Chiari Type 1 Malformation.

Is there anyone who has this? I was diagnosed about 2 years ago. Some docs tell me it's serious. And some say not so much. the info i find on it is scary. Any experience with it would be helpful.
Sam

[tonynmelissa2002]

I have Chiari 1 Malformation and was diagnosed with a 4mm syrinx.

I am almost a year post op from the Posterior Fossa Decompression surgery.

Feel free to contact me at lissa68_2003@yahoo.com

I can tell you more about it

[dmelissa13]

My MRI results from 02, 03, and 06 all show Chiari (1-1.2 cm), no visible syrynx. No doctors have ever pursued it as the cause of the symptoms that have plagued me for years - headaches, neck and shoulder pain, dizziness, brain-fog, choking, falling, blurry vision, chest pain, many more. I recently found my copy of the MRI results and looked it up online - discovering the correlation! I brought it to my doctor's attention and she didn't seem to think it was related. She has been treating me for depression for over a year. How is your treatment going? What can I expect from here?

[tonynmelissa2002]

Where exactly are you located. Seems to me you need to see somebody who has some experience with CM and SM. My doctors played for 2 years with mine telling me it was migraines and eventully that I needed to make lifestyle changes and learn to deal with the pain. Thats bull and we both now it. And it does not matter how much of a herniation there is, even small herniations give great pain.

Here are some Chiari docs, mine is on the list Dr. Menezes from Iowa City, IA.


http://www.chiariconnectioninternati...octorlist.html

Push that doc of yours to send you on. If they don't know about CM tell them you want to see a specia;ist in the area that you would rather not take chances with a doc who thinks they can diagnose this when they are not properly trained. Be a bitch you have to be for your own health

Melissa

[dmelissa13]

Hi Melissa !
I am in San Antonio, Texas. I will look at the list. Thank you for your encouragement and advice.

I have long been disappointed with my neurologist. Missing the CM on the MRI is the last straw! I will ask my PCP to refer me to a specialist to replace him. I am also concerned about losing my job - headaches, brain fog, and blurry vision have made me slow at my "thinking" job for a long time and boss is fed up (rightfully so! I am too!). I wonder if it would help to tell him that I might finally have an answer and it includes brain surgery but I'll be better at my job when it is over?

Surgery doesn't scare me - the frustration of fighting these symptoms, dealing with my job, and defending myself to doctors is WAY worse!

Melissa

[tonynmelissa2002]

Good for you. Get sent on, it was the best pushing I did with my family doc too, and honestly, the surgery does make a huge difference. Let your boss know that.

Check out this website, these people have been a godsend to me about CM and SM. www.asap.org. There is tons of info and a ton of very knowledgable people on there. Most of the good docs are associated with that website, my doc is.

Keep me updated and please feel free to email me or whatever if you want or need to. Push to get sent to someone that knows about this and will help instead of telling you its in your head, even though it actually is in our head, but not the same way.

Take Care,

Melissa

[razzle]

Hery Melissa didnt kno0w this board exisited . I have always wondered why they call chiari a brain disorder cause actully its your skull crowding things and when you have surgery they remove bone not brian.

I also, I Chiari Type 1 Malformation. I was diagnosed only a few months ago and I am (as the doctors say) "One of the youngest but yet more serve cases" they have ever seen. { FYI I am 12 years of age} Many doctors insist that I have the surgery immediately. Others say that it is no big deal. We decided to put a hold on the surgery for a bit. But as each day passes, my disease becomes worse. I also have been diagnosed with Sleep Apnea, Chronic Daily Migraines, etc. I have been wrongfully accused of having Bi-Polar Disorder various times. Some of my doctors didn't believe I was telling the truth about my disease. Also, my previous doctors believed that I suffered from depression and that i was OCD. Which was preposterous because I havent showed any symptoms.


So On That Last Note, Doctors From Yale Suck(: hahaah

Tale Care(:
Jessica

[razzle5150]

No. 1 you have to find a dr. that specializes in this . you may have to travel to get one . come to www.asap.org and join us . great support

[booluvschoco]

my husband has chiari 1 malformation, hes long into the condition, he found out 14 years ago at the age of 36,a few months later he had open brain surgery for the brain stem and a shunt placed in his neck, about six months after that he had to go back in and have a shunt put in his spine, he has a total spinal cord syrinx and cord atrophy as well as scoliosis of the lower back and a fewherniations of the dic in his neck,he now has syringomyelia because of this condition,when they did his second surgey at the age of 37 they also removed a small part of the upper spine to put the shunt in, I guess because he has a hollow caviety in the spine and the fluid was draining into it causing the syrinx,he is now 50 and had lived at pain management for most of his life and now after all this man has been through ,doc thinks the shunts have stopped working,he now cant lift his left arm at all,the muscle in that arm is completely gone and can only walk at the most 100 feet when his back starts to hurt him, we are for the second time now filing for disabilty for him,there is no way he could work, and ya know the funny thing,after his first surgery, the doc said he would be almost 80% better,not true, any of you have anything you want to add or advice I would love to hear it,its been so hard as his wife to watch him go throug this and his children at well,I just pray that now after so many years they have better ways to help with this condition, his doc who did the surgey died in an airplain crash 6 years ago and he now see's a person who took over for that doc,thanks for listening