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what questions do I ask NS when I have Chiari and CSF leak symptoms?

Hi,  I was in an car accident 1/2015.  I have had head, neck, shoulder, and back pain on and off since then.  I've had autonomic issues; can't tolerate heat-my blood pressure drops, and I become severely fatigued.   But My blood pressure will drop and heart race for no apparent reason as well followed by major fatigue.  I also get extreme hunger bouts that come on quick and I need protein ASAP or I then feel nauseated.  I can't tolerate certain noises like dishes clinking.  I've had ear infections and can't seem to get rid of sinus congestion.  I also get these open sores Inside my nose that only heal when I use a nasal antibiotic cream.

MRI's show Chiari, and 9 cysts up and down my spine as well as disc issues, and more arthritis than should be for my age.  
This fall I when I would walk 30 minutes  the balls of my feet would become numb, the toes on my right foot would feel asleep and feel like one toe was crossing over another.  Then I'd feel completely lethargic.  My blood pressure would be anywhere from 90/50-89/40.  I would have to lay down to rest.

The NS I had gave me 3 steroid shots in my cervical region in February 2016.  His thought was to do a systematic approach.  If the shots relieved the pain then the pain came from the spinal cord not the Chiari.  Unfortunately, my autonomic issues increased following the shots as well as headaches.  For close to 6 weeks I was unable to stay stand very long without having major head pressure followed by fatigue.  I spent most of my time in bed.

This Tuesday I'm going to see Drs. Luciano, director of the CSF department at JHU.  I'd love to get feedback from folks on what questions I should make sure to ask.  I have been diagnosed with EDS-3 and think I also have CCI.  

2 questions:

How often should someone with these issues get MRI's?

I've heard a CT mylogram is a non-invasive way to detect for a CSF leak, what other ways can a leak be noted?

I also have an appointment to see Drs grey at Duke in June.   She said if Drs Luciano can't help me she would do the ct myleogram followed by a fibrin glue patch if needed.  When I talked to her on the phone about the steroid shots she asked which way the shots were injected.   I don't remember the names of the different ways, but because my doctor is older and retired from JHU Years ago, she thinks he used an older way of doing things which could have caused a CSF leak.

Thank you--sorry message is so long!!
Jeanne



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620923 tn?1452915648
COMMUNITY LEADER

  Hi....MIR's are done every 6 months only if there are changes in symptoms.....and it will be up to the practicing Dr what he deems necessary.

Always report new symptoms as they occur, to help the Dr keep track and know the best course of treatment.

So do you feel the injections may have caused a CSF leak?....it could explain the increase in head pressure when upright. I am not sure a mylogram is the only method for detection of a leak....but as you stated it is non-invasive.....just be aware a more invasive LP might still be needed to determine if you have a leak....

May I ask why a fibrin glue patch ? Most times I have heard they used a blood patch....

Do have your Drs rule out POTS as well......to make sure it was not it causing your issues especially if a leak is ruled out.
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