Chiari -ACM (anyone)

anseay

Great news/ I'm so glad to hear it.
Nothing new here other than I found out that the cycst has grown from 1mm to 2.7cm
I don't have an appt. with the Dr. till thursday and the another one on Jan.6 with the neuro. After tonight I have 4 more injections of rebif and I've desided not to refill it. I'm not going to do anything else until I find out what is going on with my liver. wishing us well and great on the possitive news

kirafaye

hey nothign much else to add except to wish you a very merry xmas!!!! and hope you have a pain free and great holiday!!!!

AlbertaCowgirl

Hello. I've only recently joined this board and thought I'd drop you a line....

I have both Chiari and MS, so if there's anything I can help you with, or you just need to talk, please feel free to ask.

I had the decompression surgery in '99, and though I still have symptoms from both conditions, the surgery was a lifesaver. I went from part-time wheelchair bound and unable to work or function normally, to a happy, busy, productive member of society. I work, run a horse farm, and am a single parent raising two beautiful children.

I do have to take fairly high doses of pain medication and muscle relaxants on a daily basis to deal with the chronic pain, and probably will for the rest of my life, but that's OK - at least the meds allow me to function.

Good luck with your upcoming surgery!
A.C.

kirafaye

thanks- we are hoping ot hear the date in the next week.....did they ever talk about a shunt for ur SM? mine is extensive and goes from C2-T10 and the neuro said there is a possibilty but the surgeon didn't seem to want to think about it just yet.

AlbertaCowgirl

Hi again. The possibility of a shunt was one that was presented to me as something that would be determined during the surgery.... and in the end, I didn't need it.

I do have a fairly large syrnx which has never resolved after the decompression, and they talked for a while about putting a shunt in for that, but a Cine MRI showed that my cerebral spinal fluid was flowing fine, so it wasn't needed.

I guess if the shunt is required, they will cross that bridge when they come to it....

Please let us know when your surgery is booked!

A.C.

kirafaye

ok thanks oh and please someone tell me when its booked in!!! hopefully they'll bloody tell me cause the further back they put it the harder it is on ym life cause I have to find a new place to live so got the entire movign of house and studying for exmas so I'm getting fristrated...plus there is going back to uni and organising work!! I can just see it beign placed the week all of this is happening!!

kirafaye

anseay honey I haven;t heard from u in awhile.......I'm abotu to check the ms forum but I'll leave a message here hoping that ur alright *hugs*

anseay

Hi Kira,
I'm hear, but I had to stop the ms meds. because all of my liver functions went 4 X's above the limit. I was alittle worried about the b-12 thing being at 1566, but the new neuro. says that's great. They are talking about trying me on capone, or whatever, but I get the ms news letter and read somewhere that it doesn't work. Thank goodness I never deleate anything like that so I just print it up and take it with me the next time I go to see him. I'm glad to see that you are getting intouch with people with the same problems your having. I know now that you are probably not as lonely and the great possitive feedback has got to help. I hope you had a great holidays.
I was thinking about you alot. this is the first time that I've actually been on the computer in over a week. I couldn't beleive it 25 e-mails. Yours is the first I've answered. Hang in there kid, I know the moving thing. Man it's a pain in the butt. I hope they'll go ahead and let you know something about the surgury. I be answering your post to me here. This is where you need to be not at the ms. Like I said I'm HEAR!!!!!!!!

kirafaye

Hey glad to hear from u, u had me worried cause u were having problems and then dissappeared. Well my surgery shoudl be next week but he wotn be back till next wseek and hasn't organised anything!??!?! Moving is takign abit out of me Iv doen stuff to myself I really shouldn't like hitting the back of my head while packing my car (very not good for my condition) and today I was goign downstairs whiel I was half awake and fell down them, thank god I was half asleep cause I woudl have seriously hurt myself if I had of reacted instead of just flopped everywhere. oh well I seem to be abel to move what I should....

anseay

Well I'm gtlad that you didn't get hurt and I'm glad that your surgury has been schedualed. I'm sure that everything is going to be just fine. Well I finally had to go to the hospital yesterday morning, all of the ms symptoms had come back in full force by yeaterday morning and was to the point where other people were saying the words I couldn't find and when I did open my mouth the slur was like I was on one hell of a drunk, pretty cheap one to with the dizzies, HA HA, The neuro was on call at the hospital, I know what on call means now with a neuro. they are at home and answer a phone call. HA HA. Well after a nice 2" needle in the tush of dacaron (sp) and a script for prednisone and vicidon I went back home. Then the liver started with the pain. I stayed with friends so that if I had to go to the hospital someone would be on hand.
Punch line to that one is that the friend that I stayed with his brother is engaged to a RN. Drunk, ho my gosh I thought that I pulled some but this women goes through a gallon of wiskey in 2 days. I know what it is now. I have her liver problems. They are talking about starting me on copaxon in a few weeks. We'll see. The house that I had that I was doing so much work in I lost because of the taxes, no money for them, and the slumlord that I was getting it from went in and changed the locks, There's nothing like throwing 27,000.00 out the window. Ho well life goes on but you've got to admit, it's one hell of a tax write off. It's ok, I'm glad that I don't have to worry about the responsibility of it anymore. I have 2 renter fighting over this house that I'm in for when I get moved, I think it's enough. Only other thing is thatmy disability was turned down so I've called three attorney and the first to call back win's, gooing in under an appeal the feds, or states will owe me at this point 9,000.00. I like it as the months roll by. It just keeps building. Take care I'm still hear. Wishing you well sweetie and once again let me know about the surgury. If you can't let me know ask your mom to let me know how it went. Hang in pin pan!!!!!!!!!!!! Now go have some fun!!!!!!!

lindao1

Hi Kirafaye!

I hope I'm not too late! I just now noticed this post as I'm usually on the Pain Management board (but not because of the Chiari Malformation, I promise).

I had the surgery in 2000. At first the drs. suspected I had M.S. But an MRI showed it was the Chiari Malformation Type I. There are two forms of it: type I and II and the Type I is the "easiest" to correct.

My malformation was a biggy - the neuro. said it was the worse case he had seen. Just my luck - ha! I have a 9 inch scar from the occipital region down to T-1. My symptoms were severe dizziness (really bad and constant), excruciating headaches and neck pain, numbness and tingling in extremeties, falling down for no reason and ultimately blacking out completely. Also, I remember I kept saying, there's something wrong with the right side of my head. When I started blacking out, then I had no choice but to have the surgery. After surgery with general anesthesia, I was in ICU for one day and night, then transferred to a regular room. I'm not gonna kid ya and tell you it was an easy surgery. It was not. The pain was quite severe but controlled well with pain meds. They lifted my shoulder length hair up and shaved my head underneath. I went around with a really weird haircut for awhile, but at least I didn't need a wig LOL! The back of my head was bandaged up quite a bit and it felt like I had a hugh, puffy pad on the back of my head. Needless to say, I couldn't lie or sleep on my back. Believe me, you don't want to! Anyway, after 4 days in the hospital, I begged the dr. to let me go home, saying I could be this miserable at home instead of couped up in the hospital. He said I broke an inpatient record for brain surgery - discharged in four days! I was sent home with pain meds, valium and phenobarbital. The two most common complications from the surgery are seizures and meningitis. Fortunately, I didn't have any seizures (they had me on the phenobarbital from day one) but I did have the complication of meningitis after being home one week. It was viral meningitis meaning no antibiotics or treatment. It just had to run it's course. No fun, but it didn't last long. I turned green a few times according to my husband but not much worse than that. After I was home, it seemed, if I remember correctly, that I had significant pain for a couple of weeks but it let up after that. And as I said, it was well controlled with the pain meds and valium. I stayed on the pain meds for about a month and after that I was OK. Two weeks after surgery, me and my weird hair cut even started going for walks with my dog around the neighborhood. Weakness was the last thing to get better. I was weak for awhile. Of course any surgery will do that to you.

Oh by the way, the piece of bone they removed from the back of my skull was not replaced. Now I have a "squishy" area in the back of my head. It stayed numb for about two years. They warn you not to use a curling iron or heat back there cause you will burn it and not realize it. It's common for them to leave the bone out. I joke and tell people I really do have a hole in my head - hee!

My dear, I hope I've given you some insight into what to expect and I certainly hope I didn't scare you. Brain surgery is no picnic but you will get thru it. I had the best neurosurgeon in my area to do the surgery fortunately. And as brain surgery goes, it wasn't as bad as I expected it to be. Naturally I was nervous before the surgery but they gave me something that made me real "drunk" until I had the anesthesia. At that point I didn't care - ha!

I wish you the best of luck and a quick recovery. If I can make it thru this mess, anyone can! If I can answer any more of your questions, please let me know. You'll be over the surgery before you know it! God Bless. Linda

kirafaye

Yeah it helps alot cause yesterday I got my surgery date its the 28th of this month (anseay yea!!!!!) it helps to be told what people go through so u dont get a shock, just a question how logn were u out of work for? and did u have syringomyelia? cause I have severe cases of both, my chiari is like 22mm or as such. I'm not worried about the surgyer, more the gettign back to work cause I live out of home. anwya I must be off but thanks a bunch for ur story it helps alot.

lindao1

Hi Kira

Glad I could give you a little insight into what to expect. I know "fear of the unknown" is difficult to deal with.

No I did not have to deal with syringomyelia. I was blessed in that respect. As far as how long I couldn't work, it's difficult to say because two months after the Chiari surgery I had neck surgery. I was dx'd with both problems at the same time and they wanted to do the brain surgery first cause of my blacking out. I could only guess that if everything went well, with no complications, you could return to work within 2-3 months, maybe sooner. Everybody's recovery is different. If I didn't have the neck surgery afterward, I think I would have been able to go back to work in about six weeks. But that's just a guess on my part.

Glad you finally have your surgery date. I wish you the best of luck on the 28th and I feel certain, once you have the surgery, you'll feel like a new person. Good luck, Linda

cleopatra`

Hi all
I have ACM, I had decompression surgery last august. There are lots of web pages that explain it, just type Arnold Chairi type I malformation into the search engine and you should be able to find lots of information. I'd give the web page but I believe they don't want you to post web pages here.
they thought I had MS prior to my MRI, as things progressed the symptoms got really bad, but since the surgery a lot of my symptoms are either gone or much improved.
hope that helps.