I just came off the tail end of a 3 day 10+ pain migraine to find out that the ER I normally go to for this like this is listing me as do not treat because of how frequently I'm in there. I really feel like the best and only option at this point is to give up on it all and just let nature take its course. Has anyone else reached this point and what have you done to pull yourself back up? I could really use help in this time.
Thanks for your reply. I have an appointment set up with my PCP on the 13th, it sucks having a doctor that is so busy because that was the soonest they could get me in. As for the pain management, I was allowed 1 visit a week with the medications that they are not refusing to administer as part of a pain management contract between the hospital, my PCP, and neurologist. It's confusing and frustrating to say the least but I know that I have people who are there to help me, I guess this morning just really hit me.
Abby said:
Hello my friend,
At times I think we all feel like giving up. But that would be letting Chiari win. You have many friends here who care about you and understand. Then what would you family and friends do? We need you and you need us. Talking to someone might help you. You might want to discuss pain management with our PC and soon. Migraines for 3 days with over a level 10, is enough to get to you. Please know your not alone. I know when I have one of those awful migraines, I do what my doctor says for me to do. Sleep it off. I use advil and ice to get comfortable enough to sleep. Your PC or neurologist can help you get in a good pain clinic. Please don't get discouraged. I am sorry the ER listed you as not to be treated. Having Chiari is so misunderstood. You should also include these feelings your having with your PC. There are medications for you. God Bless you and please know we care.
Hi
That sounds strange about that practice in ER's to blackball you, but if you still need pain control now to think straight without pain, can't you go to another ER. Ask a friend or relative to take you elsewhere as the best quick option. Also, do you have a regular doc who can refer you to a pain clinic; they're probably worth a try. Living with pain isn't easy, but it's good to seek support like this.
I'll ask around to see if we can come up with other help for you.
Take care,
Geoff
Hey guys, I guess our messages crossed in the e-mail here, but it looks like we're all on the same page with the pain clinic.
I've already got a pain management specialist in my care team. The neurologist I see is part of a pain clinic that specializes in dealing with pain caused by spinal malformations. As for having a regular doctor, I've got one that I see twice a month for updates and follow ups, I see the neurologist on a monthly basis.
As for going to another ER, closest other ER is 10 miles away and the drive is close to 30 minutes in traffic and all the ERs over here are connected. The first time I went to the ER here in the Spokane Valley they had my information from when I lived in Idaho. EMR is both our friend and enemy in this case.
gag said:
Hi
That sounds strange about that practice in ER's to blackball you, but if you still need pain control now to think straight without pain, can't you go to another ER. Ask a friend or relative to take you elsewhere as the best quick option. Also, do you have a regular doc who can refer you to a pain clinic; they're probably worth a try. Living with pain isn't easy, but it's good to seek support like this.
I'll ask around to see if we can come up with other help for you.
Take care,
Geoff
Thanks, I see you're pretty well set-up then. If you go once a week they should give you enough to control your pain next time so you don't need the ER in between. Once you're determined to be a responsible pain patient, they should adjust your needs I guess since you see them regularly.
I did not know that an ER could legally refuse to treat anyone?!?!?
Acpool,so sorry you have to go through so much pain.Hope you get the help you need,it’s so hard to deal with this chiari but maybe the pain management specialist can find something for you.I know that you feel alone in this but the good thing about this site is having friends who understand your pain.Keep your head up and you will be in my prayers.We do feel like there seems to be no end to the misunderstanding of this illness.Please know you’re cared about here and keep us informed on how you are doing.I hope you will feel better soon.
Scpool, gees I’m so sorry that you are feeling so bad, and also that your ER has you on a list. Not only does that limit your options, but that’s something I would take very personally. We know you here and care that you are in so much pain. Will you please talk candidly about this at your next PCP visit, ask what you are to do when your pain warrants an ER visit? You need someone on your side.
Hugs, jenn
Thanks Jenn. I talked to my PCP over the phone today and he is going to talk with the ER director to find out why this is being done when I had a pain management contract that I was following that they had agreed to not even 3 months ago. He's also recommending that I get grief counseling because of the impact this is having on my life and how I went from being an emergency room tech who loved the out doors to someone who can barely function in under 2 years. I still have the appointment coming up on the 13th with him and he said he's hoping to have some ideas on what to do by that time. He mentioned that it may also come down to a face to face meeting between himself, the ER director, and my neurologist so he can get an actual clue as to what I am going through when I go in compared to what his staff is putting in my charts; I guess they aren't documenting everything like they should be.
jcdemar said:
Scpool, gees I'm so sorry that you are feeling so bad, and also that your ER has you on a list. Not only does that limit your options, but that's something I would take very personally. We know you here and care that you are in so much pain. Will you please talk candidly about this at your next PCP visit, ask what you are to do when your pain warrants an ER visit? You need someone on your side.
Hugs, jenn
I'm sorry to hear about your pain, and even more so, the fact that your doctors do not seem to be addressing it! I think maybe its time to tell your doctor to either help you, or refer you to someone who will! Don't be afraid to stand up for yourself and demand the kind of treatment you deserve! I am on oxycodone daily, and have been since my surgery in July, and I get hassled by doctors often, but I tell them until they've been through what I have, they don't get to judge me! YOU are your own BEST ADVOCATE. You have to be. Take a day or two to "wallow", as I call it, and then get back up and FIGHT. We all have days when we feel like we just can't do it anymore, and its OK to feel that way, living with Chiari SUCKS more often than not. But we are all here for you, we get it, and we're here to say DON'T GIVE UP. There are better days ahead! Demand the care you need, and please let us all know how you're doing...
They can refuse to treat but they can't refuse to do an evaluation. That's the catch 22 part of it. If it's a chronic condition they can just assess to see if there are any new problems associated with it.
AussiePupOwner said:
I did not know that an ER could legally refuse to treat anyone?!?!?
I think my PCP was shocked when I told him that either we get this under control and have it so I can have access to pain relief or I was going to find a new provider. My other half has been really good with pushing me through this; only giving me a day or so to have a "self pitty party" before I have to move on and keep going like I normally would. Luckily today is one of the few days where I have been pain free for the most part and I've really taken advantage of it with cleaning house and doing laundry even though I know tomorrow it'll catch up with me and I'll probably be bed bound; at least I got a good day in.
Jenny3aD said:
I'm sorry to hear about your pain, and even more so, the fact that your doctors do not seem to be addressing it! I think maybe its time to tell your doctor to either help you, or refer you to someone who will! Don't be afraid to stand up for yourself and demand the kind of treatment you deserve! I am on oxycodone daily, and have been since my surgery in July, and I get hassled by doctors often, but I tell them until they've been through what I have, they don't get to judge me! YOU are your own BEST ADVOCATE. You have to be. Take a day or two to "wallow", as I call it, and then get back up and FIGHT. We all have days when we feel like we just can't do it anymore, and its OK to feel that way, living with Chiari SUCKS more often than not. But we are all here for you, we get it, and we're here to say DON'T GIVE UP. There are better days ahead! Demand the care you need, and please let us all know how you're doing...