Comments for Droopybrains's Weblog http://droopybrains.wordpress.com So, our brains are falling out. What's your excuse? Mon, 04 May 2009 00:44:54 +0000 http://wordpress.com/ hourly 1 Comment on LIPSTICK by Ginette Godin http://droopybrains.wordpress.com/2008/09/12/lipstick-hey-its-the-buzzword-of-the-week/#comment-14 Ginette Godin Mon, 04 May 2009 00:44:54 +0000 http://droopybrains.wordpress.com/2008/09/12/lipstick-hey-its-the-buzzword-of-the-week/#comment-14 You should look up Chiari Malformation Type 1! It really explains how many people with a chiari and 0mm of herniation still suffer many symptoms! It talks about how doctors and neuros need to realize these new findings! Very Interesting! You should look up Chiari Malformation Type 1! It really explains how many people with a chiari and 0mm of herniation still suffer many symptoms! It talks about how doctors and neuros need to realize these new findings! Very Interesting!

]]> Comment on LIPSTICK by spring guidry http://droopybrains.wordpress.com/2008/09/12/lipstick-hey-its-the-buzzword-of-the-week/#comment-13 spring guidry Sat, 28 Feb 2009 23:22:40 +0000 http://droopybrains.wordpress.com/2008/09/12/lipstick-hey-its-the-buzzword-of-the-week/#comment-13 lipstick, girl you rock! i have been venting over and over to my husband almost the exact words. what the hell are these doctors becoing doctors for, when clearly the can give a crap. i though helping the patient is the point. i have a 2mm tonsillar ectopia as an incidental finding. for 6 yrs, this has been sitting there on my reports and i have just found out. i gathered reports to bring to a neurologist and finally saw the findings. i asked this doc what this is and the asshole told me he never heard of this. so he wanted his own mri done and we would talk on my next visit. i went home and googled tonsillar ectopia so you can imagine how floored i was to see all my symptoms. on my next visit i brought printouts from the internet. well he was pissed and became so arrogant. i challenged him and he did not like it. he brought my husband and i look at the mri film and showded us the crowding and descend. he said it is not normal but is not causing my problems. there is also something with two ventricles that look like they have white caps on the end. whatever that means. he admitted he thought it was chiari on my first visit but said it wasn't the problem because it was only 2mm. what a contradiction to say something is not normal but can't be a problem. he wants to do a spinal tap and i said hell no! so i have an appt. with a neurosurgeon on march 9th and i pray he is not going to dissmiss like so many others. sorry so long! xxx spring lipstick, girl you rock! i have been venting over and over to my husband almost the exact words. what the hell are these doctors becoing doctors for, when clearly the can give a crap. i though helping the patient is the point. i have a 2mm tonsillar ectopia as an incidental finding. for 6 yrs, this has been sitting there on my reports and i have just found out. i gathered reports to bring to a neurologist and finally saw the findings. i asked this doc what this is and the asshole told me he never heard of this. so he wanted his own mri done and we would talk on my next visit. i went home and googled tonsillar ectopia so you can imagine how floored i was to see all my symptoms. on my next visit i brought printouts from the internet. well he was pissed and became so arrogant. i challenged him and he did not like it. he brought my husband and i look at the mri film and showded us the crowding and descend. he said it is not normal but is not causing my problems. there is also something with two ventricles that look like they have white caps on the end. whatever that means. he admitted he thought it was chiari on my first visit but said it wasn’t the problem because it was only 2mm. what a contradiction to say something is not normal but can’t be a problem. he wants to do a spinal tap and i said hell no! so i have an appt. with a neurosurgeon on march 9th and i pray he is not going to dissmiss like so many others. sorry so long!

xxx spring

]]> Comment on LIPSTICK by Becky http://droopybrains.wordpress.com/2008/09/12/lipstick-hey-its-the-buzzword-of-the-week/#comment-12 Becky Tue, 13 Jan 2009 19:44:38 +0000 http://droopybrains.wordpress.com/2008/09/12/lipstick-hey-its-the-buzzword-of-the-week/#comment-12 From one Chiari sister to another I have to say is this is an AWESOME post! I couldn't have said it any better! Take care, Becky From one Chiari sister to another I have to say is this is an AWESOME post! I couldn’t have said it any better!

Take care,

Becky

]]> Comment on LOVE by LoveR http://droopybrains.wordpress.com/2008/09/12/love/#comment-11 LoveR Thu, 09 Oct 2008 05:18:04 +0000 http://droopybrains.wordpress.com/?p=23#comment-11 Looking for it or lost it? Looking for it or lost it?

]]> Comment on AN INTRODUCTION TO MY DROOPY BRAINS by Jen _droopybrains http://droopybrains.wordpress.com/2008/09/09/an-introduction-to-my-droopy-brains/#comment-8 Jen _droopybrains Fri, 26 Sep 2008 02:10:09 +0000 http://droopybrains.wordpress.com/2008/09/09/an-introduction-to-my-droopy-brains/#comment-8 Hi Tammy, Your extra complaints are EXACTLY Chiari symptoms. Unfortunately, I can relate and identify with them 100%. I would definitely get another opinion. If there is any way for you to get to The chiari Institute I highly recommend it at any cost. They know precisely how you feel and why- Sadly, my surgery didn't fix those cognitive complaints. It did for a period of time, but they've all come back with a vengence. There are several studies going on that suggest that the cerebellum has a much greater roll in cognitive function than ever believed. As you probably know, the cerebellum mainly helps function your balance. These new studies - if proven correct- would open up a huge door to understanding why so many of us with Chiari feel so brainfarty. You can read a bit about the studies on Conquerchiari.com I wish you the best ~Jen Hi Tammy,
Your extra complaints are EXACTLY Chiari symptoms. Unfortunately, I can relate and identify with them 100%.
I would definitely get another opinion. If there is any way for you to get to The chiari Institute I highly recommend it at any cost.
They know precisely how you feel and why-
Sadly, my surgery didn’t fix those cognitive complaints. It did for a period of time, but they’ve all come back with a vengence.
There are several studies going on that suggest that the cerebellum has a much greater roll in cognitive function than ever believed. As you probably know, the cerebellum mainly helps function your balance. These new studies – if proven correct- would open up a huge door to understanding why so many of us with Chiari feel so brainfarty.
You can read a bit about the studies on Conquerchiari.com

I wish you the best
~Jen

]]> Comment on AN INTRODUCTION TO MY DROOPY BRAINS by Tammy Thompson http://droopybrains.wordpress.com/2008/09/09/an-introduction-to-my-droopy-brains/#comment-7 Tammy Thompson Fri, 26 Sep 2008 00:56:58 +0000 http://droopybrains.wordpress.com/2008/09/09/an-introduction-to-my-droopy-brains/#comment-7 I just had a vivit with my neuro yesterday, my chairi is now 7.It was 2 a year ago. he said he could fix it when ever I was ready. He said it was non life threatening. I have several other issues like spina bifida, tethered spinal cord, cysts and so on. All of it goes hand in hand. Here is my concern, I have headaches and nausea, dizziness and fatique which are all symptons verified but the ones i have that my dr says isn't from the chiari are, lack of concentration, memory problems, can't spit hte words out.I feel hung over and I,m irratible. I have episodes of feeling like I can't catch my breath, my heart races my aarms go numb and I feel like I'm going to faint. I have had ekg on my heart and xrays and blood work, everything looks ok but what the heck is going on with all that. Should I get a second opinion. I really like my dr. I have been seeing him only for a few visits .I really disliked my nuero I had in the past. Please give me feed back. I just had a vivit with my neuro yesterday, my chairi is now 7.It was 2 a year ago. he said he could fix it when ever I was ready. He said it was non life threatening. I have several other issues like spina bifida, tethered spinal cord, cysts and so on. All of it goes hand in hand. Here is my concern, I have headaches and nausea, dizziness and fatique which are all symptons verified but the ones i have that my dr says isn’t from the chiari are, lack of concentration, memory problems, can’t spit hte words out.I feel hung over and I,m irratible. I have episodes of feeling like I can’t catch my breath, my heart races my aarms go numb and I feel like I’m going to faint. I have had ekg on my heart and xrays and blood work, everything looks ok but what the heck is going on with all that. Should I get a second opinion. I really like my dr. I have been seeing him only for a few visits .I really disliked my nuero I had in the past. Please give me feed back.

]]> Comment on LIPSTICK by MICHAEL TILLER http://droopybrains.wordpress.com/2008/09/12/lipstick-hey-its-the-buzzword-of-the-week/#comment-5 MICHAEL TILLER Thu, 18 Sep 2008 05:27:08 +0000 http://droopybrains.wordpress.com/2008/09/12/lipstick-hey-its-the-buzzword-of-the-week/#comment-5 LIPSTICK YOUR BLOG IS GREAT. JUST TO GIVE YOU A LIL BACKGROUND ABOUT ME. I WAS DIAGNOSED IN JUNE OF 2006 WITH ACM TYPE II. I WAS IN THE ER WHEN THEY DIAGNOSED ME WITH IT AND THEY BROUGHT IN A NEUROSURGEON. HE GAVE ME MEDS TO START OFF WITH AND THEN AFTER THOSE DIDNT WORK HE TOLD ME I WAS GONNA HAVE TO HAVE SURGERY. SO I WENT THROUGH THE DECOMPRESSION SURGERY IN AUGUST OF 2006. IT WAS A LONG HARD RECOVERY FOR ME. ALL THE SYMPTOMS SEEMED TO GO AWAY AND SO WHEN I RECOVERED AND WAS CLEARED TO GO BACK TO WORK I DID. THEN IN FEB OF 2007 I STARTED HAVING PAIN IN THE NECK AND SHOULDER AREA. SO I WENT BACK TO THE NEUROSURGEON AND HE TOLD ME I WAS GOING TO HAVE TO HAVE A CERVICAL LAMENECTOMY.. SO I WENT THROUGH WITH THAT SURGERY AND AGAIN WENT THROUGH A HARD TOUGH RECOVERY WHICH WAS WORSE THAN THE DECOMPRESSION SURGERY RECOVERY. NOW MIND YOU WHILE I WAS STILL IN THE HOSPITAL AFTER THE 2ND SURGERY THE SURGEON TOLD MY MOM THAT THIS WOULD BE ALL THAT I NEEDED AND I WOULD BE FINE. SO AFTER CLEARED AGAIN TO GO BACK TO WORK I DID. I WAS DOING GOOD AT WORK THE FIRST COUPLE WEEKS OR SO AND THEN I STARTED HAVIN THE PAINS ONCE MORE. I WENT BACK TO THE SURGEON AND HE TELLS ME OH ITS TYPICAL AND YOU NEED TO GO TO A PAIN MANAGEMENT DOCTOR AND I DID. BUT SHE COULDNT HELP ME AT ALL. SO WITH ALL THE PAIN MY MOM TOLD ME TO QUIT WORK AND SHE WOULD TRY AND HELP ME AS BEST SHE COULD. SO NOW I HAVE BEEN TO NUMEROUS DOCTORS AND HAVE HAD A COUPLE OF MRI'S DONE AND THEY SAY EVERYTHING LOOKS NORMAL FROM THE SURGERIES. BUT I THINK OTHERWISE. I AM HAVING THE HEADACHES IN THE BACK OF MY HEAD AGAIN. IM HAVING THE SHOULDER AND NECK PAIN. AND NOW MY BACK IS IN EXCRUTIATING PAIN. MY MOM CALLS THE SURGEON BACK YESTERDAY AND TRIES TO MAKE AN APPOINTMENT. SO THEY HAD TO CALL BACK. I HEAR FROM THE SURGEONS NURSE AND TELL HER WHATS GOIN ON. SHE TELLS ME THAT I NEED TO HAVE AN CSPINE MRI DONE AND I HAVE TO DO THAT THROUGH MY PRIMARY DOCTOR. BUT WITH ME NOT WORKIN NOW I DONT HAVE A PRIMARY DOCTOR AND I DONT KNOW WHERE TO TURN NOW. I AM GOING TO A CLINIC IN 2 WEEKS THAT CHARGES YOU BASED ON YOUR INCOME. BUT I HAVE A FEELING WHEREEVER I TURN TO IM GONNA GET THE RUNAROUND AND STILL BE IN PAIN. I HAVE THE GUT FEELING IF THEY DO AN MRI THEY ARE GONNA TELL ME OH EVERYTHING LOOKS FINE AND NOTHING WILL HAPPEN. I JUST DONT KNOW WHERE TO TURN. I HAVE BEEN READING A LOT OF BLOGS SUCH AS YOURS WITH PROBLEMS OF THE DOCTORS SAYING EVERYTHING LOOKS FINE AND PEOPLE WITH ACM ARE NOT BEING TREATED CORRECTLY. I JUST DONT KNOW WHERE TO TURN AND WHERE I CAN GO TO GET SOME RELIEF. SORRY TO VENT LIKE THIS. BUT YOUR BLOG INSPIRED ME AND HOPEFULLY IN THE FUTURE SOMETHING WILL BE DONE FOR THIS ILLNESS. THANKS FOR LETTIN ME VENT. MICHAEL LIPSTICK YOUR BLOG IS GREAT. JUST TO GIVE YOU A LIL BACKGROUND ABOUT ME. I WAS DIAGNOSED IN JUNE OF 2006 WITH ACM TYPE II. I WAS IN THE ER WHEN THEY DIAGNOSED ME WITH IT AND THEY BROUGHT IN A NEUROSURGEON. HE GAVE ME MEDS TO START OFF WITH AND THEN AFTER THOSE DIDNT WORK HE TOLD ME I WAS GONNA HAVE TO HAVE SURGERY. SO I WENT THROUGH THE DECOMPRESSION SURGERY IN AUGUST OF 2006. IT WAS A LONG HARD RECOVERY FOR ME. ALL THE SYMPTOMS SEEMED TO GO AWAY AND SO WHEN I RECOVERED AND WAS CLEARED TO GO BACK TO WORK I DID. THEN IN FEB OF 2007 I STARTED HAVING PAIN IN THE NECK AND SHOULDER AREA. SO I WENT BACK TO THE NEUROSURGEON AND HE TOLD ME I WAS GOING TO HAVE TO HAVE A CERVICAL LAMENECTOMY.. SO I WENT THROUGH WITH THAT SURGERY AND AGAIN WENT THROUGH A HARD TOUGH RECOVERY WHICH WAS WORSE THAN THE DECOMPRESSION SURGERY RECOVERY. NOW MIND YOU WHILE I WAS STILL IN THE HOSPITAL AFTER THE 2ND SURGERY THE SURGEON TOLD MY MOM THAT THIS WOULD BE ALL THAT I NEEDED AND I WOULD BE FINE. SO AFTER CLEARED AGAIN TO GO BACK TO WORK I DID. I WAS DOING GOOD AT WORK THE FIRST COUPLE WEEKS OR SO AND THEN I STARTED HAVIN THE PAINS ONCE MORE. I WENT BACK TO THE SURGEON AND HE TELLS ME OH ITS TYPICAL AND YOU NEED TO GO TO A PAIN MANAGEMENT DOCTOR AND I DID. BUT SHE COULDNT HELP ME AT ALL. SO WITH ALL THE PAIN MY MOM TOLD ME TO QUIT WORK AND SHE WOULD TRY AND HELP ME AS BEST SHE COULD. SO NOW I HAVE BEEN TO NUMEROUS DOCTORS AND HAVE HAD A COUPLE OF MRI’S DONE AND THEY SAY EVERYTHING LOOKS NORMAL FROM THE SURGERIES. BUT I THINK OTHERWISE. I AM HAVING THE HEADACHES IN THE BACK OF MY HEAD AGAIN. IM HAVING THE SHOULDER AND NECK PAIN. AND NOW MY BACK IS IN EXCRUTIATING PAIN. MY MOM CALLS THE SURGEON BACK YESTERDAY AND TRIES TO MAKE AN APPOINTMENT. SO THEY HAD TO CALL BACK. I HEAR FROM THE SURGEONS NURSE AND TELL HER WHATS GOIN ON. SHE TELLS ME THAT I NEED TO HAVE AN CSPINE MRI DONE AND I HAVE TO DO THAT THROUGH MY PRIMARY DOCTOR. BUT WITH ME NOT WORKIN NOW I DONT HAVE A PRIMARY DOCTOR AND I DONT KNOW WHERE TO TURN NOW. I AM GOING TO A CLINIC IN 2 WEEKS THAT CHARGES YOU BASED ON YOUR INCOME. BUT I HAVE A FEELING WHEREEVER I TURN TO IM GONNA GET THE RUNAROUND AND STILL BE IN PAIN. I HAVE THE GUT FEELING IF THEY DO AN MRI THEY ARE GONNA TELL ME OH EVERYTHING LOOKS FINE AND NOTHING WILL HAPPEN. I JUST DONT KNOW WHERE TO TURN. I HAVE BEEN READING A LOT OF BLOGS SUCH AS YOURS WITH PROBLEMS OF THE DOCTORS SAYING EVERYTHING LOOKS FINE AND PEOPLE WITH ACM ARE NOT BEING TREATED CORRECTLY. I JUST DONT KNOW WHERE TO TURN AND WHERE I CAN GO TO GET SOME RELIEF. SORRY TO VENT LIKE THIS. BUT YOUR BLOG INSPIRED ME AND HOPEFULLY IN THE FUTURE SOMETHING WILL BE DONE FOR THIS ILLNESS. THANKS FOR LETTIN ME VENT.
MICHAEL

]]> Comment on SOME PORK FOR ME by Dana B http://droopybrains.wordpress.com/2008/09/10/some-pork-for-me/#comment-4 Dana B Sat, 13 Sep 2008 19:38:31 +0000 http://droopybrains.wordpress.com/2008/09/10/some-pork-for-me/#comment-4 Hi....Wow....Your writing style is awesome and you know, I have felt like you, that I have known for all of my life that I was different, that there is something wrong with me...and I was diagnosed with a syrinx June 08, from C5-T10, which to me is HUGE, but again, dimwitted physicians dismiss me. I have been hearing, "Oh, don't worry about it"....HA....My brain seems safely inside my skull as far as I know, MRI looks un-saggy, however I am concerned that my lower cerebellum is all crunched up inside my skull, creating Chiari 0; I can relate to most of your symptoms and I have a few extra that according to my PCP, "Are all in my head" YUP! You're right!!! HAHA.... How can we educate these physicians without pissing them off? My best to you and that you finally got your diagnosis and surgery! I hope I can be so lucky some day! Dana Hi….Wow….Your writing style is awesome and you know, I have felt like you, that I have known for all of my life that I was different, that there is something wrong with me…and I was diagnosed with a syrinx June 08, from C5-T10, which to me is HUGE, but again, dimwitted physicians dismiss me. I have been hearing, “Oh, don’t worry about it”….HA….My brain seems safely inside my skull as far as I know, MRI looks un-saggy, however I am concerned that my lower cerebellum is all crunched up inside my skull, creating Chiari 0; I can relate to most of your symptoms and I have a few extra that according to my PCP, “Are all in my head” YUP! You’re right!!! HAHA….
How can we educate these physicians without pissing them off?

My best to you and that you finally got your diagnosis and surgery! I hope I can be so lucky some day!

Dana

]]> Comment on SOME PORK FOR ME by Anonymous http://droopybrains.wordpress.com/2008/09/10/some-pork-for-me/#comment-2 Anonymous Fri, 12 Sep 2008 02:31:00 +0000 http://droopybrains.wordpress.com/2008/09/10/some-pork-for-me/#comment-2 I LOVE your blog, thank you for sharing your stories!!! I don't know if you remember, but we met at the ASAP conference. I'm the redhead and was there with my son, daughter, and husband. I would like to help in any way I can, but I have no idea where to even start. If there is something, anything you know of that I can do that would help, please don't hesitate to let me know!!!<br/>Thanks again for sharing your blog!!<br/>Lori Tutrow<br/>lttutrow@prodigy.net<br/>www.caringbridge.org/visit/keegantutrow I LOVE your blog, thank you for sharing your stories!!! I don’t know if you remember, but we met at the ASAP conference. I’m the redhead and was there with my son, daughter, and husband. I would like to help in any way I can, but I have no idea where to even start. If there is something, anything you know of that I can do that would help, please don’t hesitate to let me know!!!
Thanks again for sharing your blog!!
Lori Tutrow
lttutrow@prodigy.net
http://www.caringbridge.org/visit/keegantutrow

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