Had my mvd yesterday, recovery is rough, will report more when I am able…
Dr. Fukushima did the MVD on my pica separating it from my ninth and tenth nerves. Post op was rough, lots of throat irritation, dizziness, some double vision, all improving quite rapidly. My voice is hoarse and not normal, but I’ve been able to eat and swallow without any GNP pain. It’s amazing. I knew it could be a rough slog getting this done, but being able to eat even hospital food without the stabbing and getting off teratol and lyrica, it’s great!
Now po day number 4, still pretty dizzy but able to go up and down the hall, using my iPad still a chore due to mild to moderate double vision, which comes and goes. I’m able to eat well, but liquids are more difficult to swallow. The hospital spaghetti I had for dinner was delicious, I ate the whole plate. Ice cream and pudding are easy! My voice is more like normal. No gpn throat pain! Dr. Fukushima did a great job, just be aware that postoperative recovery may be a bit harder and slower than you like. I might be going home tomorrow, po day five. I have no major hearing loss, left ear slightly muffled. I have no motor or sensory loss on the extremities, and minor headache which Tylenol takes care of. No wound pain to speak of. I expect slow but continued steady progress, will report as time goes on. Peace!
Hope you are doing ok, yes it takes a bit to feel like yourself again just don't push it. Think on my 1st MVD I did too much coming home on day 5 cutting grass on ride mower w/i the week. Since the first I've had two more still in pain and was when I woke up the first time, so it sounds good for now! KIT
Kim
I was discharged to home today, still pretty wobbly but the vision is musch better, too bad I still can't type.. LoL I'm not a good patient, I can dish it out but I can't take any punches!
I had trouble looking at anything that was moving or bright for awhile. Like a tv or my phone screen. All signs of any issue post-op are gone now. I did have mild swallowing issues for a week or so also. Back to work Tuesday. No longer a patient, but on the other side of the fence taking care of patients:) I am much more comfortable there!
Here is a small part of a long essay I have written about my experience. I can't say enough about the technical excellence of Dr. Fukushima, who I would rate very highly as a neurosurgeon, which is why you go to one. That said, the hospital postop part can make a big difference in your recovery, the caring part. Also as a surgeon myself, I am very aware of the things that go on in a hospital, and perhaps hypercritical. My wife is an RN as well, so she notices everything.
Post op:
First awareness in recovery: I hear, since I cannot yet see, a panicked female voice: I gather that they are alarmed my respirations are 50 per minute. My hands and feet are tingling and in tetany. I hear my airway grunting with each breath. She says, loud and panicked, “Get him over here, now!”
I think, they are going to trach or re-intubate me, not optimal. I think to myself, try to relax, slow down. I realize that my grunting is airway flapping due to the high rate after only one controlled breath, I determine that I am in a panic mode, so I deliberately breathe slowly and the voice is now calmer, saying “he’s at 25”. I ask, “am I coding?” she says, now in a calm voice,” No, everything’s fine!” Yeah, right. Fade back to black.
Things went better than the worst I could imagine, but certainly the high hopes I had were dashed immediately! I will post some ICU memories later.
Here is my cut after the steristrips fell off. No infection. The little spots heal quickly... The incision is hard to see when my hair is flopped down.
No major changes, just continued slow improvement today. Slight dizziness still but my voice and swallowing get a little better each day. It is slow, though. I will try to drive on post discharge day 6 or 7, I think... My faculties are OK.. Hearing as it was preop, no muffled sounds. I did have slight dry and open left eustacean tube for a few days, a minor irritation. I am eating everything I can set my hands on, and today cooked a casserole and loved it. Still down 18 pounds from my normal weight. Continuing to wean off of Lyrica and Tegretol, and my oral steroids. Can't believe how tired I get from minimal activity, like going up or down the stairs. Sleeping a lot except when I should. Rest is good for operated brains... Using a vaporizor for my dry airway, hoarse throat.
Checking in Postop day 12 now. Continued slow improvement, drove a few miles today, slept a lot, eating quite well, gaining weight slowly. Here are some recollections I penned shortly after getting home about my stay in ICU after surgery while he memories were still fresh. It is not intended to deter anyone from surgery, and my experience is different from what others may have. It is merely my journey through the surgical route, which I knew could be rough. I was of course mentally prepared for the very worst outcomes, they did not happen. However, as mentioned above, my hopes for the best, a smooth postop course were dashed immediately when I awoke in recovery, and this continued in the ICU. I jumped out of my GPN frying pan into the postop fire:
ICU was the pits, perhaps because it was so soon after surgery:
Sometime after I get to ICU, they tell me that the nursing page button is over here, and the PCA button is over there. I am still totally out of it, so when I start hearing things beeping and I start getting nauseated, I try to page them, but I
unintentionally keep pushing the PCA, getting multiple doses of IV morphine, making my nausea much worse. I spend the next few hours retching which gets under control after doses of Zofran and IV Phenergan.
They take my PCA away, LOL, no loss, since the pain isn’t bad. Throughout the remainder of my stay in the hospital I only need Tylenol for the pain I have which is minimal at the incision, I have some minor headache and lower neck pain. My throat is raw. I notice that the door to my room is open while I am retching, and someone closes it so the noise doesn’t go outside the room. It must be disturbing someone, or upsetting the tranquility of the unit. I remember sitting up, retching, in absolute misery, wondering if there is a lower place I have ever been, and the road ahead. I have felt like this a few times before, one of them when I was 3 hours out in a deep sea fishing boat just after finishing Medical School, miles away from shore, vomiting for hours, nowhere to go, nothing I could do to help. It looks like a steep mountain to climb. During quieter times I notice that the girls at the desk are happily bantering, although I do not hear their specific conversations. At least someone is happy, even if I’m at the bottom of the ocean. They give me a swab of some sort to help with the dry mouth and bad bilious aftertaste due to the vomiting. When I have stopped vomiting they change my sweaty gown. I am exhausted in ICU.
A Plus: we remember Kerri, a compassionate and nice nurse there. She seems genuinely concerned about my sorry state, and tries to take steps while she was there to alleviate my suffering. My voice is a whisper. Foley and ICDs are a pain. It burns when the foley comes out, they empty it out. It’s done before I am transferred out of ICU. The ICD machine causes my feet to pop up off the bed every five minutes or so till they prop up my legs on a pillow later, and it is a relief when they are removed. I know why they are there, I order them myself on everyone I take to the OR. Dr. F comes by at some point, and I try to talk but it is so whispery I don’t know if he really understands what I am trying to say. He talks over me and says “temporary” or “a few weeks” several times, I gather the surgery went well, he describes the big looping PICA and vertebral artery which had to be dealt with. However this is the first time I have heard there can be a 20% chance of re-operation to deal with it. Previously all I was told was a 4% chance. He says he doesn’t know why my vision is not right: it is double at first just to see the TV, then improves down to the iPad and my cell phone. He says where he operated was low, and vision is middle brain. I am wildly dizzy, and the slightlest head motion sends my head spinning like I'm in a tornado. I tell my devoted wife Theresa, “I did this to myself”, in a voice filled with misery and self-pity. She is my comfort, my bedrock. Why did I do it? Oh yeah, the horrible throat pain. I’m glad to get out of the ICU.
They take my PCA away, LOL, no loss, since the pain isn’t bad. Throughout the remainder of my stay in the hospital I only need Tylenol for the pain I have which is minimal at the incision, I have some minor headache and lower neck pain. My throat is raw. I notice that the door to my room is open while I am retching, and someone closes it so the noise doesn’t go outside the room. It must be disturbing someone, or upsetting the tranquility of the unit. I remember sitting up, retching, in absolute misery, wondering if there is a lower place I have ever been, and the road ahead. I have felt like this a few times before, one of them when I was 3 hours out in a deep sea fishing boat just after finishing Medical School, miles away from shore, vomiting for hours, nowhere to go, nothing I could do to help. It looks like a steep mountain to climb. During quieter times I notice that the girls at the desk are happily bantering, although I do not hear their specific conversations. At least someone is happy, even if I’m at the bottom of the ocean. They give me a swab of some sort to help with the dry mouth and bad bilious aftertaste due to the vomiting. When I have stopped vomiting they change my sweaty gown. I am exhausted in ICU.
A Plus: we remember Kerri, a compassionate and nice nurse there. She seems genuinely concerned about my sorry state, and tries to take steps while she was there to alleviate my suffering. My voice is a whisper. Foley and ICDs are a pain. It burns when the foley comes out, they empty it out. It’s done before I am transferred out of ICU. The ICD machine causes my feet to pop up off the bed every five minutes or so till they prop up my legs on a pillow later, and it is a relief when they are removed. I know why they are there, I order them myself on everyone I take to the OR. Dr. F comes by at some point, and I try to talk but it is so whispery I don’t know if he really understands what I am trying to say. He talks over me and says “temporary” or “a few weeks” several times, I gather the surgery went well, he describes the big looping PICA and vertebral artery which had to be dealt with. However this is the first time I have heard there can be a 20% chance of re-operation to deal with it. Previously all I was told was a 4% chance. He says he doesn’t know why my vision is not right: it is double at first just to see the TV, then improves down to the iPad and my cell phone. He says where he operated was low, and vision is middle brain. I am wildly dizzy, and the slightlest head motion sends my head spinning like I'm in a tornado. I tell my devoted wife Theresa, “I did this to myself”, in a voice filled with misery and self-pity. She is my comfort, my bedrock. Why did I do it? Oh yeah, the horrible throat pain. I’m glad to get out of the ICU.
Update.. Postop day 14... recovery is slowly continuing with minor setback today. I drove 30 miles to the office and saw several folks, had to talk a lot for hours. Voice became weak again. Got to eating lunch and almost choked on a sandwich, It appears that when I tire the nerve out with talking, swallowing isn't as forceful as it has been and the food can hangup before getting down the esophagus... especially dry foods like chicken or meat. Almost panicked but I simply stopped and rested a bit. Dinner went OK except for dry meat which I threw away. No choking. No GPN pain at this point, although I felt a twinge of left eardrum discomfort yesterday when swallowing. Headaches continue, low level, acetaminophen still adequate for that. My strength is about 50%, fatigue still significant, but it's all still worth it.
Thanks for sharing the surgery details. I am having surgery on Dec.17th. I will be in charleston S.C. @ MUSC. Dr. Patel will be performing surgery. He says that I will only be in the hospital 2 days and will be able to drive after 10 to 12 days. I am nervous about the surgery but the pain has gone on too long. I will be so glad to get off of the medicines. It is miserable weaning yourself off of the Gabapentin and the pain medicine. Stopping these meds without weaning will make you very tired feeling. Almost lethargic. I want to continue my Nortriptylene. Taking it has helped me cope so much with this horrific condition. I will back off from 50 mg. a day to 25. I am praying that having my left side either cushioned with teflon or cutting the nerves, will help the pain in my right side. If not, I will have to continue the medicines. Left side is much worse than right and it needs attention first. My pain is deep in my ears. Both of them. constant stabbing pain. Only thing that helps is the pain medication. I still have my moments even with the medicine. It was definitely worth the surgery for your family and yourself. Praying that you continue to heal productively.
Denise: thanks for your kind words. I cannot imagine your suffering, with both sides involved! I wish you well, please keep us up do date with your postop progress.
I am now off the Lyrica and Tegretol. The recovery is frustratingly slow, and my swallowing has good days and bad. I am trying to stay positive, and get lots of rest. That seems to help. The brain heals slowly, with postop effects lasting far longer than with other tissues.
Wow Vicdoc! Thanks for sharing with such detail. The incision looks better than I expected. The nausea scares me. But retching without GPN pain might not be so bad. I had been pushing myself to get to work (middle school educator) and keep my family in a normal mode to the point of migraines (which I never had) and retching with stabbing pain to boot. I am not working now, and surgery is Tuesday.
Coming out of anesthesia another fear, but have been there before. Thank you for keeping this crystal clear so that others can be mentally and physically prepared. I swing back and forth with what to expect.
Holding us up in prayer for a successful one time event, med and pain free future. I am certain this experience will be used to prosper you in your field of surgery, enhancing your bedside manner and compassion.
Mine is only one path and most probably have a better time of it. I always have nausea after narcotics. Good luck!
Hey Vicdoc when you get a chance will you post what your symptoms were before mvd thanks
My pain began 6 years ago with very sporadic occasional stabs on the left tonsil, slowly escalating to severe stabbing and triggered pains with eating swallowing, coughing, laughing, sneezing, stretching or just talking. Noone can really understand what the pain is like, I compare it to swallowing a piece of broken glass, or a fishing hook, or a sea urchin. Once triggered, pain could last from 5 to 10 minutes or longer, episodes lasting 2 to 6 months then slowly going away with lyrica. The most recent episode was the 6 month long one with no sign of going away. Despite heavy tegretol treatment it improved somewhat but was still intolerable. That's when I met with the neurosurgeon and decided to go with the mvd, which has turned out to be the right decision. I lost 20 pounds since August, now slowly increasing. As my above postings have described, surgery is not without a physical and emotional toll, and it is a slower recovery than I had hoped. That said, I would do it again. I would recommend Dr. Fukushima of Raleigh.
Another week gone by, every day I have small improvement. Sleeping a lot still, and enjoying it. I am gaining weight, but I am still down about 12 pounds from normal. Swallowing meat is still a bit difficult. I can talk for longer without tiring out my throat/voice as much. Voice is about normal when rested. My energy level is slowly improving. It is all slow. I have another week of mainly recovery, just work 1 day. My wound is doing well. Minor headaches are better day by day. I have no GPN pain. That's what really matters!
4 week update:
I travelled last week, across the country at day 17. Dr. F’s office had said it would be OK. I did have some headache at altitude on the way there but not on the way back. I was just as tired the entire week. One thing I did notice while I was away, is that food started to have less flavour, and that has continued to the present, now at exactly 4 weeks. I tried to eat some sugar and it isn’t sweet, and tart stuff like cranberry is bland… Meat tastes and smells a bit off, and remains a challenge to swallow. Being tired and stressed makes my voice high pitched and weak. It is not as bad when I am fully rested. The brain does funny things while recovering. I just hope this aspect is over with quickly. I am slowly gaining strength and slowly gaining weight. The wound is healing well. I did notice in the first ten days of so, when I gently pushed on the skin near the cut, there was a creaking sound. I suspect that this is due to fluids within the tissue. That noise has gone away. Recovery is not fast and it is not straight up. No more GPN pain, that was the goal and that is holding up. Thanksgiving is a good name for this day.
Hey Vicdoc, this is Tinabh…just seeing how you were. I’m still recovering. I had a hard time in the hospital had to be there 4 days. Had a difficult time coming off my meds, didn’t wean my meds before surgery so wasn’t pretty…hallucinating, paranoia, anxiety, and more. I guess I didn’t take full advantage of resting in the hospital. My voice is still very quiet and when I talk more seems to fade away. I just wanted to see how your voice is now. Dr. Fuki did said mine was more involved than the scans showed. I’ve also had the worst migraines since surgery. I did have some before the surgery. Dr. Fuki sent me to a headache specialist to try to get them under control since they are chronic now…trade one thing for another!!! That neurologist is just like Fukishima the best at what he does. He believes that the GPN caused the tension in my neck which have set off the migraines. Please let me know how you are doing. I Still get very tired.