please, please help

[chiaribabe]

please help guys. my pain is terrible. when they sent me home, they sent me with a 5 day supply of muscle relaxers and oxycodone. we stretched that out as far as we could. when i take them, my pain is at about a 8. without it, it rests at about a 6. today, i called the NS. they will not give me anymore, except tylenol. I am about 9 days post-op. (my srugery was actulal rescheduled and i forgot to say that in my other post.) On their website, it states that "Because narcotic pain pills are addictive, they are used for a limited period (2 to 4 weeks). Thereafter, pain is managed with acetaminophen (e.g., Tylenol)." It has not been 2 weeks yet, much less 4.

what can i do? my husband was on the phone with them forever. the nurse insisted that the steroids would help my pain and that i would be fine with tylenol but the fact is that i am not and even with the oxycodone it's pretty terrible. i have't slept more tan 1 1/2 hours at a time since release due to the pain. you know what i went through in the hospital. i have ehlers danlos syndrome as well and that affects recovery.

i feel like i am being left on the curb here. the nurse told my husband that was I 'fine" when i was released but i wasn't. they sent me home vomiting and with thrush and in pain. sure, i could move my neck and walk around and bathe but my pain was not being managed then.

the ns nurse said she would call back at the end of the day. is there anything i am saying or doing inorrectly? my pcp said she would help but that she couldn't give me anything stronger than ibuprofen and i can't take that for at least a little while longer.

i am in serious pain here and at a loss.  

[chiaribabe]

don't know why they gave me such a small supply. the nurse told me that brain surgery doesn't cause the same kind of pain as abdominable surgeries and therefore i should be able to manage it with tylenol and compresses. i tried explaining that EDS can effect healing in different ways but that went in one ear ad out the other. also, just beause one patient can easily manage pain within a week doesn't mean another can. our bodies are different, despite how similar the actual procedure might be for each of us.

my husband called them this morning and they are going to see me at 1:30 today. i'll let you know what happens. it's about 5 hours of driving for us but perhaps seeing us in person will light a spark and they'll take me more seriously.

[linnielou232]

As every one else say's I'm so sorry to hear you are dealing with all this pain.  We all understand the pain.  Why did they only supply you with so little pain meds?  It shouldn't be because you live some place where there is a problem with addiction.  You need them.  I ended up going to a pain clinic and as they explained it some people can have this surgery and be fine without any pain reliever, but as for me they put me on a pain patch with I still have and I'm going on 2 yrs recovery, but like they said some people with Chairi are just as diabetic's are.  They need their insulin we need pain relief.  If your NS denies you of pain meds suggest them taking a drug test so they can see that your not addicted.  It just upsets me that you have been treated like this.  Hoping for a better tomorrow for you.
Linda :)

[chiaribabe]

i don't either excep that in y region drug addiciton is bad and it might be that my pcp can't prescribe narcotics since she is a nurse pracitioner. some local doctors' offices around here are like that-they don't have the power unless they are a MD.

the steroids that the ns called me in yesterday (I stopped the old ones on saturday and they ordered me a new set yesterday thinking they would help) have now caused me to break out into hives. we called the ns hotline and left a message with the nurse. i am not taking anymore.

[Marybz]

I don't understand why your primary care doctor can't give you a months worth of pain meds knowing that your post-op.  She can control how many she prescribes and for how long.  This is a painful surgery. I'm sorry you are having such a hard start to your recovery.  I hope you feel better soon.

[selmaS]

  Go to ur local ER, they should give u something for pain...granted they will tell u to see ur NS for a follow up, but it will get u something for now.

I know the meds needed for this pain is strong, and I had leftovers as I did not take all I had, but I was given more then 5 days worth...ugh...I am so sorry u r going thru all this.

Try and relax....if it gets too bad go to the ER.

[chiaribabe]

i talked to my pcp. i am going to go see her first thing in the morning and she is going to call the NS and try to advocate for me as far as reeiving better care and pain meds. if she isn't satisfied with what she gets then i am going to go to the university hospital. it is an hour up the road, unlike where i had the surgery which is 3 hours. right now i can't sit up for more than about 30 minutes without gettig sick and the pain is awful so riding up there for 6 hours just to get a runaround would be a waste of time for all of us. if things change at ALL tonight, though, i will go straight to my er.

this is ridiculous. i am writing so many letters in my head. the stress, of course is makig things worse so i am trying to take it easy tonight and get plenty of rest. specialist or not, any doctor and staff who treats this like it's just a minor surgery with no risks or complications should be looked at twice in the future. i hope nthing is permenently screwed up.

[SilentSong101]

I agree you should go to a hospital again...though, I would not go to the same one that you had your surgery at - despite them having your record, your post op care just makes me think that they wont be much help to you....I would try the local university hospital...bring some information about chiari if you have it...perhaps even some names of some specialists....explain what happened at the other hospital.

Im not just worried about your pain - Im worried about your well being, potential SFL (I have been reading your other post)...etc...if they recognize that you need help, that's a start to getting help.

[irislita]

Really go to the hospital...at least tomorrow morning when ns department is working regularly.dont wait till they find u someone.it ll be to long wait and pain!

[chiaribabe]

i don't have a NL yet. my pcp is trying to find one that knows something about Chiari-the one I had hadn't heard of it so i fired them and no longer see them. there is a local hospital (a university one) that has a NS department. maybe i should try there? would it be helpful to go to my PCP and have HER call the S and try to advocate on my behalf? she is a nurse practitioner. don't know if that's why she can't give me anything other than ibuprofen or or not.

[irislita]

Yeah u should definetly go to a hospital.i think u told us u already have a nl...try to call her.but they do have to give u meds for ur pain...its ur right...really if not go to er under massive pain.i cannot believe ur pcp cant give u more than ibuprofen.i think in spain they can prescribe u almost every pain pill or relaxer.poor u.i am so sorry!

[ChrisS1980]

I am sorry for your pain. Those doctors have the bedside manners of a doorknob. The only thing I can think of is ask for a referral to a pain management clinic. I am sorry that I have no other options for you, but it might work. You might even be able to call a place like pain management and ask them their advice on someone higher up you can complain to.

Hope you get better soon~Chris

[geebug]

Is there another hospital you could go to?  They should never have sent you home in that condition, and they certainly should not be refusing you pain meds.  They just operated on you, for pete's sake!