Chiari 1 Malformation Decompressed

[grace32]

I wanted to find other adults who have been decompressed and who are still struggling with it. I went through 1 decompression in Aug 2005 and there after two more surgeries. At the time I was 30, I now am 32 and o.k. The final surgery done in December, was to place Fasia from my thigh into the neck because the dura did not hold. I recently have been diagnosed with Lupus but genetically its impossible. I continue to live life some days better than others. I would like to know if there are others out there who know what I am talking about. Those who have not been through this have no idea.

Thanks for reading! Be strong!

grace32

[JAVISI]

Grace,
My Nephew is 7 and he has a chairi malformation number 1. The pediatrician told my sister not to worry about it because it was only a number 1:mad: . They found out he had it because one morning he awaoke with a nose bleed and when he went to get his parents he passed out and then proceeded to have a seizure. He has had a few nose bleeds since then but thank God no seizures:confused:

He has staring type of episodes that I think are seizure type episodes. He also has swallowing problems intermittently. He also has bad eye sight!!
What cause your Neuro Dr to perform the decompression?? I have told my sister numerous times that he needs to see a Pediatric Neurologist but she says that she is going to do it but don't. I know that it is out of fear, But I beleive that knowledge is empowerment;) . I just can't get her to see that. I think I will talk to her husband about it and maybe he will get the ball rolling. I am worried sick about him!:(
Any thoughts you could give me would be greatly appriciated!

Than k you very much! Javisi:)

[krashleen]

Hi there Grace I did have the PFD, and extraction fusion skull to C4. Its a tough recovery. Mine was April 2006. I haven't had other surgeries. I still have pain in my upper back, and headaches and migraines.

I totally understand too.

JAVISI, your nephew needs to be evaluated as soon as possible. All those symptoms are chiari and need to be addressed more than likely surgically. Your sister needs to empower herself with knowledge. Here are some websites with great information.

www.chiariconnectioninternational.com
www.conquerchiari.org
www.chiarione.com
www.asap.org
www.thechiariinstitute.com

the swallowing issue is a 'red flag' and needs to be addressed.

Read up!

[krashleen]

And Grace? I haven't been through as much as you..I am sorry. Why did they take the donor tissue from the thigh?
I had donor tissue from the top of head..weird how each NSG does things differently in the OR!!

Do you have kids?

[grace32]

Hi Krashleen,
The Neuro said the thigh fasia was the strongest in the body. What meds do you take if any? I don't take pain meds but a couple other things. The fasis from the thigh was after the dura patch was unsuccessful and the repair of the dura was unsuccessful, the only thing that he could see to do was to place it there.
Thanks for your reply! Hope you are well.
grace32

[grace32]

Hi Javisi,

I would go to a pediatric Neurologist and request an MRI of the head and neck. That is how they found that I even had it. I suffered migraines all my life, but at about 30 I began dizzy-blackout stages and the MRI showed that the fluid was not circulating at all. I lived a normal life but the pain got to me.
I pray she takes him and helps to get something done. I can't remember well age 7 but in comparison to what I used to feel like I can't complain.
Grace32

[LIZARD]

Hi Javisi,

I would go to a pediatric Neurologist and request an MRI of the head and neck.

Run, don't walk, to a neurosurgeon! Having a nsg who is well-versed in Chiari is imperative. He can do the MRI and look at it as one who specializes in abnormalities of the brain. Neurologists, with only rare exception, are utterly useless in providing info about and relief of Chiari because they can only treat symptoms. They are not licensed in surgery and thus seldom know much about the effects of structural abnormalities or abnormal growths within the brain. Therefore, they are likely to blow off the profound effect ACM can have on a patient's quality of life. You can find a "Chiari nsg" from one of the following sites:

www.ASAP.org
www.chiarione.org
www.WACMA.com
www.conquerchiari.org


Good luck...

LIZARD :)

[JAVISI]

Liz,
Thanks for the info and everyone else that responded! I am worried sick! I have told my sister numerous times the importance of having him seen but she still hasn't done it! Since she has not done anything I am going to talk to my brother-in-law.
I think that she is scared I have tried to get through to her that knowledge can be empowering! I wish his pediatrician would not have taken it so lightly and refered her on to a Pediatric Neurosugeon, instead of saying " unless you want to scare yourself, I would not look it up on the computer".
I would never take him there again!
Any ways, I am still working on getting her to realize the severity of the situation, the pediatrician made it sound like since it was only a malformation #1 she had nothing to worry about!
Thanks to all, Javisi

[jhead]

Hi, my name is Jody and I'm 44. I had the decompression w/dura plasty and laminectame in 4-06. I'm still experiencing the severe headaches, neck and back aches, numbness in my feet and sometimes a hard time swollowing, just to mention a few symptoms. I'm scheduled for another MRI tomorrow but just found out today that my neaurologist is dumping me because there is nothing more she can do for me. I also am BI-Polor so I had many changes in Meds for both conditions that I have lost count. I've also been to rehab for my neck because she said they were cervical genecal headachs. Very strange dx since the headaches are the same as before surgery. Anyway most of the excercise's made my head worse. Now I tried to look into a pain clinic that the NS had suggesed but they don't answer the phone. I need a neaurologist that I can trust and know that they know what I'm suffering. I live in the Detroit MI area and would appreciate any info about neaurologists in my area that is familier with CM1.

[Rozia]

This dr. is close by , not to many in Michgan

Dan S Heffez, MD FRCS
Milwaukee Neurological Institute
2350 W. Villard Ave.
Milwaukee, WI, 53209
Phone: (414) 438 6500
Fax: (414) 438-6707
danheffez@mni-wi.org

Dr. Steven Swanson
Neurosurgeon
Michigan Brain & Spine Institute
Reichert Health Bldg
Ste. 3011 Elliott Drive
Ypsilanti 48197
(ph) 313.434.4110

[jhead]

Rozia, thank you for the info. I think I will look into Dr. Swanson. I live in Taylor Mi and Ypsi. is not to far away.

[pringlec]

grace32,
I definately know what your talking about, I had decompression surgery in Feb-03, still have problems, think I always will, but nothing as bad as before. I still get occasional migraines, some neck pain, and vertigo daily. I believe decompression helped but unfortunately I don't think my life is ever going to be like before chiari symptoms. I'm just thankful I'm functional again.

jhead,
my 13 y/o son like you also has Chiari and Bi-polar, were you diagnosed as a child? He also has Tourette's. I personally have never been happy with any nuerologist I have seen following my surgery. I had an excellent nuerologist when I was diagnosed but that was when I lived in Texas, now I'm in Maryland (husband in military). I now see a nuerosurgeon for follow ups and problems, huge difference. I highly recommend finding a neurosurgeon for care instead of a nuerologist. They really are the ones that can help anyways. Good luck

[grace32]

Hi, I was not in fact I live 30 years and never knew. I was passing out and having lots of other syptoms, myneurologist at the time ordered MRI and There it was so it was either surgery or be paralized the rest of my life. I have two girls who need me and at least I am functioning now. I also am BiPolar but am doing o.k. As a child zi had severe headaches w/vomiting but no one ever thought about it I guess. Thanks for asking and all are in my Prayers.:)
Grace32