Diagnosis

[nmk727]

I was diagnosed almost a year ago with Chiari 1 and a syrinx. Saw a neurosurgeon for the first time about two weeks ago. After looking at my MRIs he said I also have tethered cord. He wants me evaluated for hydrocephalus and to have a cine mri done for a flow study. I'm waiting to hear where/when I'll have those things done. My neuro exam showed hyperexcitability of the entire left side of my body. Kind of stressed right now. Doc mentioned surgery though he wants to wait til I get tested for csf flow and hydrocephalus. I am sort of overwhelmed with all these tests and diagnoses. How do you deal with all of this. I dread each test and doctor visit.

[selmaS]

  Hi....the list is in the Health pages...do u use a phone to access the site? if so locating all the features will be difficult.

The thread is on this first page in the forum as well....
but if u do not use a computer u may not see all of the threads......or locate the search this community feature which will bring up a page of threads on the topic u search for....so there r a few ways to locate threads and info.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562

http://www.medhelp.org/health_pages/list?cid=186

[nmk727]

Ok that explains the difference. I live in Ohio so I'm hoping I can get it done with the Cleveland Clinic. I saw in one of your other posts, that you mentioned a thread with a list of some chiari specialists. Can you give me the link? I've looked around and can't find it. Also, what is this thing I've seen about dimples around the area where you have pain? Never realized it before, but I do have two dimples near one of my more painful areas.

[selmaS]

  I think we all do from time to time : )

Even tho u may not have the typical symptoms, do get tested for EDS as so many do not want to push for this as it is one more thing to contend with, BUT it is something that if u do not may make post op recovery more of an issue...so do have this ruled out by testing.,

Here is a link to another thread where I explained the difference of a reg MRI and a CINE...if u still do not understand let me know : )

http://www.medhelp.org/posts/Chiari-Malformation/can-Chiari-heal-itself/show/1916933#post_8944309

As for CINE's being available...no not always it depends on where u r, if it is  a smaller town it is possible there is no one that knows how to read them let alone have techs or the machine to do them.....so u may have to call around or travel to a larger city.

[nmk727]

Thanks for the response Selma. I really needed a reminder to breathe. My doc didn't seem too considered with Ehlers-Danlos since I don't have any major symptoms connected with it. I have seen people referring to cine mri. My doc wants me to get one and he said that as far me getting one, it's not really different from a regular mri. So, is there a difference between the process of getting a cine mri versus a regular mri? Are cine mris readily available?

[selmaS]

  Hi, I know it can be over whelming, but it is very important to know all these related conditions b4 u consider surgery.....u should also rule out Ehlers-Danlos...as all of these can affect how u feel and heal post op...since it can affect how u heal u do not mind the testing and DX's as u know it is going to help.

Take a deep breath and remember to exhale.