Anyone had any luck going to ER of NS hospital for help?

[Shelltn]

I'm developing new symptoms & worsening ones which are literally scaring me more than usual & I'm considering driving 4 hrs to an ER close to where I'm trying to get a referral to. I went to ER local here & once again,i was the teacher, anyway,i thought I was having mini strokes, right eye & right side of mouth drooping,nonstop headache over right ear for over a, week, my BP(normally 80/50 ish) was 131/57 HR 95. CT Scan showed no signs of stroke thankfully, but dr said followup with pcp today, which I did,& he said he was used to having patients come in at Mayo (didn't even know he studied there lol) & they can't turn u away & u may not get the answers u want, but it's up to me while waiting on my referral. He's even tried calling the NS I'm waiting for referral on & he said they won't let him near him til the referral goes through. It could take a couple more weeks or longer for the ref & my symptoms are getting more frequent,more severe,& new ones starting & I'm scared this insane waiting game is gonna cost me more permanent nerve damage.....

I know it's a long drive, but I'm the only one who seems concerned enough to take,a, chance.....

Any, suggestions besides hurry up & wait or see what I can find out now... I know I won't be taken in for surg, I just need answers from someone  who knows wtc is going on that I don't have to, explain what ACM is!

[Jenn444]

Well, I jumped on the board tonight and saw your posts for the first time. I am with Selma-I'm concerned about you doing this drive by yourself especially with you having eye issues and a lot of head pain. However.....if you have already left and you get this before you get to Vandy, be prepared that you may get triaged in the ER and then seen by a neuro resident if the ER doc is willing to call one in. Remember that you are going to a teaching hospital ER so you will have residents on call there, not your NS most likely. However, if they admit you, you may get your neuro consult the next day but it will be whatever neuro  doc they chose unless you can somehow try to influence that choice. If your doc is not on rotation when you are there, you will get a different neurosurgeon.

My other concern is how your insurance will handle it. If you are not admitted, you may be referred by the hospital back to your regular doctors for follow up and not be able to see anyone in neuro while you are there. ER dollars are so tight now that the criteria is very tough to get anything beyond true emergency care.

I am wondering if, instead of leaning on the NS to see you sooner, since that is not working :(, if you could have your PCP talk to your insurance provider to see if they can fast track the referral. If you call your insurance provider and explain that you are truly miserable and frightened that more serious things are rapidly developing, they may speed things up, for liability reasons if for nothing else. (ask them to document your request to expedite things and get the name of whoever you speak with).

I was decompressed over a year ago and also have a large syrinx that collapsed after the surgery. Prior to surgery, my symptoms did start to rapidly get worse also so I know it is scary. However, all of the upset you are experiencing from very understandable fear, frustration, and lack of understanding from your family and docs can really magnify your symptoms and make you feel much worse. Whatever you can do to try and reduce your stress level would be good-I know it is really hard. But, being super anxious is only going to make you worse. If your doctor has ruled out heart issues that is good so you know you are not stroking out, even though it feels like it! As Selma said, you may have related or unrelated Bell's Palsy that is causing the eye issue. The is also a very common bacteria infection of the eye, that can be chronic, that causes drooping of the eyelid and sometimes a bit of swelling. My pointing that these symptoms may not even be related to your Chiari and possible syrinx.

I hope if you are on your way to Vandy that you get there safely and that you are able to get a neuro consult from at least a resident while you are there. Try to stay calm and pleasant, no matter how upset you feel, because they will be much more interested in helping you if you are not jumping down their throats. (not that you would :) )

For what it is worth, I think your idea is good to print out material for your siblings to bring them up to speed. A growing syrinx alone is pretty clear cut indication for surgery. And, your chances of dying from decompression surgery is far less than most other major surgeries, including heart surgery, so that should calm them all down.

Please be safe, and take care of yourself. Keep us posted!

Jenn

[Rahe28]

Nope...actually had a worse experience than going to a regular ER. THey didnt even let me see the NS, or NL. At least when I went to the other they did trhe proper scans and I actually got to talk to and consult with a NS team. Good Luck to you, and please make sure that if you start to feel bad at all, that you stop and pull over, and call for help. Best of luck to you~

[drewlevas]

LORD! I'll pray for your safety!!!

[Shelltn]

no hun, spur of the moment trip, I promise I'll stop if I need to,thanks for caring, I need all the friends & support I can get...chk ur msgs

[selmaS]

  Just be careful...if symptoms r increasing u should not be driving alone!

Can u get someone to go along?

[Shelltn]

Something else my dr said was  so what if u go allllll  that way & find out it's not chiari? I said then I can ask to be pointed in the direction I need to go so I can find out what it is......but I know in my heart that it's definitely chiari related....I'm tired of being doubted & I'm on my next step to finding answers.....