon suggested and I did neuromuscular facial and neck massage. My face muscles had forgotten how to relax and they had to relearn how to...the difference was amazing.
There is no set time for recovery. It took me nearly 3 months after my first MVD and 8 weeks for my 2nd. Slow and steady!
Prayers and positive thoughts!
Pam
YeY dear Bellalarke! Great news… (( hugs )) Mimi
Bellalarke said:
John- Wishing you the best for next week. Thanks for posting and asking the question. (My MVD next week too, just found out.)
Bellalarke
I was 33 and I am sure that helped alot..Now at 63 I am sure would take longer to bounce back
Bellalarke said:
Ed, if you don't mind me asking, how old were you when you had the surgery?
B
Ed said:Expect to have mild headaches and soreness due to your head being kept still for hours. You may experience some numbness on the side of your face and even on the side of your skull. When I had mine done I was able to sleep in my own bed and get up and down the stairs the first day I was home...Within a few days I was taking walks and honestly by the 3rd week I was anxious to get back to work. I had a spinal leak at the base of my incision which extended my hospital stay as they had to put a spinal tap in to relieve the pressure but other then that I felt really good. After going through TN pain for 8 yrs recovering from the surgery was nothing. Patty and John wishing you the best of luck and dont be surprised if you are up and around in a few days after coming home.....Good luck!!
I had MVD in March - went well, found the offending vein, not artery. Five hours in surgery. Woke up feeling well, slight headache and wanted to sleep but no real pain. The day after, while still in the hospital, blood tests showed my sodium far too low. They moved me back into ICU which was scary as I felt fine and didn't understand why they were so concerned until I got ahold of my cell phone and googled it. Nurses were great, talked the doctor out of a main line IV and started salting everything they could. I was drinking apple juice with the salt packets from the nurses station at one point. I heard the doctor in the hall telling the nurse to get me to eat potato chips and French fries, anything salty. I couldn't believe my ears. Within about 12 hours I was OK again and moved back to a regular room. Was on fluid restriction for about 2 weeks afterwards, which drove me crazy, but I felt alright. Lots of rest and take care of yourself. Wishing you the best of outcomes!!!
Wow - great tips from all! I have just over 6 weeks to wait for my MVD and these suggestions and just what to expect are very helpful. Knowledge is power and I think as a well prepared patient, I will be able to take the healing process in stride. Best wishes to you John! Please keep us updated after your surgery. I know there will be so many prayers for you from this support group.
John, I will keep you in my thoughts and prayers! I am only 1 month post op now, but I would say everybody seems to respond to surgery differently and recovers at different rates. I hesitate to tell my story because I think I am having a slower recovery than most and don’t want to scare anyone. For me, icing my head and sucking on a piece of ginger root helped a lot. Nausea and dizziness have lasted the longest for me. I never had any numbness or pain at the sites where they held my head in place. I did have issues with insomnia, also. I wondered if it was a side effect of some meds, because I was exhausted but couldn’t sleep. The best advice I got was to get off the narcotics as soon as possible, by the 6-7 day I was only taking Alleve for pain and my head felt much clearer. Hope to get a full one month update posted soon. Be thinking of you on Tues!
John…I hate pain!
Thought I would take an icky pain pill to go get my staples out.
We got there and they did it before my pain pill took affect…I took it for nothing! Did not hurt!
John,
I wish you complete pain relief and very easy recovery.
I had 2 MVD's with slightly different recovery.
Rough time with intense nausea and severe headaches for 1.5-2 days. Easy sailing for me at home 1-2 days mostly in bed but not too bad. If your nausea is significant ask nursing staff to use more powerful medication. they didn't automatically do that for me until I asked.
Prior to surgery, I asked both docs if and when they would visit and or how accessible they would be while I was in hospital.
it makes a big difference to be in direct contact with yr surgeon vs docs on rotation at hospital. keep in mind that surgeon may be off or have office hrs away from hospital. Knowing when they would visit gave me peace of mind.
I'm thinking positive thoughts for you.
Thanks everyone for sharing your experiences and well wishes, it has been very helpful
Hi John, I am 11 days post MVD. TN symptoms gone on waking after surgery. They found artery under nerve but also vein on top that was too big to remove. Surgeon visited everyday but I had low sodium and problems with ear that was concerning. Woke up to nasty pain in ear that was quickly resolved . In hospital for 9 days due to issues above. Tired, nausea, headaches but still early on not every day. I am off work for 6 weeks and no driving for 3 months. I appear to have blocked eustation tubes now. All in all very successful. I can now eat, clean my teeth, kiss my family, talk properly and the stress in my face has gone.
I wish you all the best and hope you have the same success without the side factors.