Need a little help

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Need a little help

Postby Renee07 » Mon Jul 02, 2007 5:52 pm

Hi, my name is Renee. I have so many questions and have no clue where to start.

For several months now, I have had some interesting symptoms which led me to go see my doctor last Monday. Some of those symptoms were extreme tiredness, slurred speech, weakness, headaches, facial weakness and muscle spasms on the left side of my face where 10 years ago I had a bout of Bells Palsy etc.

He ordered an MRI/MRA and blood work. I went this past Thursday afternoon for those tests. Doctor called me on Friday at work and asked that I come in as soon as possible which for me is tomorrow (my birthday). I asked why and he stated that my MRI came back with results that would require an appointment with a neurologist. I pushed the issue on the phone with him as to why and he stated that on the MRI, I had ventricular enlargement which is causing ischemic changes and also that I had displacement of the cerebellar tonsils which is called Chiari Malformation I. I have been reading many different sites and stumbled across this one.

When I go to the doctor tomorrow, he has been my family physician for years, what do I do? What questions do I ask.

Also, noone could tell me 10 years ago how I had gotten the Bells Palsy. It was two days after the birth of my twins. I had gotten an epidural and they had placed it way too high the first time. Does anyone think that there could be a direct correlation between the epidural and the Chiari?? I am of the 1% of the population that has never fully recovered from Bells Palsy. Still have weakness and loss of taste on the left side.

This seems like a great group of people and I would appreciate any advice you can give me. I thank you for listening.
Renee07
 

site

Postby razzle51 » Tue Jul 03, 2007 2:58 am

Did you go to the ASAP main page . www.asap.org alot of folks dont realize this is a website not just a message board . Th e real key is to find a dr. that knows about this and believe you me not all Neurosurgeon or Neurologist know about it. Let us know where you live so we may lead you in the right direction.
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby LouiseB » Tue Jul 03, 2007 9:22 am

I too suffered from Bells Palsy a year ago and remain about 10 % paralized. I don´t believe the rest will ever recover fully. But, I don´t have Chiari but I do have syringomelia C4-T11. Doctors have also said these two things are not connected. The Bells is when the Herpes virus attacks the 7th or 9th I forget which, cranial nerve. And has nothing to do with tne contral nervous system, tey told me it was stress. It is actually very common to be afflicted for a few weeks or months.

Not sure sure if this helps, just my experience.

Lu
SM C4-T10, TSC - Release Sept 2007 as per Dr Bolognese advice. Syrinx shrunk. Symptoms the same.
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Postby Renee07 » Tue Jul 03, 2007 4:19 pm

Just got back from the doctors.

I know no more today than I did yesterday. My doctor was very honest in saying that he has very limited knowledge regarding the results of my MRI.

He referred me to both a neurologist and a neurosurgeon. I have the written results of my MRI. The two areas of the report that make me worry are where it says - "Ventricular enlargement and periventricular hyperintensity". My doc said that could mean there is pockets of fluid around my brain but again he wasn't sure.

Then the second part states - "There is displacement of the cerebellar tonsils into the foramen magnum consistent with Chiari Malformation"

He had no knowledge of what that meant. So I guess my journey shall begin as most of yours already.

BTW, I live in Philadelphia.
Renee07
 

dr

Postby razzle51 » Tue Jul 03, 2007 4:49 pm

you might want to set up an appt with this DR. I know WEE LASSIE sees him and a few others and says he is great and really knows his stuff.

* Dr Ghassan K Bejjani
Greater Pittsburgh Neurosurgical Associates-UPMC
Aiken Professional building, Suite 311
532 South Aiken Avenue
Pittsburgh PA, 15232
Phone: 412-623-6910
Fax: 412-623-6911
http://www.neurosurgery-web.com/
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby dizzy2 » Tue Jul 03, 2007 7:02 pm

Hi Renee, I have the same chiari diagnosis. I was diagnosed about March of this year. I have 7 mm herniation. That is the part that is sticking out into the cervical spine. (from what I understand.) I started with symptoms a few months ago and did not know what it was. I went to the ENT because I had fullness in my ears with sensitivity to sound and ringing and wooshing in my ears. I had an MRi to make sure there were no growths and that's where it was found. I had muscle weakness back then to. Now I don't have much of the other symptoms except for breathing deep breaths. I am still waiting to see the right Neurosurgeon. You should ask to have a scan to check the spinal fluid flow to check for any decompression. I'm sure if you go to Dr. Bejjani he should know what should be done since Wee Lassie has been there and she seems to think he is great. Good luck with this and let us know your progress on this journey.

Blessings to you.
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