Recent diagnosis

[mab1511]

Hi everyone.
I was recently diagnosed chiari type 1 with 8 mm.  I have many symptoms including constant headache, dizziness, extreme vertigo when lying down, bilateral arm weakness, hand tremors, blurred vision, feeling of fullness in my head, fatigue, photophobia, sensitivity to loud noises, increased sensitivity to touch, neck pain and spasms, ringing in the ears and urinary frequency.  I've had migraines for years and a few of the other symptoms as well and they have just become so acute and that is why I sought out seeing a neurologist. I was started on topamax and while that has helped with the occasional blurred vision and fullness in my head I still continue to have the other symptoms. My neuro just increased my topamax and I was just wondering what course of action others took on here?  Did you all start with meds such as this?  I thought I should have a cine MRI done but my neuro didn't think so.  I just received a script for MRI for thoracic and lumbar spine bc of urinary frequency and I have had one occasion of incontinence.  I am 28 years old, and I would really just like to know about others experiences.  Thank you so much.

[selmaS]

  Hi...I am glad u found a place to go ...and it just happens to be where I had my surgery....

  Good luck and do keep us posted

     "selma"

[bookworm79]

I finally got someone to listen to me and he said that he wanted all my MRI images, so I sent them and he said he may need to order a flow study and a cervical spine as well.  Sounds to me like most of them want more than just the traditional MRI.

[mab1511]

Thank you for the advice. I have called and requested copies of the MRI and will ask for CDs of the thoracic and lumbar after I get it today. I'm trying to get an appointment at the chiari institute in ny since I am from nj. My neurologist told me they are very aggressive over there in pushing surgery but I feel like they run a very comprehensive set of tests and that is really what I am looking for. Thanks again.  

[selmaS]

  Hi and welcome to the Chiari forum.

Jen is right in that the use of the CINE MRI is up for grabs with many NS's including some that fall under chiari specialist....that said, some r able to tell u have a CSF obstruction via the other MRI's done or bcuz u have a syrinx.

The thoracic and lumbar MRI's should help not only rule out syringomyelia, but tethered cord which could explain ur incontinence.

Do u know, with ur cervical MRI did they say ur brain stem was elongated?

And most NL's and NS's r under the assumption that chiari is not responsible for symptoms....and do not consider it a source.....which this makes it all so frustrating for us to get the proper dx and treatment.

What I would suggest for now, is get copies of all MRI's...so request copies of those already done along with the reports, and when u go in for the next 2 MRI's when u sign in ask for copies right away, u will have the CD b4 u leave and the report is sent approx a week or 2 later.

Ask ur Dr about related conditions like RA, sleep apnea, ehlers-danlos, hashimoto's thyroiditis....in doing so u may find out more about ur disk issues....

.... and do start to research chiari specialists. We do have a list here that u can use to help get started. the list is not meant as a referral. It was compiled by the names of the members drs...but u still need to research them to find 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"

[mab1511]

Thanks for responding, I did have a cervical MRI on a recent ER trip where the pressure in my neck and head were so bad I felt as if it really might explode, they found 4 bulging discs but my neuro said she didn't really think that was related.   I am slightly weary of my dr although she accepts my diagnosis I don't feel as though she quite "gets it". I am seeking a second opinion, I definitely want all the answers and want to be fully informed.

[jenshead]

In my experience, doctors have drastically differing opinions of CINE MRIs...even drs who specialize in Chiari.  If your dr is accepting a diagnosis of Chiari, that alone is progress.  Most dismiss it entirely.

Given your symptoms you should definitely be having a full spine MRI to rule out related conditions.  It sounds like you're having one of the three - there's c-spine, lumbar, and thoracic.

Topamax is used for migraines and can be helpful for Chiari.  It didn't help me.  Diamox helps my symptoms a lot, but it does not work for everyone.  Both of these medications have similar side effects - make sure to stay very hydrated and eat bananas regularly.  Drink your 64oz of water a day or risk kidney stones!

Hope that helps a little