my wife and pain management

[PromisedLand]

It's a long story but I'll condense it.  My wife had lat flap surgery 3+ years ago for breast reconstruction after breast cancer.  She has been in intense pain ever since.  She's been on vicodin, perc, oxy and now morphine..she was recently (3 months ago referred to a pain clinic who put her on 3 (10's) percs a day.  ON her last visit they did a uriine test which was no problem for her as she had nothing to hide.  He also then moved her up to morphine 2x day which she doesn't like and wants off..talked to the doctor last week about it.  He said "we'll talk about it next appt)...Today she gets a certified letter from the pain mgmt doctor saying he was dropping her..her test came back with no indication of perocet usage and they found traces of dilaudid, which she has taken 1 time in her life, 2 years ago for a migrain (and hated it).  She is now trying to convince this guy of her integrity and point out there must be an error..Of course, no return phone calls and the people she's talked to do not want to believe her.  She is in intesnse pain..she's seen 3 separate plastic surgeons each of which said they couldn't help her..Yesterday we saw one who gave her some hope..he's done over 500 and found that 1% of his patients wind up in her situation, but he believes he can perform a procedure that MAY fix it, either improve it, relieving the pain or making no change.he can't guarantee..but she's gonna try it..

Anyway...and advise on how to deal with this dilaudid thing and the pain clinic..so far after 6 hours, no return calls..she has taken nothing but percocet (and the morphine) with the exception of a shot of demorol for a migrain 3 weeks ago which he new about, and vicodin prescribed by her dentist..which angered the pain guy but they cleared the air on that.

would appreciate any advise/suggestions


Jim

[Tuckamore]

Hang in there. Your plate is so full. I wish there was something I could do other than listen. Keep posting if it helps. We are all here for you. Tuck

[PromisedLand]

I know it's time to move on.  I was ready to yesterday until I sat here, saw her crying in pain and felt helpless.  She is getting a new PCP but we are in a spot where she is due to have surgery in October (to correct issues with her breast reconstruction) and that is being done via referral from her current PCP and the insurance feels things could get confusing were she to change right now.  Her current PCP is trying to "expedite" matters with the new pain clinic, and is at least reviewing her question "why give me 6 vicodin to withdraw from percocet and morphine, and clonidine? (to which they never gave instructions on how to use it)" when her issue is PAIN?.

My son is getting better..will still be a while, but he is getting better.  Did I tell you that alcohol played a key factor in this?  He had consumed heavily the night before and apparantly was still drunk and under the influence of his meds when he passed out.  I'm concerned..this kid (26) seems to have a death wish or "spend my life in jail wish"..if he is found under the influence by the police...5-15 years (he's on probation)...

all of this stuff is contributing to my own depression and I'm finding I'm the one trying to hold everything/one together.  I thank God for my 32 year old son in Georgia who is helping out with his brother.

Thanks again for listening and God bless you all.


Jim

[Tuckamore]

My heart goes out to you. Unfortunately I have to agree with annamarie's post about moving on. I know you are waiting to get into another pain clinic (if I remember correctly.) If her chart has been flagged you will have problems where ever you go. Your only hope it to find an empathetic physician that will listen to her and more importantly BELIEVE her, believe that she indeed has pain.

I don't want to be so pessimistic but this may take a very long time. Once you are labeled it follows you. The two of you must keep trying and looking until you do find that one great physician. It may or may not be a PMP. I have seen one once and vowed I would never return to be humiliated again. I know there are great ones out there. I just didn't find one.

Hang in there and visit ER if necessary and if they will help her. I'm afraid after awhile they may refuse to give her narcotics too. Take care, keep us posted and you may vent anytime you feel you need to. How is your son? Tuck

[PromisedLand]

She's out of her meds now and in withdrawl, depressed and to the point I wouldn't be surprised if I wound up taking her to the ER tonight.  She's taking the clonidine (though she took one a short time ago thinking it was clonipine).  What's scaring me now is her depression, which could be part of the withdrawl, I know.  The whole scene between the PM and the PCP has depressed the heck out of her..I sent the PM one nasty (but well worded) email tonight which I'm sure will be ignored when he gets to the part that our vet is more professional with our animals than with my wife.

Sorry to keep going on and on with this folks...allows me to vent. between this, my son, and other stressors I'm beginning to feel like walking time bomb.


Jim

[annamarie0424]

I would not put too much more energy into something that is so rediculious.  Sometimes I totally throw a fit when tests and x-rays show no sign of things that I thought were there, or show positive results for something I didn't take.  Everyone has unique chemistry in their body.  Asking the jerk doctor that came up with the false results how this could possibly happen will get you nowhere.  What you can do in the future is ask for a blood/ or urine "split"  This means that if the tests come back showing anything weird you can take the half of the blood/urine that is left from the "split" and have it tested at an independent lab.  To be absolutely totally sure, you can go directly from the doctor's office to an independent lab ($50 bucks), as a routine, and have them take blood or urine to date and hold.  That way, if anything comes back weird you can have your independent lab go ahead and double check.

[PromisedLand]

She  has another PCP...mine..unfortunately their practice has a new policy of NOT prescribing narcotics, something I'm finding more and more common..my neighbor is home but we've been tied up with other stuff and not n touch..We will be going to the medical board..this guy cut her off without the 30 days, and has refused to answer her phone calls or emails concerning being tapered off the meds.  Her former PCP has apparentely labled her as an abuser and has put instructions in her chart "do not prescribe narcotics.  It's a mess, because her pain is in creasing,. The ER is a likelihood tomorrow,


I just don't get it, particuularly since she has NEVER had dilaudid which showed up in her tests.  Her former PCP has said he would help her out with Ibuprophin type meds.

Jim

[Tuckamore]

Hi again Jim,

Yes it has become a ping-pong affair. And I am sorry for you and your wife. I would look for another PCP. If my PCP didn't care enough about my well being to help me in this type of situation I would question his compassion and caring about my health in general.

Has your attorney neighbor returned from vacation? I would get him involved ASAP. And in the interim I would waste no time personally contacting the medical board. When we are so obviously left high and dry we must follow all the avenues available to us to make our plight known. If enough of us complain loudly about the treatment of CP victims maybe we'll start getting the proper care and treatment we deserve, instead of being treated like second class citizens and drug seekers.

Keep us posted and hang in there. Take care, Tuck
  

[PromisedLand]

This has really become a ping pong ball..her current pcp says he gave her enough to taper..6 vicdin and 20 clondine...this after 3 months of 10mg per 3-4 times a day and them morphine for 2 weeks from the PM guy.  The PCP says he is not going to give out any more narcotics.  she is to taper off the them until she fnd another pcp...what he
doesn't discuss is "what about the chronic pain she is in"..she has written to the PM that he is responsble for 30 days treatment after discharge with no response.  State medical board next stop.

Jim

[Tuckamore]

Jim,
There is an old saying, "When it rains, it pours" and it certainly is pouring in New Hampshire. I am so sorry about all the issues you are facing at this time. Life is never fair.

I am glad that your PCP is willing to assist your wife. October seems like forever when you are hurting but hopefully she can hang in there until than. Possible her PCP will order her a few pain meds if he knows she will be seen in a pain Management Clinic soon. How is she doing?

Sandee is right, don't quit looking. It may take awhile but someone will help your wife. What a sad state of affairs the USA is in when it comes to helping the victims of CP. I am ashamed that they lack compassion and understanding when so many CP victims must suffer. But that's another story. Keep us posted. I'll say a prayer for your son. Blessings, Tuck

[PromisedLand]

my wife spoke to my PCP last night...he would be glad to be her PCP but reminded her that their practice no longer prescribes narctotics either (excpt under extreme circumstances)..BUT he would try to expedite her into the other pain clinic that said October was the earliest.

He also reminded her that there IS  a 30 day law in New Hampshire and the doctors are required to care for patients they discharge until a new doctor is found.  My wife wrote a rather nice note to her PCP last night..that will be interesting

Jim

[sandee1818]

I am sorry for the horrible things that are happening:(
Have you made arrangements to see another PM, do not give up keep looking and you will find one. I know it is depressing and hard to keep getting turned down but you must forge ahead anyway so you can find the Dr that I am confident that is out there and willing to help.

[PromisedLand]

The Doctor my wife saw today decided against helping her.."too complicated" so she's back where she was.  

My son had an MRI this morning and will have an EEG this afternoon...I'm waiting for my ex or other son to call me, though I'm getting tired of waiting.  (they're in Atlanta, I'm in New Hampshire)...I may fly down there tomorrow..the doc said "he has a brain injury that
"should heal" but I'm not sure that's the whole story.


Jim

[Mollyrae]

OMG. You have sure had enough of the Cr** lately. My prayers are with your family tonight. Please take care and let me know how your son comes out.  Mollyrae

[sandee1818]

I am so sorry to hear that about your son. Our thoughts and prayers are with your family.

[PromisedLand]

Thank you all...got some bad news a short time ago..my 25 year old son had a seizure (whith to my knowledge he's never had) during a group therapy, hit the floor with his had and was taken to the er..the cat scan showed a lot of bleedng hin there and some swelling...and now the hospital (emory in Atlanta won't treat him..no insurance..if he were brought there to begin with they would..so Im waiting for further updates and may fly down there tomorrow..right now he's lucid and the're waiting results of another Cat scam

of course I'm a wrecl


Jim

[Mollyrae]

I am happy as well:):):):):)   Bear, thank's for keeping me up to date with the pm's.

[sandee1818]

I am so happy that she has hopefully( keeping my fingers crossed for her) found someone who will help!
Make sure you take all the documentation you have.
My thoughts and prayers are with her!!!!!

[Tuckamore]

WONDERFUL!!! I am so happy for her and you as well. You both have been on my mind. I too will be very interested in hearing his angle on all this, though I know it's really not my business.

Maybe now she will get the pain management she deserves and someone will listen to her. I hope you have found a doc like mine. I do not go to a PM Clinic. I think I have explained that earlier. But my DO is an excellent listener and constantly offers other suggestions and is very supportive. I sometimes think she really knows how I feel and that is the ultimate in a doctor patient relationship.

Hang in there Jim. I think there is a light at the end of that tunnel. Take Care, Tuck

[PromisedLand]

She has found a doctor who will see her on Thursday AM at 8.  she exlpained some of he background to her and she is interesssteed in seeint her


jim

[Tuckamore]

Hi Jim,

I'm still following. Our times are off as I spend much of mine caring for my mother. Thanks for asking I think she is improving, very slowly.

Clonidine is also used to control blood pressure. So be cautious with it's use but I'm sure you know that.

She may have built a higher tolerance for medications than you have and that is why it has not knocked her on her "keester."

Have you had any success getting into another pain clinic sure hope you can find some relief for her. Severe CP is indescribable. No one should have to suffer with pain that is never controlled. Your a great husband. Keep hanging in there. Tuck

[PromisedLand]

just a quick update for those still following...the PCP told her today all he will prescribe her is ultram..enough for 30 days at a time.  He will not prescribe anything else...in the meantime, she has started withdrawls and is not feeling too good..she's taking clonidine which she swears isn't helping (it save me, I know that)...they told her to take up to 4 .1s per day...I'll have to keep an eye on her.  She also has klonipin (1meg) and I suggested that might help her sleep..I don't know why the clondine hasn't knocked her on her keester.

Jim

[PromisedLand]

Thank you, Tuck...and the best to your mother at this time.



Jim

[Tuckamore]

Jim,

I am sorry I have been out of town due to my mom's open heart surgery and I am just back therefore I have missed your posts and have not been able to offer you any support. It looks like Sandy has been offering you great assistance and information.

I don't have anything to add other than hand in there. And keep trying to find a PM. I also agree with her about female physicians. I was in such horrid, horrid pain for years and when it became so bad I thought I would end it all I stumbled on a intuitive female DO that recognized my pain without me saying a word. Thanks to her I can get up in the morning and not wonder why I have to live. Those doc's due exist. I wouldn't have believed in 5 years ago. And I have not had to go to a pain clinic. I am hoping I never have to after all the horror stories I hear such as yours.

It is illegal to abandon patients like your wife. I hope you go after the clinic that has put you and your wife through this mayhem and unnecessary crippling pain. Maybe when we exercise our rights there will be more responsible doctors and clinics.

Stay strong friend and keep posting. We are here to support you and your wife. Take Care, Tuck

[SANDIANZ]

I read your post and can so relate.  tony has been on opiates for 40 yrs.  he has had 11 lateral back surg, 3 thorasic and 3 cervical.  2 swhoulder manipulations and 3 yes 3 knee replacements,  he is not an alien, just a gut whp had a bad one.  over the years we have beent to hjospitals , clinicsl pain managemeng specialist,   winchester hosital pain  
management at 333 washington st woburn may be able to helpl  we actually went tp an emergency room for his pain back in the dahy when they han index cards on repeaters!!!!  Tony was not listed but a nurse actuoally said she didn't believe in pain meds.  i mean this is not the dark ages.  but allot of pain management specialist have been targeted by the government as dealers.  our guy who used to help tony unbelievable with nerve blocks in the spine.  had toi leave the pain manag biz .  the hosp would't back him up any  mor.  it reallhy is a sin what is goingh on for people like tony and yur wirfe who really need meds.  to survive or in our case walk.  tony said to make sure everything is backed up with documents.  phone cals,,  letters, contact a tort lawyer, i dodn't think it is lawful to do that to patients.  not sure but tonys said he could sue as he has a contract with drs office and he does not break it and does everything they ask.  no reason not to.  

weoll keep well and peace to yu and your wife,  kee[ in touch

sandy  mass