Chiari Malformation Community
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Avatar universal

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

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!

27 Responses
620923 tn?1452919248

  Hi...my NS said to suggest that to members that do not have ins that need to go to an ER to go to one that u know has a NS that does specialize in Chiari, they all have to work in the clinics and ER so u get the same care.......

4 hours is a bit much to travel....

  The bells palsey like symptoms r not uncommon with chiari...I had it while at my NS's office....they can last a few minutes to a few days....

  I know u r scared and the symptoms r increasing, but the stress u r ubder r adding to all of it...please try to relax.

Since the Drs said u were ok, then all u need to is rest...calm down....

   I would not suggest driving 4 hrs to go to an ER, as the drive itself can make u worse.Who would drive?
Avatar universal
I'd b driving, I'd stop & rest & I have friends in the area, so I wouldn't b alone. I'm just sick of being the teacher & I'm willing to drive that far in order to sit down & have someone explain some things  to me for a change. I need answers in order to cope with this. even if it's  not the answers I want, at least it b would b from someone who knows about it.  
Avatar universal
And vandy is the closest ER with the knowledge I need, so I guess it's road trip time for me :-)  I'm not going to let  my persistence  be hindered by a couple hundred miles lol.... I'll PM u my cell #, u can txt me if u want....

Thanks for listening.....
Avatar universal
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.....
620923 tn?1452919248

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

Can u get someone to go along?
Avatar universal
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
1755089 tn?1376057155
LORD! I'll pray for your safety!!!
1968463 tn?1374761413
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~
Avatar universal
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!

Avatar universal
I made the trip with no problems , thanks for the concern, I'll keep u updated.....
620923 tn?1452919248

Ur there already?...u made stops?....
Avatar universal
Please do. I didn't post cause I didn't know what to suggest, but I been following. So please keep us updated about what happens. I'm worried about you getting home too. You better tell the doctors that you drove.
Avatar universal
Yes I made it, my arm/shoulder is all that kinda bothered me, I kept my arm propped up, but I think knowing that I was getting to see my really good friend helped me not focus on any other malfunctionations that usually bother me.  It really wasn't that bad of a drive, plus knowing I was(hopefully) within a day of being able to sit down & talk with someone who actually knows just as much if not more than I do about all of this made me not think about my normal aches....

Well, time to relax & enjoy my night...

I'll update you guys tomorrow....thanks for the concern....all of you
Avatar universal

being concerned mean so much....

Toodles :-)
700067 tn?1332992883
I don't blame you for going. I'm in the same boat. I've been waiting for weeks to even HEAR about my referral. At the soonest, it looks like my appt will be sometime in May. I have also considered going to the ER.I hate the ER, though. Never had a good experience there. The last time I went was with a gallbladder attack. They did an ultrasound and told me I didn't have one, that it had been removed. News to me! A scan the following week showed it and showed that it wall full of stones. I did have it removed then. Not so trustful of ERs anymore. :-)
1903798 tn?1333908888
Oh my goodness...praying for you.  It is sad that we are all so desperate for treatment that we have to be "creative". I hope you get what your looking for today.  Post when you can.
Avatar universal
Well I just called the ER & was told they'd gladly see me after I briefly explained my symptoms were getting worse & I was really scared.  I told them I had my MRIs & reports & asked if there was any chance of a neurologist checking things out, hopefully I won't be disappointed once I get there....

Thanks for the prayers...

I'll update as soon as I can....
620923 tn?1452919248

  Good luck
1903798 tn?1333908888
Has anyone heard any news?
Avatar universal
Good luck. I hope they figure out how to treat you.
620923 tn?1452919248

  Nothing so far.....just that she is there....
Avatar universal
Oh dear! I'm glad you made it there safely and can get the answers and treatment you need and deserve! Please let us know what happens and how you're doing. I wish I could be there with you! I'm with you in spirit though :)

Your friend,

Ps I will PM u my cell so you can txt me if you need
1755089 tn?1376057155
News please. How are you doing?
1306714 tn?1327260680
Reading these post I was so concerned of your driving, but so thankful to read you have made it.  Remember you have a lot of Chairian friend's out here praying for answer's for you.  Good luck.
Linda :)
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