Borderline Chiari 1 Malformation????

[luvmy2grls]

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..  

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..

any help is appreciated!  

thank you!

[selmaS]

  Really?...wow, I made my own appointments...except the the ones that gave the the run around they were referrals...I got fed up with them and went out on my own...it was costing too much time and money .

Well, I know the symptoms I still have r bcuz of other issues I still have that were not yet treated....I will get there, but my surgery did take care of the major issues I was having.

  "selma"

[luvmy2grls]

I'm sorry that u still have symptoms.  I hope that the majority have been relieved with surgery..  I've called a couple of these docs/places close to me and they say they need the doc to refer me and send my records to them..  So I have only 2 places that will talk to me right now...  

We will see!

[selmaS]

  No need to apologize...I just want to make sure I understand what u r asking...but the drs all have a diff way to measure what chiari is...there is not real standard right now when U look on line...it is crazy...

Again...what does borderline mean...that ur chiari is 5mm's?...could be...or it could mean they do not feel it is symptomatic....that is the problem with the verbiage...

Unfortunately no...I still have symptoms, but I do have 2 other related conditions that may be playing a part as well as a bulging disk.....

  Most of the surgeries will not lead to a symptom free person....that is not really realistic...but to lessen them which I have is great...to slow progression is even better and to restore CSF wonderful : )

  U have to look at how ur chiari is affecting ur health b4 I feel u can say it is borderline or mild...I really resent Drs or radiologists using those terms, plus it is confusing as well.

  "selma"

[luvmy2grls]

Thank you again for your help!  

I don't know much about chiari's and the report said "borderline" so I appoligize.  I did think that when they did my c-spine MRI that's what they would have found but they didnt.  And now fir them to note a "borderline" chiari on the brain MRI,  I just want to know who's (which radiologists) opinion is wrong.

I'm sorry that u had to go undiagnosed for so long and like u said it was kind of like a blessing in disguise.!.!.  So are u symptom free now?

[selmaS]

  Here is the link to our lists that were compiled by the members here...u still have to research all the Drs...but this may make it a little easier-http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

  I am not sure what u mean by borderline as there r many diff ways to determine chiari and many r old school...if u r looking at the size of the herniation, that should not be a factor....I personally  do not understand how u can have borderline chiari either u have it or u do not...u can have symptomatic chiari or asymptomatic chiari ....and some symptoms r more severe than others.....I was unfortunate to have drop attacks, one left me with injuries from the fall that required surgery...2 in fact b4 I ever got my chiari dx, but that last fall led to my dx so a blessing in disguise.Drop attacks r due in part to an obstruction of CSF.....

Chiari can increase in size, obstruction..etc.....and symptoms or remain the same for yrs....u  never know, but the right testing may help u figure out what is going on and how ur chiari is affecting ur overall health.

    "selma"

[luvmy2grls]

Thank u!!

Where can I find a NS who is willing to look at my case?  I just have a clue on where to start..  I'm having a horrible time getting my meds and free t's figured out with the hash's.  I I had some prettynwicked lads when the doctor had to believe me ( TSH 144.40(0.4/5.5) free t4 0.03(0.8-1.8)

So as far as chiari's, do they/ can they get bigger?  I just don't want to have to wait years and years before it gets "bad enough" for treatment...  I did however learn my lesson with my thyroid, if i would have kept persisting I probably wouldn't be left with with a non workring organ.  Any help where to start would be greatly appreciated!!   And thank you again Selma!!

Ps did/do u have a borderline chiari or was/is yours definate?

[selmaS]

No worries- vent away, that is y this forum is here.
  Most times that is an out of pocket expense, but it my be $40.00  and some do it free...it all depends on the NS and how he runs his office.

I also have Hashimoto's...and my symptoms have subsided post op..which I am sooooo happy about : )

    "selma"

[luvmy2grls]

Selma

Thank you so much for your quick reply!  I am getting you to this doctor "crap"  LOL  I live in Nebraska and I'm not sure we staff any good physicians or specialists here. hahahah  (sorry I am a little bitter today)  I am just sick of being dismissed when clearly there is a PROBLEM..  

ugh glad I got that off my chest.  

Okay so YES I do!  I have my MRI's on disc, a copy of the reports, and a copy of every lab that has been done on me!  lol  I don't trust that the docs will tell me the truth so I like to get copies!  and I also have hashimoto's / hypothyroidism..

So do insurances normally cover things like this?  or to have a specialist to review the case? Just wondering?

[selmaS]

  Hi..well u hit the nail on the head when u said opinion...and u have to remember that is all it is ...and who knows what training the radiologist had....so, it is the opinion of the trained NS that matters...and the good ones do not read the reports as they want to make up their own opinion of what they see or do not see on the  films.

...one radiologist may be from the old school that the herniation must be 5mm or larger to be considered chiari, while the other sees that there is some overcrowding and may see  it as an issue regardless of the size.


The other issue could be the slice and magnification in which the MRI's were done with.....

  Did u get copies of the MRI's and the reports?...I would assume so since u r quoting it....but I don't like to assume nething.

  If so....send them off to a few NS's u know r chiari specialists...some will review them for a nominal fee, while others do it for free in hopes u will bcome a patient.

    "selma"