scary thinking of surgery June 10

I went to the Doctor on the 26th and thank's to all of you who gave me question's to ask which was very helpful, I have decided on having the surgery.  The doctor was very informative and very honest and actually set me at ease on the recovery and the danger's of the surgery.  I am scheduled for surgery on the 10th of June.  It was a pretty scary decision for me, but decided to have it done now before it get's worse.  We all have our good and our bad day's and mine have been more bad than good lately.  Like the doctor said. "Only you know how much more you can handle".  I have 2 grand children who I cherish, and I don't want them to think of having a sick Grandma Linnie.  I want to get back doing the fun stuff with them, and enjoying life again.  I was wonder if those of you who have had the surgery.  How long after the surgery did you feel better.  How long recovery for some of you.  My doctor said since I am in good health other than Chairi my recovery time should be good, and I asked about driving and he said if all goes well. It could be 2 week's.  Is this true.  I am getting really scared of having the surgery.  Please reasure me that it is worth it in the long run....

[*Stormy*]

Definitely worth it in the long run, most of us see some improvements plus the biggest issue is the chance that it will continue to worsen as time goes on. I firmly believe that the sooner you stop the progression, the better chance that you will have relief from symptoms, so I am really happy to hear that you are scheduled for June.

For me, to be honest, I found the first 2 weeks very rough..though I was thrilled to find that I regained a large amount of my leg function. I had a rough time with headaches (more from surgery trauma) and I was quite dizzy and fatigued. When I got to the month mark, I started to feel like I was coming out of it and by 2 months I felt like I had fully recovered from the surgery. I didn't drive till about 5 weeks due to my neck muscles still being quite stiff plus I had issues with driving b4 too and those symptoms were not resolved by surgery. I think that driving at 2 weeks for most of us would not have been possible if we were to do proper shoulder checks!

The advice that I think most of us Zipperheads would give is to LISTEN to your body, only do things that you feel ok doing, and don't push yourself...in fact, err on the side of caution. I found (and still find) that if I push myself to do something, there are usually consequences for that later. I am now about 5 months post op. Take care and GOOD LUCK to you!

Carolyn

[selmaS]

Hi...if u weren't scared I'd be worried about u.,..lol....it is normal and believe  me I was scared too! The fact u have a dr that made u feel at ease is very important...trust in him and u will be fine : )

Recovery will be an individual issue I am 1 yr post op as of yesterday and I am actually feeling better...u know just overall and outlook....I do have other issues and still have bad days, but they r nothing like I had b4.

DO u know if overall u heal slow....than u know u can add time to ur drs estimates...and even if u don't add some time to the drs estimates. oh and keep in mind if u r still on meds afterward not to overdo bcuz the meds put u on a "I can do nething now" frame of mind and u can't and shouldn't....let ur body heal and proceed slowly.

Good luck and post ur surgery date on the thread for the dates : )

"selma"

[jvilletina2]

I had decompression surgery almost a year ago (6/18/09). I definitely think you are making the right choice. One thing that helped me decide to have surgery was when I realized that there was no chance that I would improve without surgery, and most likely get worse.

In hindsight I don't think my doctor prepared me for the post surgical pain I felt. He told me I'd wake up feeling like a dog had bitten my neck. For me, it was a lot worse than that. BUT, it's like child birth, bad at the time but worth the effort long term!

I did PT for several months afterwards because the movement of my neck side to side was very restricted. The PT helped and my posture is now better too.

I guess I'm an over achiever because I just "knew" that I would recover quickly and be up and about in a few weeks. It turned out to be a humbling experience because it took me a good 6 months to feel good again. Even now I tire more easily and don't lift heavy objects. BUT, I'm so much better off than without surgery.

I was very unlucky in that I was infected with a serious strain of bacterial meningitis in the OR so my pain levels and recovery times were longer. Despite all that I would still do it again. Many of my Chiari symptoms disappeared immediately. My balance is still off, some weird minor stuff and my left arm is getting weaker but without surgery I know I would be so much worse by now.

It's a lot to wrap your head around. "Brain surgery" "neurosurgeon" are emotionally charged words. What you're about to do IS a big deal. You are brave to do it. There will be some tough days ahead (but I'm sure you are coping with tough days now) but I support and admire you for doing this. The waiting is hard - keep busy, spoil yourself and let your family spoil you too.

I'll be thinking of you on the 10th from Austin, TX.

[AmyFS]

First of all, best of luck to you!!
I have been thinking about these same questions!  I had my first appt. with the NS last week, and he said that ultimately the (surgery) decision is mine, but of course stated that it will slow the progression, etc.  I have a CINE MRI scheduled in 2 weeks, and then I guess I'll need to make my final decision.  I'm glad you asked the questions you did...I wonder about my 2 small children, work, driving, general "getting out of the house" acitivities....how much time will I be off my feet for,  stuff like this?  Is short term disability (11 wks) going to be enough? If not, is this something that qualifies as a "disability" in the government's eyes?  Will I work again?  Wow, so much to contemplate.  

So far, I haven't really been too freaked out by the thought of surgery (which surprises me!) but every once in a while, I think- holy crap- they're going to cut my skull open operate on my brain- oh my God! So its starting to sink in.
But I've been through some pretty painful things before, and I surprised myself as to how strong I can be.  I guess, like someone mentioned, it is like childbirth.  It may be intense suffering, but it is a finite amount of time, and then the recovery starts. (hey, that was pretty good. Someone needs to remind me of that the day before my surgery, ok? LOL)
As always, everyone's responses here are wonderful.  You are all SO helpful.  

[DAWGS]

If you don't mind me asking how large is your herniation? And how long have you had symptoms? When were you finally diagnosed? Thanks so much!

[*Stormy*]

LOL...I am an overachiever too...I was 100% sure I would be up and feeling fine after a week or two. After all, I was one the move after only a week after all 3 of my c-sections....This surgery was a totally different thing, I was completely humbled by it. I actually had to call people and back out of tons of commitments that I had kept b/c I was sure that I would be fine to do them...

Carolyn

[CorBrenSky]

Im Scared to I think every one does But you know what we are going to do great I just know it . I have been thinking Positive and making jokes it helps me not think about it to much ya know ...And  we are doing this to hopfully better our lives ........if you ever want to take message me when ever since you are going in first i will send you a message to let you know when i get home ...YOU ARE GOING TO DO GREAT !

[zygy]

I was totally terrified too... I agree it is normal and unavoidable!  The worst part for me is that the things I was afraid of were the things I could not even discuss.  It was all of the "what if" type of things.  Even though you are thinking them they don't really get discussed.  I knew my husband was thinking them too but nothing was ever really discussed.  I think it is just that alone feeling in your head.  I had my surgery bumped twice and thought I was going to go insane if I had to do the countdown again.  The last 48 hours were definately the hardest but I am now home and so happy that this is done.  I agree that the best thing you can do is think positive and go for it!!!  It it humbles us a bit than that is fine too... you really need to do nothing to be able to  heal.  Even when they released me they clearly explained that they were letting me go to just go home and back to bed.  I look forward to laughing without head pain though and playing with my kids and I know that no matter how crazy this has been my hopes are that I will spend the rest of my life saying it was worth every second of stress or pain!

[linnielou232]

Thank you so much for your reasurrance in all of this.  I know that each day that goes by it is getting harder for me with just thinking of surgery, but like you say, it is something that we all must do.  It is just nice to get on here in the evening and talk to all of you who can relate to wht is gong on.  My husband can tell when I am having a bad day, and he tries to make me stop doing general thing's around the house, but I keep pushing my self, because as you say we just have to keep busy.  I am thankful that I am working up to the day of the surgery so that does help me keep my mind off thing's.  I hope you are having a good day.

[n40066]

i'm elizabeth and i had by surgery on 11/23/10 by dr. heffez.  to be completely honest with you, i remember very little about the first 2 wks after my surgery.  i had a reaction to some pain meds they gave after i got out of icu and i remember asking what was wrong with my neck and kept clawing at it....and i remember waking up and begging for ice (wanted a coke but they wouldn't give it to me till the second day  LOL) i developed thrush on friday or sat. (had my surgery on monday) and that was quite unpleasant, but again, i really don't remember too terribly much about it.  i was told i asked if he took all my brain out because it felt "empty upstairs"  lol!  and i was told i fell asleep leaning against the wall when i was walking to the bathroom on day 4....lol   fun stories to hear, but glad i don't remember them!  my mom said i never complained about pain, so guess it couldn't have been too bad!  after that, the only time i had a problem was when i over did things.  remember that even though you may feel great and have energy and are tired of laying around, GO SLOW!  it'll bite you in the fanny if you don't!  at 7 1/2 wks post op, i started having some issues with vertigo, chronic nausea and neck pain.  still having the neck pain, but i believe a buldging disc may be to blame for that.  as for the other symptoms, they have pretty much resolved themselves.  most of my chiari symptoms have gone away and the ones that remain, i can live with...not as full a life as i would hope for, but thousands of times better than pre-surgery!!!
best of luck to you and trust that you have made the right choice!!!

[jvilletina2]

Hi Carolyn,
I know what you mean about cancelling commitments post surgery. I'm originally from New Zealand and had a 3 week trip back there with my 2 kids scheduled for end of July (surgery mid June) Surgeon reassured me I'd be fine for it. OMG was he wrong! I think I was still in bed most of the days then. Kids were devastated by the cancellation, especially so close to their mum having brain surgery,and then nearly dying from the meningitis infection. Me, I was just relieved because I knew there was no way I could lift a suitcase, let alone sit on a plane for 12 hours.
I've rebooked the trip and we leave this July 3rd. I'm still nervous about sitting all that time in an uncomfortable seat. My neck & shoulders hurt most evenings at home as it is. Oh well, going "home" is always worth it right??
Tina

[*Stormy*]

Tina I'm glad that you are able to rebook the trip...I hope you have a fabulous time and that the seat doesn't affect you too much. I know with me I have worried about the same things and it turned out better than I expected, I hope it will go the same way for you!

I know, my NS told me that there was basically no restrictions except for not driving until I could turn my neck. It was a totally different experience than that...I really didn't feel even close to myself till 2 months after..and I didn't even have any complications!! I am usually a really strong stubborn person who doesn't let anything get me down so I was in for a big surprise there....it didn't help not having the proper preparation either for how hard it actually was. So even though I feel like it may scare people to hear this, I would have given anything to know this before I had the surgery.

Carolyn