One thing that I see that most people did not comment on is a stuffed ear. I experienced terrible vertigo for the first 3 days, and after 2 weeks I was back to normal. My stuffed ear made me a little worried. My surgeon told me that this was perfectly normal since there are little honeycomb-like structures right where the surgery takes place. These fill with blood and fluid. It may take a while for it to absorb. My stuffy ear lasted about 1 month. It made me thankful for good hearing! Good luck!
This is not the usual, is it. I did not have it and have not heard of others having it. I am sorry you had to experience it.
For me, the shaved area for the craniotomy turned out to be a funny story. I am 66 and have dyed brown hair and I have it straightened twice yearly. As the hair around the incision grew in, it came in white and curly. It was a while before I could fix it (3 months) so it was, for me, a bit embarrassing because it was quite noticeable. But still, very much worth the embarrassment since I have never had another symptom since coming out of surgery.
Thought you might get a kick out of this bit of humor.
I should have mentioned that I did have a feeling of water in my ear for about two weeks, but that feeling went away and I had no hearing loss as a result of the surgery. I have hearing loss, but the surgery didn't make it worse. :)
I did find it helpful to have an travel-style pillow as a neckrest, since I couldn't lie down comfortably otherwise. A wonderful nurse helped me in the Neurosurgery ICU.
Wow! I am so happy to read everyone's responses! Reading that there is hope for this being successful makes me cry tears of joy! I am so thankful to each and every one of you for sharing your stories with me, it really has eased my fears. Thank you so much for sharing, and I will be sure and update(or have my husband update) how things went and how I am doing. This support group is a Godsend and I am so thankful for all of you :)
Hi there - please read my long post I just put out there “5 Days Post MVD”. It is a very detailed account of post surgery, my first 5 days. I can say that I am so happy I did it. Prayers to you!!
I had it done one year ago. It was my first operation ever and I was terrified. It turned out to be a snap. They finished late afternoon, woke me up, and sent me to the ICU. I had a significant headache, and that was all. At 9:00 am the next morning I was sitting in a guest chair, fully dressed, when the surgeon came and said I could leave, still with a fairly strong headache. I took a cab to the hotel, stayed for 3 nights, and then flew 2500 miles home, the headache slowly dissipating every day until about the fifth day when it disappeared. I was in my home office doing a little work on the fifth day after, working pretty much full time doing office work by the seventh day. I was in the gym doing light weights in 14 days, and jogging outside on the 21st day.
I had traditional TN for 12 years, I'm 61 years old. If I had of known how uneventful the operation would be I would have had it done much earlier in the illness.
Needless to say, I am pain free and off of that D--------d Tegretol, which pretty much ruined my life for a good part of those 12 years.
Go forth with confidence, it really is a relatively inconsequential event and the benefit is a new lease on life!
I am 5 weeks post-OP from MVD surgery. I woke up being numb on the side of my face I had the surgery. The doctor said it may take up to nine months to get feeling back as my blood vessels were embedded in the nerve. I will tell you this, considering the pain I was in before surgery, this is NOTHING. It takes getting used to but I'll take it any day of the week. I am in my mid-sixties and my recovery has been pretty good, just general fatigue. I give you a lot of credit for asking what to expect because my attitude was "just do it and I'll deal with afterward." I didn't want to talk with anyone about it, didn't want to listen to their doubts, questions, etc. As others had posted I was told not to wash my hair for a week and no dyes for three months. My hair dresser and I figured it out and in another three weeks I'll get a partial color on the top of my head. I will pray for you.
I’m just about seven weeks post MVD and I have no traumatic feelings from the surgery. I had the Trigeminal and the seventh decompressed. Spent three days in ICU, one day at my friends place in Vancouver, and then flew home on a seaplane.
My first memory waking up in recovery was being extremely thirsty and finally getting my bruised lips to squeak out a request: “could someone get me a cup of tea?”. Then laughter from the nurses. And then I felt it…transcendent pain. Oh my god. But they were right on it and the next thing I remember is being in my ICU room and looking out to see my younger daughter, and then my older daughter with my grandson in her arms and my sister behind her, walking down the hall like it was a stage, and I was so excited. "The Baby! " I exclaimed. And then the waves of pain hit me again and the thirst was unbelievable. The nurses gave my daughters spongy thingies to soak my lips and the inside of my mouth. It was heaven. Then waves of pain and crushing headache. In and out of consciousness. I was given IV Dilaudid. Later that evening the surgeon poked his head in the door. I was trying to nudge the pillows around. “Hi!” I said, “I’m just trying to get comfortable.” “Well you won’t” he said. And sure enough, he was right. I did not get comfortable for 24 hours. Every day since then I’ve got a little more comfortable.
I had a crazy kind of energy the first week home and could hardly keep still. It took me a long time to really crash. Then I slept a lot. By the end of the third week I was looking around for something to do but I didn’t have a lot of concentration or endurance. Some days I pushed too hard and my head and body let me know.
Some hours I feel incredibly fragile, and some hours quite strong. I keep moving, puttering about all day. At night I sleep about 10 hours. In the beginning I woke myself up with an alarm to take my meds but that felt like crap so now I just sleep as long as I need to in one stretch. I’m still taking 3,600 mg gabapentin. My follow up is next week.
I don’t know yet how successful the MVD is for pain (I had progressed from TN 1 to TN2) or the hemifacial spasms. But I am so glad I had the surgery. The weight of wondering and waiting and was so huge. It consumed me. MVD is just a point to move on from.
Honour those who have had bad experiences, but don’t dwell on them at this point. Be confident that the surgery will work for you.
Keep out in front of your pain in the first few days. Keep your finger on the call bell and ask for meds whenever you need to. You’re the only one who can tell how much pain you’re in. Don’t suffer more than you have to. It’s only a few days. If all goes well it passes quickly.
Thank you Bellalarke! I have so appreciated everyone experiences and outpourings of good thoughts and prayers. I am very anxious today and am trying to keep myself very busy, but just don't have energy to. Today has been a low pain day so far, so that's good. I have already told my husband to make sure I was medicated every chance I had so no bad pain would sneak up on me. I will pray that you continue to improve everyday and stay pain free. I will be sure to keep everyone updated on my surgery and progress. Thanks again :)
I am writing one more time to you prior to your surgery. I elected prior to my surgery to not read too many of the stories of experiences post mvd surgery. Each person's experience is very different. I hope that you were able to read enough very very positive stories. Mine was just that. I would much rather have gone thru this surgery than a complicated orthopedic procedure like a knee replacement with all of the re-hab involved. I had one uncomfortable day, the day of the surgery and then it was a cake walk after that; almost like I had never been thru the surgery. I wish you the very best again. You will do well and wonder afterwards why you did not do it sooner!!!
Well Dear, you are almost home free now. This time tomorrow all the build-up will be over and you’ll be on your way to recovery. Keep that husband near! All will be well.
Bellalarke
proverbs 31 mom said:
Thank you Bellalarke! I have so appreciated everyone experiences and outpourings of good thoughts and prayers. I am very anxious today and am trying to keep myself very busy, but just don’t have energy to. Today has been a low pain day so far, so that’s good. I have already told my husband to make sure I was medicated every chance I had so no bad pain would sneak up on me. I will pray that you continue to improve everyday and stay pain free. I will be sure to keep everyone updated on my surgery and progress. Thanks again
My MVD was atypical in the fact I woke up with numbness and tingly prickles in my face. I was told it would go away but it never did. I now suffer from Anesthesia Dolorosa-a dreaded complication due to the prolonged exposure my cranial nerve it ended up damaging it permanently. This is a constant pain that will never go away but with meds I have become more tolerable and am grateful for the shocks and constant dull achy pain to be home, I traded one pain for another. When asked if I would do it again? The answer is yes, if there is a chance you have to get rid of the pain you want to take it. There are so many more positive outcomes then negative. I wish you the best and will be keeping you in my prayers for a speedy recovery! God Bless You-Rachel
Today was the Day for your Surgery & You were on my Mind today. I know that the Lord is with you right now and keeping you at Peace. I will continue praying for you Proverbs 31!!! You can Do ALL things through Christ!! I am scheduled for mine next Friday.. I will be following along after you BRAVE one. Jewels. aka. Julie
Even thought I didn’t start this discussion, I just wanted to thank everybody for telling their MVD story. I am not looking at surgery right now, but it may not be too far ahead. It’s great to read the pros and cons from those who have lived it- thanks again!
I will pray for you. You have my very best wishes. I hadmy second MVD (on another side) in August. I believe in the power of prayer and you will do just fine
Jewels said:
Today was the Day for your Surgery & You were on my Mind today. I know that the Lord is with you right now and keeping you at Peace. I will continue praying for you Proverbs 31!!! You can Do ALL things through Christ!! I am scheduled for mine next Friday.. I will be following along after you BRAVE one. Jewels. aka. Julie
I am 68 yrs old and have had TN for 13 yrs. I am thinking of having MVD but wonder what my chances of success are due to my age and the length of time I have had TN. Has any one had a MVD at my age or older and what were the results?
