Papilledema and intracranial pressure treatment

[MeganY24]

On Wednesday I was feeling great, which is rare these days since my rheumy wants to try out new prescriptions every time I see him and each one makes me feel worse than the last.... I had my regular annual eye exam and I figured out about halfway through that something MIGHT be wrong because the dr made me re-do every scan and test that the nurse had already ran. He asked about my vision and I told him that I see static and dark spots some times but I thought that was a normal symptom of POTS. Then the nurse walked into the room to tell him he had a phone call and snapped "tell him I'll call him back. I'm dealing with something important right now!" And then he put a blood pressure cuff on me *RED FLAG*

He finally told me that I had what was called papilledema and hemorrhaging in my eyes, which is usually caused by intracranial pressure. Now I just got out of the hospital for a kidney surgery a week before all this, so he could tell I was reluctant to let him call my neurosurgeon (not to mention I declined the decompression surgery because NS didn't know anything about EDS) so he said if I didn't treat this like an emergency situation then he would just call EMS to take me to the hospital.

I decided I didn't want to go blind so I did call NS's office which directed me to the university hospital. The office I had always been to was a private baptist hospital but they don't have an ER. I was admitted on Wednesday and just got discharged yesterday. I'm not sure how many residents and med students examined me but I'm sure it was more than 20, but yes, I am aware that I'm one of very few people with Chiari/EDS that the students get to learn about, so I'm not mad about it. What I am mad about is that I NEVER saw my neurosurgeon, in fact I only saw the on call NS for maybe 5 minutes while I was still in the ER triage Tuesday night.

I'm not saying I didn't like the neurologist that took my case, but she sent me for a spinal tap just to check the pressure (which was 40) and redid my CINE MRI which still shows decreased CSF flow where the Chiari blocks it, but she told me that my Chiari didn't cause the papilledema and that my recent weight gain did. I have gained 20 pounds over the last year but I started off under weight from being so sick last year. I think it's far fetched to tell someone with a CSF blockage that they just need to lose weight?!?! I'm 5'10 and 150 pounds. I look healthy again for the first time since all of this started 3 years ago.

But that's it. She prescribed a diuretic and gave me paperwork on how to lose weight :-/


I'm sorry for the novel but I just can't wrap my mind around all the severe consequences to untreated papilledema and intracranial hypertension, and lack of actual medical intervention. Does this sound right to anyone???

[selmaS]

  Hi...so sorry you are dealing with all of this....first...having both Chiari and EDS is not rare in fact more of us have both and a few other conditions...it is just that they do not look for it or understand the relationship btwn the 2....

And with PTC or IIH it was thought weight gain is to blame when in fact there are many very thin people with it and in recent yrs Dr have said weight is not a factor in this condition as was first thought.....

Since IIH and PTC can be related to Chiari so your conditions may be related as well....directly or indirectly...

When was your  most recent MRI and CINE MRI?....if more then 6 months I would have them redone and reviewed to look for any possible changes....

While a diuretic may help with some excess CSF that is building up it may not help with all the symptoms you are experiencing.

Deff try to locate a true Chiari specialist to help you...if you can not get to one see if you can have one consult with your Drs as to what is going on and the best course of action.

[Ball123]

Papilledema is an indicator of too high intracranial pressure. Too high pressure, or intracranial hypertension, can be caused by many things: chiari, brain tumor, subdural bleedings, dural sinus thrombosis etc. There is also an idiopathic version, meaning without known cause. This used to be called pseudo tumor cerebra in the old days. It has a tendency to more often happen to overweight young women.

Your case is more tricky. You have your chiari as a possible cause. I can not say if you would benefit from weight loss but if you feel that you want to give it a try then I can not imagine it would be harmful, unless you lose weight too fast or too extreme. 150 pounds doesn't sound overweight to me but maybe if you have gained it too fast or something.

You definitely need to take a diuretic, like diamox, to lower the pressure in your skull. Otherwise you might go blind.

You need to contemplate the option of surgery for your chiari in the future but obviously that is something that you need to think about and also maybe get the advice by one or two chiari specialists..

Best of luck! Hope you will be fine!