I have been diagnosed with Chiari Malformation type 1 8.5 cm and have been having a lot of issues... at this point I am not having surgery until it is better preformed... anyone out here with the same thing.

Hi i am about to see the neurologiat for my chiari malformation what can i expect and does the botox work any advice would be great. I have lots of symptoms and these headaches are horrible

Hi christine. The Botox did not work for me at all but everyone is different. I have had these headaches for over 2 years and i am still the same if not worse. I even went to a head institute in Michigan and all they wantes to do is keep me for 10 days to do iv medication. I dont live anywhere close to them so i wouldnt stay. I figure my doctor can do that here by me. I have been to over 10 doctors and they dont know what to do. I see mine tomorrow so we shall see what he has to say again. I had a spinal fluid leak sealed but now i cant feel some of my hand and fingers from the surgery and it didnt help my headaches. When you go in to see your doctor just make sure you ask him if this will help. Be open minded to what they want to try first. Dont do the physical therapy because igs just a waste of money and time if they want to try that before. Good luck and let me know what they want to do maybe it will help me too.

Good morning. How was your appointment yesterday? I don't know much about<br />
mine. She had me do a 45 min mri of the head and neck to see how severe my<br />
case is. She said that I had a slight less reaction when she would touch<br />
anything on my left side which concerned her. She explained that surgery is<br />
usually the best treatment since my family Dr has already tried most of the<br />
medication that she would have used. She is worried that there could be a<br />
cyst which sometimes does occur with chiari malformation. She will be in<br />
contact by tomorrow to inform which route to go. I hope you got some<br />
answers at your appointment<br />

I was told by a Nuero-Optimologist that when your brain swells it pinches off your putulatary gland. Which causes the headaches and double vision.
Sorry about the spelling but hopefully that explains a little

i was diagnosed with Chairi Malformation in 2003, i had surgery soon after being diagnosed. It saved my life, as i was getting worse and worse as the days passed. It is now 13 years later, I don't regret having the surgery. My opinion is if you are having many issues to try and talk with a good surgeon and see what it is that they can possibly do for you. I know that they can offer some type of steroid to help with the swelling until you decide to do the surgery. You always have options, just remember that.

I just went and seen a neurologist this morning. I have a 10 mm and a 6 mm herniation and he said he didn't feel it was significant and no big deal. He said I obviously know more than him and was very rude. I am 42 and the chiari started impacting my heart a year ago. I was able to live with all the other symptoms till it started at my heart. I am now in the process of finding a specialist at mayo in Rochester Mn. I would like to do more of a physical therapy type of treatment.

Hi @luckypeppersi I so sorry to hear you were treated so rudely. I can imagine that the symptoms affecting your heart have you concerned. If you haven't already called Mayo Clinic, here are the contact numbers http://mayocl.in/1mtmR63

@ashleybryant, do you have any advice to offer?

Luckypeppersi, What type of heart issues is the chiari causing?

Here is an example. A few weeks ago it was about 715 am. I was getting ready for work and coughed. It felt like a rubber band had snapped on or in my heart. It took a couple of minutes then I was able to finish getting ready for work. An hour later I am at work and sneezed. It felt like someone had knuckle punched me on my left shoulder. The pain shot down my arm. Hand was numb and throbbing arm was in severe pain. I was struggling to catch my breath, sweaty, tingling up the back of my neck and head. Fifteen minutes later, my co-worker had me in the er. All basic heart attack test showed no signs of heart attack. This has been going on for a year now. Usually the pain is a little more progressive not as sudden. Always puts me in bed for at least a day or two. Exhausted, weak, crying for no reason.
I did get a hold of Mayo. We are now waiting on getting an appointment with a specialist in Chiari.

My son has chiari. He's 20 now but was diagnosed at 18 with it. He has been on NUMEROUS migraine meds and currently doing botox. the first round helped maybe for two weeks. After that, he still has headaches daily The intensity of them come and go where before his headache was pretty bad daily but right now the botox is not helping much. Not sure we will continue with botox. We have been to neurologist for his Chiari, including at the Mayo Clinic. Everybody says his Chriari is not symptomatic. I think different. He has been having daily chest pain and shortness of breath which is put off as depression and anxiety. We finally had a cardiologist take him serious and found out he has inappropriate sinus tachycardia after wearing a heart monitor for 4 weeks. The propanolol he was placed on helped the first couple months however now the chest pain and shortness of breath is back, sometimes even worse. He has constant neck pain and stiffness. He has periphera cyanosis to both hands and feet that's associated with numbness. During this past summer, when we had heat index in the triple digits, my son would be standing outside sweating however his hands and feet are ice cold. He now has excessive sweating. This past December, we had two weeks of freezing weather. All the while his underarms are sweating so bad he has to change shirts. He sweats so bad now, he has to change shirts throughout the day almost daily. His balance is affected. His vision is affected. He has all these symptoms but yet we are told it's not his chiari even though most of his symptoms are that of chiari. Did I mention frequent urination?? Yep has that as well. Been to all kinds of specialist for these specific symptoms and those body systems check out fine. It's getting frustrating. It's hard seeing him in pain and feeling so bad and dr after dr saying it's just depression and anxiety that there's nothing else wrong because his chiari is asymptomatic. Good luck in your journey with Chiari I hope you don't get the run around like we have had. We are still continuing to find that one dr that will take him and his symptoms seriously. I just joined this group hoping to get support and any new ideas. I'm so glad I see several that have had great results and some relief with their symptoms. I wish you the best!!!! You know your body so don't let anybody tell you there's nothing wrong with you.