Sorry, I'm a newb

[redteamgo]

Hi.  I have had chronic headaches for about 6 years now.  I've been reading some of the posts on here and a lot of this sounds eerily familiar.  I uploaded some scans to my profile and was wondering if someone could have a look and tell me what they think.  I know you guys aren't doctors but you probably know more than them anyway so please have a look.  :-)

[selmaS]

The only way to locate a dr is doing research..we do have a list of drs that memebers here have gone to and liked...u still need to research to find one that is right for u, but it does make it easier....

Not all of us will find a true chiari dr in their area....so be advised u may have to travel...check with ur insurance b4 u make arrangements.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

"selma"

[redteamgo]

Thanks a ton.  You guys are really helpful.  Do you have a resource to find competent doctors on this condition if it does show positive?  I live in Georgia.

[redteamgo]

From everything I've read this image I just posted in my profile pics is the correct measurement.  It reads 9.7mm.  We shall see.  Again thanks everyone.  Even if I don't have it I will continue to keep you posted and hope you guys get some relief.

[selmaS]

I know we all want to wear the size like a badge of honor, but it is not the size that matters, it is the overcrowding and CSF blockage that does along with the symptoms.......so even if u r a 3mm herniation it does not matter....

Find a dr that will do the testing to check ur CSF flow....that is the nest step...and find a good NL and NS...both must know chiari .

"selma"

[Givenstrength]

I'm no dr but I defenitly see a herniation and my guess is more than 5mm prob closer to 10mm but that's just going off all the research I've done and comparing of normal MRI and MRIs that defenitly have chiari!

Good luck and keep us posted

[lu7997]

It doea look like crowding but I am not a doctor.  Mine is a borderline chiari of only 4 mm but it is wide and crowding the space therefore I have blockage.  But getting a doctor to tell me this was not fun.  I am a RN so many of my doctors I feel felt like I was self diagnosing and dismissed me sooner explaining that u have a headache that enables u from doing things is so difficult most people look and think take a dang Tylenol you wimp.  I have said so many times I wish my foot was missing instead at least than people would understand.


Good luck. And be your on advocate. Educate yourself on as much as u can and don't accept anything your doctors say unless you feel comfortable with it. Hope u feel better soon

[redteamgo]

Hey.  I added another image(it's the first one zoomed in).  Consider the yellow line as points A and B from left to right; and orange line C and D left to right.  Do you know which i am supposed to measure horizontally to establish the baseline for the T measurement?

[redteamgo]

I have the program that was embedded on the disk and allows you to manipulate the images.  I'm having trouble finding on the not where exactly you measure from the foramen magnum.  I see a lip that comes down on the anterior side but the actual 90 degree angle on the anterior side is much higher than the bottom of the lip.  Do I measure from the top or bottom.  Also on a T2W Mri bone shows up gray not black, correct?  Either way I measure it, depending on the start points, the T measurement is 4-9mm.   Is this significant?  Everything I read says none of the cerebellum should be past this line.

[Jennyfoo]

Ok, from what I see, it looks possible that you could have a mild herniation like I do. You don't however, have obvious hindbrain crowding cutting off CSF Like my MRI clearly shows, but it does look a little crowded at the tonsils.You need a CINE MRI To see if you have CSF flow problems. Get the MRI report for yourself. Don't trust the Dr to tell you. Often, if the herniation is less than 6mm, it won't even be put on the report, or it may say "Mild" or "Borderline" Chiari malformation. Most doctors will dismiss that as an incidental finding.

And, I'm no expert, just have looked at about a million MRI films trying to make sense of mine. My mother, however, is in the medical field and does read Xrays a lot and MRIs on occasion. She recently took a look at my MRI and backed up my interpretation.

[selmaS]

trust us we all know to well getting  someone to acknowledge and validate what is going on is just so rewarding...I know it may sound weird...but when u have HA's...u get looks, like sure u do....it just doesn't hold up like something that can be seen like a broken arm.

Validation is very much needed, then of course treatment so we can feel better : )

"selma"

[redteamgo]

Also, is there a thread on this forum where people have displayed their scans asking input that I can take a look at?

[redteamgo]

Thanks for your input.  i will wait on my doctor to get back in touch and see what he says.  I know this sounds weird but I almost hope it is this just to have a definitive problem where we can say, "let's treat problem A."  6 years of mytery and guessing is the pits.

[selmaS]

thieb9 is right...drs do not connect the dots...many with chiari have auto immune issues like Hashimoto's thyroiditis which could play a role  in ur ear buzzing....RA and DDD are things most get later in life, but us chiarians tend to get it a tad earlier.....

As for bowel issues...it can very well be GERD. Ehlers-danlos, or tethered cord....all somehow related to chiari.....

Lastly I feel it is the insurance  comps involvement that impedes the drs...once they make a dx they have to stop and treat....if they were allowed to continue to look and see what else may be involved or connected we might all be feeling a lot better a lot sooner.

[thieb9]

I dont think anything is too embarrassing when it comes to health issues.. To me it sounds like typical chiari symptoms, but I said before I am no doctor.. I do know that there are other conditions related to chiari that can cause some of these symptoms too.. Get the report from your doctor and see what it says. Doctors arent well educated in all ares so it is always good to get your reports when you can, in case they "leave anything out".. Best of luck to you. Hopefully you will have some answers soon..

[redteamgo]

Yea.  I have intermittent ringing in my ears.  Anytime I strain I get this pulsing/throbbing pain in the back of my head that will almost bring my to my knees.  Headaches, headaches, headaches.  Been told for 6 years that I just have migraines.  I've been telling them the whole time that it doesn't feel like migraines, but it's always "here try this anti-depressant/anti-convulsant".  Sometimes my trigeminal nerve feels like its buzzing from the pain.  I am constantly tired, I mean alllllll the time.  I forget what I'm talking about mid-sentence frequently.  I thought that maybe this was from the anthrax vaccine I took while I was in the military, but who knows right.  Oh, and I'm nauseous alot and this next one is embarassing....but I have trouble controlling my bowels.  Gotta love the anonymity of the interwebz.

[selmaS]

Hi and welcome to the chiari forum

Regardless if u have a dx of chiari u r welcome here to ask questions and we all offer ne support we can to help u get what ever dx it is....

There r many conditions with the same symptoms making testing necessary....and educated drs even more so....unfortunately, med schools do not give equal time to all conditions and some of the info is out dated.....

Be sure to look into family history and get ur dr to do as much testing as possible to rule things out.
Even look into falls or MVA u may have been in a few yrs earlier that may be playing a role.

Good luck and do keep us posted on ur progress : )

"selma"

[thieb9]

Unfortunately some doctors will read this on a report and not tell you because they think it is just an "incidental" finding. I would try to get a copy of the report from where ever you had the mri done, if the doctor doesnt contact you soon. Do you have any other symptoms besides the headaches?

[redteamgo]

Not yet.  Still waiting on the doctor to call me back.  

[thieb9]

Hi there. Did they happen to give you any reports with these scans?