Hi everyone! I was just recently diagnosed with a 7mm low lying cerebellar tonsil, with no substantial compression. This is what my MRI reads. I was coming home from North Carolina in the mountains when I had a severe headache and felt like stabbing pains in my left eye. I then became very dizzy. I went to the dr the next day, only to be sent straight to the optomitrist. I was diagnosed with narrow angle glaucoma and had laser surgery on both eyes. As days past, the dizziness and headaches became worse. I couldn’t even walk. Riding in the car made me very sick. Every time I would look out the corner of my eyes I felt like I was spinning. I was then sent for a MRI. The only thing the dr noticed was a cyst or tumor on my sinus. No one mentioned the cerebellar tonsils. I then went back to my eye dr. and told him all the symptoms I was having. He said it had nothing to do with my glaucoma or surgery. But that I had Chiari and he seen it on my MRI. He now is sending me to a neurosurgeon. Has anyone ever had symptoms from elevation? Like being in the mountains? I still have ringing in my ear and my left ear feels like its clogged constantly. I feel like i’m still in the mountains! Any info would be greatly appreciated! I just keep feeling worse and feel like no one believes me!
Welcome…there are as many symptoms as there are people with Chari. Don’t give up, you will find someone to listen and treat you. Best of luck
Thank you Sslakemom2. I have been over whelmed with trying to find info and dr’s. This is a tough one! I just seen my eye dr this morning, his words were “you’re a complex case”. Great I said! lol!! But at least he’s trying to help me, unlike my family doc!This site is wonderful! I have learned so much these past two days. I look forward t o meeting others that can shed light on this disease. Thank you for your support!
Sslakemom2 said:
Welcome....there are as many symptoms as there are people with Chari. Don't give up, you will find someone to listen and treat you. Best of luck
My family doctor always teases me...I never get the common cold, yet I have had 9 ear surgeries, discoid Lupus, Bells Palsey...and the list goes on and on....Although I am totally freaked out about surgery, I am relieved to find out what these weird symptoms have been all these years
Sharon
Chiari has such odd symptoms that seem to be so many different things. I'm glad that you finally have a diagnosis. I pray that you're NS understands chiari.
You are well understood here and we all believe you! :) It's very frustrating. Everyday is a battle. We wake up and don't even know what to expect or what symptoms are going to slam us that day. It's a hard road. Hugs...
HI....
Tasha said it best....We are here for you...keep us posted.
Lori
Hey...forgot to say...WELCOME!!!!.....
My ears were effected too..as well as the car sickness....I had decompression 3 yrs ago with good results...still struggle with balance issues and visual .
Is it possible for you to go directly to a NS(neurosurgeon) by-pass NL(neurologist)....I personally had no answers from all the NL's I saw.
Good luck....we are here for you.
Lori
I’m glad im not the only one that has all these weird things happen to me! lol! When did you get
diagnosed, and when are you having surgery? I did a lot of research the past few days. I can’t believe how quick my symptoms came on. I have always had mild symptoms, but not this severe! It’s very scary! I’m sorry youre having so many problems. I too am glad I finally have a diagnosis! i always knew something was going on in my head, just couldnt get anyone to figure it out! Look forward to hearing from you. Everyone here has has been so helpful!
cMy family doctor always teases me...I never get the common cold, yet I have had 9 ear surgeries, discoid Lupus, Bells Palsey...and the list goes on and on....Although I am totally freaked out about surgery, I amoms relieved to find out what these weird symptoms have been all these years
Sharon
Thank you for the welcome Lori. Did your ears feel like they were full, mine is mostly on the left, and ringing? The car sickness and ears just started about a month ago. And it is really severe. If I look out the corner of my eyes I feel like i’m spinning fast. Friday night I had the worse headache I have ever had. It was in the back of my head and behind my eyes. I cant believe how severe my symptoms are getting so quickly! I did get an appt. with a neurosurgeon. From what I read he specializes in chiari. I see him Tuesday. My family dr scheduled me with a neurologist and I had my eye dr refer me to a surgeon. Family dr acted like it was nothing and I didn’t need to do anything about it. She just thru her hands up and said “I dont know what is wrong with you, doesn’t make any since.” I’m pretty much done with her. Heres you some antidepressents, see ya in a few weeks. Glad your surgery went well! Do you still have blurred vision and feel like your going to fall? i don’t want to have surgery if I am going to still have symptoms. I’'m scared that damage is already done. I have blurred vision in left eye and it hasnt gone away. My right eye is now starting to do it. I look forward to hearing from you. You all have been very helpful and ease my mind!
lori said:ty
Hey...forgot to say...WELCOME!!!!.....
My ears were effected too..as well as the car sickness....I had decompression 3 yrs ago with good results...still struggle with balance issues and visual .
Is it possible for you to go directly to a NS(neurosurgeon) by-pass NL(neurologist)....I personally had no answers from all the NL's I saw.
Good luck....we are here for you.
Lori
Thank you Tasha! I pray too that my NS understands it! From what I read about him he specializes in it. I gave up driving cause I'm so afraid a haeadache will come on, my eyesight will go, or I will start spinning. It's not making it easy when I have always been so independent! I am a mail carroier, and now i'm probably going to lose my job. I have been off work for almost 2mths. The stress of that is not helping. I have no income coming in, cause i exhausted all my sick time. My poor husband is working almost 80hrs a week to make up for it. I am anxious to see what the NS says Tuesday. I will keep you posted. I just want to feel normal again!
ashasheart4u said:u
Chiari has such odd symptoms that seem to be so many different things. I'm glad that you finally have a diagnosis.. I pray that you're NS understands chiari.
You are well understood here and we all believe you! :) It's very frustrating. Everyday is a battle. We wake up and don't even know what to expect or what symptoms are going to slam us that day. It's a hard road. Hugs...