MVD questions

General General TN & GPN (Old Site)
41

Hi Shindig,

no the plate stays in along with titanium screws, its never a problem with flying because its titanium. Although I did set it off once. They said "Do you have any metal on you, I said yes in my spine and my head but its not metal its titanium so they wonded me, whatever, NP LOL!. Its probably good idea to have someone with you so they have person of contact to call after surgery. I dont know what they told you but generally protocol is 1 day in ICU , they need to monitor yoy after all it is brain surgery, this way they make sure of any cerebral spinal fluid leaks and treat appropriately if this happens. Then once your cleared from ICU you go to a neuro floor and if all goes well in 2 to 3 days you can go home. Thats how it worked for me. I went home in 6 days because my ears were leaking, but I have to say it was not as bad as I have read. Good luck with you surgery and the excitement of being Pain Free yeah!

My Best
shindig said:

@ Heather holy crap, thanks for describing the "real deal". I hate hospitals, catheter....sounds terrible.

They mailed me a packet of stuff, I glanced over it and it probably says what to expect somewhere in it. They included the blood test form to take to the doctor a week or 2 before the surgery.

@TL no I'm in the middle of my last semester and it's crammed, I might have to come back and finish up 2 classes in the next semester, but as of now I'm planning to get through them.

My real motivation was I'm booked for halibut fishing May 29(only a 2 week season) so I called today to make sure I scheduled soon enough to be on a boat 50 miles in the ocean off the WA coast by May 29 at 4am leaving from westport...........hehe

What do they do about the hole in the head, I read they put a plate there? Do they take it out or am I going to forever be destined to make flying more of a pain in the butt? I keep picturing getting hit on that spot and caving it in.

42

I would say that one week is really pushing it. I’ve never heard of anyone being really do e to go back to work at one week. I’m almost 6 weeks post op (in Monday) and I still feel like $@!& most of the day. Good luck though! I hope you get the job!

43

Post op they had me on robs in, which is a muscle relaxer, norco (hydrocodone), and if you are on neurontin or carbamazepine you will continue those for a little while before they taper you down. I can’t remember if they had me on an anti seizure med when I came home or not. The first week home you will probably stay in bed the entire week. I just had a check up with my neuro yesterday and asked her about my exhaustion and she said you can be extremely fatigued just from the surgery alone for one to three months, not even including the meds. Don’t underestimate the impact of the surgery. It is still brain surgery.

44

Many people are off the pain pills pretty quickly, it’s the fatigued that kills ya.

45

Hi Shindig,
I think one week back to work is abit quick, if possible give it more time. First two weeks are rough. Your body will let you know. Remember its brain surgery you need time to get back to your norm. Listen to your doctor and the instructions, pushing ourselves makes healing worse in the long run. There are restrictions when you first go home, hope someone is there to help. You will be surprised when you try to do something initially and your body will say STOP! So please go slow dont push too hard and give yourself time. The better you treat yourself after surgery the less unnecessary complications. Thinking of you as you get ready for the big day. Wishing you nothing but a speedy recovery and positive outcome. Keep us posted when u can
My Best
Joanne

46

I was told no driving for two weeks. I think you are grossly underestimating the effects cutting a hole in your head will have. You can’t concentrate, you’ll be exhausted to the point you can’t get out of bed for probay the entire first week. I’m at week 6 and I can barely get out of bed! My doctor prepared me for the fact that the surgery alone can cause post partum like depression and can cause you to hear strange things. That’s without complications. You need tone more upfront with this employer about what the realities of your surgery may be, and you need to be more honest with yourself about the fact that you are having brain surgery. I pushed myself too hard after my first one and now look at me. You HAVE to give yourself adequate time to rest and heal. It takes neural tissue an exceptionally long time to heal. This isn’t like having an ack repaired or something where you get it fixed, push yourself through rehab, and move on. It’s a very different monster.

47

I admire your gusto wanting to get on with an exciting life post-op. The doctor's office should be your guide as to what is possible for you in your specific case regarding driving and working. There is a possibility, like many people on this website can attest, that you may be very weak for a few weeks, even if the surgery is a 100% success. As long as you have contingency plans for someone to look at after you, family/friend or home aide, you can play it by ear.

I find it odd that a lot of TN websites do not really go into detail about MVD post-op care and expectations. You can't get your stitches wet. You will be weaned off your drugs. Don't lift anything over a certain weight for a week. Take lots of walks. Follow up with your doctor. No cut and dried guides as to how long it will take to recover.

Your scar may freak out your coworkers a week after surgery. You may want your hair to grow back before starting a new job.

Seems to me the fishing trip is a go. At worst, you cancel it, lose some money? Having something to look forward to doing within a reasonable time is great motivation to get better.

What's the worst that can happen if you can't start the job when they want you to? Again, it seems like a great motivation to get better. I think everyone here is a little worried about the risk that you may not be up to starting a new job. You may be just too weak and mentally unstable a week or two post-op to do something as stressful as start a new job.

Have a great MVD!!!!

48

I hope the new job is flexible for you! Especially if you can work from home.

49

Good luck with that, Shindig. The more upfront you are the less anxiety you will experience post- op. you must be pretty smart and strong to have coped with all of this and school as well. That strength will carry you a long way.

50

This is really wonderful! Good going. My daughter works in that industry and so does her partner, so I have an idea how tough and competitive it is, and what a thrill to get your dream job.

I’m a late- bloomer too. Didn’t get my BFA until I was thirty- seven, with two teen- agers. Intense!

You’ll be able to go into your surgery now with only the best to look forward to.
Happy fishing:)


shindig said:

I ended up getting the job and it couldn't be more perfect, I really can't believe it. I went there today for a couple hours and it'll be a new position so the owner is fine with the surgery and said to call when I'm healed up and I assured him it would be as soon as humanly possible.

What's even sweeter is this is my first professional job as a programmer, my work history is all in construction and drywall type trades, programming as a hobby, so it's a dream come true. I went to college my jr and sr years of high school, but got my real estate license and was like, "screw this computer stuff". Then when I moved to Seattle I ended up working construction(decent money) and thinking how I needed to go back to school.

I got laid off a few years ago, enrolled in school, worked as a handyman for money, now it's 3 years later and I got a job as a real programmer at a job I never dreamt existed, using a game engine I love and learned to use outside of school with a bunch of cool technology as input (augmented reality, sensors, cameras, gps) which I could never afford as toys. So it's like quadruple amazing, I'm 29 and didn't really figure out what I wanted to do until a couple years ago. Then once I figured it out I got TN. lol

51

Congrats! That’s great to hear that they are going to be flexible about your starting date. I’m 32 and didn’t really figure out what I wanted to do until a year before TN hit also. I went back to school planning on going to med school. I have one year left on a BS in Biology, but my attacks were just too bad to continue. I tried to go back 4 weeks after my first mvd and it was just too much. I couldn’t concentrate and I was exhausted. I’ve still not gotten back to school obviously with 2 surgeries but I’m not giving up. As soon as I can I’m going back. I’m really hoping I can still go to med school. Even if I’m the oldest damn one there lol

52

Also good luck on your surgery and I hope your girlfriend learns how to cook fast! Lol

53

Hey Shindig.

I didn't get to read through all the posts, but I thought I'd give you my experience. I'm 31. My MVD was in Nov. (I was still 30 then, not that it makes a huge difference. haha)

-I was kept in ICU 4 days with a catheter in all 4 days, but that's because I had a lumbar drain put in.

-When you get the catheter taken out, drink drink drink as much water as you can. I didn't and I got a urinary tract infection. That made things even more painful.

-I was told to stay on all my meds, pain and anti-seizure. Once in the hospital they took over managing it. I know some NS make people wean off. Mine did not. He actually didn't wean me off of Tegretol until 3 months post surgery.

-You really should have someone with you. In ICU they are awesome at checking on you a lot because the nurse to patient ration is a lot better than in other floors. Mine was 1 nurse and aid per patient. It was amazing. When I was in a regular floor I made sure I had someone with me. You don't get as much attention because a nurse can have over 10 patients at a time. (Again, depends on the hospital. My friend was just in one in a city that had 20 patients with 1 nurse. Crazy!)

-I needed someone with me at home for a week. My husband took a week off to be with me and it worked out great because I was pretty out of it. The second week I had family stop by to check on me during the day.

-Unlike others here, I did not have a halo screwed onto my head. I had a 3 point vice-like thing hold my head. I had black and blues, but no cuts. I did have little marks on my face from needles that were stuck to it to check the muscles and nerves of my face during surgery.

-I had staples after surgery. 11 of them. I was allowed to wash my hair on day 6. (I have pictures if you click on my username.)

-You should have also received instructions for showering the night before. I was told no hair conditioner and no lotion on my body. Sometimes they will also give you special antiseptic wipes to use all over your body.

-I was unable to drive for about a month. But I think it has to do with my CSF leak complication. You have to play it by ear.

-Work...I don't work, so I didn't have that issue. But my husband is a software programmer too. He can work from home as well if needed. If he had had the surgery, he would not have been able to work the first week at home. He might have been able to code a little from home the second week but would not have been 100%.

-Lastly: don't push yourself too hard! I did because my TN was feeling so great and ended up hurting my neck pretty bad. Remember, there are a bunch of muscles that are being cut into. Apparently a lot connect to your skull near the area they cut. Muscle relaxers were a life saver.

Oooh, also: a neck pillow was extremely helpful in the hospital and at home. And ice packs were my best friend in the hospital. I couldn't believe how much my neck hurt after surgery. It was due to the position they put you in for surgery. Ask for icepacks even if they don't offer them. They worked great hand in hand with the pain meds.

54

And about the hole they make, with me, the doctor removed the piece of skull and did not put it back in. (He said you have a higher chance of having your body reject your own bone vs titanium.) He put in a titanium mesh in with 3 screws. I've flown and had no issues with metal detectors.

I know your surgery is only in a few days, but I wanted to give you the link to 2 prior discussions in the MVD group that were helpful:

http://www.livingwithtn.org/group/mvds/forum/topics/questions-about-preparing-for-surgery?commentId=2413731%3AComment%3A264741&groupId=2413731%3AGroup%3A27917

http://www.livingwithtn.org/m/group/discussion?id=2413731%3ATopic%3A225141

55

No prob. And insurances are there for a reason. They get enough money that they will get slapped by me for you if they complain. :) Please remind me, are you the one that has a Shwanoma pressing on the nerve? I remember your case not being a straight forward one.

56

I agree about the neck pain and muscle relaxers and ice packs. They actually scraped the muscles away from my skull apparently to get to where they needed to be. Fantastic. Since I still have TN 2 burning on my ear I can’t do heat, but I imagine a combo of heat and then ice would work out well to soothe and help heal. I highly suggest physical therapy. If they dont offer it, ask to be sent. It makes a HUGE difference in healing that neck up quickly.

57

They put my bone back in twice with no problems (except they never seem to get the waxy seal all over it correctly and I end up with a small csf leak. Other thank making me feel off for about two weeks its not a dangerous leak my body will absorb the excess fluid.

It seems that all doctors have differing opinions about everything. My neurologist and neurosurgeon say completely opposite things about gamma knife. It’s part of the reason we really need to get some serious research funded for TN so the scientific community can come to concensus about these things. Right now everybody is just doing the best they can with the information that is available. Especially when it comes to atypical cases.

My two mvd’s have helped some of my symptoms I think, but I have so much pain and burning still its hard to tell what’s what anymore.

I wish you that absolute very best. Just remember, most people who have great successful surgeries aren’t hanging out in an online support group, so this is a skewed look at what typically happens. We are all here because we are still in pain and are looking for an outlet. I hope when you have your successful mvd and are doing great at your dream job you will come back to let us all know about it!!!

58

I just scheduled MVD #3 for May 6th. I don’t want to do it, but feel it’s the best choice. Good luck to you! Don’t push yourself too hard, recovery can be slow. Everyone is different though… Take care!

59

As to #6 : I had my surgery six years ago and just recently found out I have the titanium plate & screws. Every time I would get into a MRI machine or a CT scan, I was immediately pulled right back out asking about the barrett in my hair. I said I shouldn’t be shown as any metal being there cause the Dr. said I have no metal, they just cemented the bone back in. , no metal or screws of any kind. The Titanium in my head does show up on MRI’s and CT scans. Haven’t tried to fly.

60

I totally second all the things Jessy listed plus a few of my own…
Your own blanket is nice to have, too.

I really want to emphasize how important help is. If I had to my MVD over again I’d definitely stay with my mom so I could have help. Don’t be afraid to ask!

Depending on what you do for work, expect to be wiped out. I’m in healthcare and five weeks out from my MVD and that’s waaaaay too soon, IMO.

Don’t be surprised if you feel a little depressed. Post-op depression is a real thing, especially since this was unlike any surgery I’ve had done. Let yourself heal and rest.

Good luck!