Chiari Online Support Group

Remembering where i came from

Hi Gang:

I was thinking, soul searching and thought I would start this discussion and new folks who have not had surgery and those who are , as I call, 'fresh post-ops' can get my experience and others hopefully will chime in and give theirs.

Here goes..try to keep it short...I am 49 now...had decompression Aug 08.

My Sx's, looking back now..came on gradually...took some Sx's as just Lori being Lori..clumsy.....tripping over my own two feet.

Always had history of H/A's but they were thought to be migraine in nature...then they changed..where the pain began at the base of neck up to the top of head and eyes were so painful.

Then started getting this crazy , rapid heart rate..out of nowhere...sitting there, not stressed out and BOOM.....heart was beating out of my chest....at times this happened while sleeping and woke me..scared me 1/2 to death...but since I am high strung by nature...shrugged it off.

I was always, tripping on my 2 ft. as i said earlier..but what sent me to the doc was I had drop foot..I was dragging my left leg...

My spelling went to heck in a hand basket...I am not kidding..I was still working at this time and I swear my co-workers must have thought I was a complete idiot.

Word finding became a problem...knew what I wanted to say but still said the wrong word.

Hands tingled and cramped up..feet the same. Had to quit my job...I was (what a fancy title for a pion!!) a Donor Specialist...I worked for the Blood Center ..took donors med histories, vitals, ect..then took a 16 gauge needle and grabbed a pint of blood!!! Well...16 gauge needles are huge...it was clear to me it was unsafe for the donors..haven't worked since.

Here is a real weird thing that NO DOCTOR can explain.....before Dx'd and Tx'd...I swear..i would get bronchotis or pnemonea(sp) at LEAST x4 yrly...I should have taken out stock in Levoquin!!!

Of course my PCP said I got it so much b/c i smoke ciggs...makes sense...smoking is stupid..but i confess i still smoke...anyway...NOT ONCE....since my surgery have I had as much as a chest cold...never have been on Levoquin since..(anti biotic)

So much for a short post...sorry....Now the good news!!!

It took many mths for me to see/feel real results...keep in mind that i am the INSTANT GRATIFICATION TYPE...I WANT IT NOW!!!!!!!!!!!!!!!

But time takes time....there was positive improvement.....no longer had drop foot, neck pain was better, mood was better, feet pain took awhile to feel good results but my guess is that after about 9mth maybe even more...the neuro pain in both feet got and is still at least 50% better..some days they are better than the 50% and others worse..ya go with the flow...H/A changed in nature.....more pressure than pain....nausea got better..I have always had an underlining nausea problem....that took over 1 yr to get better.

For me, nothing positive happened immediately...now some folks get instant relief in some areas..for me...I had to be patient....not in my personality...but ya know, throughout this journey , my patience has improved 10 fold!!

I will post more positive results as they come to me....it is funny, for me anyway, I tend to forget where I came from!!! I would rock and cry EVERY night after the kids went to bed.....that is no longer the case...Hey, we all have bad Chiari days...but we have each other too!!

Again, sorry this is sooooooooo long!!!!!

Blessings,

Lori

Lori,

I haven't had surgery(yet?) but I hope you realize how much these "good" stories help. It is so easy to find horror stories on the internet but the successes are harder to find. I have said before that the fact that your lungs improved is very intrigueing to me. I have had asthma since I was 4 but it had never flared up other than in the spring...not even once. Right around the onset of my more severe Chiari symptoms I began to get flare ups of asthma that always now seem to lead to bronchitis. I never put the two together. I went from about two weeks of asthma when the trees pollenate to problems about 3-5 times a year.

I sometimes really want to just say "ok that's it I'm getting this surgery!" but when I am feeling good I think "there is no way I'm getting that surgery!". The docs tell me I will know when it's time. Someone told me one day they couldn't give their kids a bath anymore and that is when they knew. I guess everyone has a breaking point and knows when that day comes. I am looking forward to hearing more "before and after stories"!

Thanks for posting this!

Jen

Lori, you're right; even when we have success, we sometimes have a bad Chiari day. But the good days make up for the bad days, I think. Julie, I think you are doing great - to be nine weeks post opt and be able to be on here is wonderful. I've said before, I slept for about the first five weeks and I couldn't use the computer for several months. It aggravated my neck and my back where they harvested rib bones for my fusion. But - I am older than you all - so maybe that's why! I'm still l8 inside BUT the body is not coooperating. It took me quite awhile to wake up one day and feel normal (whatever that is) or maybe I should say feel among the living.

Jennifer, you will know when it's time. I didn't do my surgery for quite some time and, even after the doctor told me I had to do it because it was not elective, I scheduled the surgery - AFTER my vacation! I guess subconsciously I put it off as long as I could. I did a lot of talking with God in the middle of the night as I was worried about what the outcome would be. Eventually, an on-line aneurysm friend of mine in Holland wrote me that she understood I was scared, but think about how wonderful it would be to be free of not worrying about what might happen if I did nothing. I thought about that and took it to heart and made my decision that I would have the Chiari surgery after I finished with the three aneurysm surgeries and do what I could to make my life better. When my symptoms became more worrisome after a horrific car crash (I was having trouble swallowing and breathing) , I knew it was time and I was at peace with it. Actually, if I had known how much better I was going to feel afterwards, I would have tried to it sooner and I certainly don't think I would have taken vacation first. I knew when it was the right time.....you will too.

Hugs

Shirley

Good idea Lori!!

My before...well I've always been clumsyish. I've always had migraines/headaches that we took as tension headaches as the pain went to my neck. They would get real bad. My oldest sister suffered from ridiculous migraines when I was little. She had so much pain, she missed so much school. They had her on so many different medications (I'd imagine at the time she had an MRI done because of all she went through. I don't remember I'll have to ask) I was somewhere between 7-12 years old when this was going on. She ended up in the hospital because she tried taking too many tylenol to make the pain stop. Anyways..so migraines run in the family. All the women in my family get them bad. So we thought thats what it was. Just migraines. It wasn't until 8th grade when they started getting really bad. I was getting dizzy with them. 9th Grade I had more symptoms...I started waking up with bad head pain and throwing up. Some days my neck wouldn't turn at all. This went on for another year trying differnt headache medicines. I was missing a lot of school in my sophmore year. I was waking up puking every single day from the headpain. I literally woke up, ran to the bathroom and well you know. I had no choice. Finally in April of 2003 my physician ordered an MRI. Thats when they discovered the Chiari. He refered me to a NS. The NS ordered more MRI's and suggested decompression surgery. He told me what I had. Syringomyelia and Chiari Malformation. At the time I was 15. I didn't pay much attention to anything at all about what was going on. I just wanted the pain and puking to stop. I didn't do any research. I didn't look into anything at all. He suggested getting another opinion if we weren't sure about surgery. He told us the % of success for relief etc. Again I didn't listen. I just wanted it to stop. He seemed to know what he was talking about and we went with him. Surgery was scheduled for July 25th 2003. I wasn't scared about getting my head cut open. Just the fact that my hair was being shaved off. lol I was 15 in highschool. After surgery it was the worst month ever. I couldn't keep food down. I couldn't keep liquids down at all either. I lost a lot of weight. I was so sick. I had so much pain in my head. It felt like my brain was trying to come out. They kept me in the hospital for a week and released when when I was able to "keep something down" and walk around the nurses station. As soon as we got in the car and pulled out of the parking lot....I puked. Thank god mom brought the puke bucket. Yeah still wasn't keeping anything down. It took another 2 weeks...I wasn't sleeping from the pain and not eating. My NS gave me something for sleep...which helped the pain. I was finally able to eat. After that I was recovering.

Since then...I will never eat the colored goldfish crackers...lol mom bought small snacks for me to try keeping down...those were one of them...the colored goldfish weren't pretty coming back up. Sorry for the visual.

But I did get 'new' symptoms or more arose afterwards but it's been so much better since then. I have days that are as bad or worse than before...but its not on a daily basis as before. I'm so greatful for this and going through what I had to get to where I am.

-Alicia

Hi..

Just thought i would 'bump' this to the 1st page ...so new members can hear our stories.

Jennifer:

Yes, You will know when it is time to have surgery.....I actually watched the operation on Webcam...surgery was done on a small boy...the doctor answered questions as he went along...I am so happy I watched the entire operation...b/c at the very end he stated something to the effect.."From a NS stand-point this is an easy operation, technically speaking"...That gave me comfort..b/c my surgeon had told me the exact same thing and I was thing, yeah right...you're a surgeon, you 'cut' for a living!!!! I seriously though, was very confident in my surgeon, his P.A. and having the operation..you will know when it is time..we are all here for you.

Hope you are doing well.

Blessings,

Lori

Lori,
I think I saw that video. There is one on youtube. It was hard to watch but informative!

Love,

Alicia