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Postby TarilynAlmighty » Mon Nov 26, 2007 9:40 am

I am 17 years old and I was just dignosed with Chiari Type 1 and I suffer from a lot of pain. I need to talk to someone that could give me some advice. Should I have the surgery? What are some helpful things to know? I have done plenty of research on Chiari but still have questions. Thanks

-Miss. Fire
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Postby Janice » Mon Nov 26, 2007 5:16 pm

Hi Miss Fire,

Maybe you should post this in the CM/SM/and other related disorders forum. You might get some responses to your question.

I don't have CM (Chiari) so I don't have any information to provide that would be helpful.

Take care and I hope you find some answers.
GOD Bless!

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4 (Copy & Paste link into your browser)
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Postby Snoozie » Mon Nov 26, 2007 8:34 pm

Miss Fire (great name by the way) just so you don't get confused this is the CM/SM section. Janice may be experiencing brain fog right now. Just kidding with you Janice please don't be offended. We all have it and flaunt it at different times.

I don't have Chiari but hopefully someone will come along with some help for you. Welcome to the board...Sue
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Postby Snoozie » Tue Nov 27, 2007 5:53 pm

How come I am always the last to know HA HA HA HA.

Sorry didn't know but its all good...Sue
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Postby angie7 » Tue Nov 27, 2007 7:42 pm

I have CM, what are some of your questions? Surgery is a very personal choice. It isnt a cure or a fix, but may help relieve some symptoms and it may not. It is a roll of the dice, some win and some dont. I had surgery 3 1/2 years ago and it only helped for a few weeks and all symptoms returned back to normal. But there have been plenty of people that have felt better after surgery. I dont regret having the surgery b/c I needed it or I might not be here typing this right now. So I didnt really have a choice about it.

What is your herniation? Have you had any spine or a cine MRI done?
Mama to 4 y/o ID twin girls (2006)
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Postby youngwife » Wed Nov 28, 2007 6:01 pm

Miss Fire,
Hello! My daughter is thirteen, and had her surgery in October of this year. Surgery is a very personal decision, but if you have any questions please feel free to PM me. I will be happy to answer any questions, but the decision is up to you. YOU must be the one to want surgery.

Willing to help,
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: Questions

Postby JaneMWM » Sun Jan 24, 2010 4:06 am

I'm surprised that decompression surgery is an option. I wasn't really given another option because without it I would have died, therefore I am happy I had it. I guess that doesn't help much. The best advice I can give is

1- find the right doctor. doctors are not all knowing. get second opinions and try to find the best (most experienced in chiari) doctor you can find.
2- be brave in the face of an operation. the word even freaked me out. i couldn't cope with the idea, but in the long run I really needed it and had to face my fate so to speak.
3- Chiari malformations can, in and of themselves, cause pain and symptoms.
4- Chiari can cause things MUCH worse. Syringomyelia is %100 worse than chiari in my personal experience. the first operation I had, the decompression operation, was an average operation. It wasn't fun. It was rather horrible. My recovery was fast though and i had little post traumatic stress. Unfortunately my second operation, to correct Syringomyelia-caused curving of the spine, was incomparable to the first. If you can avoid spinal reconstruction surgery, please do.
5- Spinal damage does not heal. compressed chiari causes spinal damage.

I had a pocket formed around my brain by removing part of my skull. I have some problems with it, but i'm not sure if having the brain cut away would have caused less. Be brave and make the decision that is right for you. *hugs*
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Re: Questions

Postby Sarah in Paradise » Sun Jan 24, 2010 11:25 am


first let me say welcome == I'm glad you've introduced yourself /and feel confident memebers here will be of some help .

I'm more than 10 years post decompresion for acm now --- for me it was clearly a good decision , I"m one of the "lucky " folks who gained more in symtpoms improving =and my worst symtpoms virtually vannishing within a few months of surgery ( it wasn't overnight ) -- I stayed around hoping to "payforward " great help I found through asap's members -and the org.'s efforts .

They promise us the aim to stablise , and finding things improve beyond the point they are at , is bonus time . That said , it seems to me in thinking through all the years , posts =discussions ect . -- that many of us =the greater proportion of us - DO find more than just stablisation of the signs /symptoms unfolds == the bigger group of us DO improve and often leave the group having no more need for suport / they resume their normal lives .

It can leave the posts here somewhat slanted toward those more recently diagnosised , and those with the bigger - more complex situations dominating the post's /discussion --and be confusing or misleading to see mostly just this is my current biggest delima or new problem ==

KNOW that the biggest factor in finding someone IS on the road to improvement == is the expertise of the neurosurgeon involved . while not offical figures by any means -- a few years ago at an asap confrence the presenting neurosurgeons discussed that they then believed about 90% of sucessful decompresion surgerys were carried out by about 15 neurosurgeons in the US each year == the biggest factor they could see /define in patients who'd not had a "great " outcome , was in those who'd had a LESS experienced /less "expert " neurosurgeon attempt a first decompresion surgery .

when we add it IS more difficult in someways to evaluate someone for ongoing severe difficulties AFTER a first decompresion surgery -- it helps make it clear why we say over and over = GET yourself to one of the acm experts ( I call them acm guru's myself = but it's said with serious aim = not ment to be a slight in any sense ) --

THAT one factor = getting their expertise in both IF surgery is needed guidance , and having their experience whilst the treatment is being carried out = IS the biggest decision beyond IF surgery is for you -needed in a true way === and it's the tiping point to finding your improving rather than loosing ground further .

IF travel to a true specialist in acm is an issue = LET us know , most often we can help you find ways to get there .

if you have other specific Q's please do post too = we all learn from each other, and being a bit shy like I can be = just holds me back when I DO need others insight .

hope that this is helpful a bit == I do want to add , that I think it can really help to talk per phone to a couple of us who've been on this journey awhile too== I have unlimmited long distance phone service and would be glad to call you if you send a phone number privatly ( don't post one here = it goes to the "full world " = but use the private message service attached , OR call the asap office asking for a couple folks names /numbers from the peer contact volunteer list =( you may find someone in your area =region of the us too ) -- just being able to dirrect /redirect conversation and hear emotion in our voices ( we hearing yours too ) can often help me feel like we got to the heart of someone's concerns OR got to the bottom of confusion they have much faster --and be a "better " way to gain understanding of their bigger issues /concerns ect too . so please do write with a number or call the office aiming to get ahold of a couple of us -- I think honestly it can make that bigger differance to know they are there if ever needed in an urgent peer way / =and use both to navigate these decisions in the future weeks /months .

Big gentle hugs -Sarah in Paradise CA
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