Before you read this, I want to stress that my reaction and recovery are not in the norm, I had had the Gentimicin Injections which distroyed 75% of my balance nerve, so I only had 25% to loose. It has been 3 weeks since the surgery and balance wise, I am at the point that takes most people 2-6 months to get to. Here are some links that explain the VNS surgery:
http://www.michiganear.com/library/V/vertigotreatment.html
http://www.neuro.nwu.edu/neuro/programs/vestib/edu/vn_section.html
http://www.earsurgery.org/
http://www.ear-sinusctr.com/serv6.html
http://www.geocities.com/HotSprings/Spa/3143/neurec.htmDr's Visits before surgery:
First of all, I want to say I REALLY like the neurosurgeon!!! I got lost
looking for his office and showed up late. I was apologizing and someone
came up to me and put an arm over my shoulder and said "don't worry about
it" well, I thought it was a volunteer or something, cuz they are like that,
but when I turned around I realized it was the surgeon! I liked him right
away!! No inflated ego with this guy!!! We then talked. He is a riot!! He
said they will be going in behind my ear, that they will ONLY shave a slice
about 1-2 inches wide and my hair will totally cover it. The incision will
be around 6-9 inches long. Then they will drill a hole about the size of a
silver dollar and go in from there. He then got a head model out and said
"this is what we are gonna do" he proceeded to pick brain pieces out so he
could show me where they will be working, I couldn't resist, I said "what,
you will pick the pieces out and drop them on the table?" He was so funny!
He said, "well, it would make it easier!" He explained how he will move the
nerves and brain so my other Dr can cut the vestibular nerve. I asked him
if I could keep the piece, he said that was gross and if I want, he will
have spaghetti for lunch that day, keep a piece and put it in a jar so I can
tell everyone that is my nerve!! He explained all the risks, but, I already
knew them. I will be hooked up to a facial monitor, so if they even touch
that nerve an alarm will go off and let them know. Also a hearing monitor.
He said him and my Dr have done many many surgeries together and that a VNS is basic, because they usually do tumors where they do not know what is
gonna be in there. he said they have done quite a few VNS's and ALL have
been successful. They did have to do a second one on one lady because they
didn't get the whole nerve. Lastly, he told me I will be hooked up to a
spinal fluid drainer thingie, it will keep draining my fluid for 48 hrs. He
said it relaxes the brain and softens it, and then he leaves me on it for
48hrs, because that way, instead of the fluid building or leaking somewhere
its not suppose to, it will drain out the tube. I asked him if it will give
me a headache, he said "a whooper! but not to worry, he will keep me nice
and dopey :) His office is only 3 doors down from the neuro-ICU, so if he
is needed he will be there within seconds! I LIKE that!! When I left, I
shook his hand and he gave me a big ol bear hug and said he will take good
care of me!!! Isn't that somethin???????Ok, now for my ear Dr. The first thing he told me when he walked into the
room was NOT to cut my hair :) that he will save it :) LOL He asked me if I
was ready for this, I said yea, but did cry. I told him I am worried because
I always seem to be in that lil bitty percent that nothing works!! I was
gonna tell him I don't care about the hearing anymore, just get the WHOLE
damn nerve, well before I could, he said he was gonna be more aggressive with me, go in at an angle so he will get it all. Told me he will probably nick
the hearing nerve, but will try hard not to. So, we are on the same mind
frame about this! I told him not to worry, just get the whole thing!! He
KNOWS how bad I am, how I cannot even leave my home alone anymore! He KNOWS I am willing to sacrifice the hearing to STOP the vertigo, so after all the treatments, after being so careful to preserve my hearing, he is finally
seeing things from my point of view! OK, after the 48hrs, I will be in his
care again in a regular room. (I am thinking Friday sometime) He told me
"get UP, go potty, sit up, MOVE" he is sending a physical theorist to me
right away, to help me sit, move my head, etc. BUT, we are both pretty sure
I will just be a little off balance and if I spin, it will not be bad,
because I only have about 25% to lose, I already did the hard part with the
gent. I am basically looking at a mostly "owyies" "hurt, sore" than I am
dizzies and all. He also said that if it comes back in ANY form in the next
6 months he will do a Labyrinthdectomy. He told me he is determined to get
me my life back!!! He said I will be able to get off all meds within 2
months! I know I will need to stay on the antianxiety for awhile, until I
get in into my heart that I WILL not drop into a spin at anytime. He knows
that and said wait on that until I feel it is time to go off it.So, that's the deal :) I feel much better KNOWING what is going to happen
step by step now!! No longer my imagination running wild on me!!! I am
amazed how much knowing has calmed me down!!! Also, I REALLY like and trust these two Dr's! they work together all the time and truly like each other!They both want me there at noon, because they both said if there is a room
open they are going to do it right away, instead of making me sit and wait 2
hrs and worry. So, I will probably be in surgery by 12:30-1pm instead of
2pm.
P.S. The Neuo Doc said he will take the bone dust and pack it in the hole
and it will harden within a year or so. My mom grossed out! It was so
funny!!!!My Experience:
I am doing good, compared to so many others who have had this surgery!!
The only problem I have is the massive headache, but my Dr said, "hey, what
did ya expect? Ya had a hole put in your head?" he's too funny!!!Ok, on Wednesday, my sister (who works at the hospital) checked the schedule and they were running on time, so I was expecting surgery to be at 2pm like planned. We got there at noon like they told me, I went into the waiting room and had just barely changed into a gown when the guy shows up and says, hop on the bed, lets go!!!! So, for some odd reason, they were
running ahead of schedule!! Ok, off we go to pre-op. My sister and my
daughter we're the only ones with me, I told everyone else to wait till
about 1:30 to show up!! When they did my IV my daughter wanted to watch :)
(what can I say, she's WEIRD!) so as I am saying "ouch" she is saying
"cool!! that's how they do it?" hehehehe My Neurosurgeon came and saw me,
then the ana.....ana......the "knock me out guy" sheez, he told me he will give me the "relax and forget med" as soon as I see my ear Dr. Well, even
as he was telling me this, my Dr walked in. Next thing I remember is saying
"nite nite" to my daughter. Welllllll.......as I was totally drugged and
goofy, my sister said my lil girl asked me what she is getting for
Christmas!!! The lil pooper!! hehehe according to my sis I would have told
her if my sis hadn't told me to shut up! hehehe Then, I am told that as
they were taking me into the operating room I was blowing kisses and waving
like a princess!!! HAHAHA I didn't believe my daughter, so had my sister
confirm this. (musta been goooood "forget" medicine huh?)Next thing I remember is saying "It hurts :( Ohhhhhh my poor head hurt
so!! I guess I was very restless and they could not get me to lay still.
Next thing I remember was my mom's voice saying "what do you want Cathy?" I said "My babies, I want to see my babies" then there they were, Sherri holding my hand, Justin rubbing my leg. I remember looking at them saying "I'M OK NOW!" I thought I said this clear and VERY lucid, but, Sherri's version is actually funny! She said it was slurred and funny :) Even in my drugged state, I KNEW they were scared and I NEEDED to see them and let them know I was ok!!! I passed out and slept for 5 more hrs. After I saw them, I calmed right down.Ok, I wake up mostly aware the next morning. my goodness was I plugged into the stuff!!!! I had a regular IV in my left hand, an Artileral (sp) IV in my
left (this is where they go into the artery so they can draw blood and do my
BP) with a hand brace so I could not move it, a cathrider (ick!) heart
monitor, finger thing to check my oxygen, BP cuff, and these leg things that
contract and relax to keep the leg circulation going good, and oxygen. When
my neurosurgeon showed up, I asked him to unhook me for some of them. So,
they removed the catrider, and the artileal IV (whew did that one leave a
bruise!!) NO dizziesAll day I just laid there in and out. They had me on Morphine for the
pain. In the late morning, they gave me one of those machines where I could
push the button and give myself a dose. I tried not to use it much. The
Morphine made it hard to take a deep breath and I was itchy all over!!!!!!
So, only when I REALLY needed it did I push the button. At one point, I was
scared because I couldn't catch my breath, and my nurse, who was sooo very
nice, talked me down and I was able to relax enough. At one point, she told
me to sleep, I confessed I was afraid to cuz of the breathing and she said I
am hooked up and if my levels fall too low an alarm would go off and she
will watch me the whole time. I slept 3 hrs and when I woke up, she came in
and said I did good :) That night, I was restless and the night nurse told
me to push my med button, I told her I didn't want to put too much in my
system. She explained that I had a LOT in me the night before, so don't
worry! :) Oh yea, my sister brought my son Justin to see me and he is still chuckling, says every time I pushed my pain med button, I went totally
goofy for a few minutes ;)Ok, Friday morning. When my 2 Dr's showed up, I was MUCH more with it and we talked. They both said I could go into a regular room that day. So, off
to a room I went. (I LIKED that nuro-ICU room soooo much better, the bed was awesome and soooo nice!!) A therapist came and got me, walked me through the halls, had me do some things and when we got back to my room declared I do not need her. That I had already learned how to balance on one side and that my previous vestibular rehab was still working strong :) AT noon they gave me a final dose of anti-biotic and "reduce any swelling med" and took the IV out. So, I basically spent Friday sleeping. Oh yea, my son and his
uncle came and saw me and I cracked Justin up again :) They changed me to
percacet (sp?) and while Justin was there gave me one. Well, I didn't know
it, but I nodded off, and next I remember was Justin shaking me saying
"mom, we are going, you are passing out".Sat. morning my Dr shows up and says I am doing so good I can go home!!! I
asked him, "Its over, right?" He took my hand, got tears in his eyes and
said "Cathy, its OVER!" I still have not taken the time to absorb this,
because I get VERY teary when I think about actually being able to LIVE
again!!!! So, I will soon.My mom and dad took me home about 9am. My birds went nuts when they heardmy voice and ohhhhh that hurt my poor noggin!!! I went to bed. I have been sleeping a lot since I got home. My Dr gave me Darvocet to take for pain, but, it wasn't working. What was was just plain Ex Strength Tylenol. But,
today they stopped working good and my GP called in the meds I used to take
for my massive Menieres headaches and within 5 minutes of taking them I had so much relief!!! They make my balance a little unsteady, but, I will take
them till the edge is off the head. I KNOW I can walk and move now without
the "swirls and spins" The incision does not hurt, it's the lil hole in my
head and when I move I get a pounding over my eyes. This has been subsiding
some. When I wake up from a sleep, it is about 1% better. Off course, not
near fast enough for me!!!! sheez!During surgery, when my Dr saw my balance nerve, he found massive scar
tissue and extra blood vessels that were pushing on that nerve, which was
causing my nerve to continuously misfire. I asked him if ANYTHING we would have done would have worked, and he said, no. and this is why nothing did
for me! The only thing I can come up with is, I had the Chicken Pox at 28,
6 months or so before all this started. No head injury, no ear infections.
We will never know why, but that is our best guess where the scar tissue
came from. I have almost total hearing loss in my left ear now. He did his best not to touch the hearing nerve. Its either that or, I have a saline packing
around that nerve. Time will tell as the packing devolves. Know what? It
was a small price to pay to get my life back, it really was!!! I am
relearning how to hear again, sounds are echoing and sound real strange to
me, but that will get better everyday. I tried my hearing aid today and
all it did was squeal. So, I will need to send it to Denver to have it
rebuilt and if it is permanent damage, I will need to wear it all the time
now. No biggie......compared to life before!!!My Dr said I will be off ALL meds!!!! The only ones I am taking right now
is pain meds and my anti-depressant. I have not needed any of the others!
The anti-dizzy, the anti-nausea, the diuretic, etc! I know it will take
some time to get off the anti-depressant and I will need the anti-anxiety
one till it gets from my head to my heart that I will no longer "drop" to my
knees at any second spinning out of control, but, I will be working on that
and time will make that happen :)At home:
First off, I wanna say ewwwwww grrrrOOOOssssss!!!!! I felt my lil indent
for the first time heheheI woke up with the wobbly eye syndrom this morning. Can't watch TV or read
without closing one eye. It is sloooow nystagmus. It should have started as
soon as I woke up from surgery, but, since I am not normal, it started 6
days later. I am going to do visual vestibular exercises at home with my
daughter. I will work on it till Monday and if they still cannot come to
center I will see about going back to rehab for it. I was expecting this,
just took it a few :) NO DIZZIES at ALL tho!!!!!!! Awesome huh????? The
headache has gone from a #10 to around between 5-6 since yesterday :) Thank
goodness!!!!!!
My eyes stopped wobbling by the next morning.
I am sitting here, just woke up, so its the time the spins hit me the most.
Well, it started.....the pressure build-up, the "funny feeling"......oh
oh!!!!!!! Know what happened next?? nothing........NOTHING NOTHING NOTHING NOTHING NOTHING NOTHING NOTHING NOTHING NOTHING NOTHING NOTHING NOTHING NOTHING!!!!!!!!!!!! I got all the feelings of a drop spin.........but...........NO spin!!!!!! this is strange and sure will take some getting used to!!!!
Jan 6, 3 weeks laterI am doing great! Off all meds but the Paxil for depression and the Xanax for anxiety. Those will go in time. I need time to become un-afraid of life, been scared and have had spins so long, it will take some time. The headache is gone, except when I do too much, then it will throb above my left eye some. I am thinking about going back on the duiretic though, I have been getting pressure build-up and then the tinnitus gets very loud. I do not know how much hearing I have left, I get a hearing test Jan 26th to find out. As of now, I can only hear sounds that are very loud in my left ear, so I figure I have lost almost all hearing in it. I am just hoping that I have enough left that my hearing aid can be rebuilt and usable. It is very hard in school without my hearing aid, I miss about 1/2 the lecture.
Balance wise, I am fine! No tips, tilts, swirls, or spins!! I am not running into things anymore, not tripping over air either :-) I DO still have the Menieres attack, I can feel the pressure build up, the "weird" feeling in my head that always told me a spin was coming within seconds, but, I DO NOT SPIN!! each one I have, I think, "oh oh, this is it!" but then, nothing happeneds! It is pretty incredible! I have been walking places, leaving my home more and more to get over the fear of being alone in public. I start classes again in a week, so I need to be able to be unafraid. I still have a little trouble with floresent lights, and places like the grocery store, with all the visual stimuli, I probably always will, but, I think after a while of not getting sent into a spin, I will be able to ignore all that. My family says I walk normal again. :-) I have not walked with my hand on the wall in the whole time!!
As it stands now, and as my Dr told me, for me IT IS OVER!! I will still always have the pressure at times and the tinnitus, but, no more spins, no more headaches, no more nausea, etc that all goes with the spins!
I hope I am right in saying..............THE END!
Sept. 2000: Well, the nerve has grown back by 30%, so I still have the attacks, not as often, but still have them. My Doc said sometimes if there is even one fiber missed, it will regrow, or, sometimes the ends of the nerves will piggyback on the hearing or facial nerve and grow back together that way. I am having an attack about once a month and that is a LOT better than daily!!! The Doc talked to me about a second VNS, going in from a different angle to get the nerve part that was missed, but, I am DONE with surgeries and all, so I told him no.
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