Wanted to post a positive outcome after this very invasive surgery! I am 11 weeks out now and even thought the first month to 6 weeks was pretty rough! I was very dizzy for probably that long, to the point that I couldn't walk without help, let alone drive anywhere. I was allowed to return to work after just 2 weeks, but only half days (and I only went back so soon because I was changing positions and needed to train with the lady whose job I was taking). I had to be driven there and back. I am much better now - as far as dizziness (and it almost wasn't even dizzy so much as it just took milliseconds for my brain to know what my eyes had seen when I turned my head from side to side). I finally got past the headaches - mine weren't the migraines that I'd expected, I had severe temple pain from one of the monitors they had thru my head at the temple, but it finally eased up so that I'm med free :) and so far, no nerve pain either! I do still have some numbness on the right side of my face/chin/mouth and head, but I'll take that over the TN pain ANY day!! It seems to be lessening (or perhaps I'm getting used to the non-feeling), so I may eventually get the feeling back, but if not, it'll be just fine! I am able to be me again!! I can smile, laugh, talk, eat, brush my teeth and kiss my sweet husbands face again!! It feels so good to feel good!! I wish for anyone considering MVD the very best and I sincerely hope you do your homework and find the right surgeon. Mine was fantastic, one of the best in the nation for this surgery! I;m here to answer questions, hold a hand, listen to your fears - bring it on! Whatever I can do to help others who are dealing with this horrifying diagnosis, I'll be glad to! Pain free wishes for you all!
So happy for you! I am 5 weeks post-MVD and doing great as well. For as invasive as the surgery is, recovery from it is not bad at all. I was amazed at how well I felt after only two weeks. Wishing you a fantastic holiday season. I know that I am looking forward to mine. So much to celebrate!
I am so happy for you. I pray your recovery will be complete and uncomplicated. All the best.
EXCELLENT! Very happy for you. As far as the numbness, it usually goes away, slowly at first and in my case, disappeared gradually til it was non existent ( few weeks). The activities you described, which prior to TN, we take for granted, become so difficult and to be able to resume them with no pain is remarkable. I hope your recovery continues to go well and I know you will really enjoy Thanksgiving, ( and every day after too)
I am so happy for you I am getting ready to an MVD still working on insurance issues but I am on a liquid diet right so hopefully soon. Who was your doctor? I hope your pain stays away forever God Bless and have a wonderful pain free Thanksgiving
Happy days....good news indeed!!! ;)
Wonderful ! Halelujah!
What should be on hand for the home for me after my MVD surgery?
The hospital where the surgery is taking place is about forty minutes away someone posted that they got a room close to the hospital for a couple of days what do you think?
If anyone else has advise please let me know
I am thrilled for you Kristykins, a fabulous, positive story, lovely to hear… It’s a long time since I’ve felt that good (as you describe) I know though that when I have those hideous pains, and can’t kiss my darling husband it’s the worst thing in the world… I feel like giving up then, I grieve terribly for the way my life used to be, it’s no good feeling like that though, this IS life now,
I had an MVD, which wasn’t successful unfortunately, but meds are going okay at the moment, fingers crossed. Hugs Anne
Hi blessed no matter what,
Good luck with your MVD, you’ll never regret it… I woke up after my operation, I stayed in intensive care for 48 hours, then went on normal ward, I stayed in hospital 5 days, getting up was a bit shaky, showering was done sitting in a chair, a nurse helped…
Don’t think you need to get a room, they won’t let you out of hospital until your ready.
And home is the best place.
I didn’t do anything special when I got home, just took things easy, I didn’t drive for several weeks, when I got tired I rested, and everything went well… Best thing I ever did, I would recommend everyone consider it. My specialist was brilliant. Answered any “silly” questions I had… Good luck, let me know how it all goes, hugs Anne
bless no matter what,
i would recommend plenty of Ginger Chews to help with any nausea you may have. these are fabulous little candies available in most health food stores. also a recliner or easy chair is great. i borrowed my father in law’s. it allows you to sleep in position that which can minimize dizziness and pain. all the best with your mvd. keep us posted blessed no matter what.
Patty said: Thank you Patty
bless no matter what,
i would recommend plenty of Ginger Chews to help with any nausea you may have. these are fabulous little candies available in most health food stores. also a recliner or easy chair is great. i borrowed my father in law's. it allows you to sleep in position that which can minimize dizziness and pain. all the best with your mvd. keep us posted blessed no matter what.
Thank you so much!
anne morris said:
Hi blessed no matter what,
Good luck with your MVD, you'll never regret it...... I woke up after my operation, I stayed in intensive care for 48 hours, then went on normal ward, I stayed in hospital 5 days, getting up was a bit shaky, showering was done sitting in a chair, a nurse helped...
Don't think you need to get a room, they won't let you out of hospital until your ready.
And home is the best place.
I didn't do anything special when I got home, just took things easy, I didn't drive for several weeks, when I got tired I rested, and everything went well.... Best thing I ever did, I would recommend everyone consider it. My specialist was brilliant. Answered any "silly" questions I had.... Good luck, let me know how it all goes, hugs Anne
Dr. Robert Mericle (pronounced Miracle!! How fitting for a Neurosurgeon huh!!??!!) was my surgeon, in Nashville TN. He is hands down AWESOME!! I hope your insurance gets worked out soon! Praying for quick answers for you on that - as well as a surgery appointment soon - and an easy and complete recovery!
KATTHOMPSON4 said:
I am so happy for you I am getting ready to an MVD still working on insurance issues but I am on a liquid diet right so hopefully soon. Who was your doctor? I hope your pain stays away forever God Bless and have a wonderful pain free Thanksgiving
Hi Blessed! I was in ICU for 12 hours then in a regular room for 5 days - I was very dizzy, lots of pressure in my ear (surgery side) so they wouldn't let me go home until they felt that I could at least fix myself a bowl of cereal safely! After a round of steroids on day 4 I felt like superwoman so they let me go home the next day! The dizziness and ear pain/pressure finally subsided in the following weeks and now all I'm left with is a bit of numbness (which is fine with me!!). It's a very scary surgery, and even recovery sucks - but not as bad as TN pain! It was totally worth it and I'd do it again in a heartbeat if I had to! As for what to have on hand - I'd suggest a walker (or at least have one on stand by - in case of dizziness), a travel neck pillow (great for positioning around the incision site to support your head (you'll get really tired of sleeping/laying on the non-surgery side) and with the horseshoe shape of the pillow you can put one "leg" on your jaw and the other "leg" on the other side of your booboo with the curved part at the top of your head. You won't be allowed to wash your hair for a few days and then it'll only be a quick wash - no heat to dry. Your head/neck will be sore so I'd suggest to have a hairdresser on standby too - my sister owns a salon so I was able to go a few times a week and she'd wash my hair in the shampoo bowl where I could turn to the side and keep my booboo out of the line of water/shampoo as much as possible. She'd then pick out my hair and I'd go home wet headed. Didn't use product in my hair either - didn't want any reason to upset the incision! If you don't have a hairdresser available, you may want to find some dry shampoo to use. I also found that I needed a good pillow in the hospital - theirs was horrible! I hope all this info helps! Prayers for complete healing and an easy recovery!!
Blessed no matter what said:
Wonderful ! Halelujah!
What should be on hand for the home for me after my MVD surgery?
The hospital where the surgery is taking place is about forty minutes away someone posted that they got a room close to the hospital for a couple of days what do you think?
If anyone else has advise please let me know
Anne - I'm so sorry to hear that your pain has returned. I'm confused as to why that can happen - I know my surgeon said it's a 99% shot that it'll work, but it seems that if you move the vessel that's pressing on the nerve, wrap the nerve, then there shouldn't be any reason for the pain to return. Have you considered having the nerve clipped altogether? I've often thought if my pain returns that'll be the next step for me - I can't take any of the meds which is why I had to move on to surgery quickly. I do hope that your meds continue to help you! Praying for pain free days for you my friend!
anne morris said:
I am thrilled for you Kristykins, a fabulous, positive story, lovely to hear...... It's a long time since I've felt that good (as you describe) I know though that when I have those hideous pains, and can't kiss my darling husband it's the worst thing in the world..... I feel like giving up then, I grieve terribly for the way my life used to be, it's no good feeling like that though, this IS life now,
I had an MVD, which wasn't successful unfortunately, but meds are going okay at the moment, fingers crossed. Hugs Anne
Oh yeah...I forgot - you'll need stool softener and Metamucil or a high fiber regemin to get things moving - all the meds in the hospital plus weaning off the anti-seizure meds will stop you up quickly! And as someone mentioned a recliner is great for sleeping or a wedge pillow so you can get that slant to take the pressure off your noggin! I also didn't drive for about 6 weeks - had to be toted around like Miss Daisy! But I'm able to drive now - YAY!!!
Kristykins said:
Hi Blessed! I was in ICU for 12 hours then in a regular room for 5 days - I was very dizzy, lots of pressure in my ear (surgery side) so they wouldn't let me go home until they felt that I could at least fix myself a bowl of cereal safely! After a round of steroids on day 4 I felt like superwoman so they let me go home the next day! The dizziness and ear pain/pressure finally subsided in the following weeks and now all I'm left with is a bit of numbness (which is fine with me!!). It's a very scary surgery, and even recovery sucks - but not as bad as TN pain! It was totally worth it and I'd do it again in a heartbeat if I had to! As for what to have on hand - I'd suggest a walker (or at least have one on stand by - in case of dizziness), a travel neck pillow (great for positioning around the incision site to support your head (you'll get really tired of sleeping/laying on the non-surgery side) and with the horseshoe shape of the pillow you can put one "leg" on your jaw and the other "leg" on the other side of your booboo with the curved part at the top of your head. You won't be allowed to wash your hair for a few days and then it'll only be a quick wash - no heat to dry. Your head/neck will be sore so I'd suggest to have a hairdresser on standby too - my sister owns a salon so I was able to go a few times a week and she'd wash my hair in the shampoo bowl where I could turn to the side and keep my booboo out of the line of water/shampoo as much as possible. She'd then pick out my hair and I'd go home wet headed. Didn't use product in my hair either - didn't want any reason to upset the incision! If you don't have a hairdresser available, you may want to find some dry shampoo to use. I also found that I needed a good pillow in the hospital - theirs was horrible! I hope all this info helps! Prayers for complete healing and an easy recovery!!
Blessed no matter what said:Wonderful ! Halelujah!
What should be on hand for the home for me after my MVD surgery?
The hospital where the surgery is taking place is about forty minutes away someone posted that they got a room close to the hospital for a couple of days what do you think?
If anyone else has advise please let me know
Congrats to you Kristykins! Not just for a successful surgery but for the courage you had to take that leap of faith. I also had an MVD surgery just over a year go (Dr. Casey was my surgeon) and am pain free and med free to this day. I thought the recovery was much easier than I had expected, considering the invasive surgery. I think it was one of the best, if not THE best, decision I've ever made for myself. I also had numbness but just a bit. When I would push gently on my biggest "trigger" spot, it would feel numb like when you have that sensation after dental work but that is gone now. I'm so happy for you and what great timing with Thanksgiving here! My surgery was last October and I remember how thankful I felt last Thanksgiving. I am also here for anyone who needs me to talk about my experience, my surgery, or anything I can do to offer hope. I got my life back and I will forever pay it forward.
Hi Kristykins, WOW! SO good to hear that you had such a good outcome. Very happy for you, Jehovah is so good to us. I often hear people say things are gods fault when things go bad but I hardly ever hear it said when things go good so I say it. I really am glad for you this pain is so bad it's hard to describe to anyone how bad it is. I had a crane drop a machine on me when the cable broke and it didn't feel this bad.
I wonder if I can have MVD after having gamma knife. I have to admit though I'm afraid to do it. I have had so many operations (19 so far) already I just don't want another one but this stuff is driving me to it anyway. I had the knife but my pain is back full blown. Best to you and so glad to hear your doing well.
Congratulations Kristykins glad you found relief. Did you at anytime after mvd experience any kind of facial paralysis?
Hi Brandon. No, I’ve not had any paralysis at all. A little numbness, even still after 13 weeks, but no paralysis! They used a monitor to make sure doc didn’t get too close to facial nerve. From what I understand that’s the one that can cause paralysis.