I go tomorrow for my results of my CINE MRI. I spoke with my NS on the phone last week, he said I had to come in and go over all my test results. He said there was minimal CSF blockage. I have a 8mm herniation, and minimal blockage. I didn't have a full spine MRI, can they tell with the CINE MRI if you have the syg cyst? My head feels like a bobble head. I have trouble keeping it stable. My headaches, dizziness, vertigo, stuffy ears, and ringing in ears is getting worse. I am also nauseated all day. Every time I eat just a little I feel like I can't catch my breath. Is that part of Chiari? That is the worse feeling! I can't walk across the room without loosing my breath. I am so afraid my doc is going to want to just order more test or try meds. I have been off work now for two months. I can't even drive cause im afraid of a dizzy spell or headache will come on. I hope tomorrow brings me answers! Is there anything I should bring to the table with me tomorrow? Like questions I should ask? I'm so nervous. Thank you all for your support! It's hard when your family don't understand, and they think you just want to have surgery! HA! Thats what everyone wants huh? My hubby is understanding, but outside him, no one gets it!
Wow Kay, our stories are so similar! I wish you all the luck. I'm so new to all this that I can't give you advice, but I hope for your sake that the NS is understanding of your Chiari and doesn't blow you off. It seems to happen alot. Remember that you are not alone, and please let us know how it goes. Sending you good vibes!
Ps...I also am afraid to drive with all the turning of the head and I feel out of breath when I eat too. I don't know if it is part of CM or not, but you aren't alone there either. :-)
Thanks Marlena. Sorry you are suffering from all this too! It isn’t a pleasant disorder thats for sure! So many of my symptoms came on the past few months rapidly. It seemed to happen when I went to North Carolina and was in the mountains. On our way home is when it all started. I have had symptoms for years, just not this severe. I guess the elevation made them worse. My NS specializes in Chiari, so im confident he will know whats best. I just cant go on like this, I have no quality of life! I’m not a complainer, and im very independent. I worked six days a week delivering mail,so sitting at home unmobilized is making my body hurt more. I’m use to walking bout 20 miles a day. I want to go back to work, but it’s impossible right now. What has your dr ordered for you? Have you had all the test done and figured a plan out? I will keep you posted after my appt. tomorrow. Hope you feel better! Your in my prayers!
Wow! We really are very similar! I have had headaches and neck pain for years, taken lots of RX's for it and nothing helped. We took a trip out East from Niagara Falls down (through NC) to South Carolina and back over to Missouri and when we got home is when all my symptoms started getting worse. I went to the ER thinking I had a severe ear infection or something because I was so dizzy and running into walls, my ears hurt deep down and were ringing, and I started fumbling my words. That's how I found out I had CM1. So far I have had many MRI's, CT's and X-rays. I had the flow study done as well. I just went yesterday to get my results. What I know at this point is my herniation is 10.9mm, flow was fine according to my NS and no tethered cord or sphinx(sp). So he suggested I go see a Neurologist to see what else could be causing my symptoms. Haha. I already know what is causing them though, so I am gonna see about going to see Dr. Oro in Colorado for a 2nd opinion. I will also see the NL just to see what he has to say I guess. I'm glad you have a NS who specializes in Chiari! I know exactly what you mean about lack of quality of life. I feel like I am going nuts just sitting here! I have so much that I need to get done. :-) Keeping you in my thoughts and hoping you get satisfying news!
((Hugs))
Kay....
Please update us on the CINE results...good luck...i my thoughts and prayers.Thrilled you have a NS that know his stuff regarding Chiari....Got ya, when you say no one gets it ..other than your hubby...WE GET IT..HERE...So ...please keep us posted..YOU ARE NOT ALONE!!!!
Marlena...
I cannot believe your NS is sending you to a NL to :See what is causing your Sx's!!!!!!!!!!!! Get rid of that NS!!!! You have a pretty large herniation....and from what my NS told me about the CINE MRI or any MRI for that matter...he put it like this.."The MRI is only a snapshot..I will know more when I get in there." My NS went by my Sx's progressing and the MRI..not the CINE MRI..The Cine report stated "Patient has diminished CSF flow"..My NS is pretty conservative..we waited for 6 mths after he did a cervical fusion which needed to be done...his thought was ..maybe that will help with the sx's....that surgery was a breeze...recovery no bad....then we waited 6 mths and reaccessed my Sx's....thats when we moved forward to the decompression......Hope this helped!!!
XOXOX
Lori
Thank you Lori! That was my thoughts exactly. I just had a feeling he wasn’t the “one” from the beginning. You are so helpful with your information. 
lori said:
Kay....
Please update us on the CINE results...good luck...i my thoughts and prayers.Thrilled you have a NS that know his stuff regarding Chiari....Got ya, when you say no one gets it ..other than your hubby...WE GET IT..HERE...So ...please keep us posted..YOU ARE NOT ALONE!!!!
Marlena...
I cannot believe your NS is sending you to a NL to :See what is causing your Sx's!!!!!!!!!!!! Get rid of that NS!!!! You have a pretty large herniation....and from what my NS told me about the CINE MRI or any MRI for that matter...he put it like this.."The MRI is only a snapshot..I will know more when I get in there." My NS went by my Sx's progressing and the MRI..not the CINE MRI..The Cine report stated "Patient has diminished CSF flow"..My NS is pretty conservative..we waited for 6 mths after he did a cervical fusion which needed to be done...his thought was ..maybe that will help with the sx's....that surgery was a breeze...recovery no bad....then we waited 6 mths and reaccessed my Sx's....thats when we moved forward to the decompression......Hope this helped!!!
XOXOX
Lori
Well… Home from my NS appointment. Was at first a nightmare, then we got on the same page. My dr had three MRI’S he was looking at on his computer. One was my CINE, the other was from a few weeks ago, and one I had done three years ago. I didn’t know he had the one from three yrs. ago, but I had it done at the same hospital. I think he was confused, he was looking at my one from three yrs ago, my herniation was only 3 or 4mm. and no compression. The new one was 8MM and the CINE report showed minimal blockage and significant compression. He then said he didn’t think my symptoms were chiari and he wanted to send me to a neurologist. OMG!! I lost it! I said no! I have been to every kind of dr in the past eight yrs. and I’ve had every test done. I’m not going anywhere else. My husband said I was red as a beet. lol! He had two other dr’s in there and they did several neurological test. They said my eyes were jumping, and my reflexes were overactive. I also have a vascular loop that is pressing on my 7th cranial nerve. Which is causing hemi facial spasms. After the dr figured out that he was looking at the wrong MRI he decided I would benefit from decompression surgery. Also if the decompression don’t alleviate my hemi facial spasms in a few months he will have to go in and do another surgery to put teflon around the enlarged blood vessel. RRRR!!! He also said that if I would of had the surgery a few years ago for the enlarged blood vessel it could have been life threatening since I have chiari. I put the surgery off cause I figured it wasn’t worth having your skull cut open and major surgery for my eye’s and face twitching. Even though it drives me crazy! So…long story short I will be having surgery on Oct. 21. Don’t know if I am relieved or scared to death! I did feel like a butt cause I got mad at the dr. and was rude. But my hubby said he don’t blame me, he was mad too! lol! Sigh…
I don’t blame you either! I think you did an outstanding job sticking up for yourself. It just goes to show that just because they have initials after their name, doesn’t mean they don’t make mistakes too. Congrats on getting a surgery date and hopefully it will help your symptoms, especially the facial spasms. Please keep us updated and good luck to you!
Kay1990,
YIKES...what a rollercoaster ride at the NS's...you poor thing..you must be emotionally beat!!!! Could not agree more with what Marlena said...Just because they are doctors DOES NOT mean they can't mess up...so, if you were a bit testy ...so be it..you are the paying customer....We all need to keep that in mind...we are customers as well as patients..We deserve proper care and respect....
Glad you have a plan and a date....keep us posted on how you are doing!
Lori
Marlena,
Thank you for supporting me! It was a tough visit my my NS! Thought for a moment or two I was crazy, and I did have a problem understanding things. lol! Well.. I do sometimes, but this time I was right! I'm still confused with his theory, but once he said my chiari was defiantely causing my symptoms and I would benefit from surgery I didn't care anymore! I have a date to get fixed and hopefully be normal again! I am excited to know I'm not crazy, well maybe a little lol! I am a nervous wreck and have lots to do around here, but it will all get done and I will be fine. I hope you find the answers you are looking for! And keep fighting, I think the drs need convinced that our symptoms are real and severe, and we are the only advocates for that! Best of luck to you! And you will continue to be in my prayers!
Marlena Harmon said:
I don't blame you either! I think you did an outstanding job sticking up for yourself. It just goes to show that just because they have initials after their name, doesn't mean they don't make mistakes too. Congrats on getting a surgery date and hopefully it will help your symptoms, especially the facial spasms. Please keep us updated and good luck to you!
Thank you, and I'm so happy for you! I also have troubles understanding stuff. Lol. You are not crazy and we will all be here to cheer you on through surgery as well! :-)
((Hugs))
Lori,
Thanks for the reassurance that my behavior was ok! lol! I felt like I was going to explode! Hubby was laughing when we walked out and said how red my face was! Ha Ha! But he agreed the dr was confused more than I was. Thank goodness I took someone with me! Which if anyone reads this, please always take someone with you to your NS appointments! Then you have a second voice and opinion. My husband was very helpful explaining to the NS my symptoms I have been experiencing and validating them! I hope you are doing well today! I appreciate all the support here! If it wasn't for this board I wouldn't of known to back myself up, and what questions to ask. Love and prayers to you!
lori said:
Kay1990,
YIKES...what a rollercoaster ride at the NS's...you poor thing..you must be emotionally beat!!!! Could not agree more with what Marlena said...Just because they are doctors DOES NOT mean they can't mess up...so, if you were a bit testy ...so be it..you are the paying customer....We all need to keep that in mind...we are customers as well as patients..We deserve proper care and respect....
Glad you have a plan and a date....keep us posted on how you are doing!
Lori
Hi...
I hope that after your busy day with the NS you and your hubby will be able to rest peacefully.
That was an excellent point you brought up earlier...about bringing someone with you to appts. I am glad I had a good girlfriend of mine come with me to many NL's appt's....To this day we laugh at some of those guys!!! It wasn't funny back then but we laugh now at the absurdity some of them spoke!!!!
Keep us posted on how you are doing...We are all here for you....this site has been a life saver for me...Let us know how you .
Peace,
Lori