Aa
Can someone help read my mri i think i might have chiari or csf leak
I had my daughter a year ago and I also have a 3 year old son. Before having my daughter I felt completely normal minus extreme fatigue which I figured every pregnant woman has. I had an epidural which caused a spinal fluid leak. I then had a blood patch which worked for a few hours, then a 2nd one which didn't work. My neck pain was horrible and I continue to have bad neck pain though not as bad as before. I also have bad headaches. Im on nortriptyline which helps.
cervical mri readys straightening of cervical curvature. tonsils extend up to level of the foramen magnum.
there is more but Im thinking of going to a chiari specialist. I was to 3 different neuros. First one put me on nortriptyline and said I do not still have a leak and that sometimes theres no diagnosis and gave me the meds. 2nd said I better go back to the hospital where the leak started. 3rd(was at the hospital that the leak started). Said its very unlikely I still have a leak because the brain mri said it pretty much resolved but that it is unsure and can be a very small leak in my spine. She recommended a high volume blood patch.
Neurosurgeon isn't a chiari specialist said he doesn't recommend a blood patch and its unlikely I have a leak but he can check my pressure in a few months if this continues.
Im so frustrated. taking care of 2 babies with bad health issues. currently in pt and no one gives a crap! Im at my wits end. Is there someone that can read my mris. my mother thinks I have a bad back and migranes not to mention my hyper thyroiditis and adrenal insufficiency. along with my tinnitus, dizziness, and extreme fatigue.
HELP!
CERVICAL SPINE
what does STRAIGHTENING OF CERVICAL CURVATURE MEAN AND TONSILS EXTEND UP TO LEVEL OF THE FORAMEN MAGNUM.
BRAIN
INTERVAL RESOLUTION OF THE PREVIOUS NOTED INCREASED T1 SIGNAL WITHIN IN THE HIGH LEFT PARIETAL CORTICAL REGION WITHOUT EDEMA OR MASS EFFECT
THIS WAS DONE 3 MONTHS AGO
cervical mri readys straightening of cervical curvature. tonsils extend up to level of the foramen magnum.
there is more but Im thinking of going to a chiari specialist. I was to 3 different neuros. First one put me on nortriptyline and said I do not still have a leak and that sometimes theres no diagnosis and gave me the meds. 2nd said I better go back to the hospital where the leak started. 3rd(was at the hospital that the leak started). Said its very unlikely I still have a leak because the brain mri said it pretty much resolved but that it is unsure and can be a very small leak in my spine. She recommended a high volume blood patch.
Neurosurgeon isn't a chiari specialist said he doesn't recommend a blood patch and its unlikely I have a leak but he can check my pressure in a few months if this continues.
Im so frustrated. taking care of 2 babies with bad health issues. currently in pt and no one gives a crap! Im at my wits end. Is there someone that can read my mris. my mother thinks I have a bad back and migranes not to mention my hyper thyroiditis and adrenal insufficiency. along with my tinnitus, dizziness, and extreme fatigue.
HELP!
CERVICAL SPINE
what does STRAIGHTENING OF CERVICAL CURVATURE MEAN AND TONSILS EXTEND UP TO LEVEL OF THE FORAMEN MAGNUM.
BRAIN
INTERVAL RESOLUTION OF THE PREVIOUS NOTED INCREASED T1 SIGNAL WITHIN IN THE HIGH LEFT PARIETAL CORTICAL REGION WITHOUT EDEMA OR MASS EFFECT
THIS WAS DONE 3 MONTHS AGO
If you want to pursue the leak path then you should stick to cedars. Mayo is not so good at these things, from what I have heard.
You don't need to lie flat a whole day but you should lie flat or in trendelenburg position for two or three hours. Don't even go to the toilette. And then you shouldn't bend or lift for one month. But mostly I think it is a matter of luck, some patches stick others don't. That's just the way it is.
You should try to get your patches some place where they are used to giving patches because there might be some differences in what protocol they use. Especially for high volume patches.
Go to csfleak.org and read more.
But if you have the opportunity try to go to cedars.
Duke is also sometimes recommended.
Since you know where you got your spinal tap the blood patches have higher probability to work (since they can inject at the right level).
You should be able to get healthy again.
Let me know how it goes!
Good luck!
You don't need to lie flat a whole day but you should lie flat or in trendelenburg position for two or three hours. Don't even go to the toilette. And then you shouldn't bend or lift for one month. But mostly I think it is a matter of luck, some patches stick others don't. That's just the way it is.
You should try to get your patches some place where they are used to giving patches because there might be some differences in what protocol they use. Especially for high volume patches.
Go to csfleak.org and read more.
But if you have the opportunity try to go to cedars.
Duke is also sometimes recommended.
Since you know where you got your spinal tap the blood patches have higher probability to work (since they can inject at the right level).
You should be able to get healthy again.
Let me know how it goes!
Good luck!
I just wanted to mention that I did not have a good experience with dr bejjani. I am now looking for another dr as my symptoms are getting worse. I have great insurance but don't know whether to go to ny, Denver or Cincinnati. I know I am lucky but tired of drs ignoring my symptoms.
COMMUNITY LEADER
I am so sorry u had that experience....not sure why ....some Drs have bad bedside manor and others have a bad day here and there....sigh....
Since the patch is not working for u I would lay down for a longer time frame....only get up to use the restroom.....keep hydrated with water...
sending u prayers a 3rd patch is the charm <3
I actually did lol! I sent to dr. s. He emailed me saying he can't' find any signs of a leak but that that's not uncommon for a pdph. So they think I might have a small leak causing this! I might get a 3rd blood patch but am scared to as I had a blood clot after having the first 2 blood patches : (. Im thinking of going to the Mayo clinic for them to run tests to figure out but I might just go get the 3rd patch. Do you have to lay flat for a day for it to work. they keep giving me the patch then 3 hours telling me I can get up but I heard you have to lay flat for awhile.
Do you have orthostatic headaches? (headaches that get worse when standing up)
You must understand that a spinal leak can give a brain sag that will look like chiari on the MRI.
You should contact cedars sinai, they are the best when it comes to spinal leaks. You can send them your recent MRIs and they will review them for free. They constantly find signs of leaking where others don't.
Take care!
You must understand that a spinal leak can give a brain sag that will look like chiari on the MRI.
You should contact cedars sinai, they are the best when it comes to spinal leaks. You can send them your recent MRIs and they will review them for free. They constantly find signs of leaking where others don't.
Take care!
I went to dr. Bejjani yesterday and he spent no time with me didn't even look at my mris really! He said my leak would've healed by the look of my mri and that my tonsils are not that low lying and I asked him what they were he didn't even tell me? He rushed out of office and into his car! what the heck? Think I need another opinion? He told me to get off my medicine and then I will know whats going on. So frustrated. Maybe il try where you went Selma. He was pretty rude.
COMMUNITY LEADER
Pittsburgh is a 5 hour drive so we went to NY to TCI since my DD lived up there at the time it was just easier for us to go there.....
As I mentioned in the other thread you posted is that you may have acquired Chiari as a result of having a leak....??? Not sure, but it is possible.
Something to ask the Dr if you do have Chiari is it congenital or acquired.
Im by Pittsburgh pa about 15 miles away from it. Dr. Bejjani is the dr. I sched with. theres also a dr. maroon but I cant get in until aug. to see him. Theres one 3 hrs away but my family isn't understanding so im going to the closer one. Where did you go to?
I might be getting a 3rd blood patch if they think its still a leak, but the person performing the patch saw me when I was in the hospital the first time and is doubtful it's still a leak since its a year later and ive already had 2. Im not sure though. So im going to dr. bejjani but my insurance doesn't cover it so I don't even know how I am going to afford it. Its really scary and upsetting.
I might be getting a 3rd blood patch if they think its still a leak, but the person performing the patch saw me when I was in the hospital the first time and is doubtful it's still a leak since its a year later and ive already had 2. Im not sure though. So im going to dr. bejjani but my insurance doesn't cover it so I don't even know how I am going to afford it. Its really scary and upsetting.
COMMUNITY LEADER
I am also in PA and I went out of state as I was not happy with those I did find....good luck.
If they come and go they may not be from a leak ......hmmm hard to say.
What part of PA are u in?
thankyou so much Selma! Im trying to find a good dr in pa. <3 I will keep you guys updated on if its a leak or if its chiari or what else. Ive heard of ppl having spinal headaches and mine was a much different experience, as ive already had blood patches and rested even in hospital. The headaches come and go : (
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Straightening of the cervical lordosis.....the cervical spine has a natural curve to it, yours is not curved as it should be and this alone can cause pain.
Straightening is also known as soldiers neck from the way they stand at attention....and it can also occur from an accident or fall....even stress....the muscles will twist and turn in the opposite direction and cause neck and shoulder pain as well as headaches....
As for the tonsils extending to the level of the foramen magnum is just an indication that your cerebral tonsils are low.....the next thing you will want to know is do you have Chiari...low tonsils is not Chiari....Chiari is the malformed skull. And you will want to know if the tonsils are creating a CSF obstruction....a CINE MRI will help with that.
A CSF leak can pull the tonsils down....so it may not be Chiari, but full testing should be done to make sure as Chiari can lay dormant until something like child birth or an accident...even a hard cough or sneeze, once triggered it can also cycle, so symptoms can come and go.
There are not many well informed and experienced Drs for this condition, so you will want to educate yourself to help identify the right Dr for you.
Know you are not alone <3
that's what im gonna do bc ive only been to neurologist and neurosurgeon that didn't barely spend time.
I bumped up the doctors list. Remember these are not referrals, they are Dr others have used and consider. Here is the name of the list
List of Chiari Drs USA ~~~2013-2014
List of Chiari Drs USA ~~~2013-2014
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