Chiari Malformation

[Izzy434]

Hi everyone! I'm 16 and I have Chiari Malformation type one. I just wanted to know if anyone has any advice on the surgery.. and how effect is it? I'm just totally lost! and scared! and would really love some support. let me know.. thanks :)

[selmaS]

  Hi and welcome  to the Chiari forum.

Thank u for sharing part of ur chiari journey with us and I want to wish u all the best with ur new addition.

I hope u continue to post on ur progress with ur pregnancy post op as that is one question that many ask about but we do not have many that r part of the forum at this stage.

[sapballet]

I have had the surgery and it has made my life completely different. I used to be in constant pain with a spinal headache every day. Toward right before my surgery I became numb, cold all the time, just overall sick. This surgery has made it so I can actually live life again. Yes, I am not going to lie it is scary but if you get a really good doctor it will make a huge difference in your life. Make sure you take the time to find a good doctor. This decision is very important and if done right will allow you to enjoy your life to the fullest. Since my surgery I have gotten married and I am also having a baby in september. I wouldn't be able to do what I can now without having the surgery . Good luck on your decision and I hope it all works out for you.

[selmaS]

  Hi and welcome to the Chiari forum.

Yes I had this surgery 2 1/2 yrs ago...and I am glad I had it...I was having drop attacks and one fall left me with injuries that required 2 surgeries to repair.

BUT slow down...not all with chiari r surgical candidates and u want to take time to find the right Dr!!

We do have a list of Drs for u to use to research...the list was compiled by the members with names of our Drs...the list is not a referral...only a means to help u get started with ur research.

http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

I understand ur frustration....u can go to most of our profiles and read our journals of our surgical experiences...and see pics.....just click on our name (blue hyperlink)

  And feel free to ask questions that is y we r here : )

          "selma"

[deadmemory]

I went in to my local hospital back in 2010 with symptoms of meningitis (horrible headaches, stiff neck, dizziness) and had a lumbar puncture. The findings were blood in CSF and it wasn't as clear as it should. Upon those findings I was admitted. The following morning I had an MRI and the resident m.d. and radiologist said they saw "something" that was abnormal in my brain. He never specified what this "something" was. It has been nearly 2 years now and my symptoms have gotten worse. I'm dropping everything, I can't walk straight, my perfect vision has deteriorated, and I am nearly deaf in one ear (right side) my head and neck hurt daily and now I have lost more than 75% of my strength in my arms/legs. I developed diverticulosis and medullary sponge kidney. My gallbladder stopped functioning and bile started backing up into my liver (had gallbladder removed 9-1-11) I went back to ER on 9-26-11. I could no longer handle the pain. I had a repeat lumbar puncture. The findings were the CSF fluid was cloudy and it wasn't coming out the way it should. (Too fast?) Not to mention the dr who performed this procedure was an intern and kept hitting the bone with the needle. Very unpleasant!!! I was admitted again and the dr ordered a ct scan. Before the scan she told me she looked at the MRI that was performed in 2010. She informed me that I have chiari malformation and I needed to see a neurosurgeon. I told her I was never informed of this and never heard of this chiari.. she explained what it was and I was terrified and furious! How could they have kept such important info from me? I have the right to know what is causing me all this pain!!! Well I had the ct scan (which my neurosurgeon said that was pointless and he scheduled a repeat MRI this coming Wednesday) today (10-7-11) I saw my pcp. He informed me that I have a 7 mm tumor on my thyroid. (The hospital never informed me of this) and that my thyroid levels were low. I am so frusterated! I'm 26 years old and my daughter is barely a year old. Most of the time I'm afraid to hold her.. I had to have my mom come move in with me to help with her. I am facing the surgery, and I am scared. Has anyone else had this surgery.. can I get some insight? Thanks and God bless!
Krystal

[selmaS]

Hi and welcome to the Chiari forum.

I am so sorry ur DD is having to deal with this, and u as a mom, I know this is not easy for u as well....

We do have a list compiled by members of what to ask the NS when u go-http://www.medhelp.org/health_pages/Neurological%20Disorders/Questions-for-a-Chiari-NS/show/1155?cid=186

It is  in the Health Pages for easy reference I included the link.

The fibro link I think is an add on when they r not sure how to explain much of the pain we endure...I was dx with fibro, but yrs later when I finally got my chiari dx, the ns said it was more likely my pain was from yet another condition I had not known about...Ehlers-Danlos...which is good to know b4 surgery as it can and will affect the way the surgeons handle ur DD and how she heals.

And a BIG YES to the emotional moods swings...chiari affects the brain stem which is our nerve control center...which we can lose control of...many functions...balance...so y not moods, behavior...yes, it has come up so frequent that it is not doubt in my chiari brain that it is indeed a factor...in fact the more pain I am in, the moodier I become...I am aware that I am not the nicest person...I have to step back.,..but, chiari has taught me how in that when I step back I do not get the big HA's after a rant...lol...

And thank u soooooo much for ur well wishes for the members here it is very much appreciated : )

We r happy to have u join us, but we r never happy about the reasons that bring people here.

"selma"

[Raindancer2010]

We just got the MRI results she indeed has CM. We are see a Neuro surgical dr. What questions do I ask, to get the best care for my daughter? She does live with me as well as my grand baby. I'm the only one working. I want to be prepared, need to know what is the post opp? What preparations do I make? Basically, what can I do to make her comfortable? What is recovery time? General, I know this varies from person to person. She is only 20, has anyone been diagnosed with fibromyalgia as well? If so have you heard of this CM procedure curing fibro? I really appreciate any and all information. I want to go in fully loaded and prepared with questions before allowing any physician open my daughters spine/brain up. May everyone here recover, may your life better for the good and I'm truly wishing everyone the best. I don't want to offend anyone with religious sayings so I hope you read between the lines and hope the agnostics saw the good in my wishes. :-). Thank you any information and the time to answer my questions. Oh, 1 more very important ? Has anyone experienced mood swings, emotional behavior with this? I'll give my theory after I read question. I believe thus far, this explains my daughters emotional roller-coaster ride, not to mention the pain, loss of sensation, limitation of head movement, erratic spells of ups and downs. Sounds familiar to anyone? Again Thanks for your advice and or help!  

[selmaS]

Hi and welcome to the Chiari forum.

May I ask was ur DD ever looked at for tethered cord or a syrinx..either can affect her bladder.

I am so glad ur DD has been doing so well aside from this more recent issue.

"selma"

[SuperMommy21503]

Hi Lzzy

My 7yr old daughter had the surgery last year. she  has been doing great! God is so good! However, recently she has been losing control of her bladder something she has never had a problem with since being potty trained. This  is  what brings me back to researching CM. If your Doctor is recommending surgery...do all your research (with your family) on the  surgery and  the medical team involved &PRAY pray PRAY.

be blessed and good luck

Michele

[shanmomof3]

Izzy, you are in my prayers! You'll be fine sweety! (((HUGS))) Shannon

[Shane99]

Hello Izzy. I'm a zipperhead (that's a person that has had brain surgery - because of the scar it leaves kinda looks like a zipper). I had the surgery almost 2 years ago. I'm glad I did and I encourage others to have it.

You'll be fine. The first week or so is pretty rough, and I'm not gonna lie to ya, there is pain involved, but it will help a lot over time.

Good luck

[Izzy434]

name*

[Izzy434]

His namae is Jay :) thankssss you :)

[selmaS]

Thanks for the heads up...what is ur BF's name?.....

Relax and keep positive : )

"selma"

[Izzy434]

Well, Everyone my surgery is tomorrow! I AM SO nervous! Words can't express it! I'm never going to sleep tonight! But my boyfriend will be getting on here to let you all know how i am doing :)thanks everyone, take care!

[selmaS]

I do know what u mean.....and if u were not nervous I would be scared for u...it is normal to feel like that.....Did u post on the surgery date thread?Also, please have someone update us on how u r doing.

And know we will all be praying for u and sending u good vibes : )

"selma"

[Izzy434]

yeah, it was supposed to be tuesday.. so they just moved it to next tuesday. i guess the insurance issue will be fixed by then (i'm not sure what's going on there my mom does all of that! hah.) Yes we got it fixed. The bad thing is that it's still close! hahha. just my nerves talking!

[selmaS]

Did u get the insurance issue straightened out?.....the fact u still have a surgery date is good...what is the bad?

[Izzy434]

Well, my surgery is now feb 16th. Because of insurance issues.
:)which is a good and bad thing!

[selmaS]

Hi Izzy..since u r a minor child did ur parents look into CHIP?It is a state program...I am not sure how long it takes to process, but maybe ur state rep can help get it pushed thru faster.

Good luck

"selma"

[Izzy434]

Okay. totallll bul****. My doctor called today and said that they can't do the surgery unless i have health insurance. Which I don't. Does anyone know what we can do or anyone we can call? We have till tuesday. I don't know much about it. But my mom does, we live in Johnstown PA. My doctor said the surgery is still on but i have to figure out the health insurance issue... PLEASE help. I just think this isn't fair. my whole family has called off for this and they've had me anxious and nervous for 2 weeks. I just don't know. help?!

[selmaS]

HI Izzy...sorry I was not on sooner to answer ur question....here is the link to the surgery date thread

http://www.medhelp.org/posts/Chiari-Malformation/LIST-YOUR-SURGERY-DATE---PART-2/show/775669

Please have some one pop on to post updates for us : )

[Spaceystac]

Im sorry that you throw up alot, that must make your head hurt way worse. For some reason I am nauseous alot of the time, but I havnt puked in years.  

[Spaceystac]

No surgery, or Chiari. I am just a  night owl in WA so it only 12: something here.

I have something blocking the  csf, and it is causing a syrinx (syringomyelia) in my neck. I also have cysts on my S2 and it causes issues with csf flow as well. I have some bladder/bowel issues, DDD DJD, the list is long, but no diagnosed Chiari. My Mri looks alright to me, but im not a radiologist (yet). It looks like my cerebellum is pushed up against my back of my head, so there is no csf flow.  

[Izzy434]

lol! yes it is