How many zipperheads?

[Shane99]

I was noticing some threads about people that are scheduled to have decompression surgery and it got me thinking; How many of us already have had it? We should make a list. Oh and by-the-by, the term for people that have had it is "zipperhead". I guess like they refer to people with heart surgery as having a zipper in their chest.

I know of a few;

Shane99 (me)
Lovemygirls (who, by the way is doing fine, but having computer problems)
Sissy

[selmaS]

I like the list idea Shane....

[youngwife]

Rachael is an official "Zipperhead"!  She actually received a stuffed animal with a zipper in it's head while she was in the hospital.  

[Hursty48]

That sounds like a great idea. It would also be really comforting if you "experienced" people could write a list of the aftermath of surgery so as we know what we could expect and also what may/may not be normal. I know surgery is different for everyone but its also nice to hear the good and the bad of outcomes of the surgery.

[Shane99]

Yes it can be very different. But I'll mention what I went through:

I was in the hospital for 5 days - ICU for 3 and a private room for 2 (I had the surgery on Tuesday and went home Saturday). My time in the hospital was mostly uncomfortable rather than painful, but I was weak and unable to get out of bed until Thursday. I understand from others that that's somewhat odd - I believe sissy and lovemygirls were walking the floors the second day.

The first couple of days home I was barely mobile; I could walk from my room to the bathroom or living room and watch some TV, but I spent most of my time on bed. My sister (a nurse) stayed with me during the days where my wife could go back to work. After about 3 days I could get along on my own for the most part - I could get around the house and make sandwiches or microwaved food.

I noticed an improvement on a weekly rather than daily basis. About a month after coming home, I got sick. I think it was a stomach virus, but it kinda set me back a little.

It was around 3 months after surgey that I felt well enough to get out for more than just a few minutes at a time.

I'm currently about 9 months post surgery and still have some symptoms. I think my Doctor did a great job, but I was so far along (20mm) that some damage to my nerves from the Syringomyelia had already occured.

[Neicy11]

I am an official zipper head!!!  My surgery was about 2 and half weeks ago.  I did ok.  I was in ICU for 24 hrs and then I was moved to a private room.  My surgery was on the 14th and I went home on the 18th.  They gave me the option to stay another night but I was ready to go home.  I had a nurse visit me at home for 4 visits to check on my progress.  Thank god because I messed up on the pain meds (the nurse fixed me) and I wasnt takn enough and that was rough.  

The first night right after surgery I couldn't move my body at all.  I was able to sit the second day and walk the third day. It was most uncomfortable when they would come in and take chest x-rays or I would go for a CT.  So all went pretty smooth.  I am still stuck with the head pain that the meningitis damage had caused.  That I will have to deal with for life but maybe some other symptoms will disapear.  

I love my NS.  He definately knows his stuff.  Before surgery was scary but hang tough, and after surgery just remind yourself that everyday gets better.  I totally agree with Shane99 that you have to go by a weekly basis because some things take time and everytime I am asked do you feel better or do you notice a difference I'm say ask me next week because this is not like getting a new pair of glasses this is definately a time taker.

Oh yeah I love the way they shaved my head, you can't even tell.

Neicy11

[sherimom]

My son, age 15, just came home from the hosptial Friday. He was in ICU for about 48 hours, dr wanted him flat on his back or on side, for first 48 hours to prevent spinal headache. I have heard different things from other people about laying this way. The first 48 hours were the roughest. He did vomit following surgery which was very painful and scary for him. He then didn't want to eat because he was afraid he would get sick again.  He really didn't start to eat much until day 4 or 5.

He was moved to his own room on the third day with plans to elevate his bed about 10 degrees per hour, which also didn't go very well at first. He was only able to tolerate the first 10 degrees. However, on the 4th morning(when I was really starting to get worried) the physical therapist came in to help him get up and moving. He felt SO MUCH better when he was up!! He walked around the nurses station 3 times that first time.
We came home on day 5 and are now day 9 post op. At home, he still sleeps a lot, but seems to be feeling somewhat better. He continues to have headaches and back/neck pain, that is sometimes/sometimes not, controlled by meds.
He is getting his staples out later today.
I have time off from work, thankfully, and I stayed the entire time he was in the hospital.
Hope everyone else is doing well.
Sherimom

[daisy68]

I am at 4 weeks post op today!  My surgery went very well....I was in ICU for 24 hours and then a private room for 3 days.  I had terrible pain in my head and honestly was scared to death to change sides in the bed because of the pain..but, it was manageable on the pain meds.  I walked the 2nd day...and for the most part did really well.  I drove at 3 weeks and every day of that third week (this past week) is when I have seen the greatest improvement.  ALL of my other symptoms are gone. Thank God! I have incisional pain, and places in my head that feels like fluid is rushing too (especially inthe middle of the night) - I do not sleep well, I think because of the meds, and it hurts at night.  I own a small business, and even though I have a great staff, there are some things that only I can do ( or some clients that only deal with me) - so, I am back at work, but, by 2 I am exhausted ...it is from sitting up for so long.  My recovery is so much better than my daughter was.  She had her first decompression surgery at the age of 7 and it took about 6  weeks for her to stop vomitting post surgery....after her most recent surgery at the age of 8 on Oct. 1, 2008, she vomitted for two weeks, however, once it stopped she started improving and was back at school for half days at 6 weeks.  I thought that since I am 40, it would take me much longer,  but, I think I have tough skin, or else, it is just that I had to get up.  I was in bed for the first few days except for going to the bathroom....until about 4-5 days and then I was moving around better, but, always felt better moving.  I had my mom stay during the day to help me with my children for a week.  I have a follow up tomorrow for a soft spot that I have that hurts.....I will have to post a picture of my hair....so, you can see what it looks like for women for those of you curious. I was worried about the 'hair' thing, but, it grows so fast...that it is amazing...they hardly shaved any...because I had my hair shorter in the back - really stacked right before my surgery....and longer in the front so that it would be easier maintenance and it was!  God bless all of you.

[Hursty48]

Wow and thankyou so much. Yes it is all different stories (much like childbirth in the sense that its all the same yet different experiences - sorry Shane you cant share that one!) It is really comforting to hear how you felt immediately afterward and what you could/could not do - the level of pain afterward - walking and moving about and heaven forbid - working!!!! AND..............best of all everyone of you feels sore but better.!
Oh Daisy68 - I have been thinking about my hair and it being shaved up the back. Its so fine and not much of it - I dont think it will cover the shaved bits as I have struggled all my life to grow hair on my head! When I have photos done I pull it all to the front and leave nothing at the back - I might shave it all off so I'm not doing a "comb over".
Sending warm and healing thoughts to you all everyday and well done to you all - never mind the doctor's skills............you are all the brave hearts!
x Sue

[Shane99]

Yeah, I'm okay with missing out on the whole childbirth thing. :)

I think it's kinda funny that all the women I've talked to have worried about their hair. Getting ready to have your brains operated on and you are worried about how your hair looks? :D

I know, I know, Y'all have been worrying over you hair for a loooong time, but it's still kinda funny, ya gotta admit!

Okay, this is who we have so far - am I missing anyone?

Shane99 (me)
Lovemygirls
Sissy
Rachael (Youngwife's daughter)
Neicy11
Sherimom's son
Daisy68

[Hursty48]

Lol - I hadnt thought of it like that before - brain surgery and we ARE worried about our hair!!! Yes it is funny (weird?) I do admit!

[poohscorner68]

Hi everyone!
  After reading through all this I had to chuckle, as my BIGGEST worry has been my hair!  I am new to all of this, only being diagnosed a few weeks ago, but the thing I have feared the most is having my head shaved.  My hubby said that if I had to, he would to, and that just started the ball rolling, am up to about 10 other people who have pledged to have a 'buzz cut' so I won't feel so awkward.   I know from what I have read, it is up to the individual surgeon how much hair they shave, but I have such thick, coarse hair (that is getting grayer and grayer) that has a strange growth pattern as it is,  that I think shaving the whole head and starting over would be my best bet.??.        It's funny tho, with all the modern advances of medicine I worry MORE about my hair than about someone cutting INTO my skull!

Tracy

[kgrex6440]

Hi! I'm about 7 months out of surgery and I have to admit that hair was one of my concerns too and my dad said the same thing. He was shocked when I said that I was scared people would laugh at me for missing some hair. That wasn't the case, most people thinks its cool that I had brain surgery.  My NS only shaved a section on the back of my head you couldn't/can't even tell that my hair was shaved because the top covers it!   My hair still hasn't completely grown back though and when I put my hair up for softball you can see it sticking out. Its a great conversation starter, though!

[redkim]

Zipperhead here, 3.5 weeks post op.

[redkim]

My surgery was 1-29, I was in ICU for 2.5 days and a regular room for 2 days.  The first two weeks after were miserable, I lost 10 lbs from not being able to eat.  At first it was nausea then I started vomitting.  I went to the ER twice the first two weeks, for a UTI and again for constipation, I didn't have a bowel movement for 13 days and got a blockage.  The five days following were miserable, that was about when I started to vomit.

I am doing better now and am able to eat, but I still get nauseas.  I stoped taking the pain meds because of this and now am just taking Tylenol, which does help.  Right now I am just tired and have to pace myself throughout the day.  Yesterday I went to my art class for the first time since surgery and had to come home and take a nap.  I try to walk everyday, but it makes me tired so I space that out from other things like taking showers which also tire me out.

I have been super emptional and have been crying a lot, but not because of this, but from things on TV I am watching, so I don't know if I am depressed, or what.  Okay, I did breakdown at the two weeks post op visit because I was just so tired and felt like ****.

My wound is healing great, my head is still very tender and no meds ever make that go away, but the meds do stop the HA's.

Speaking of which, when are the HA's suppose to stop?  When can I stop taking the Tylenol?

I am out of work for 5 weeks, but I don't know how I can go back being so tired.  Today I am running some errands so this will be a good test for me on how tired I get...

My hair didn't/doesn't bother me.  I can cover it, even if I wear a ponytail, honestly it's kind of punk rock and am pleased to have less hair to groom right now.  I have super thick long hair, so having less is a relief :)

[Shane99]

Umm, what's HA?

[redkim]

Headaches

[kgrex6440]

I was a little emotional too after my surgery. I would get upset about really little things. My dr said that it was normal because of the physical and emotional trauma.
I am 7 months post opp and I still sometimes get HA but I've been told that I'm trying too hard to get back into sports. I think its pretty normal to have occasional HA even a year after.
Has everyone been really bad with nausea afterward? I vomited only three times, twice in the hospital when they were trying to get me up to use the bathroom and take the cath out and once after the car ride home. I was on nausea meds but it wasn't that bad for me.

[Lovage]

I found out about 1 1/2 weeks before Holloween and was in surgery about a week later.  The docor did not tell me what it was in detail, i had to find out on my own.  I was in ICU for one night and do not remember it much and was in a regular room for 2 to 3 nights.  I do not remember the stay much and do not remember who was up there with me.  We stayed in town the day i got out of the hospital and then traveled two hours home.  Since i have had surgery i have had problems with my eyes, thinking, concentrating, cordination, and balance problems.  I still have my headaches but now they are different headaches and they are not better.  I can not longer drive my self around unless i have someone with me and i'm having a good day.  There are days that i do not even what to get out of my PJ's.  They have considered me about 65 percent paralized now.  I was only 50 percent before the surgery.  I may need more time to heal or the surgery was not a good idea for me.  

[Hursty48]

Thanks for your feedback. Sorry to hear that you have been suffering post op and hopefully you will gradually feel much better. Thinking of you both
X Sue

[redkim]

I vomitted in the hospital two times (when I say two times, I mean two different days because when I vomit I just keep vomiting several times until there is nothing left.

Then the day before my two week post of visit I started vomitting, this was after not being able to eat for two weeks.  I stoped taking the pain meds prescribed and my vomiting is all gone and my appetite is back.  I am taking neasea meds twice daily though just in case because my stomach is still upset.

[Shane99]

I only had nausea a couple of weeks after the surgery. I just got sick and had a bit of a set back.

I still have headaches on occasion. Not as much as right before surgery, but still more than, say, 2 years ago.

I also have a lot of balance and mentally slow days. I'm not allowed to drive at all.

[Hursty48]

redkim do you think it was then the meds making you vomit rather than the surgery outcome? Hope as days go by you are feeling better - do think of you.
Shane99 - you had progressed quite a way when you finally had surgery hadnt you?
If I remember rightly you didnt have much choice in the matter of surgery? Is this why you are not allowed to drive also? Or are siezures a part possiblity post surgery?
Sorry for all the questions.....................its getting close.

[redkim]

I think while in the hospital it was the surgery, the doctor said that it was a good sign that they were in the right area.  Afterwards I am pretty sure it was the pain meds.

[lloyd0307]

I am enjoying reading these posts here.  I have just been diagnosed with Chiari I recently, and now have my surgery scheduled for March 11th.  I have to have another MRI done this coming week, to get more detailed look at things I guess.  But not knowing too much about all of this Chiari, and the whole process, this website has been a good resourse for me.  I have been preparing for my surgery, and trying to figure out if I will need someone at home with me during the day, etc... but in reading the above posts it looks like I should be able to take care of myself, if all goes well!

Does anyone have any experience with Dr. Gregory Foltz at Swedish Hospital in Seattle? that is where I am having my surgery.

thank you for your information.

lloyd0307