Chiari Malformation

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 :)

[shanmomof3]

Hi Izzy and welcome to our little group! I understand your scared and thats ok! I haven't had surgery yet so i cant tell you much there except that being young you will most likely bounce back better than those of us who are older. Have you seen a chiari specialist? Do you know what size your herniation is? Did they check you for csf blockage or any of the other related conditions like syrinx, tethered cord, or EDS? Sorry for all the questions but it helps to know so we know more of what is going on. Again welcome and feel free to ask any question you have. -- Shannon

[selmaS]

Hi and welcome to the Chiari forum.

As Shannon has asked there r many questions that can aid us in sharing info with u...so the more we know of what u r dealing with the better.

How bad are ur symptoms......how long have u dealt with this?


And most important and I know Shannon asked...do u have a true Chiari specialist?...it is very important.

I am also from Pa and I went to TCI in NYC for my treatment and surgery....there is a Dr out ur way in Pittsburg....but , I am sure u and ur parents have already found a dr......

Please share a bit more, and if u look at the zipperhead thread u will read on experiences   members had with their surgery....and u can also click on my name to read my PFD experience on my profile page.

I know how u feel, it is a scary thing to deal with, but u r not alone : )

"selma"

[youngwife]

Hey there, lzzy!

My daughter, with Chiari and Syringomyelia, is 15.  Her decompression surgery was in 2007.  If you have any specific questions for her, I'd be happy to share them with her.  

I am sure that she would be happy to help in any way that she can!

Blessings,

Rebecca

[Izzy434]

Hey everyone! thanks for replying back:) You all make me feel so welcomed! But anyway I haven't seen a chiari specialist yet.. I actually go to see Dr. Tyler-Kabera shes a neurosurgeon in Childrens Hospital of Pittsburgh. Shes a great doctor but i'm just not sure about it.. i think i'd feel more comfortable seeing a doctor who specializes in chiari. I do not know what size my herniation is... And they didn't check me for all that other stuff.. All i know is I have Chiari Malformation type 1. I actually go to see Dr. Tyler-Kabera on Thursay (Jan. 7) Do you guys know of doctors who are specializes in Chairi that would be semi-close to me? And also i have another question.. I have a back problem too. I have to get fusions and stuff in my lower back(L5,S1 and i have hernatied disks)..and i was in rehab/hospital this past april for almost 2 months for it cause i reinjered it.. I still have problems and the surgery was almost 3 years ago.. could my chiari be effecting it at all? I've been fighting this battle for almost 2 years. When it all started with passing out. It's all gotten so much worse the past two months though.. I black out alot, i have trouble swallowing and i choke alot, i have pain in my shoulders and horrible neck spams.. i have pains and tingling down my legs and my arms/hands.. i get headaches alot, but only in the back of my head.. i throw up all the time..i have trouble with my eyes.. i get ringing in my ears.. i always have pressure in the back of my head..like my head feels heavy.  I feel out of it alot and can't keep my balance very well.. i never sleep(lol it's 5:03am right now and i still haven't gone to bed!) ) But anyway.. that's long story short. Anyone who has anything on this let me know:) thank you so much everyone for your help! <3

[Izzy434]

Oh and btw... sorry there is so many typos.. and i ment to say that i had back surgery.

[selmaS]

Hi....wow u have been thru alot....look into Dr Bejjani in Pittsburg.....

With the back surgery u had and the symptoms u describe it sounds like u may also have tethered cord....u may have had it prior to surgery, but more likely it was caused by the surgery...scar tissue can cause ur spinal cord to attach.

Do u have ne bowel and bladder issues?

"selma"

[shanmomof3]

Hi Sweety! I'm so sorry you've had to go through all that. And dont worry about typos! We all do that lol (i dont so much but i use my phone and it fixes them lol) Anyway ... Just from talkin to other people here if you dont find out if you have any of the other stuff before you have surgery on the chiari you will most likely have problems later. JMO Thats why its so important to have a chiari specialist! And have mom or dad look at some of the posts here too because believe me they are scared too. Good luck darlin hope your feeling better soon! -- Shannon

[sherimom]

Hi Izzy - welcome!  My son is 16 and had his decompression surgery almost one year ago. His herniation was pretty big at 20 mm.  His surgery went well and he is doing much better now. He didn't have all the symptoms that you are having, but it's so different from person to person. He did have the horrible headaches and tingling/numbness, electric shock feelings, all those cruddy symptoms. I'm so sorry you have to go through this!  But he did get better afterwards, although there are some ups and downs still, for the most part he is doing a LOT better. He was back to school within 3 weeks. He returned to sports but we have found that wrestling causes problems. So he is on swim team and competitive cheer now instead.

If there are questions you have that he might be able to answer, let me know and I'm sure he'd be willing to answer too. Everyone else has given you good advice here too so I'm not going to repeat it all!  Hang in there....

Sheri

[Izzy434]

Thanks for your replys! and thanks everyone so much for being so nice! and actually selma i do have problems with my bowl and bladder.. i lose control of them alot.. But my doctors said that was because of the chiari. Did anyone else have trouble with that?

[selmaS]

The bowel and bladder issues can be more a indicator for tethered cord, and some with just chiari can have issues as well.

I do have IBS and bladder issues going back to grade school.....so u r not alone with that either.

"selma"

[laratterman]

Hi Izzy!  ... and welcome!  I won't reiterate what everyone else has shared, but you are definitely not alone!  In fact, you found one of the most wonderful places to share your ups and downs.  We all experience this a bit differently, so what one person doesn't deal with, another may, and vice versa.

The only thing that I would add is that your folks need to have the list of questions to ask the doctor(s).  You can find great info on this site... in the "Notes", I believe (Selma or someone correct me if I'm wrong.)  But to reiterate one thing that has already been said, please urge your mom and dad to join us too!  We are all here to support one another and other parents, family members and friends are among our group.

You were blessed to find us early on!  And we are blessed to be able to support you!

You will be in my prayers!

Lori

[chadry]

My daughter who is 14 goes to see a specialist in Delaware at Nemours Children's Hospital or Du Pont's Hospital for Children. He is a wonderful doctor and his name is Dr.Campbell.
Chadry

[redkim]

Hi Izzy, you have been given a lot of good suggestions so far.  I wanted to say that I have Chiari 1 and DDD in my lower back L5 S1 and will require fusions as well.  I do get the tingling back down my legs and have lower back pain.  I had decompression surgery almost a year ago and I feel much better since having it.  Your issues sound more serious then mine.  My doctor told me to have the surgery if I couldn't take the pain or problems anymore.  It was a tough descision to make.

I wanted to have the surgery before my condition got worse because I was told you can get permanant damage.

You really need an MRI to and CINE MRI and a nuerological test done.

Good luck!!

[chiarigirl11]

Hi izzy, im also 16 with chiari type 1. i know how you feeel, how long have u known u had chiari?

[Izzy434]

Hi everyone! So sorry i haven't posted in a while! things have been crazy.. my surgery is Feb 9th.. like 16 days away! augh hah. i know this is going to sound bad.. but i smoke. yeah yeah i know. But how soon should i try to quit? i was scared to talk to my doctor about it. with my dad being there and everything. so i need your help! Please repost. thanks for all the replays. <3

[selmaS]

Yesterday....really asap ....it is something u should contact ur dr via e-mail and talk to him directly...he needs to know as well as ur anesthesiologist.

Contact ur Dr.

"selma"

PS~ please add ur name to the surgery thread part 2

[shanmomof3]

Hi sweety! Good to see you back and Good Luck with the surgery! Now, as for smoking ... AS SOON AS YOU CAN! And NEVER pick up another one! I just turned 35 and I started smoking at your age. I have quit 3 times (each one of my kids) but would always start back. I wish i would have never started! (((HUGS))) Shannon

[Izzy434]

thanks so much!...i havent' quit tho yet :( i'll be okaay if i don't right? i'm not going to die or anything? well i mean, i'm going to try.. starting tomorrow.. hah. sorry. i'm so scarreddd. and selma how do i add my name to the surgery thread?

[shanmomof3]

i'm not selma but just go to the surgery thread and post a comment with your name, date of surgery, and try to get someone to let us know how your doing until you're able to get back on here. Good luck sweety we will be praying for you! (((HUGS))) Shannon

[Izzy434]

thank you! i have another question.. how long is the sugery? everyone keeps asking me and i do not know! my surgeon didn't tell me!

[shanmomof3]

I'm not sure. I haven't had the surgery yet but i know (i think it was selma's) it was suppose to be 4 or 5 hours but ended up being like 7. I think it probably varies depending on the surgeon but i think at least around 4 hours

[Spaceystac]

HI Izzy! I was just readin up on this thread and want to help you quit smoking!!
I am very good with that.

It is much easier to start fresh, after you get some sleep you have already gotten past the first bump of withdraw. I look at it this way, If I smoke now, I have to start the clock all over again and I have already made it this far.  

I quit (again) on May 5 2009, but when I quit it is for years. This time I plan to never smoke again.

After that, just take it one minute at a time and take lots of deep breaths (not too much you dont want to get dizzy izzy!    Have some candy, something to keep your mouth and hands busy when you have a craving.

Keep in mind that the sooner you quit the better, It gets way harder the longer you wait.
Over all your health is more important than anything. Smoking will constrict all of your blood vessels starving your cells of blood. That blood has to make it to every little vein in order to heal it.  This is why you will heal slower if you smoke and faster if you can try to quit asap.

Good luck with this, and your surgery!!! I will have you in my thoughts on Feb 9, that is my appointment day to try to get health insurance  

[Izzy434]

thank you so much! i will try (my hardest) to quit! have you had the surgery?


glad to see that i'm not the only person who can't sleep at night, lol! :)

[shanmomof3]

Insomnia, another great benefit of chiari Lol

[Izzy434]

lol! yes it is

[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.  

[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.  

[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 : )

[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..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]

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

[selmaS]

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

[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]

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]

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]

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

Relax and keep positive : )

"selma"

[Izzy434]

His namae is Jay :) thankssss you :)

[Izzy434]

name*

[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

[shanmomof3]

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

[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

[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"

[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.

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"

[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.

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"

[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.

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.