Since 2005 I have been trying to figure out what has been causing the many symptoms I experience, pressure in my head at the base of my skull and in the temple area, pain down the spine into/under the shoulder blades, the typical straining actions that make your head feel like it will explode, stabbing pains in my head/brain, ringing in my ears, my memory is well not much of a memeory anymore, lump in my throat when I swallow, trouble finding the words when two seconds before I knew what I was thinking or going to say. The newest problem is constant pins and needles in my left leg from just above the knee to my toes?
I just received my MRI/MRA results (this MRI was done laying down but I have read that sitting or standing would be more accurate??) and am thoroughly confused, I have a 5mm low lying cerebellar tonsils/tonsillar ectopia yet the final impression on the radiologist's reading says that it's with out evidence for a Chiari 1???? I though that 5mm in combination with all my symptoms was considered type 1? I am going to give the findings as they are written and if ANYONE can HELP me with questions for my Dr. appointment tomorrow with my neurologist it would be a lifesaver!!! I have been given the brush off by many Dr's for almost 7 years!!!!
Findings:
MRI BRAIN:
Ventricles and sulci are within normal limits for age. There is no hydrocephalus. There is no midline shift, mass effect or abnormal extraaxial fluid collections. Cerebellar tonsils are situated approximately 5mm below the level of the foramen magnum, with a normal rounded appearance. The orbital apices are clear. Pituitary gland is within normal limits in size. There appears to be a very tiny 1-2mm T2 hyperintense lesion within the pituitary gland. The flow voids of the circle of Willis ar visualized, implying that the vessels are patent.
Chiari Malformation has many parameters but what it all boils down to is "hindbrain herniation" - meaning the back of your brain is coming out of your skull. I find it very interesting that your age is addressed in this report. It's almost like they are saying, "everything's fine, considering your age, you feel just as crappy as you should." I have read that the tonsils can sag down a bit as you age but the real issue is - does that cause you symptoms that greatly impacting your quality of life? If so, then that is cause for treatment. much love<3
"everything's fine, considering your age, you feel just as crappy as you should." I love it!!!! I may ask my Dr. tomorrow if this is how they determine I should be dismissed???
Bill Zern said:
Chiari Malformation has many parameters but what it all boils down to is "hindbrain herniation" - meaning the back of your brain is coming out of your skull. I find it very interesting that your age is addressed in this report. It's almost like they are saying, "everything's fine, considering your age, you feel just as crappy as you should." I have read that the tonsils can sag down a bit as you age but the real issue is - does that cause you symptoms that greatly impacting your quality of life? If so, then that is cause for treatment. much love<3
ok i did not read your whole post i kinda stopped from your heading...LOL...and wanted to say
Your doctor is a IDIOT GO FIND ANOTHER ONE...ESP if You are Having SYMPTOMS, I had a 5mm herniation, WITH multiple symptoms was getting that same BS crapola from doctors even heard "come back to me when you can no longer breathe", "gee, Chiari cant be causing all this- you must have other things wrong with you", "by all means get another opinion" and I am SO GLAD I WENT and got a 3rd anf 4th opinion!! and Id suggest you do the same!!
Oh my gosh-I hope you get some help and some relief. Feeling so awful is torture.
I have a feeling that I have a long road ahead of me still.....
Lisa W said:
ok i did not read your whole post i kinda stopped from your heading...LOL...and wanted to say
Your doctor is a IDIOT GO FIND ANOTHER ONE...ESP if You are Having SYMPTOMS, I had a 5mm herniation, WITH multiple symptoms was getting that same BS crapola from doctors even heard "come back to me when you can no longer breathe", "gee, Chiari cant be causing all this- you must have other things wrong with you", "by all means get another opinion" and I am SO GLAD I WENT and got a 3rd anf 4th opinion!! and Id suggest you do the same!!
Thanks sooo much!!!
Gma7938 said:
Oh my gosh-I hope you get some help and some relief. Feeling so awful is torture.
heather it doesnt have to be so long---- be your own advocate!! and find the right doctor,& the right treatment for you! even if it includes travel
wishing you all the best
~Lisa
What about the T2 hyperintense lesion? Maybe that along with the Chiari malformation is causing your symptoms? Or did they tell you not to worry about the lesion either!?!
I saw my Neurologist and things went EXACTLY as I suspected, same crap different day. But thanks to a kind soul within this support group whom sent me a message last night about contacting the Mayfield Clinic in Cincinnati the ball is rolling!!! I sent them my most recent MRI/MRA's from last year and filled out the questionnaire and received a call back within 4hrs, they plan to get the imaging results since mine are only the report and go from there.
Amazing that I saw a doctor that dismissed me, not to mention made me wait 2 1/2 hours before he even saw me, and then the Mayfield called and I actually feel hopeful for the first time in 7yrs. I know in the whole scheme of things this is only a small victory but it's proves to all the 10-15 doctors I've seen over the years that I'm not crazy or "overdramatizing things the way we women do".
Above all thanks to everyone who offered support......guess we're just one big family LOL!!
I'm glad that you called them. Like I said, I only wish that I had insurance that would let me go out of state. I would be seeing Dr. Andrew Ringer in a hot second. Dr. Tuo (spelling?) is one of the best, he is the Chief Neurosurgeon here and he only brings in the best. Maybe with any luck you will be able to see either Ringer or Tuo. Ringer is so hamdsome too :)~
Your Chiari Sister
Lori D
Heather,
I too suffered from the same issue. My tonsillar ectopia was 4mm lying down and 6mm sitting up. It took me 5 months and the same exact symptoms before I got help. I got so sick that I started losing vision in my rt eye, having difficulty breathing, leg numbness, difficulty walking, terrible electrical headaches, the list goes on and on. After seeing 4 neurologists that told me it didn't fit into "Chiari" I was finally referred to a neurosurgeon. I had decompression surgery and a C1 laminectomy two days later! The surgeon said that I was close to death! Once they opened me up they found that I had multiple arachnoid adhesions covering and squeezing the herniation. Please listen to your body, it will always tell you when something is wrong. I don't wish what I have gone through on anybody. If you have any questions please feel free to contact me. Just because it is 5mm doesn't mean anything! You are in my thoughts.
Emily
Interesting that you mention the difference in your ectopia difference between laying down and sitting up...I am waiting on my follow up MRI's to be scheduled this week for my neck and brain, I wish it could be done sitting up. I know it does make a difference, seeing we all are upright most of the time I wish they were done that way??
I guess this is a start, knowing my results are going to the Mayfield Clinic is reassuring. "having difficulty breathing, leg numbness, difficulty walking, terrible electrical headaches" these are all things that I am experiencing NOW & DAILY and are getting worse as time goes by.
How have you been since your surgery? Have the symtoms returned I have heard they can?
Dr. Duntz is the Neurosurgeon I will be seeing once he reviews all of my past and upcoming MRI's, have you heard of him?
Lori it's such a joke you cannot see who YOU want to....just not right!!
Lori D said:
I'm glad that you called them. Like I said, I only wish that I had insurance that would let me go out of state. I would be seeing Dr. Andrew Ringer in a hot second. Dr. Tuo (spelling?) is one of the best, he is the Chief Neurosurgeon here and he only brings in the best. Maybe with any luck you will be able to see either Ringer or Tuo. Ringer is so hamdsome too :)~
Your Chiari Sister
Lori D
Heather, are you in the Norther Ohio Area? I would suggest Dr. Violette Recinos (a NS that specializes in pediatric and adult Chiari) at the Cleveland Clinic. We met with her and even though she determined using additional testing and imaging that chiari wasn't really the cause of my wife's problems, she VERY knowledgable and VERY thorough in her examination/investigation of my wife's case.
I have a 13mm herniation and yet I too found physicians who didn't specialize who said, "no issue." Unfortunately you're experiencing what is an all too common theme on this board and with patients in general. That theme is an under-educated physician, who lacks experience or adequate judgment, and they misdiagnose the issue. Yet, when the patient is brave and self-reliant enough they push on, and eventually find the right physician and sure enough they do have a problem, and do get treated - and do find resolution to some extent.
I've spent the better part of my life in operating rooms from the Mayo Clinic to Duke University and unfortunately we have to remember that physicians are as fallible as any other professional. I've witnessed surgeons operating on completely the wrong limb, showing up to surgery hung-over (or still slightly intoxicated), or even causing death as a direct result of mistakes. Can't tell you how many times such things have happened. But, like any profession, there are incredible physicians out there too, who are brilliant, almost flawless, and do wonderful work for all of their patients.
Biggest thing to remember, we all tend to assume physicians can do no wrong and all of them are at the same level. If what you hear from one physician (or more) just doesn't satisfy you or ring true in your heart, keep pushing on until you find the right person.
These is even more true with a rare disorder like this. So glad you found Mayfield Clinic!
I live between Dayton and Columbus but believe me I am willing to drive anywhere needed to get treated by someone that knows what they are doing, and covered by my insurance naturally LOL!!
I've got my fingers crossed that once I get my MRI's done this week and sent to Mayfield I will at least be in the hands of someone that knows what they are looking at.....
Docj said:
I have a 13mm herniation and yet I too found physicians who didn't specialize who said, "no issue." Unfortunately you're experiencing what is an all too common theme on this board and with patients in general. That theme is an under-educated physician, who lacks experience or adequate judgment, and they misdiagnose the issue. Yet, when the patient is brave and self-reliant enough they push on, and eventually find the right physician and sure enough they do have a problem, and do get treated - and do find resolution to some extent.
I've spent the better part of my life in operating rooms from the Mayo Clinic to Duke University and unfortunately we have to remember that physicians are as fallible as any other professional. I've witnessed surgeons operating on completely the wrong limb, showing up to surgery hung-over (or still slightly intoxicated), or even causing death as a direct result of mistakes. Can't tell you how many times such things have happened. But, like any profession, there are incredible physicians out there too, who are brilliant, almost flawless, and do wonderful work for all of their patients.
Biggest thing to remember, we all tend to assume physicians can do no wrong and all of them are at the same level. If what you hear from one physician (or more) just doesn't satisfy you or ring true in your heart, keep pushing on until you find the right person.
These is even more true with a rare disorder like this. So glad you found Mayfield Clinic!
You are soooo right in saying we have to be our own advocate...after I went to my so called neurologist, that I waited 2 1/2hrs to see and who couldn't connect the dots between all of my symptoms, has yet to do a darn thing. This neurologist whom appears to have made up his mind I have anythign BUT chiari hasn't ordered my MRI, from my visit on 4/12/12, of the neck and brain the mayfield clinic is waiting for. Why are they dragging their feet you may ask? My doctor has decided to treat me as a new patient so he can't submit the request to the insurance till next week Monday 4/23/12....CAN ANYONE SAY INSURACNE SCAM? How am I a new patient if I was there for a follow up? The 5mm low lying cerebellar tonsils w/ ectopia herniation, numbness in my right leg from the knee down for four weeks now combined with phases of slurred speech and my body going into involuntary spastic movment similar to a seizure...I have trouble speeking, breathing andy controlling my body from tightening, legs kicking etc. I am nearing black-outs. Ended up in the ER since the convulsing, or whatever you want to call it, went full go at her office during a check-up.
This involuntary movement is becoming a daily occurance even though it just started a week ago. Prior to that this maybe only happened a few times if that, this is effecting my walking, speech, and mental clarity. This is all progressing so quickly, has anyone been through something similar?
Lisa W said:
heather it doesnt have to be so long---- be your own advocate!! and find the right doctor,& the right treatment for you! even if it includes travel
wishing you all the best
~Lisa
Heather,
My neurosurgeon told me that the amount of herniation is NOT the problem, it is what the herniation is trapping and blocking off. I am doing terrific since the surgery! I was a day away from being 6 feet under. When you are experiencing these severe types of symptoms, it is imperative that you get help right away. My breathing got so terrible that I was at 56 percent lung function. Apparently, the nerves that control your diaphragm can be affected by the herniation. I am now at 77 percent! since the surgery. Feel free to message me anytime, if you need to talk i will be happy to give you my number. You are in my thoughts!
Emily
Heather-Ohio said:
Interesting that you mention the difference in your ectopia difference between laying down and sitting up...I am waiting on my follow up MRI's to be scheduled this week for my neck and brain, I wish it could be done sitting up. I know it does make a difference, seeing we all are upright most of the time I wish they were done that way??
I guess this is a start, knowing my results are going to the Mayfield Clinic is reassuring. "having difficulty breathing, leg numbness, difficulty walking, terrible electrical headaches" these are all things that I am experiencing NOW & DAILY and are getting worse as time goes by.
How have you been since your surgery? Have the symtoms returned I have heard they can?