Borderline Chiari 1 Malformation?

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Borderline Chiari 1 Malformation?

Postby luvmy2grls » Fri Aug 05, 2011 11:15 am

Hiya,
I had a brain MRI/MRA done and a C-spine MRI done separate times for the same reasons.

Anyways, the c-spine mri didn't say much accept for "right posterior lateral disc protrusion extending into the entrance of the right lateral foramen" and it also says "Posterior Fossa and Brainstem, no Chiari malformation."

The Brain Mri says differently.. It says" There is a small, incidental Tornwaldt cyst involving the nasopharyngeal region. This is of no clinical significance. Very mild mucosal thickening in both maxillary and ethmoid sinuses.

The cerebellar tonsils are somewhat low lying, and there is a borderline Chiari 1 malformation.

IMPRESSION:
1. Intracranial contents are negative. borderline low-lying cerebeller tonsils.

2. Mild muscoal thickening in both ethmoid and maxillary sinuses.

So I was wondering how often are these taken seriously? Also, is it just difference in oppinions why the radiologist who read my c-spine said "no chiari" and the one who read the brain said "borderline chiari"? I mean the neurologist despite all of my symptoms has told me I am fine and suggested I do some physical therapy or something and follow up with my GP.. Now I know I'm not doctor or radiologist or anything like and beings the report didn't include a "number" for herniation I attempted to measure myself and it looks like it may something like 3mm-4mm. Is this something that neuro's will take seriously given my symptoms if I PUSH?? I just can't take it anymore... I have had a headache everyday for more than 5 years!

I went ahead and scheduled and appt with and ENT regarding the Tornwaldts cyst.

Here are the symptoms that I deal with daily...

Headaches (daily and migraine)
Tingling (hands,feet,and face)
twitching hands and now other muscles throughout my body
balance issues
muscle fatigue
calves ache and are sensitive to cold or air movement
feet hurt just after standing 15mins or even sometimes less
forearms and elbows hurt
acid reflux
constant sinus drainage
heat senstive
low back pain
neck pain
heavy painful periods
facial pain

These are just about half of them.. And things have just progressively gotten worse over the years.

any help is appreciated!

thank you!
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Re: Borderline Chiari 1 Malformation?

Postby keggler 1 » Fri Aug 05, 2011 2:12 pm

Hello........Hang on for the ride........Chiari 0 is a possibility.....Start documenting everything to do with your condition.........It will help later.Good luck and God bless.

...Jerry in Carolina...
ACM S/M BI Hiatal Hernia EDS III Successful PDF 2007 Dr Rosner
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Re: Borderline Chiari 1 Malformation?

Postby phyrehawke » Tue Aug 16, 2011 12:12 pm

I have borderline chiari. IMO the major risk is if you sustain a concussion, then there is no room in the hindbrain (as there is normally) to accomadate minor brain swelling.
Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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Re: Borderline Chiari 1 Malformation?

Postby toport20 » Fri Sep 02, 2011 12:50 am

Hi!

Keep on top of this! I was in the same boat, now my chiari is 8mm after about 3 years. Not saying yours will get worse, but I did experience similar symptoms! Good Luck!!
Pre OP:
SM 3mm C3-L1
Tonsillar Herniation 5mm due to TCS
TCS Surgery TCI 6-6-08
ICT 6-7-08

Post OP: 2011-MRI
CM 8mm
SM C2-C6 9mm

PFD done in May 2012
Arachnoiditis found
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Re: Borderline Chiari 1 Malformation?

Postby tennesseewalker » Fri Sep 02, 2011 3:47 pm

You need to have a NS read your films. They will only do PFD if in their opinion it is necessary and will help your symptoms.

My brain MRI was read as normal. Then I sent the films to my twin for her NS to read. Her NS said CM was obvious and asked "who read these, Mickey Mouse?"

Had MRI of C-spine which showed HUGE syrinx, and the radiologist stated "specifically I do not see Chiari Malformation or tonsillar herniation."

My NS read the films & I had PFD a week later which did cause collapse of syrinx. According to my NS, there were "dramatic changes in the spinal cord itself."

Don't accept that there is no CM until you hear it from a NS.

Good luck dear.
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Re: Borderline Chiari 1 Malformation?

Postby toport20 » Sat Sep 03, 2011 7:29 pm

I just wanted to mention, I had a "preferred" NS review my MRI's in the beginning who told me there was absolutely nothing wrong with me and to never pursue this anymore! Got to know how you feel also!
Pre OP:
SM 3mm C3-L1
Tonsillar Herniation 5mm due to TCS
TCS Surgery TCI 6-6-08
ICT 6-7-08

Post OP: 2011-MRI
CM 8mm
SM C2-C6 9mm

PFD done in May 2012
Arachnoiditis found
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Re: Borderline Chiari 1 Malformation?

Postby the 4ks » Fri Sep 09, 2011 12:36 am

toport20 wrote:I just wanted to mention, I had a "preferred" NS review my MRI's in the beginning who told me there was absolutely nothing wrong with me and to never pursue this anymore! Got to know how you feel also!


Alot of us are told that. My hubby is the one with CM/SM. At first he was diagnosed with an idiopathic syrinx. The Drs. (that weren't specialists in this disease) drained his syrinx 3 times, they tried to put a shunt in and they couldn't get it in...3 times. We specifically asked him if he had CM, because we found ASAP and knew some questions to ask. He specifically told us NO CM!!! We took those same MRI"s to New York, and Dr. Bolognese took one look and said he had CM and SM. Some Drs. just don't get it.
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Re: Borderline Chiari 1 Malformation?

Postby youngwife » Tue Oct 11, 2011 4:03 pm

I agree, many doctors don't know what they are talking about. I'd bet a ton that you do have Chiari....Zero or whatever, it's STILL Chiari. Find a doc that knows what he is talking about, so you don't waste your time and money. :x

Funny thing, my daughter with CM and SM also has a "Tornwaldt cyst" thingy! Wonder if there is any connection?? :|
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: Borderline Chiari 1 Malformation?

Postby storto321 » Mon Oct 17, 2011 7:55 pm

sorry to hear you are having such trouble, i had a lot of the same symptoms,facial pain headaches,i thought it was sinus,it took them 2 years to diagnose me,i have chiari malformation type 1 with a herniation of 10mm i have had 5 brain surgeries, i have also developed hydrocephalus because of the chiari malformation, keep on top of your symptoms,keep your chin up, chiari can mimic the symptoms of sinus and ms. good luck keep us in formed
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Re: Borderline Chiari 1 Malformation?

Postby Beverley » Fri Oct 21, 2011 3:23 pm

The hard part about "Boarderline Chiari 1" is that the MRI pictures do not always show a true picture of the problem.

In my case. My MRI showed "Borderline Chiari 1" that was suspected to be 2-3mm... I had the decompression
surgery due to the formation of a syrinx and my many neurological symptoms... After my surgery my NS told me that my "Boarderline Chiari 1) was much worse. He never mentioned the actual length, but my brain was herniated all the
way down to C2 in my spine. He also mention that I have no curve at the top of my spine, it is straight whch
make the space between my spinal column and the brain much shorter than normal so there is less room.

So wheather it is the Reading of the MRI or the way your body changes from standing to sitting to laying down?
as all three are relevant. The pictures/interperations even by a NS are not always an accurate interperation of
what is actually going on inside.

Beverley
Decompression Surgery Feb 8, 2008 w/Duraplasty & Laminectomy C-1&2
Cervical Disc Fusion 11/08 C5&6/6&7- Mild Disc Bulge L2-Focal Hemangioma
L2-L5-Lipoma 3mm L4&L5-Disc Bulge T11&T12-DDD
Dopa-Responsive Dystonia (DRD)
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