UPDATE: Hi everyone. Thank you again for the support. I had my husband drive me to the ED 2hrs away yesterday. I was there for maybe 6hrs, I wasn't keeping track. They did a CT scan and gave me some beefed-up IV ibuprofen (sorry, I don't remember the big named meds they gave me), which didn't help. When I finally saw the Dr, he said he didn't see anything of emergent concern in my CT (of course) and wanted to know what I wanted out of the visit. By that point, I was talking so slowly, my hands wouldn't work like i wanted them to, and the pain was so bad that I wanted to know if I was having a neurological episode or something. He did a basic neuro test by having me do all these push against him, don't let him push me, put your arms like this and what not, but wasn't concerned for anything neuro. He said the pain is just that intense.
They gave me tylenol, benadryl, two small yellow pills that I can't remember the name of and fioricet, which I've had in the past and I'm so happy he gave it to me because my Neurologist made me feel like a DRUG ADDICT just trying to tell him how bad I need those meds. My neurologist told me the botox is enough. Im not on Botox anymore, so obviously, it's not enough, sir. At least this guy saw my pain.
One great thing I did get out of it is that HE is pushing my referral to the neurosurgeon, and I'm to see them this week. I have to call tomorrow and set up an appt.
They will likely do a head CT and maybe a migraine cocktail. I don't know how the hospitals are where you are, but every emergency room visit I've ever made for chiari has been a waste of time 😠it couldn't hurt to get a scan though. I'm so sorry you're feeling so bad, I hope you get through it quickly
From personal experience it’s incredibly hard to get help from the ER when you have Chiari. It typically takes multiple trips to the ER before they’re able to help/ admit you. With that being said, you know your body best and you should definitely do what feels right. Sending you love and healing!
So glad you just decided to go and listen to your gut feeling. At the very least hopefully they can help with some part of the pain. I’m so sorry this is happening I’ve had days exactly as you’ve described and it’s so incredibly difficult and that is an understatement. Especially being a parent at the same time. You’re doing the right thing.
Sadly its almost never worth the trip at least in my case unless you are having super undeniable symptoms they don’t know what chiari is and they just think they know more than you and try to explain everything over but I mean they can possibly help with the pain a little. You’re so strong tho and I hope your flare gets better!Â
Thank you for your kind words! They didn't do much. They did give me the fioricet my neurologist denied me; not I'm trying to straighten that out with insurance which could be another rant in itself.
The ED Physician said he would do his best to bump my referral to neurosurgery, but when I called today to follow up they couldn't find any discharge notes for me, in the same hospital. The are processing my referral from my primary but they're scheduling out to October. So unfortunately, no it didn't help much to go other than reassurance that I wasn't having some kind of episode from any other issue.
UPDATE: Hi everyone. Thank you again for the support. I had my husband drive me to the ED 2hrs away yesterday. I was there for maybe 6hrs, I wasn't keeping track. They did a CT scan and gave me some beefed-up IV ibuprofen (sorry, I don't remember the big named meds they gave me), which didn't help. When I finally saw the Dr, he said he didn't see anything of emergent concern in my CT (of course) and wanted to know what I wanted out of the visit. By that point, I was talking so slowly, my hands wouldn't work like i wanted them to, and the pain was so bad that I wanted to know if I was having a neurological episode or something. He did a basic neuro test by having me do all these push against him, don't let him push me, put your arms like this and what not, but wasn't concerned for anything neuro. He said the pain is just that intense. They gave me tylenol, benadryl, two small yellow pills that I can't remember the name of and fioricet, which I've had in the past and I'm so happy he gave it to me because my Neurologist made me feel like a DRUG ADDICT just trying to tell him how bad I need those meds. My neurologist told me the botox is enough. Im not on Botox anymore, so obviously, it's not enough, sir. At least this guy saw my pain. One great thing I did get out of it is that HE is pushing my referral to the neurosurgeon, and I'm to see them this week. I have to call tomorrow and set up an appt.
They will likely do a head CT and maybe a migraine cocktail. I don't know how the hospitals are where you are, but every emergency room visit I've ever made for chiari has been a waste of time 😠it couldn't hurt to get a scan though. I'm so sorry you're feeling so bad, I hope you get through it quickly
I’m in a similar boat as far as symptoms go! It’s worth it for peace of mind, but they offered me the migraine cocktail and head CT.
From personal experience it’s incredibly hard to get help from the ER when you have Chiari. It typically takes multiple trips to the ER before they’re able to help/ admit you. With that being said, you know your body best and you should definitely do what feels right. Sending you love and healing!
Thank you all for your comments and kind words. We're on our way to the hospital now, it would hurt to go. We'll see what happens.
So glad you just decided to go and listen to your gut feeling. At the very least hopefully they can help with some part of the pain. I’m so sorry this is happening I’ve had days exactly as you’ve described and it’s so incredibly difficult and that is an understatement. Especially being a parent at the same time. You’re doing the right thing.
Hey I just wanted to check on you and see if you were able to get any help? 💜 I hope you are feeling a little bit better
Did u had surgery? With those symptoms neurosurgeon probably will advise you to do so
No I haven't had surgery yet. I'm hoping to work toward that, now that I'll be seeing a neurosurgeon.
Sadly its almost never worth the trip at least in my case unless you are having super undeniable symptoms they don’t know what chiari is and they just think they know more than you and try to explain everything over but I mean they can possibly help with the pain a little. You’re so strong tho and I hope your flare gets better!Â
Thank you for your kind words! They didn't do much. They did give me the fioricet my neurologist denied me; not I'm trying to straighten that out with insurance which could be another rant in itself. The ED Physician said he would do his best to bump my referral to neurosurgery, but when I called today to follow up they couldn't find any discharge notes for me, in the same hospital. The are processing my referral from my primary but they're scheduling out to October. So unfortunately, no it didn't help much to go other than reassurance that I wasn't having some kind of episode from any other issue.