Very Concerned about PM apt on Monday and future of PM treatment

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Retired Mom
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Date Joined Feb 2010
Total Posts : 1753
   Posted 8/17/2011 3:39 PM (GMT -6)   
As some of you may remember (and for those who I have not met), I have been seeing PM for several years and have had some good and some bad apts.  I don't quite understand the complexities of the office and find that contacting the "nurses" is almost always a BAD idea because the information I get does not match what is given to me later when I speak to the Dr.  I also had two Drug Screens not show the Dilaudid I take (which I did take) and then a second one on the same day as the second failed screen did show the med in my system.  I also have had several conversations with my PM where he will say that he comletely understands my condition (spinal problems/severe feet problems for his part) and that he has no problem giving me the meds I need.  We reduced the Dilaudid because it has NO effect on me as far as I can tell.  It used to be what I was taking for pain relief but stopped working.  He put me on Oxy IR and said we could adjust this med up as much as we needed with no problem.
 
So about three weeks ago I called to ask them to please schedule an apt early for me so I could see the Dr and told them that I was in horrible pain.  I wanted to have some MRI's done because I thought I had herniated a place or two in my back and wanted to schedule some new RFA's.  I needed the MRI's to know where the RFA's should be done.  The nurse told me to have my PCP schedule the MRI's and send them the results.  I have been in pain that will not end!!  I have called and begged to be put on the schedule as a call in and they have the MRI results that I mentioned in my other thread.   Today I called back and was told that I had to come in on Monday (already had apt from call three weeks ago) to have some trigger point injections (but I am allergic to Steroids/NSAIDS and can only get lidocaine).  I had also asked for permission to take a dose or two extra if needed when the pain is unbearable (as it has been lately) and said I do not need a new prescription and was not asking for one.  The nurse told me today that the Dr said he was not going to "chase the pain with meds" and that I would probably be sent back to the neurosurgeon (I already have an apt on the 29th, but I DON't want surgery if at all possible). 
 
I'm sorry this is so long, but I need some advice.  I get so frustrated and upset when I go in and start to cry when I try to explain my life as it is right now.  I DO want the RFA's very much and I DO want the Dilaudid to be stopped because it doesn't work, but I can't live in pain the way I am now.  I got the very distinct impression that they are telling the Dr different things from what I said (like I want more meds....over the phone...a big NO NO) and things like that.  I'm going to take my husband with me and hope they will let him in, but they don't want anyone else in the office when you are in the back.
 
Does anybody have any idea what to do or say in this case?  I know this is a book and I'm sorry, but this is out of my control and my pain is making my life ****. 
 
Thank you to anyone who has an idea! cry
TLIF L5-S1/failed, Pituatary disorder w/HGH deficiency, Fibro, Failed Bladder Surgery & Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, Pre-glaucomic, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (surgery related trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendionitis, Adult Onset Flat Feet & much more.....

Jim1969
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Date Joined Jul 2009
Total Posts : 2042
   Posted 8/17/2011 4:11 PM (GMT -6)   
What do you want to say to the doctor when you see him next?

Start with the broad strokes and as you figure those out write them down. Once that is done go back and present your case for each bullet point in writing. Then put it away for at least a few hours and go back a read what you have written and if need be polish it up. Then have your husband read it and let you know if your "argument" and justifications make sense. Keep at it as needed until you have written down exactly what you want to say.

Once you have it all down on paper take it with you to your appointment and if you get flustered you can either read what you have written or give it to the doctor and have him read it for himself.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 8/17/2011 4:32 PM (GMT -6)   
Thanks Jim. You are very right that I need a list of things to talk about. I normally do this (and bring a list of all meds/allergies/new diagnoses), but I haven't really thought about doing it this time. It's mostly because I've been in so much pain. I guess the new MRI's would speak for themselves and he could understand why I had them done.

I just don't want to loose out and have to search for another PM, especially since I found out today that I have to have a referral from the guy I'm seeing now to get in to the "good" one around here. That's kind of scarry to me.

Again, thanks for your imput!
TLIF L5-S1/failed, Pituatary disorder w/HGH deficiency, Fibro, Failed Bladder Surgery & Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, Pre-glaucomic, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (surgery related trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendionitis, Adult Onset Flat Feet & much more.....

Serenitee
Regular Member


Date Joined Apr 2011
Total Posts : 463
   Posted 8/17/2011 5:33 PM (GMT -6)   
Retiredmom,

I just wanted to say I'm sorry you are in so much pain. I don't have what you have but I am in unbearable pelvic/bladder pain. Finding a Doctor that was knowledgeable was difficult enough. I had my first bladder lift w/abdominal hysterectomy in 2004. Lasted till 2009, when my colon tore thru vaginal wall & colon & bladder fell out thru vagina. Had another bladder lift, rectocele, vaginal vault lift (lifting all pelvic organs back up including intestines held by mesh. Then my large intestines quit functioning & in May 2011 I had to have an ileostomy. Pelvic/Bladder pain become absolutely unbearable. I have fought & fought for them to at least try anything that might work. I don't have a pain management doctor & never have (not sure if this would be more helpful?)

Anywaz, I'm so sorry for your difficult time & pain you are having to live with. I know how hard it is & it is so difficult to get your point across to Doctors how much you are hurting. Best of Luck to you...Keep us posted.

Your Healingwell Friend,
Serenitee

cogito
Veteran Member


Date Joined Oct 2010
Total Posts : 926
   Posted 8/17/2011 6:19 PM (GMT -6)   
Sorry about your struggles with your PM.

I wanted to mention something regarding dilaudid. I've tried it and it has no effect on me. According to my PM, some people don't have the liver enzyme needed to metabolize it into its active form.

I have a chart of opioids and metabolizing enzymes. According to it, dilaudid is metabolized by UGT1A3 and UGT2B7. Most other opioids are metabolized by CYP3A4, UGT2B7, and/or CYP2D6.

It may be that the drug screens are showing varying results as well if they are testing for a metabolite that you are no longer, or only minimally, producing.

So, perhaps a liver function test might be a good idea.

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 8/17/2011 6:39 PM (GMT -6)   
Thank you all so very much for your information!

Serenitee, I have not met you before and I am very sorry for your pain. I too have a failed bladder surgery, but that is another story in itself.

RA: Thank you for taking the time to explain what you did! I am very surprised to read that one narcotic works the same as the other, since it honestly feels like the Oxy IR takes effect in 15 minutes with a lot of relief (could be better, but does help a lot) and the dilaudid does not. Of course, the Dilaudid does work well in a hospital setting, but I am assuming that is because of the strength and how it is given. I'm honestly somewhat confused. It used to work well, but I was having to keep asking for increases in strength with very little improvement in pain management.

When I tried the Opana, it was wonderful for six hours, then I felt like the "rest" of the medicine released at one time and that I was going to overdose. I don't have any knowledge on a physician's level, so I can't explain what happened....just what it felt like to me.

I'm also surprised about the MRI information. I did have symptoms that were new (significant pain in the upper back) and changes in the pain associated with the fusion area (L5-S1). According to the back specialist I saw about a year or so ago, the bone was growing to the right and not up and down as it should. He could show me on the CT where the fusion did not "take" and there was no fusion at the top or bottom of the appropriate area. He wanted to go back in and scrape out the old material and then put in a cage while leaving the screws/rods. I wasn't up for the additional pain from the surgery at the time (and still am not).

I have also had serious (to me) conditions develop in my feet that cause me to wear Richey Braces during the day and other supportive braces at night while I sleep. The podiatrist advised that he thought the problems began as a result of my back. Either way, it's yet another thing that keeps me in pain. I don't really know where to go from here with even asking for help in the pain management department. I have my meds and I don't want to loose this part of my pain management. The RFA's help so much, but perhaps I just don't know how to explain or ask for help. I don't know what to do other than explain my situation and ask for something to help me have a life with my family. If you have suggestions, I would love to hear them and I promise I will not take them as "medical advice" since we are not allowed to do that here. I think it would be wonderful to have your perspective. Again, I want to thank you for your time.
TLIF L5-S1/failed, Pituatary disorder w/HGH deficiency, Fibro, Failed Bladder Surgery & Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, Pre-glaucomic, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (surgery related trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendionitis, Adult Onset Flat Feet & much more.....

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 8/17/2011 6:46 PM (GMT -6)   
Cogito,

I'm sorry I missed you in my earlier post. I guess I was posting my "book" at the same time you were responding. It's nice to know I'm not alone in the response to the dilaudid. I will check in to the liver test too! I often refer back to my posts because I have difficulty remembering (from a damaged pituatary gland) and your post will really come in handy. I take the shots (HGH) nightly, but the memory is still not what it should be.

Again, thanks!!
TLIF L5-S1/failed, Pituatary disorder w/HGH deficiency, Fibro, Failed Bladder Surgery & Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, Pre-glaucomic, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (surgery related trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendionitis, Adult Onset Flat Feet & much more.....

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 8/18/2011 12:16 AM (GMT -6)   
Hello Retiredmom, I am so sorry you are  having so much trouble with your pm doctor.  I also took dilaudid 4mg 3xday and they had no effect on me.  I was given them for breakthrough pain, but they were useless.  I would also like to add that they cannot keep your husband from going in with you at your appt.  And if they continue to refuse to let him go back with you, this makes me very wary of there reasons.
 
You have to remember you have rights as a patient, one of those is to have someone else with, and absolutley your husband should not be kept out.  I sometimes take my daughter in with me so if I dont remember something, or forget to ask a question I have, she is there to support me.  I have taken to writing down any questions I have so that makes it easier for me.  Never once has the doctor not allowed her back there with me.  What are they trying to hide.
 
Take care, hope you will be feeling better soon.  Remember you have rights.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson
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