CSF Flow Study

[wina1969]

I went to Duke University on Friday and met with Dr. Sampson, a neurosurgoen.  He now wants me to have an MRI for CSF Flow study.  Is this a normal procedure?  I went to Baptist Hospital a few weeks ago and the ns told me to go home and try everything that I want to and then call him back to scedule the surgery.  What are your experiences?

[selmaS]

Hi...yeah it ia also called a CINE MRI....it is important to know if u have a CSF blockage.

Well make sure the dr/NS is a true chiari specialist....it can  and will make a big difference.U want to know how many of these surgeries he has done...but I felt better with a NS that chairi is his main focus.....plus related conditions.

If u did not have the flow study done, Y is he talking surgery b4 the results r in......

U have to be comfortable with the dr...if u r  and u r at the end of ur rope and can not cope with ur pain and symptoms then u have to decide which to do.

I do have pics from my surgery as well as a journal that u can read if u would like...just click on my name it will take u to my profile page.

I had my surgery in May and am still healing ...I also have EDS and heal slowly...

Were u checked for EDS...it is a related condition to chiari.

What r u current symptoms?

"selma"

[wina1969]

I wasn't certain about what the NS at Wake Forest Baptist Hospital said so I went for the 2nd opinion at Duke University.  He didn't want to talk about anything until I have this MRI.  I guess that is a good thing.  What is EDS?  My symptoms include but are not limited to the following:  headache (the worst ever), dizziness, blurred vision, snoring (so my husband says), tingling in my left arm and neck but not always, lack of focus, sometimes have a difficult time typing and using the calculator, etc, etc.
  

[selmaS]

EDS = Ehlers -Danlos Syndrome...it is important to know if u have this prior to surgery and it is possible to have it and not know...I am a prime example of that...lol....

U have some of the typical symptoms...does it affect the quality of ur life?

Make sure u have a true chiari specialist...I know I said it b4, but I can not say it enuff.......and make sure u r comfortable with the dr.

"selma"

[wina1969]

I wassreading your journal-it is very helpful to read what you went through.  My headaches are effecting me the most. I have trouble focusing at work but that gets worse the more severe the headache.  There are days that it takes everything I have to stay at work and do my job but once I leave I have to come home and go to bed.  That stinks when u have a family that needs you and you want to do things with them.

[wina1969]

what are the symptoms of EDS?

[selmaS]

I am glad it was of some help to u....I still have issues with focusing...but I was like that for soooooo long I am sure it will get better over time.I was the same way...drug myself to my car at the end of the day and barely was able to crawl out to get in the house....no real life outside work..and my days off I spent in bed to rest up for the next few I had to work.

U may understand the info on the Health Pages...there is one titles WHat is EDS and another one Symptoms of EDS.

There r several types of EDS I have the hypermobility type...where ur joints can pop in and out of their socket and it can hurt.....I bruise very easy...I can get a scar from a scratch the doesn't break the skin....I am slow to heal.....the skin tends to be very soft and flexible....I was surprised to see how far my joints bent in the wrong direction...I had no idea cuz I never tried it...lol...but do read the Health Pages more info that I can share properly.

The link to the HP is top right of this screen....and it is also in the welcome message at the top of the page as well.If u have navigation issues let me know : )

"selma"

[selmaS]

Correction there is only one HP on EDS and it is What is EDS.....all symptoms r already on this page.