Good message regarding CM surgery

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Good message regarding CM surgery

Postby mac » Sat Jun 16, 2007 10:37 pm

I read this post on the CCI website and asked Renee if I could post it here. I know Mary Alice is heading for surgery soon, and others. And I thought this was well-written and thoughtful. Renee said that she is fine with me sharing this here, and I'd like to request prayers for her as she is going in for surgery (CM unrelated) on Monday...

Here's her story:

Good morning everyone!

I've been reading posts and I see so many people at different points
in their Chiari story. (Okay, if they base a movie on it, it would be
considered an action/adventure, heart-wrenching, definately a "chick-
flick" kind of mystery, but hey, that's Chiari! LOL) I know I've just
recently joined, but I feel the need to post this.

Many of you are dreading decompression surgery. I found out someone
was going to be opening my head in September of 2003. I had a four
month old son and I was facing my 30th birthday in three months. I
had lost my father to cancer six months earlier. Life was not going
so well, and so I was at the point that many of you are now. I was
lost, scared, and felt very alone, like I had to do something, but
yet was not able to do much of anything. There was a total of six
weeks between my first introduction to "Arnold WHAT?" and surgery.
Those were the most nerve-wracking weeks of my life. Nuff said.

Fast forward a bit. The morning of the surgery, I felt like I was
saying my last goodbyes to the few family members that were there. I
felt like I was either not going to make it through the surgery, or
at the very least be a vegetable for the rest of my life. (Okay, I
don't know how much of this is normal, but I know it was influenced
by my mother's death in '96, caused by a brain tumor.)

I can laugh now (feel free to join me LOL) but the only thing that
was going through my head was the doc with the scalpel over my open
brain and spinal cord, and the thought, "Oh, please don't sneeze!"
I'm serious!! Stop laughing at me! LOLOLOLOL

But you know what? It wasn't as bad as you might think. From the
minute I entered the surgical theatre, I felt more relaxed than since
the whole saga began. I think because I knew there was going to be
relief at the end of all this. I chatted with the anesthesiologist
(that I know was on top of it when he snapped at a nurse when she
moved something she shouldn't have) until they started the gas. The
next thing I remember was looking up at an upside down nurse telling
me everything went well. (I think they do that on purpose, just to
mess with ya! LOL) The only evidence I had that anything was done
was a pinch at the back of my neck. That was it. At least until the
meds wore off hehehe.

Keep on top of your pain meds, don't try to overdo it, and be as
mobile as possible (you'll be surprised at how fast they get you out
of bed!) and you will do well. Sure, you may have issues down the
road, but the surgery is literally NOTHING compared to the symptoms
you're dealing with now.

I hope this message finds whoever is in need of it this morning. God
has been with me through this, so whatever help I can give to the
next person, I give freely. God Bless you ALL!

Pay it Forward,

Renee in Ohio
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good news on surgery thats awesome

Postby Jenintexas » Sun Jun 17, 2007 7:04 am

I had similar feelings of surgery too. I had a wonderful experience as well too. Its all in the attitude that you take on too. Its not easy but if you keep saying...This too will pass you will all do awesome. I had as wonderful as it can get as far as surgery goes. I have not had a chiari headache. My pain is just where the cut is healing and it is taken care of with meds. Ask God to lead you to what is right for you as an individual and then keep the positive attitude no matter what and it will all wk out. This is wonderful Mac. Thanks for sharing.
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Postby socialdkitty » Sun Jun 17, 2007 12:18 pm

Thanks guys, I have a feeling I'll probably be facing this surgery down the road. I'm so terrified. I'm only 25 and have a 1.5 year old so stories like these make me feel better.
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Postby WeeLassie » Sun Jun 17, 2007 12:47 pm

I'm glad someone had a decent experience and outcome of a decompression. But we have not all been so lucky. The surgery was tough and the recuperation was even tougher for me. I had a couple of complications that made the immediate postop recovery period a horrible experience (I was also off of work for 12 weeks). This was 11 years ago. Even though my symptoms have continued to worsen since then I have delayed a re-do all these years. Looks like I can't put it off any longer. I will have a re-do some time this year and another shunt placement.

I don't want anyone to think that decompression surgery is a walk in the park. We don't all take to the procedure or the anesthesia or the postop recovery in the same way. Some of us may have complications and some may not. I would hesitate to recommend the surgery to anyone just because one's experience was a good one, just as I hope that I don't discourage anyone because of my bad experience with it. This is most certainly a decision that should be left up to the individual, their family and their surgeon. Those who have been there know what I'm talking about.

There are a few comments in the above posts that I take issue with, but I won't comment on them unless absolutely necessary.

Just my two cents, for what it's worth. 8)
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Postby Mary Alice » Sun Jun 17, 2007 10:05 pm

Thanks for posting the message, MAC. I had actually read it on the other forum and found it to be very encouraging. I certainly don't expect all clouds and roses when I have surgery, but I do know a positive outlook going in can influence recovery.

By the way, every time I see your MAC sign-off, I do a double-take! Those are actually my initials and therefore my nickname to a lot of my
co-workers from my most recent job. Lots of times I see your posts and look to see what I've posted! :lol:

Counting down to surgery.....only 9 days left!
Mary Alice
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Postby mac » Sun Jun 17, 2007 10:50 pm

Wee Lassie, I sure didn't mean to offend you and I'm very sorry if I did. I can see where you are coming from, and anyone who has had a rough time of it. And I am very sad to hear that you will need the two surgeries this year. This must be very hard to take. I know you've done all you could to avoid more surgeries, in terms of trying to keep going, having a good attitude, etc. I mean, I guess I don't "know it" but I assume it from having read your posts. I do wish you well on this and hope you will keep us posted on how this is going for you, when/if you do proceed with surgery, etc. I'll be praying for you, for sure.

I didn't intend any harm. It does seem like we always get the "horse wreck" stories, given the nature of message boards. So, I thought maybe one good story would give some hope to folks.

Mary Alice, so you are a Mac too, huh? Actually, my dog's name is Mac and back when I first joined the group, I was particularly uncreative and just grabbed the first name that came to my mind, my dogs! For a user name (Macandquincy). And that evolved to Mac and that name has stuck. You, my friend, are the real thing.

hugs to all
mac
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Postby Snoozie » Mon Jun 18, 2007 1:21 am

I certainly like to get all sides to a story. If all we hear is gloom and doom that may be what we expect. Everybody is different and how they are going to react to surgery is different.

I wish that before I had my ACDF I had known about message boards like this so that I could have gotten both sides of the story. I may have not gone into it as blindly as I did. On the other hand if all I had heard was the bad stories I may have worked myself into a tizzy worrying about it before I even knew what it was going to be like.

Thanks for sharing that Mac. I don't always read all the posts on the CCI site. Wee Lassie, let us know when you are having your redo's done and we will all be saying extra prayers that this one will be better than the last...Sue
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Postby hayla2 » Mon Jun 18, 2007 5:18 am

I definitely needed that this morning, Mac. I am going to the surgeon today to discuss surgery and I too have felt the "Oh God, I am going to die!" I choose to cling to the good report and pray that I have the same experience. I may even print that off and take it with me day of surgery to read and reread.

I have waited and waited and put off the surgery until I had no choice. I don't recommend surgery for anyone unless it's necessary. Now it's necessary.

Thanks Mac for the good report. I like hearing more of the good news than the bad. It gives me hope.

I also get frustrated for those who have had a bad experience. It's not fair to them to have the same surgery and yet get different results.

Melissa
Oh my brain! It is too big to be contained, yet too little to hold a memory. Hehehehehe
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Postby Sandy » Mon Jun 18, 2007 11:47 am

I guess I'm missing something here...is ASAP merging with CCI? Is that why that long post was transferred? If so do those of here at ASAP need to also go to CCI to keep up?

I'm confused here...


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Postby mac » Mon Jun 18, 2007 1:46 pm

No, Sandy, no merging! Just a simple thing of me visiting CCI, reading that post and thinking of all my friends here heading for that surgery and thinking they'd like to read it too. I contacted the author who gave me permission to repost it here (plus invited her to join us here as well)..that's all there is (to paraphrase an old Peggy Lee song!)

hugs,
mac
mac
 

thanks

Postby Jenintexas » Mon Jun 18, 2007 3:38 pm

Thanks for sharing Mac. I think reading the good and the bad is what helped me get to a point where I decided on surgery. Yes every one takes meds/surgery different and every doctor has their own style as well so the results might not be the same for everyone. That is why it is important for the individual to make this choice on their own. The most importand thing is that their are sites like ASAP.org that allow us to get feedback from others and that is a beautiful thing. :wink:
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thanks

Postby prism » Thu Jun 28, 2007 10:06 am

i too, appreciate hearing both sides of the story. i am one who tends to want to trust doctors to be god-like. and these surgeries are nothing to be child-like trusting about.
last year i went into my open heart surgery with such good faith- and it all turned out so bad. i vowed i would noT have major surgery again.

i know it's all very individual, and that having a greaT NS. would be paramount. aside from that, precautions?
for those of you who had good de-compressions and sm/tc surgeries, anything you did right?
for those still vastly suffering after surgeries, anything you wish you had done differently?

many thanks for the accounts shared. :wink: prism
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Postby Debster » Thu Jun 28, 2007 11:46 am

My NS told me that Chiari did not begin to be diagnosed until the existence of MRI machines in the 1980's. So when you think about it, that means that surgeries have only been performed within the past 20-30 years. That's not a whole lot of time or experience in dx or this type of surgical procedure. I guess I am looking at it as though we are kind of the patient pioneers for this condition. Therefore there are going to be some that experience success, while others are facing re'dos, or still suffering with symptoms.

I am grateful for posts that celebrate the success of the Chiari surgery, because it makes me feel less anxious. However....I am also grateful that for those that feel comfortable and safe enough to post that they have not had the same success, since it helps me to address concerns with my doctor if I ever become a surgical candidate. I guess what I am trying to say...is that I just love you all and am grateful we have a place we can share our stories whether they are negative or positive.

What is this other site...CCI??? Since I like to read as much as possible to keep myself informed, I would love to know the web address or link to the site. The more information I have the better. (ASAP will always remain my favorite though, because you all are the best!)

Deb
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Postby mac » Thu Jun 28, 2007 11:56 am

Deb, here is the link to CCI...the message board. You might have to join it to view, I'm not sure, but that is easy and well worth it.

http://health.groups.yahoo.com/group/Ch ... l/messages

I ditto your last remark about asap...this is a very very special place!!

Here is the website for CCI, there's also a lot of good info here, including expert doctor feedback on various questions.

www.chiariconnectioninternational.com

check it out...

mac
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Postby Debster » Thu Jun 28, 2007 1:28 pm

Thanks for the links......

As the young kids say, "you da best Mac!"

Deb
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