GardenGal. I remember on the high school football we were required to build our necks with this contraption in the weight room where you'd attach weights to one end on a rope, then attach the web end around your head, and bend over and lift the weight up and down with your head. Funny, my dad hated the idea of me possibly getting a big neck and looking like a goon. But I could sure use one of those things now. My head feels 3 times as heavy as before surgery. I'm not going to therapy, but I'm going to make a concerted effort to not slouch and hold head straight up. I'll probably even post sticky notes around the house, as it's so easy to forget good posture and fall back into a slouch. Nuts4Rivers. After some research, I think you're right about the ulner nerve. My surgeon did ask about carpal tunnel. I've never had it. But I looked into proper seating position for computer and I'm doing it wrong. You're not supposed to have your elbows on the desk as this can mess with the nerve. Or your elbows/arms raised. Maybe I've developed carpal, and it just a coincidence that its onset coincides so closely to my VNS surgery. I'll improve my posture and desk position. If the tingling doesn't go away in a week I'll see a doctor about it. Here is a great YouTube video on how to sit in front of your computer. It's the best and easiest to follow video I've found on the subject. https://www.youtube.com/watch?v=Whhf55No15U
I know *nothing* about anything medical. Just from my own experience, everything related to my craniotomy was on one side or the other, not both. Also it was all pretty much confined to head or things that reside in the head like hearing and balance. I had middle fossa approach. Possibilities may be different with other approaches or complications i didnt have. I agree the neurosurgeons should know. It would have been nice if they would have speculated a little like suggesting your posture, or two much time in bed or swelling from stuff indirectly related to the surgery. One thing i did remember about my surgery was that apparently they pump you up pretty good on steroids during and after the surgery and as i gradually went off them i had some odd kinds of side effects, as swelling returned i imagined. Mine mostly had to do with hearing or head though. Go see some doctor about this now. Get the diagnostics and also make it part of your known history. Good luck. Let us know. Are you able to be up and about most of the day or still too fatigued?
Day 27 As is well known, recovery is slow. I'm finding that to be true. I guess I got a little cocky with how "well" I was doing a few weeks out from surgery. June, my fatigue is getting better though. The first few weeks I was almost always laying down. For the last week I'm tired, but not laying down nearly as much. It's a struggle though. I bought a back strap thingy from Amazon to help with my posture. The unsteadiness/dizziness had been improving slowly. As to that, there is an issue that's kinda bothering me, and perhaps someone can enlighten me: I thought that since the bad nerve was cut (VNS surgery) that the recovery from dizziness would be a slow, consistent, progression to betterment. But what I'm experiencing in the last few days has been a fluctuation downward to more dizziness/unsteadiness. It's accompanied by an increase in tinnitus, hearing loss, and some fullness. Maybe I'm just being impatient. But I thought since the nerve is cut, there shouldn't be any wrong signals going to the brain anymore. I don't understand the recent increase in dizziness. Hopefully it's temporary, and shortly I'll be improving again like I was in the first 3 weeks after surgery. Thanks for any advise, and for caring. (If I write in a bit too much detail, it's because hopefully this thread can be of help to future VNS patients.)
I can only speak to my own experience which may not apply at all. I do not remember much dizzyness at all. I had terrible balance and needed a cane or a wall nearby for walking for some time. Uneven ground terrified me. I was intrepid about my daily walks though and i kept on keepin on which paid dividends. I did find that each morning i was better as if the sleep itself had curative properties. I defintly had good days and bad in terms of my balance. To this day if i am tired or sick or have been drinking caffeine, my balance will degrade a little. One balance nerve is not like two. You rely greatly on your eyes and anything that interferes from low light to a little sinus thing or an alcoholic drink or fatigue can cause a temporary setback. I did have tinnitus that varied a lot, mostly being worse in a noisy environment or after a big (probably sodium) dinner. My wierdest symptoms were hearing related. Here i am different in that the hearing part of the nerve was almost severed and deemed of no use. I could hear things no one else could, like the click of a light switch in another room, strange things that make no sense. It seemed to me in retrospect that these things had to do with fluid in the region, swelling, changes with healing, who knows. I also was uncharacteristically emotional and sentimental for several weeks after the surgery. I dont know if that was the surgery or the anesthetic and drugs. They went away after months and my hearing was entirely lost. My powers of full concentration in my work returned after about 3 months. I had not very rosy prospects going i to my surgery, having been 20 years ago and involving a tumor so i probably did not expect a very quick or complete recovery so i was probably more happy with my state than i might have been if i had expected a complete and quick recovery. I was 49 at the time. I expect i would have a slower recovery at my age now. Ten years later i developed menieres in the good ear which was the one that was subsequently 'cured' with antivirals. Surgery in one ear can evoke an autoimmune response in the other ear. I am told this was probably true in my case. I think you should bring up all the issues with the surgeons so they can see the whole constellation in your case, just in case.
I've had tingling and numbness in my pinky and ring finger from ulnar nerve damage due to a repetitive strain injury caused by how I was sitting at my computer desk 20 years ago. I see this has already been mentioned, but I thought it might be reassuring to hear another account. Watch out for activities that have your arm bent at less than a 90 degree angle (a more closed angle). Some folks get into that position while sleeping. Clapping my hands also aggravates it, so I avoid clapping or clap low (like a seal!). I don't have the tingling and numbness as long as I'm careful in these ways.
Haven't wanted to update since recovery is slow. Actually stagnant, it seems. It's nicer to have good things to say. I see my doctor for post surgery follow-up on Tuesday. I'll post an update after. Thanks all who asked.
Sorry to hear that. Are you still having vertigo? What is the issue exactly? You've probably heard this, but these surgeries have MAJOR effects on your balance system and it might take months or years to fully recover your balance system as your brain struggles to adjust. Try not to be too hard on yourself during this time, as the added stress will only slow your recovery. Also, be sure to walk miles everyday. Do things to challenge your balance system and that will speed up recovery.
Yes, it always feels nicer to give a good update about ones recovery, and then receive the positive feedback from the masses in return, but sometimes you just can’t, so I understand why you’d rather just not say anything at all. I believe my other, “good ear,” is starting to feel a bit...wonky, but I’m hesitant to talk about it, because it’s Meniere’s, I’ve only told my husband/nephew(even though I just saw ALL of my family)and I’m scared, but also realize the futility of said fear. Just because people would like to have a good update doesn’t mean they don’t want to know the rest. If you just want to say, “I feel like road kill,” but don’t want any advice, only good thoughts/vibes or encouragement coming your way, you have the right to ask for just those specific things. It is a support forum, after all. You get to specify what you need. ::hugs:: (Ahem, those wishes probably won’t be respected by certain individuals on the forum, but the rest of us will make up for it!)
Autumn I hope your good ear is only being silly and all is going to be fine. Pupper we are here for better and worse. You are not alone. Stay strong
Thanks, Marta. Always a sweetie, you are::hugs:: ::singing to myself, "can you feel the love[for Pupper]tonight::
Update: (I will go into some detail, as these updates are for future VNS patients as well. But will try and be as concise as possible). It's been 1 month and 20 days since my VNS surgery on Sept 20, 2017. The first 12 days were expectedly difficult. Could walk, but very dizzy when I'd move my head. Bouncy vision. From around days 12 to 20 I felt slow improvement. I was optimistic. Around day 20 I seemed to regress to my old, pre-VNS, Meniere's-dizzy ways. In other words, fluctuating dizziness. Since day 20, about 75% of each day I'm distractingly dizzy. With the other 25% of day being tolerably, expectedly unsteady, from the nerve being cut (VNS). ((Sidebar: I had a bad and dumb incident around the 1 month mark. I was bored and depressed out of my mind being stuck at home alone. I drove to gym for a quick 10 minute light weight session, then to a 2 hour massage. The driving was very hard on my mind & eyes, but I could drive in-line and safely. During the last few minutes of the massage I started slowly spinning. A true blue old fashioned vertigo attack. I stumbled out and called a friend who drove me home and took me to bed. The slow spinning lasted 5 hours. I blame this on the toxins that are released from a two hour deep tissue massage. It made me thirsty...dehydration? And the driving which messed with my head and eyes. But still, why an actual vertigo attack if the bad nerve no longer works? My doctor had nothing to say about it. What was there to say but maybe "you sure are a jackass.")) Anyway, my overall point is, that after the VNS I expected improvement to be very slow, yet steady. Steadily upward. NOT fluctuating. And not better...then worse. Lately I've done more research into case histories and the standard VNS literature, and there are a few subtle and fleeting mentions of cases like mine, with fluctuating dizziness during their near-term recovery period. I could not find out if they finally improved to normality. But I get the slight impression they do. Which is what I hold on to. I expressed all the above to my doctor in email (in much shorter form) and he simply said there will be blips along the way. Freaking blips. It's hard for me to be in a car, and probably too early for him to tell me anything meaningful. So I asked him if we could reschedule for mid December. He was ok with this. Him being ok with not seeing me right now, made me feel better about things. Since if he was worried about my fluctuating dizziness he'd have demanded I see him now. I need to be patient. I knew VNS recovery takes 3 months...6 months...and up to a year for full improvement. It's just this on & off dizziness has me confused and worried. If the nerve is no longer sending bad signals, then why should I be "ok" for 3 hours, then bad for 5 hours...up & down, up & down? Just to be clear: When my daily dizziness is at it's worst, I am NOT stumbling around. I can walk normally but with effort. It's at the level of needing to lay down. Of being very uneasy. Distractingly dizzy. Almost impaired. But not close to spinning. Well, we all know VNS recovery is long and hard. Maybe I just need to cool my jets.
Two things I should add: 1. When I get excessively dizzy, it comes with increased tinnitus and aural fullness. Just like it did pre-VNS. Because, like they say, we still have Meniere's. Maybe the fullness can still effect my dizziness because it's so soon after surgery. I've no idea. I think of many things. 2. The VNS success rate is said to be around 95%. With that kind of percentage on ANYTHING, we naturally assume we'll be in the 95% boat. But some of us HAVE to be among the unlucky 5%, otherwise it wouldn't be there. WHY NOT ME???? Whoooohoooooooooo!!!!
I'm sorry to hear about your struggles. I do hope you recover soon. I don't recall your pre-op story. How did the doc ensure that you're not bilateral? My doc wanted to do a laby on me years ago, but could not promise i wasn't bilateral. Also, how did your doc eliminate MAV, PLF or SCD?
I've had MM since May 2015. Prior to my shunt surgery in fall of 2016, I had a number of tests (hearing/ENG/caloric) that showed I was not bilateral at the time. After the shunt didn't work, at one point my doctor suggested I see the clinic's allergy specialist. I declined. The clinic was far away with my dizziness and LA traffic jams I didn't want to be going back and forth to the clinic allergy specialist. I hadn't looked into your other three abbreviations. I'm bad at following regimens. I'm impatient. I do things wrong. I don't want to think about stuff right now.
Tom, do you think it would be prudent to try and determine if I'm presently going bilateral? Should I tell my doctor I'd like some testing (ENG/caloric)?
Honestly, i'm surprised your surgeon would do a VNS without eliminating PLF, SCD, allergies and MAV. I personally would get a second opinion and get all the tests done, including the allergy testing. If you are in LA, have you been to House Clinic?