SURGERY #3 at CEDARS SINAI For CHIARI MALFORMATION

[StephanieRising]

Hope you're doing well. What a champ! i was diagnosed in 9/11 after 3 yrs of significant symptoms. Having surgery asap after the new year. Considering all the risk, wish there were a way to avoid this but symptoms are getting worse. Thanks for posting so others can have an idea of what to expect.

[danumm555]

@StephanieRising

I am concerned that in the US, surgery seems to be routine for Syringomyelia. Here in the UK, I have been told by a neurosurgeon and other specialists that it is dangerous because the spinal chord is involved and can cause blinding headaches for months. Also, there is no guarantee that the symptoms will not reappear. In a system where doctors make a lot of money from surgery, can you trust them nto to be carrying out unnecessary treatment? At least in the UK they have no bias.

[pcs1rxf]

thank you so much for sharing your story......I hope you are doing better. My mom is 61 and 4 years ago they diagnosed chiari but she only had some symptoms. Now 4 years later her symptoms are stronger, wednesday she is going to the doctor again. I hope she doesnt need the surgery.............we will see what happens....thanks again!....I will keep you posted....Rudy

[StacyStacia]

Good luck to you. My brother was 33 when he was diagonosed, had 2 surgeries. He suffered for 10 years with this. His Chiari was extreme and he recently passed away, he didnt want to have any more surgeries.

[motorsportstuning]

Man I just found out I this disorder =( I'm going for surgery soon.

[canadianwing]

I am 3 months away from my first decompression surgery. you really share a lot of info that I been seeking for. thank you and may you stay strong!

[lysmarisanchez]

I had my chiari surgery last August 2010. Before and during surgery my family, friends, and church prayed for me. during surgery my oxygen went low. When I came out of surgery and passed to my room my surgeon asked me how I was and I told him I waas fine just tired. The next day I was walking and eating but dizzy and the day after that I got sent home because I was doing great. A week after surgery I was completely normal. It was painful but I made it and only needed one surgery :)

[breckur1200]

Thank and can you still do all sports. Like swimming or soccer?

[raulandmichele]

Thank to everyone that has sent some much love my way.. it's been 3 years since my 3rd surgery. Although I am no longer leaking CSF any more I still suffer from headaches on a daily basis. My I stay strong through the love of family and friends. I pray that all of you that have gone through surgery recently that you will not have to have has many as I did. Thank you again for all your support everyone has a lot to do with my recovery :)

[tammydoll1]

@raulandmichele my name is Tammy and I have been suffering from complications from my surgery 6 years ago. I am now 41 years old and I can relate to you. just helps to know there are people out there that you have never meet but can still touch there life. thank you for sharing you story.

[breckur1200]

I'm getting my surgery in 5 days. I'm very scared and hope that everything goes ok. I'm 10 and just am thrilled that you had to go three surgeries. God bless you.

[raulandmichele]

@breckur1200 I am so sorry to hear that someone so young has to go through this. But I know that everything will come out perfect for you. I hope you have a speedy recovery and my prayers are with you..

[kayleebabyily]

i want to thank you sooo much for posting your experiment on youtube i am really nervose i am haveing surgery on jan 5th and i am 14 and very nervose i hope every thing goes rite aand they only needs to go in one time

[kristenbyas]

God bless you for going through more than 1 brain surgery. I had neurodecompression surgery on 10/26/10 to correct Chiari. I pray I don't have to do it again. It's no fun. I'll be praying for you and your family because I know very well what you are going through.

[RomeroB35]

I was diagnosed by an ER doctor as having Chiari Malformation and he said it was nothing to worry about, so I didn't. Eight months later and I have had bad headaches,hands are weak, numbness in my right leg, vomiting, dizziness, hard time sleeping, ringing in ears, chest aches, vision off ,weight loss, neck stiff and shoulders hurt which the doctors say are not related to Chiari, yet I am getting worse. Has anyone else had this issue with their doctors shrugging it off? I am type 1.

[kristenbyas]

@RomeroB35

I had the exact same experience except additional symptoms like loss of balance and headaches were an understatement. The surgeon I was originally referred to gave me the run around and I was hours away from death. Thank God I was introduced to another surgeon who practices in another state. My mom drove the distance to see him, and I went into emergency pre-op right after my initial visit with him. Surgery was a few months ago, and I pray I don't have to do it again.

[michalmadisonart]

michele~ thank you so much for sharing! i also have syringomyelia with the horrible headaches & vomiting & sometimes not being able to walk because of the headaches. i cried when i saw your video. i'm so sad you've had to go through all of this, but thank you for sharing because it helped me to not feel so alone.

[PezzQT]

I had my decompression in March of 06, Best thing I ever did!

[nickynippls]

I will be going in for my sixth surgery on sept 30th. I had decompression, tethered cord, cranio cervical fusion, wound debridement, cranio cervical fusion removal..due to ongoing infection..and now going in for a cranio cervical fusion reinsertion and hopefully they can fix my cerebellar prolapse. My cerebellum is stuck to my dura. Thanks for sharing..do you have a facebook?

[Coolcow6]

My mom passed away in October because of this malformation. She had dozens of surgeries before she died at the age of 44. If you google "Arnold Chiari Malformation Kelly Morrill" you will see everything she went through to help others with this terrible disease. She made a movement to educate people about this and i pray that everyone will do what they can to help people with this problem and i hope that those who already have this will find a way to get better so they dont have to loose someone

[juliagoolia77]

My husband had a 9 mm herniation. He had the decompression surgery at University Hospital in Cincinnati OH. Dr. Tew was his neurosurgeon. He went back to work after 8 weeks. We took a vacation after 6 weeks. He is doing so well, he played tennis today. I highly recommend the Mayfield Clinic, especially Dr. Tew. He has no more headaches and no more numbness in arms and legs. Thank God! There is hope for people suffering from this. Don't give up.

[annete1714]

Hi Michelle! I have the same problem! and i'm being treated at Cedars i went through the 1st surgery and things just got worse so now their telling me i have to go through another! Who treated you? i am being seen by Dr. Black and Dr. Schievienk and i dont know what to do anymore. now i have back pains along with severe headaches!

[URCNFUN]

I go in for my decompression on May 6th 2010. Thanks for posting your videos. God bless!

[OmizTee]

well i iam goin back in again on monday 8th feb 2010 for my 5th surgery im having a switchable valve fitted on the lp shunt i had fiied last year. This is my finally hope before havin a shunt fiiited 2 my brain. Let me know how your 3rd surgery went as i am still suffering servere headaches & blackouts. God bless all who are goin through this illness mwah x

[tbjulian1]

Did the 3rd surgery work?  Are you better now? Do you still have headaches and pain and the syringomelia?

[TheViperkid22]

its very very important that everybody hears my story of what i have gone threw and what i am going threw today since my surgery on may 20,2009 to save my life. please call me at: 207-549-5199 please ask for daryn brehio. (ITS VERY IMPORTANT PLEASE CALL )

[atraherne]

Tell me about your story, are you doing well now?

[OmizTee]

I suffer with this same problem ive had 3 ops as well & last march 2008 fitted but im still having problems including black outs im terrified 2 go back 4 anything stay strong mate i wish u all the best. Thanks 4 the video i truly feel like im not alone. I wish u all the best i had that scar with my first 1 op i now have 1 up my spine lower back & across left side stomach. Now they want 2 go back in i truly aint got the strenth.

[FaLL3N101]

oh my bad u had 3

[FaLL3N101]

i had this surgery done twice too

[jrbrazzale]

Hi. I was wondering how you were doing? I had decompression surgery on Dec 8, and then a 2nd surgery on Apr. 25, due to CSF leakage. I also had a lumbar drain that caused intense headaches and horrible side and back pain everytime it was opened to pull more CC's. My herniation was 25mm. It seems that we have alllll of the same symptoms so i was wondering if theres anything else I have to look forward to. Did you ever need a shunt? Im hoping I never do, they seem horrible!

[sheilaschiarijourney]

How are u doing now? I hope and pray much better because I myself have given up hope of ever getting my life back.. but still hanging in there hope u are doing better

sheila in virginia felllow zipperhead

[sheilaschiarijourney]

I am so sorrry for what you have gone through what the Doctors and say and what we go through are so different they are not always tight they do not know all about chiari malformation

[CyborgNinja7]

Hang in there