After months and months of waiting, I got my results today. My doctor knows NOTHING about Chiari; she basically saw the results and referred me to a neurosurgeon. She refuses to call it Chiari since "it didn't say so on the report" so I wanted to check with you lovely people to ensure everything's right.
Head MRI: "The cerebellar tonsils are again noted to be low lying. There is approximately 6mm of caudal descent."
Impression merely repeats the same thing and says it's unaltered from MRI 6 years ago.
Spinal MRI: "Within the central aspect of the thoracic cord, 2 regions of increased T2 signal are noted with a tubular configuration. The first extends from approximately the level of the T2-T3 disc interspace to the T4 vertebral body. It extends through approximately 2.8 cm in the craniocaudal plane, with maximal thickness of approx. 2 mm in the anteroposterior plane. Another structure is seen within the central canal of lower thoracic cord, extending from approximately the level of the T5-T6 disc interspace to the level of the T11 vertebral body. It extends by approx 14.7 cm. Maximal AP diameter through this region is approx 2mm."
Impression: Findings as described above within the thoracic cord are suggestive of a syrinx. Uncertain if these represents 2 separate syrinx, or just one long syrinx."
Okay. So given these results - am I safe to assume that I am Chiari Malformation type 1 and associated syringomyelia? Also...I know nothing about syringomyelia. Is this a mild syrinx? Severe syrinx? Is this why I have bladder issues as well as tingling/pain/numbness?
My other question...if I had been properly diagnosed and treated 6 years ago, would I have reached this state of being really symptomatic? My doctor is horrible - just mean and rude and told me everything was because I was fat. She said "all of this means nothing", "you wouldn't have any symptoms", "it's a no big deal thing". My parents want to pursue legal action, I mean - we got home from the doctor an hour ago and my poor mom hasn't stopped sobbing. We finally just sedated her.
So please, any help with this is greatly appreciated. Thank you!
So sorry to hear your story. I was treated the same way by the dr's and was not diagnosed properly because of Chiari not being well known and use to not be treated unless the herniation was severe. When I finally found out what I had everything finally seemed to fall in place and I was able to explain what had been going on all my life. Please also check and make sure that the neurosurgeon is experienced with Chiari, this will help also. What happens with Chiari can really very patient to patient. When you are not getting proper spinal fluid flow throughout your body different things can go wrong. I have a lot of nerve damage in my arms and hands and a lot of pain. I am sure this is a very scary time for your family if I can help you I would be glad to. I am a nurse and actually work with brain and spinal cord injuries,but I am also a survivor of Chiari. In my prayers,Eileen.
Hey Abby. Thanks for the support, my mom has calmed down now but refuses to ever let me see the doctor again. I think I'm okay with that.
I do have back and neck pain, not much with the shoulder pain however. Lots of back of head pain and it constantly feels like I have an earache. I took your advice and purchased Conquer Chiari and it's been helping my parents immensely, thank you for the tip!
And thanks again for the prayers. Everyone is just so lost and confused right now, they are much appreciated.
Abby said:
Bless you Lissa,
Yes, what you said is correct you have a 6 mm herniation of your cerebellar tonsils and you have syrnixs. Wish I could hug you and your mom too. Sorry your doctor treated you like that, but we can relate with what your going through. Many of us are told the same stupid stuff. Boils my blood to hear how mean she treated you.
It may mean nothing to her, but it does to us. Having a syrnix, you can be skinny, so that is a untrue statement. Gosh, how awful!
Yes, that is why you have bladder issues/tingling, pain and numbing. Do you have neck, back and shoulder pain?
I am not a doctor, but what you said your report read, I am glad she did refer you to a neurosurgeon.
Please do your homework and purchase the book, Conquer Chiari by Rick Labuda, and go to our research section, where you will get a ton of great information. Ask folks here they will tell you first hand about their issues.
Please know I have you and your mom in my prayers.
Eileen, I felt the same way! When I found Chiari and read the symptoms, I cried cause it was like reading about my life. I'm glad you were finally able to get the treatment you deserve. If I have any more questions, I will definitely come to you; here's hoping your pain is better these days! Thank you.
edock said:
So sorry to hear your story. I was treated the same way by the dr's and was not diagnosed properly because of Chiari not being well known and use to not be treated unless the herniation was severe. When I finally found out what I had everything finally seemed to fall in place and I was able to explain what had been going on all my life. Please also check and make sure that the neurosurgeon is experienced with Chiari, this will help also. What happens with Chiari can really very patient to patient. When you are not getting proper spinal fluid flow throughout your body different things can go wrong. I have a lot of nerve damage in my arms and hands and a lot of pain. I am sure this is a very scary time for your family if I can help you I would be glad to. I am a nurse and actually work with brain and spinal cord injuries,but I am also a survivor of Chiari. In my prayers,Eileen.
Hahaha Beeba! I agree, if we could all just take Xanax from time to time, we'd be good to go. No, no one has ever thought that the Chiari might be making the weight worse - but it makes sooo much sense since I only get my real bad Chiari headaches with physical activity or strain. I just stopped doing it then! My mother refuses to let me go back the the doctor, and that's fine by me. We'll find someone else. But it's true - I was incredibly active until 6 years ago the Chiari hit and has destroyed all activity in my life. If I didn't have the extreme chronic fatigue, the dizziness, the vision problems, the pain and the tingling and the tremors and muscle weakness and sweating problems and bladder control issues...well, I think trying to lose weight would be much easier. If only other doctors felt like you! I hope everything is going better for you, despite the 25 year lack in treatment. It feels nice to know that people have faith in me! Thank you.
Beeba said:
First where did you get stuff to sedate your mom. That could fix many people's problems!! I say this in jest. I truly feel very sympathetic to your situation and the way you have been treated over and over due to your weight issue. Has anyone actually thought maybe the chiari has compounded your weight issue as opposed to your weight issue compounding chiari?!?!? With no medical training you seem to have chiari and a syrinx. Let a specialist chiari ns take over and help make decisions with you. I think it is time to change doctors regardless of all this other stuff. A drs job is to be empathetic and helpful not degrading and demeaning. If you do happen to see this medical marvel - point out that you can lose weight and guess what he will still be an asshole!! There are many obese people in this world - they don't have chiari and all the fun that goes with it. I have worked in a medical weight loss center. I saw success and failure. My job was to be supportive and loving when people were feeling at their lowest and cheer even a pound of success. It boggles my mind with all we have learned that some drs still don't see a weight issue as a medical problem. Tell them to fix your head and maybe when you no longer feel horrendous you will be more motivated to live. Who really wants to prolong their life when they feel awful? 25 years ago I told the drs I worked for "it always feels like something is stuck in my neck" there were almost no MRI's at the time. I have often wondered what if?...... 25 years younger,easier healing,no kids. But with this condition you just can't keep doing that to yourself. Thinking and the procedures have changed and improved even in the last 6 years. Consider the timing lucky. It is better understood and better treated. Good luck to you and please know this will get better. Gotta really put on your tough skin and fight for all that you have learned from being here and all the resources available. We all have great faith in you. And for god sakes next person who says youre fat tell them they are ugly!! Jhc you have a mirror and a scale - do they really think by saying that you are gonna have some epiphany moment?!?! This is the only condition where it is still acceptable to pass judgement.