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6804704 tn?1385251096

FOUND OUT I HAVE A CHIARI 1 MALFORMATION

i just found out I have chiari 1 yesterday on my own, by going through old ssdi papers and came across a visit note from the neuro I saw back in 01, where he stated that according to the brain mri I had it fits the criteria for a chiari 1 malformation, but he never said anything to me nor was there any follow-up with it.  How I found it was because I have been fighting my ssdi on and off since 97. And I recall having migraines in the 90's, tingleing on rt side of face, and hands preasure sensation on rt side of head, sensitve to light, noise, and temps, gets pain on back of head, whole head tingles, constant tone in ears, etc.  I have had low back pain since 90, my TSH is high, progressive muscle weakness since 08, tired out easily since 90's, chronic fatigue since 90's no matter how much sleep I still feel tired, poor dexterity in hands etc.  Since 08 we have been trying to figure out a reason for the muscle wekness with no luck, but now with finding this note, hopefully they will presue it.   Thanks
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum,

It is so sad, but so many of us find out about our condition this way....Drs feel it an insignificant finding at best....so why tell the patient, they feel it does not cause ne symptoms or issues....ugh....sigh.....

Many of ur symptoms do match up with what the majority of us deal with.

U will want to get a new MRI, and more testing to see what all is going on....as each of us will be affected differently by this condition.

U will want a MRI of the brain w/wo contrast, a cervical spine, thoracic and lumbar spine MRI, a CINE MRI, testing to rule out lymes,. lupus, MS, and sleep apnea, tethered cord, ICP, POTS, syringomyelia,disk issues, ehlers-danlos, and over crowding, and obstructed CSF flow.

Research the Drs on our Drs list and find one that is a true Chiari specialist.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  OOPs...I forgot to add Hashimoto's should also be ruled out since it appears u already have some sort of thyroid issue going on, those with Chiari are prone to auto immune thyroid issues and Hashimoto's is one many of us do have.

Helpful - 0
6804704 tn?1385251096
Thanks, I was tested for lyme, hiv, had mris for cervical, thoradic, and lumbar.  I have a disk prutruision at L5S1 and up in the cervic, but they say that they are not pushing on the nerves, also on the thordaic, I have a couple samll noulds, and mild to moderate disk degeneration, but they say that, that is not causing my problems.  Also, I had 3 EMGs done while on gabaphentin and they came back normal.  

I am giving the brain mri report from 01 to the neuro next month so hopefully he will do a new mri.

The neck and shoulder pain gets bad at atimes as well as my hands aching.

I need to use a rolling walker to go over 50 feet, use a cane in the house and to get up stairs

I had mild sleep apnea in the 90's  but could not tolerate the cpap..
Thanks again, will keep you posted.
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620923 tn?1452915648
COMMUNITY LEADER

  Good luck and know u r not alone.
Helpful - 0
6804704 tn?1385251096
Just got the OLD mri report from 01 in the mail states that the herneation is at 7mm compared to previous report done in 98 where it was measured at 4mm.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Do not read into this report....as many times one MRI to the next things can be set up differently from one MRI to the next......

This is the best way I can explain the appearance of tonsils growing or shrinking....

Imagine ur brain as an upside down pear....the lower part ur cerebellum....

Now imagine it is cut into 3rds equally....

If a MRI looks at the slices on the far left and right  they will be close in size....but if the next time they look at the center slice, it can appear that it has grown...when in fact it is the same as b4....

B4 u get concerned be sure the MRI was done the same and they are viewing the same slices....

That said, they can grow,,,,,but b4 u think there was a major change, make sure  things were done the same and it is being viewed the same.....

'01 was some time ago, what does a more recent one report?
Helpful - 0
6804704 tn?1385251096
I sent an emessage to the neuro I am going to see next month asking if he can order a new brain mri and mri cine. I have a feeling it did drop more because I get quizzy more and get buggy eyed when something comes close. Also I have alto of neck and shoulder pain along with very weak muscles in my legs and arms, I can not do steps unless I have both hands on the cane and lean it forward to step up, also takes 2 hands to put a gallon of water on the counter, and need the walker for over 50ft.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Regardless of what the MRI shows ur symptoms are showing much more needs to be addressed at this time, as I said it is not the length but if there is an obstruction and how it affects ur overall health....

It is more then apparent that u do have something that need to be addressed and now.

I also had issues with a gallon cont...and would advise not getting those , try to get with half gallon or quarts as lifting with 2 hands will also cause strain....

I pray u get the testing u requested and do talk to ur Dr about syringomyelia which will require a MRI of the cervical, thoracic and lumbar spine, and rule out ALL related conditions....ICP, POTS< sleep apnea, tethered cord, ehlers-danlos......
Helpful - 0
6804704 tn?1385251096
I did have sleep apena in the 90's which the dr said improved when I lost weight. I know that my tsh is high and the anion gap is low. I think over the years I went from hyperthyroid to hypo and back and forth.

But as far as the muscle weakness been having different tests done sine 09 everything comes back normal. ruled out fshd, md , had a muscle biopsy done which showed just minimal unspecfied changes, was a small rare muscle fiber with some nucler and atrophy, but drs said that is not causing the weakness, that is why when I found the note it wa like a light came on which could answer the problems.

Will keep you posted.
Helpful - 0
Avatar universal
Any chance when you say neuro you mean a neurosurgeon? Or are you talking about a neurologist? I was told to skip the neurologist because they won't see it the same way as an NS. I totally agree that this needs addressed ASAP!!!!! I would also be very upset that no one told you this til now, as these things go on a long time you can have permanent damage! GOOD LUCK!!!! I am so happy you found that and are pursuing it! A csf flow (sorta the same as a cine I think) will be what is the most definitive test for sure at this point. CSF flow blockage is what causes most of the problems chiarians have from everything I have read and seen.
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6804704 tn?1385251096
It will be a neurologist appt, normally here they do not send you to an ns unless you need surgry.  I have been trying to get answers for years, so lets hope this will be the answer. I know in the 90s my arms would tire after a short time, and I was tired most of the time besides other symptoms that the drs either ingored or related to something else like depression . Thanks will keep you posted
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  I can not stress enuff to get tested for related conditions like ehlers-danlos as it can be a reason for the muscle fatigue.....and can also cause many of the same symptoms of Chiari.....


Depression when u have chronic pain is something to be expected, but Drs tend to stop there and not look further, I pray u find a Dr that will.
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6804704 tn?1385251096
Thanks SelmaS.
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