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Apr 12, 2017 · Empty Sella Syndrome in Brain & Nervous System

Thanks @kariulrich! My feelings are a little on the fence at the moment. One the one hand, I’m elated to finally be getting some answers as to what’s causing quite a few of my most concerning symptoms. On the other hand, I’m quite concerned that the medical approach up to this point has failed. At this point, we’re grasping at straws. If it doesn’t start working quickly, the only other option is to go along with the shunt placement. Invasive brain surgery is not my idea of a good time. 🙁 How are you fairing with your headaches? Other than oxygen, have you found anything that lends relief?

Apr 11, 2017 · Empty Sella Syndrome in Brain & Nervous System

So the results are in, and not quite what anyone was expecting. The MRA was “normal”, which means blood flow is getting to my brain okay. However, the MRV indicated “The nondominant
left transverse and sigmoid sinus demonstrate multifocal stenosis of
the sigmoid sinus laterally.” Which means blood/CSF flow away from the brain are obstructed. And “There is a partially empty sella.” Neuro indicated IH could cause the stenosis, or stenosis could cause the IH. Or any number of other things. Either way, a therapeutic lumbar puncture has been ordered to determine whether or not a shunt will be effective. She also added another 20mg lasix and ordered Botox injections. Follow up in 3 weeks. Hard to say what’s next.

Apr 11, 2017 · Empty Sella Syndrome in Brain & Nervous System

@kariulrich, Interesting. I wasn’t aware of the correlation. I will definitely take a look! Thanks for the puzzle piece!

Apr 7, 2017 · Empty Sella Syndrome in Brain & Nervous System

Hi @kariulrich, yikes and yikes. Neither of those sound the least bit fun. I get high pressure headaches from the intracranial hypertension and migraines. The combination are excruciating. I can’t even begin to fathom worse. I do recall seeing a show where a guy that gets cluster headaches treats them with psilocybin mushrooms. He takes them once a month and hasn’t had one in years. Please don’t read that as as a suggestion or even approval. It’s just information I happened to recall. I haven’t been tested for ED… may I ask what started you on that thought?

Apr 7, 2017 · Empty Sella Syndrome in Brain & Nervous System

Thanks @colleenyoung 🙂 The Intractable Headache is caused by Intracranial Hypertension (IH). They suspect the cause of the Intracramial Hypertension MAY be due to a clot (MTHFR) or due to a DAVF. Otherwise, it could just be idiopathic. The MRA/MRV went well today. I also got an emergency appointment with the opthamologist due to a sudden & severe decline in vision. Unfortunately, there’s nothing more that can be done right now, aside from the follow up with the neurologist first thing Monday morning. Have a wonderful weekend!

Apr 7, 2017 · Empty Sella Syndrome in Brain & Nervous System

I received the empty sella dx while getting a workup for intractable headache. After several years and a multitude of tests and doctors visits, etc, I have finally started getting some answers. I was finally dx with Intracranial Hypertension, which they say has caused the empty sella in my case. Later today, I will have an MRV/MRA to see if the can find a cause for the IH. (Clot, DAVF, etc.) if no cause is found, they will be installing a shunt. The best recommendation I can give anyone who is experiencing severe headaches and blurry/double/loss of vision is to go see an Opthamologist, and ask them to check your optic nerves for swelling. After many many years, that is what finally made them start taking me seriously. Best of luck to each of you in your search for answers!

P.S., I have also been diagnosed with MTHFR, along with a host of other related issues. Interesting coincidence, or clue? Things that make ya go hmmmm.