Hello my fellow Chiarians! I’m 36 and just got diagnosed with chiari jan 14th 2014. I had been previously diagnosed with Rheumatoid Arthritis and lupus for years now. I am surprised to find out that a lot of my symptoms that I thought were lupus progressing could actually be the symptoms of the chiari malformation and syrinx. I woke up one day and my right arm, ring and little finger were completely numb. My neck to my right shoulder were numb to touch and had sharp burning pain. I had an MRI and got referred to a neurosurgeon were I live and he said I have 12mm tonsils and a 4cm syrinx. He wasn’t a chiari specialists. I found out from my own research and from reading all of your posts that I need to see a chiari specialist. He didn’t tell me much and said the surgery could possibly help some of my symptoms. He also said the syrinx can cause permanent damage and the decompression would probably make the syrinx go down. Some of my symptoms are pressure headaches,dizziness,balance problems,pain in back and neck,chest pain,eye and jaw pain,insomnia, stomach pain and nausea, problems concentrating, numbness in right shoulder blade area,breathing difficulty at time… As I looked for chiari specialists in my area I found Dr. Batzdorf in UCLA. I called and talked to the receptionist who was very nice and told me to gather my MRI and a CT of my brain that I had 3yrs ago due to having migraines. It has been a week now since they have had my information so I’m just waiting patiently but as many of you know it’s nerve wrecking just going through this period. Just a thought I wonder why they didn’t mention the chiari when I had that brain CT because the results did say I had no mass in the brain but they couldn’t rule out chiari. I didn’t think twice about it and either did my PCP I thought it was just medical talk. I am wondering how long it takes for Dr. Batzdorf to read my info and have the receptionist let me know if I’m a candidate?Anyway I thank you for reading my story and am really happy to have people to talk to that can relate with me! If anyone has any information about Dr. Batzdorf or had decompression surgery with him I would appreciate any information? Also if anyone has advice about chiari specialists in Ca that would be great? I feel like talking to my family doesn’t really help much they just doent understand so I appreciate each and everyone of you who took your time to read my story! I am open to answer any questions or give information if i can be of help!
Hi, are you a Chiari I? I have recently found out I am and I do not know a lot about it yet. I can feel for you as I am 56 yrs old and have had a lot of symptoms all my life. Headaches, neck pain, numbness in my hands and feet, getting choked for not reason and memory. But I started having trouble thinking and I saw on a website where they called it foggy thinking and that helped me realize the Chiari was indeed my problem. I have seen a lot of post on here that say to make sure you find a doctor who specializes in Chiari and has done a lot of procedures. Wishing you the best and welcome to the site.
Hello Littledeb, yes I am chiari 1 and I have a syrinx. We have some similar symptoms. This site has been a huge blessing for me I have found out some of the most important information here! I have realized that we do need to see a chiari specialist to ensure our best possible outcome. I had a NS out here were I live say he would do the surgery in 1-2 weeks until I did my research and found out we need to see a chiari specialist. I realize we have to take charge when it comes to our health because nobody knows our body like we do! Thank you for the warm welcome this support group is so knowledgable im happy to have found you guys!
Oh how funny! I (also brand new here) just sent off all my information to Dr. Batzdorf yesterday. His assistant Lila told me it takes 1-2 weeks for him to get back to me with info, so I'd assume the same would be true for you. She did tell me that only about 50% of what comes to him truly is Chiari. I'll be following closely to see what the doc says about you!
The syrinx is nothing to mess with, from what I understand. I can't imagine he'd blow you off, but as a newbie myself, I of course don't really know.
Take care and gentle hugs!
What may I ask is a syrinx?
Hi…welcome to all you new folks!! I have been MIA for a bit…sorry I haven’t welcomed you before now.
A syrinx is a fluid filled cyst that is found via MRI…this cyst sits on the spinal cord and cause many symptoms and can lead to permanent nerve damage.
The name of the condition is called ’ Syringomyelia '…so if you guys see SM…that is what is being referred to…
CM- Chiari Malformation
Sx: Symptoms
Dx: Diagnosis
NL: Neurologist
NS: Neurosurgeon
You all may already know all this…but…it took me a while to ‘get it’!!! LOL
Looking forward to getting to know all you newbies!!!
Lori
Hello! The waiting is so intense every time my phone rings I hope it’s Batzdorfs office and that I will be told I’m a candidate lol! I will definitely keep you posted on when I hear from them and you please do the same. Wow only 50% end up being truly chiari. The nice lady I talked to did say that when she calls back if she says that I’m not a candidate that I can cross chiari off my list and that so many people get misdiagnosed and Dr. Batzdorf would be able to tell if it was or wasn’t chiari. It has been 2wks now so I’m hoping any time they could call. You’re right about the syrinx that’s what the first NS told me was a reason to have the surgery sooner b4 it causes permanent damage. How are you doing and feeling since you saw your last NS?
Take care!
I'm eager to hear what Batzdorf says to you, too! Partially because I know he won't get back to me before he gets back to you, heh. From everything I've read, the syrinx is an indication surgery must be done--it's a "do not pass go, go straight to the operating room" thing, but I could be very wrong. Was your neurosurgeon unwilling to do the surgery?
My symptoms are getting worse, so I'm eager for an answer. The fatigue and muscle weakness was surreal yesterday. Hope you get an answer--and some relief!--soon.
Yes that’s what the NS said that the syrinx is the reason I should get the decompression surgery soon. The NS wanted to operate he said he would have me in surgery in 1-2 weeks. If I hadn’t found out that we should see a chiari specialist I would of probably already had the surgery but something didn’t sit right with me and I told him I would get back to him. I wonder why he didnt refer me to a specialist right away? I try not to get ahead of myself but if Dr. Batzdorf doesn’t find me a candidate I’m wondering who I would try and see next? I’ve also read that we should get at least 2 opinions from chiari specialists not a NS and a chiari specialist. Hopefully that’s not the case for either of us I’m praying on it! I hear you on wanting to get an answer soon. I know how you feel with the fatigue and muscle weakness it makes it hard to do anything at times. I hope you feel better soon!
Lili, have you heard back from UCLA? I learned this past Thursday (the 20th) that Batzdorf does want to meet with me. :) That told me he DOES think I'm a Chiari case, which was a huge relief and encouragement in and of itself.
I didn't actually get a call from them--I was calling to see if they wanted me to send my latest MRIs (cervical) and the results of next week's EEG when I get it, and when Lila looked up my case she told me he had marked I was okay to make an appointment, but wasn't urgent. I know I'm not urgent--I've seen the far scarier cases of Chiari that are--but just knowing he okayed the appointment made my day.
If you haven't heard from them, I suggest you call. Since you sent your info a week before I did, surely he has seen yours and a decision has been made. Hope all is well with you!
Yes I actually called them Friday the 21st and found out I also was allowed to make an appt! I didn’t want to wait another weekend I had to call I figured what do I have to lose lol! I can’t believe we both are going to be seen by Dr. Batzdorf this is great I’m glad to have you to talk to! I’m sure you can relate this is good news to be able to schedule this appt but it makes everything all so real now. My appts in 3 weeks did you schedule yours yet? I’m glad you have encouragement knowing he okayed your appt and thank you for keeping me posted! If you don’t mind me asking why are you having the EEG is that because you have palpitations or something heart related? I just got referred to Cardiology from my PCP because I have palpitations and she wants me get hooked up to a portable monitor for 24 hrs to check for irregular heart beats. Alrighty take care!