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View Full Version : My MVD Surgery - Back home on Day 3!


sengels
11-19-2006, 11:10 PM
Hi Folks!
I have lived and I have returned from the MVD surgery I
had the day before last and it was not bad at all. I
almost feel bad writing about this because everyone seems
to be having a much harder time on my TN email list than me.

I just got back this minute, and I could not get my husband
to send updates as my 4 yr old woke up with a fever the same
morning my surgery was scheduled. And she hadn't been sick
in months before that! I also did not get my home Rx's yet so
I have to just give you some nitty-gritty, some unexpected
things and some things that helped.

#1 - I would have died if I did not bring along my Sudafed
for the eye pain. Horrible!! It really helps tons. Those
complaining about occipital pain, I'm telling you, try it!

#2 - I feel mostly bruised and beat up. The vice marks
on my head are bruises, there are bruises all up and down
my arms, my incision is extremely tender. Even my abs got
sore from sitting up without throwing the weight of my head
and shoulders forward as is normally done and also maybe from
the barfing, more later on that.

#3 - My ear feels full and it seems like I cannot hear
out of it, yet I still use it to talk on the phone, so
I do know that it is working. Still, it is probably the
second most annoying thing next to the bruising.

#4 - What helped best with the throbbing soreness was the
steroids I was given. Not the two giant Percoset, not the
valium, but the steroids. I will be tapering off from them
at home now.

The one first day after surgery was actually a nightmare for
me but only because I am just a rotten patient. I told them,
give me something besides Morphine when I wake up, and I don't
like codeine much either, so go with Percoset.

So after surgery, they dutifully give me the only one other
IV painkiller, which is Dilaudid and I threw my guts up. I
couldn't keep down water. So for the first 24 hours I suffered
through no hydration, no nourishment, no pain relief with a
POUNDING "top of the head missing" type headache. I screamed
and cried all night long and actually threw things at the staff
who tried to placate me with tylenol, telling them the stuff is
a garbage placebo for the masses.

While I was barfing up water, everyone kept coming in and asking
"Where'd she get water?" and they'd point to my water bottle and
say "She brought it!". I always bring my own, much to their horror.

Oh, why was I standing and throwing things? I peeled off all
the wires and tubes like the Hulk, 18 hours after surgery.
Honestly, getting rid of that crap (especially the catheter
but not the IV) makes me feel immediately better. I am the worst
ICU Patient ever.

Finally, a tough-love tall russian guy ICU nurse comes in to
tell me "Look, when your brain stem swells, first you throw up.
Then you get very very sleepy. Then you die. Now you can see
that if we were give you any pain relief and you naturally get
sleepy from it, we couldn't tell if you were dying or not."

OK, so that shut me up. I just cried and cried. I knew I made
my own bed. My pain was without a doubt a 10 that night, I would
have to almost say worse than the original Trigeminal Neuralgia
pain even.
Luckily later I felt a little better and needed food but wasn't
going to be given any. Thank god, I always bring that too for just
these hospital deprivation occasions. I ate two chewy granola
bars, and kept them down. After they saw that, I got my percaset.
Then I felt so much better that the next day I got up and got dressed
and everyone asked if I was going home that day. I said "No, I don't
think so, I just had brain surgery yesterday."

So then I put my shoes on, grabbed my bags myself and walked down
to the regular ward for decent care that did include food and medicine.
I napped a lot and came home today, the next day. It was as if
I suffered all I was going to suffer just that first day.

I was just handed my meds by my husband. I am expected to take:
Vicodan, which is 5mg hydrocodone and tylenol. 2 mg of Valium for
muscle spasms and that was all my surgeon's idea. A nice idea.
The generic of my steroid, it says here is Methylprednisolone.
It is a tapering blister pack. They also fed me colace and pepcid
the whole time I was there.

It hurts to cough and poo and I cannot sit down briskly onto hard
surfaces because the pain shoots right up to my head. I wasn't
given staples like everyone else, just sutchers. For a minute
after surgery, I thought my tinnitus got cured, but no, its still
there. I am not confused, very tired, or in too much pain. I can
turn my neck much more than expected. I can probably drive in
a week. I just feel really beat up, that's about it. Not bad at all.

I even went into Zabars and bought some gourmet food to bring home
on the way home from the hospital. Unlike the hemifacial Spasm patients
who have gotten MVDs, food doesn't taste terrible to me, but it does
seem to taste kinda bland and even my favorite goodies seemed terribly
unimpressive.

All in all I would say this was totally worth it. I've got to lie
down now though. I'll check back later for questions and concerns.
Regards,
Susan E in NYC

sengels
11-19-2006, 11:46 PM
I am going to attempt to post a photo of my incision on day 3. Surgery was Fri Morn, photo was Sun Eve. My hair is long and pinned up to the side, it is mostly all there.

EE03
11-20-2006, 12:51 AM
Boy, I think this is one of the quickest posts after MVD. Thanks for posting the pic of the incision. It looks pretty impressive. I hope your feeling better by the time you read this.

Positive vibes from here for a swift recovery!
E!

Jeanette_A
11-20-2006, 02:20 AM
You sound great! I hope you recover quickly! Thanks for the details (and photo) and keep us posted with your progress!

I'm looking for a neurosurgeon to do an MVD. What resources did you use to find an experienced Dr.?

ella138
11-20-2006, 06:05 AM
Welcome home and congratulations on starting the new chapter in your life. I found the first 24 hours the toughest as well (although not as bad as what you described) at least I didnt barf, and didnt have a catheter. I'm glad you made it through with flying colours. I guess you already know the fullness you are feeling in your ear is very normal. Your incision look clean and neat. Dont forget to allow yourself the time you need to heal. You may tire easily at first, after all you did have major surgery. You didnt mention anything about your TN pain. Is it gone? Glad you're back home with your family. Nothing like the love of good friends and family to help you heal up quickly.

sengels
11-20-2006, 06:49 AM
Hello again all.
I posted earlier that I was having my MVD surgery while completely in remission. I had the most nastiest undeserved attack in August and it was then that I begun the process of finding the right surgeon. I knew it would be a while until I nailed down all to details to actually get the surgery, so I SWORE to myself that even if I was feeling no pain, I would still go threw with it to extricate this monster from my life. That last few weeks, I kept on going down a pill - from 4 to 3 to 2 then that last week I only was taking a measily 200 mg of tegretol. Then for the three days beofre surgery - I took NONE! I was heading for an attack FOR SURE but the surgery came before that happened. I had lots of the tingling, itching, finding myself rubbing the area, it was going to happen. I wanted it to actually, so that I could appreciate the surgery more, but it didn't.

I am still thrilled that I did it. All the tingling is gone, my surgeon said my nerve was wrapped the entire length with an actual artery that he had to move. A totally text-book case, and he fixed it.

I found my surgeon through my horrible HMO. We have our own business so I ended up booking surgery with someone out of network, I was raised kinda spoiled so I had no idea there was any such thing as not being able to get any service from certain doctors. But that's what we had, NO out of network benefits.

So then I had to cancel that guy, and I went through my HMO's list carefully - This one's a spine guy, this guy does Parkinsons, etc. Then I saw my guy. Very young and not even certified but seemed to be surrounded by all the "rock-star" status neurosurgeons we have here in Manhattan. There are like 4 big "Best of" doctor guide books around here, some for only NY some national. All the guys he was working with were in those guides, and he wasn't even certified. I was entruiged. Plus he actually had down in his profile that one of his main focuses & interests was TN and doing MVDs. And he had published a ton of papers already, with all these top guys. He also did his residency with the Mount Siani surgeon I almost set a date with, but couldn't. It's like, he was everywhere I looked.

So we went to see him. It turn's out that he is like their young Prodigy. He was sharp as a whip and super nice. He told me he would have Dr. Sen "assist" in my surgery, which is like a joke since people go to see Dr. Sen with "inoperable" tumors and he fixes them up like new. He's always in all the guide books. Dr. Sen also studied with Dr. Jannetta for several years, so that was the best reason of course.

So here I am with this young sharp Ivy league kid who everyone loves with the lastest and greatest techniques just taught to him, PLUS another pair of older experienced Dr. Jannetta-trained eyes looking in.

It was the best of all worlds. I got my free HMO Neurosurgeon. He got top billing for Brain Surgery (he was psyched), and Dr. Sen got to train his prodigy. They are taking him out into their new "Crainial Base Surgery Center" where they can do this ground breaking surgery without all the rules and regs imposed upon them by a big NY hospital, but they need him to get some more experience and get certified.

Here is the website: http://www.cranialbasecenter.org/
Look under "Media Coverage" on that Site.
and here is my actual surgeons own listing: http://tinyurl.com/v5myd
He's a doll and a perfectionist and I highly recommend him.
Susan E of NYC

sengels
11-20-2006, 07:02 AM
And here is where you will find Dr. Sen and my guy, Dr. Shrivastava "Doc Raj" listed together in the place where I actually went to have the surgery done:

http://www.nyneurosurgery.org/staff.html

I don't really get how these HUGE NY hosopitals are structured, but I was told I was at The Roosevelt Hospital of St. Luke's Beth Israel. I thought that was three different places! Apparently not. Then on that website they call themselves the Hyman-Newman Institute which is WITHIN The Roosevelt Hospital. And they are all a part of the Continuum Health Partners. Please! It wasn't easy finding a surgeon, but something like finding a spouse, you know them when you've found them.
Susan E of NYC

ella138
11-20-2006, 08:51 AM
You sound great!!!!! I'm soooo happy for you!!!! :D :D :D :D :D :D :D
Allow yourself the time to heal though. I know you are on a bit of a high having this horrible thing behind you, and a fabulous life in front of you. It's great hearing these positive experiences. It gives so many people hope.

Silver Swan
11-20-2006, 09:03 AM
Susan: what a good looking incision that is! And you look like you are probably a very pretty girl, what little we could see of you! Sorry you had such a bad time right after surgery, but then you did make up for that by feeling better fast. Please keep us posted on how things are going. Your successful MVD will be very encouraging to others contemplating this surgery. Thanks for the quick update.

Shirley H.

Jane
11-20-2006, 11:52 AM
Susan,

Thanks so much for sharing your story and the picture! May you continue to have a speedy recovery. Be good to yourself and don't push it. It does take time to heal from major surgery.

I am having my mvd in mid-December (probably Dec 12th, still waiting on exact date) and am starting to get pretty nervous. It's great to hear (and see) the nitty gritty details from all different perspectives. That is one of the many great things about this forum.

Jane from kentucky

sengels
11-20-2006, 05:56 PM
I need to rest today, but I've got to tell the future MVD patients that BEFORE surgery is way-way more stressful than after. I have a new Zest for life now. Before surgery, I didn't know if I was going to my death or not. Well, no one dies from this, but still, couldn't help thinking it. Now it's all behind me. As is the Tegretol. Yipeee! But seriously, the most scariest moment you will ever experience is when you walk into that BRIGHT huge Operating Room and they tell you to hop up onto the table. You can see that they cannot wait to cut into you, it's a nightmare. But it is one minute long, and then you wake up, all done. I swear I am thinking clearer than before the surgery because I was all confused about if I was making the right decision to go through with it and how I was going to come out of it (If I'd be dead or laid up for months or what). So forge ahead, go for it and get it all behind you!

NattyNat11
11-21-2006, 03:15 AM
Wow scar looks great! You'll see the hair around it covers pretty quickly. I just had my MVD surgery 2 mos. ago and I have to say I am amazed at how unnoticable it becomes. For those about to have the surgery I wish you peace, honestly don't be afraid. I am on the other side of it and it was the best thing I could have possibly ever done.

sengels
11-21-2006, 10:32 AM
OK, just to show that it isn't all cake and roses, my head is kinda killing me today. :rolleyes: Not in a TN way, the incision hurts and I have a slightly pounding headache that you might get after holding your breath/blowing your ears out and/or a tension-type headache as well. I think after a week of incision healing and vice mark bruise healing, things will be a whole lot better. Right now I am on 2 vicodan and it hurts like a demon to caugh or sit, like you're slapping the bottom of your brain. Plus I am majorly backed-up from all the narcotics, and that system NEVER gives me any trouble. And I can still barely hear out of that ear and it's pretty annoying. Still worth it though... I am going to actually shower and have my little girl help me take some more pictures later. She thinks my incision is cool, and yet luckily she seems to understand you need 30 yrs of school to do such a thing.
Susan E

Fraalan
11-21-2006, 11:07 AM
great to hear good news.
The tinnitis could be gone as your ear dries up
I am 3-1/2 weeks post mvd and my ear is almost dried up and the ringing is almost gone too.
The muscle reelaxers were the best thing my DR. gave me as it helped the neck pain from the incision.

great to hear another success.