Results from mri

[Southpaws3]

I had a mri  done on friday and this morning i go to the hospital and get the report cerebral tonsils are 7mm below the foramen magnum. And subtle findings suggesting an incidental chiari -1 malformation.  This all being after i have had headaches for years along with memory loss and just feeling a little looney honestly . It has gotten worse in the past few months i had neck surgery in jan to fix a herniated  disc i am not working because i cant really function right if i go to the store by myself i just stand there with no idea what to get. Do i have chiari by the sound of the report whats my next step? Any replys welcome . Thank you

[selmaS]

  I went yrs with Drs trying to convince me I had depression and anxiety issues....they shoved all kinds of meds at me....I refused to take them.

The problem is there are not enuff  well informed or experienced Drs out there.....we need more....we just had Chiari awareness month for the 5th yr in a row....and we tried hard to get people to realize that more have Chiari then MS....but it is not what people know so it tends to fall on deaf ears.

So now you need to find a true Chiari specialist....once you are DX'd you no longer need the NL who does the DXing...you need someone to see if you are a surgical candidate or if there is other treatment for you...PLUS the ever present related conditions need to be ruled out.

  

[KerriC1]

@llasel I agree it should be criminal in the way Drs make you feel. I wish they had as much courage to admit they have no clue as they do to tell you that you're depressed or anything else they can think of. It's deff a hard pill to swallow when you know something's not right and all you want is validation and relief.... If only the medical community were up to date on this condition. So many people would be spared the humiliation

[lasel22]

I completely understand your frustration.  A neuro otologist diagnosed my chiari and recommended a neurosurgeon who he thought would treat me well and I was completely dismissed.  My neuro otologist actually called the neurosurgeon personally and argued my case but got no where. I went from neurologists to neurosurgeons to another neuro otologist and was pretty much told I need to "talk" to someone, i.e. I had mental problems.  This went on for seven months until I finally  (last ditch effort before coming to the conclusion that I possibly might have lost my mind) decided to send my scans to two well known chiari specialists who both agreed that chiari was the problem.

Don't give up if you think it's chiari.  Send your images to a specialist.

I've actually been told it would be criminal to operate on me by some of these fruit loop neurologists.  They say it with such arrogance too, and laugh when I ask if it could be chiari.  Then they told me I need anti depressants.   I think that is more criminal, to be made to think your symptoms are not real and you are having a breakdown.  One thing I've learned is that most doctors have no clue about chiari.  I had my appointment with my primary doctor for medical clearance for surgery the other day and he FINALLY admitted he didn't know much about "Budd-Chiari".  It took all I had not to roll my eyes.  Budd-Chiari is a liver condition, it's completely different from chiari.

As you can see, I'm still a little bitter.   Don't give up.  You just need to contact the right people before eliminating chiari as the cause of your symptoms.

Good luck.

[KerriC1]

I understand totally the defeated feeling you have when you are brushed aside and laughed at by ill informed Drs... I had a neurologist at one time yell at me to "pay attention" while undergoing the neurological exam that I was failing. He made me run down the hallways and laugh when I couldn't do it because it hurt my head and my legs were too weak. He said he saw "hundreds of chiari patients and they none had issues with it". He also told me that I probably had a chemical imbalance and depression that triggered migraines, and tried to give me anti depressants which I crumbled up and refused....

Years later I sought out a specialist who confirmed chiari ,overcrowding of the brain, restricted csf flow, and a kinked brainstem. Also I was diagnosed with EDS, and I am most 10 weeks post op. Not saying it's easy by any means, but it's well worth it to seek out a chiari specialist.

Hang in there southpaws!

[Southpaws3]

I went to my first neurologist last  week , it was a joke he said my mri was fine  even though i read the report and  told u the infotmation up above , he said i had major clinical depression  and was laughing at me asking me what disease i thought i had .... I was in disbelief. Now back to the drawing board gonna get an appt with my doctor again and try to get my records sent to a chiari specialist for their opinion. Im just shocked  he said my tonsils were 2 mm below when the diagnosis clearly states 7 mm  he also said for my 25 years experience i have only seen two chiari cases that had very long tonsils and you do not have this....... Advise please

[selmaS]

  A Chiropractor is someone you should avoid when you have Chiari as they can make it worse if/when they manipulate your neck.

GI issues are very common for those with Chiari and EDS.....

Do get checked for sleep apnea, as the cause is an obstruction to breathing...and will wake you during sleep but if you have issues while awake....I am concerned the issue is there....so do have it checked.

Just know you are not alone <3

[Southpaws3]

Thank you so much i feel like my helplessness feeling might get conquered i have been going to a chiropractor for the last couple of years and the pain never went away like i have a neckbrace on but no neckbrace, when i had my disc replacement with a plate and screws i thought i wouls be all fixed up , i also have severe nausea if i dont drink constantly i get so sick to my stomach instantly dr put me on omeprazole , but still happening i suddenly stop breathing at times also like someone put a cover over my throat hole no air out or in .  Hysterectomy , gallbladder removal  geez im a mess !!  Thanks for all your direction ill research as much as i can and have a blessed day

[selmaS]

  I told my hubby the same thing at one point b4 I got my DX....I told him I couldn't take much more and felt like I would go crazy....very scary to not know why we felt like that.

Neck pain can be the Chiari as it can cause neck and shoulder stiffness and limits ROM of the neck.

I was given meds like that too..going back to when I was still in high school....

There is only one Dr listed for your state...you may find you may have to travel out of state...I know nothing of this Dr except a member went to them.....so do some research meet the Dr....but meet a few others and educate yourself on Chiari and ALL related conditions b4 you decide who will be your Dr

OKLAHOMA

Dr. Caple  A. Spence
8121 National Ave Suite 219
Midwest City, OK

[Southpaws3]

I live in oklahoma in fhe US.  Thank you so much for replying i really thought i was bipolar or something , or going crazy  i am 39 years old , i have emphysema as well, constant neck pain and headaches even after my neck surgery along with pressure in my head its almost unbearable , and my doctor continues to give me antidepressants. Someone who can really help me would be truely appreciated. Thank you .

[selmaS]

  Hi and welcome to the Chiari forum.

Since you were told "an incidental Chiari I Malformation" I would say find a Dr that specializes in Chiari and ALL related conditions.....Finding Chiari is not incidental BUT too many Drs are not well informed enuff or experienced to know how Chiari can and does affect us...

One of the related conditions can cause disks to herniate....Ehlers-Danlos should be ruled out as Syringomyelia, tethered cord, ICP, CCI, POTS...Sleep apnea.

Get copies of your MRI and the report going forward get copies of all testing and reports.....

It is possible you have  Chiari as the report says you do...they called it incidental bcuz they feel it will not cause you symptoms...

The next testing should be to check your CSF flow.....a CINE MRI...then a MRI of your complete spine and rule out ALL related conditions....

Let me know what area you are in to give you names of Drs to research....the names I post are not referrals nor an endorsement of those listed...the names were compiled by members of Drs they have been to, treated by and liked...you need to educate yourself on this and all related conditions so you can research and choose the right Dr for you.