cerebellar tonsil extension

[strridge]

I just received my Myelogram report from 12/28/2011.  It states I have low lying slightly pointed cerebellar tonsils.  The right cerebellar tonsil extends 1.2cm below the level of the foramen magnum.  

Is this bad?

I don't want surgery but cannot keep increasing meds and cannot handle the burning and pain.

[strridge]

Who is your Chiari Specialist?  I have neck and back problems along with what appears to be Chiari symptoms, but haven't heard back from my neurosurgeon regarding my latest test results (Brain MRI).

[strridge]

I learned today that Dr. Mufti in Madisonville, KY is a great neurologist.

[selmaS]

  That is the same Merry-go-Round we r all on...and ne way we can help u by sharing our experiences let us know.



  

[Jamie_667]

Thank you. I have 4 bulging disks as well as Chiari so I guess that was where the confusion in my DX came in. My neurologist doesn't believe Chiari can cause symptoms either, but that was when I found a true Chiari specialist. We still don't know what symptoms are caused by what problem but the more I understand everything myself the easier it will be to work with my doctors to get myself the best quality of life I can.

[selmaS]

  Hi and welcome to the Chiari forum.

The EMG testing is done to lok for pinched nerves to explain the many numb fingers, hands and facial issues many with chiari deal with....if, it is not a pinched nerve as suspected, it would be the chiari as the obstruction of CSF does not allow the signals to move down the spine to where they need to be, so they r impeded but it is not a pinch to the nerve, but a disruption to the CSF flow.

[Jamie_667]

How does an EMG indicate Chiari? When I had mine done my doctor said it only indicated nerve irritation but couldn't determine the cause of the irritation by that test alone.

[strridge]

Thank you!

[selmaS]

  It would seem the next step would be a LP (lumbar puncture) to rule out the MS as that is the other possibility for the lesions and since u have quite a few of them....but it does not conclude one way or the other...so u will have more testing.

Sorry I can not offer much more then that.

      "selma"

[strridge]

Yes there is more.  I am home with my computer vs using my phone now.  There are 6 - 10 lesions but no associated mass effect with the lesions.  One of the largest of these lesions measured approximately 5 mm in size periventricular/subcortical white matter in the right parietal region.  Possible etiologies including that of sequela from vasculitis or migraines, a demyelinating process such as MS or less likely chronic microvascular ischemic change in a patient of this age (I'm a 42 year old female).

The neurologist didn't / wouldn't take the time to read my report while I was there today.  He said I had to come back next week.  So, I went to the hospital and got my own report.  I'm so frustrated.

[selmaS]

  The EMG report confirms the issue is chiari related....

What else does ur MRI say?...it is best to repeat all of it, including the impressions....as I can not tell from this.

I am not sure if they r trying to indicate lesions, which can be the result of severe HA's....not being a medical professional I really can not say...sorry....but this is incomplete info....I am sure there is more then this.

   "selma"

[strridge]

My EMG's on both arms did not show any pinched nerves.

[strridge]

I have my MRI report of my head.

It says I have several nonspecific foci of signal hyperintensity in the periventricular and subcortical white matter and right side of the pons on the T2 FLAIR images.

[strridge]

The neurosurgeon which told me about the Chiari Malformation did not act like it was the cause for my problems; however, doesn't understand my symptoms in regard to the MRI or myelogram images of my neck.  

He suggests epidural injections into my neck and if they don't help then investigate the Chiari Malformation more.

I'm not sure I'm willing to have these injections in my neck.

[strridge]

Thank you!

[strridge]

Yes I was very bothered when I received a copy of my myelogram and saw that it was 1.2 cm or 12mm.  I was very concerned because I've had neck and back problems since I was in an automobile accident in April 2006 and have not known what to do.  I'm so tired of doing research, going to doctor visits, making phone calls and the medical bills keep increasing!  And I am very miserable!

I get my MRI results of my head tomorrow and have EMG's tomorrow on my arms.

Thank you!  Many Blessings to you as well!

[huskys2]

It sounds like you need a new Dr I had to go through a few before finding the right one and so glad I did he changed my life. I would never see a Dr that will not listen

[Rahe28]

Hi there ! Welcome, sorry that you had to find us though :( .  I just recently became a part of this forum, and I must tell you that it has been such a tremendous help...not only with info but with support as well. I like you, have a 1.2 cm herniation and pointed cerebellar tonsils, as well as kinking and notching and some other junk. (Still NOT sure what the kinking and notching means, nor the pointed thing). I have yet to  hear someone else with a herniation reffered to as a cm, so I must ask .... Did it really freak you out when you read it or were told, or is this your first experience?

When they first found the Chiari it was a 6mm extension...and then a year later I was taken to the er where they ran multiple tests, one being an mri of the brain.... and a few months down the road I realized they never told me the results of the Mri....so, I went down to the hospital and obtained a copy. When I opened that packet and read 1.2 cm ( having forgotten most of measurement conversions) I have to say ...I completely freaked !!!!! I still haven't gotten a NL to look at this MRI, and I am much calmer now that I realized that it = 12mm and that it is not the size of the herniation that matters most, but the symptoms and other conditions that go along with it. I hope that you find a Dr. that will truely help you! Many blessings for you and GL with your Chiari Journey.

[selmaS]

  Hi u r welcome....

Good luck with ur EMG....and just a note- not sure if u requested copies of ur MRI that u had today, but u can request them as well as the report...so, if not, call the facility to request copies...it is a good practice to get copies of all tests.

  "selma"

[strridge]

Thank you.

I had a MRI of my head today and will have EMG's Wednesday of this week.

Yes, the neurologist does not think it is Chiari related even though I have most of these symptoms.  

Thank you very much for your time and help.

I'll post back with more information as I get my results.

[strridge]

Thank you!

Do you mind to give me more details on your condition and what you have learned?

[jonifa]

I live in owensboro and have seen Dr Shah several times. I also was unimpressed with him...doesn't seem to have a clue how to help us. I do know he does not have a good reputation around here either. I saw Dr Tew in Cincinnati which is about 3 hours from here and well worth the drive!

[selmaS]

  All I can suggest is u look at the list of Drs, mayb u can get ur NL to consult with a chiari specialist....u can send ur MRI films to them and many will give u an opinion...some for a nominal fee while others will do it for free.

Many of us do need to travel to get to a specialist, and if there r none in ur state, u may want to appeal to ur insurance to cover u to go to one out of state.

  I had EMG's done on both legs, this shows it is chiari....that is what the Dr that did the test on me told me....

And there r many NS and NL that do not feel chiari can affect us like it does, that does not mean they r right.

Do make sure u rule out the related conditions as well as they also cause pain in addition to the  symptoms of chiari.

[strridge]

My neurologist (Satish Shah - Owensboro KY) doesn't think the Chiari I Malformation is causing my pain.  I saw him today, but he doesn't half listen to me.  This is only the 3rd time I've seen him but am not impressed.

He ordered a MRI of my brain and wants me to have EMG's done on both arms.

I need a specialist in KY per my insurance.

Thank you!

[selmaS]

  Hi and welcome to the Chiari forum.

B4 u start talking surgery u will need a few more tests....u need to know what other related conditions u may have, and if u have over crowding and a CSF obstruction...u want to know just how this is affecting ur overall health as well as the symptoms u r having.

Do u have a true chiari specialist?..we do have a list compiled by the members Drs, the list is not a referral, but a means to help u get started with ur research to locate the Dr that is right for u-

http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

   "selma"