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  • Pain Management for Chronic Pain Patients....not fair!

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    Old 01-05-2010, 12:54 PM   #1
    jdsun
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    Pain Management for Chronic Pain Patients....not fair!

    I haven't posted in a while because I've just had so much going on and my back problems have been stable...no better, no worse. My pain management doctor finally has me on a good combination of medications that seem to be keeping my pain at a level 4..which is the best it's been. I am on Kadian, Oxycodone, Zolof, Trazadone, Amitza. Anyway, I've had some other health issues that I have been dealing with that have brought me to the hospital and have opened my eyes WIDE open.

    I had a hysterectomy 3 months ago. I woke up in agonizing pain....it was horrendous. The doctors were very good with me and brought in the pharmacist, pain specialists, called my pain doctor....all working to bring my pain down. They did, but it took quite a while. AND...it was down, but still hurt a LOT. I was told that due to my daily narcotic use, I will always have trouble getting my pain under control.

    Yesterday, I had to have another female surgery...arghhh. They left my ovaries during my last surgery, and a cyst formed and twisted my overy. Talk about pain!! Anyway, I woke up from surgery and the nurses were not as nice as last time. Granted, I was not in the actual hospital this time, but in the Day Surgery building across the street. The nurses told me again that since I take daily narcotics, there was nothing they could do to help my pain. The nurse gave me a liquid dose of 5mg of percocet...that's it. She said sorry....that's all we can do. So, I went home in LOTS of pain.

    The pain is better today because I am healing, but I am still very uncomfortable. I guess the point of this thread is to just VENT. Not only do I have to deal with daily chronic pain, but now every time I have to have surgery I know that I am not going to be able to control my pain well. It just doesn't seem fair!!! I hate knowing that god forbid, I need a more serious surgery in the the future...I am going to have to deal with being in a lot of pain. The nurses tell me that they can only give me so much and that's it.

    Arghhh...another joy of pain management I guess.

    Thanks for listening.
    Jdsun

     
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    Old 01-05-2010, 05:50 PM   #2
    Pegala
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    Re: Pain Management for Chronic Pain Patients....not fair!

    Dear JDSun,
    Boy did you hit the nail on the head.
    As a fellow CPer I was on a cocktail of pain meds when I had surgery in September. I had both of my TMJ joint replaced. It was 7 hours of surgery, with one doctor on each side the whole time, so it was somewhere between 7 and 14 hours of surgery. When I woke up I was in agony. They were giving me Percocet for pain, and keeping up with my Fentanyl patches. (I was in the hospital for 4 days). They did not give me Lyrica, Baclofen or Cymbalta, not to mention the 2400 mg of Motrin I took daily.
    I was too out of it to insist on at least the Lyrica or Cymbalta. I worked with a pain specialist while I was in there, but the pain was worse than God awful. In addition I went through withdrawal from the Cymbalta. I hallucinated and was wired, I couldn't sleep. I was afraid to tell the staff about the hallucinations as I thought they'd lock me up in a rubber room.
    The night I came home I took Lyrica and Cymbalta in addition to Seraqual to sleep. It took about 48 hours for the hallucinations to completely leave.
    To be perfectly honest, I thought that these hallucinations and unbearable pain was my new reality.
    Well, it's been 3 months since the surgery and I've bounced back from it all. I'm back to work full time and on the mend.
    Thanks for letting me vent. This is my story and I'm sticking to it.
    Peggy

     
    Old 01-05-2010, 06:13 PM   #3
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    Re: Pain Management for Chronic Pain Patients....not fair!

    If you ever have to do this again then arrange your pain care a head of time. The nurses can only give you what the doctor ordered so it is with him/her you need to make your arrangements with. Although it is obvious they were too lazy/busy to pick up the phone to make the call but you do have a special need so this is something that will need to be worked out ahead of time. Also you can call in your own pain specialist from your hospital bed if you are in an extended or short stay for any reason. You should never have to suffer just because you are on high pain meds... There is always more that they can do for you but it will take you to make those arrangements a head of time. Long ago before I knew anything about pain control the hospital nurses were ignoring me and my pain complaints from a surgery I had so I picked up my phone and called my doctor at his office and asked why he wasn't ordering me meds to cover my pain..he then ordered more pain meds. If you don't take care of yourself who will. Good luck...you have a right to be as close to pain free at both hospital and at home ...so that is what your expectation should be.

     
    Old 01-05-2010, 06:27 PM   #4
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    Unhappy Re: Pain Management for Chronic Pain Patients....not fair!

    Wow! I'm so sorry both of you went through that. That is awful that they wouldn't keep your pain managed post-surgery! It seems like there should be responsibly for the surgeon to keep your pain managed! I just don't understand how Doctor's can expect the medication used to treat another condition, should be all your given to keep your pain managed post surgery. Something seems very wrong with this.

    ~ Fiona Jo
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    Old 01-05-2010, 07:20 PM   #5
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    Re: Pain Management for Chronic Pain Patients....not fair!

    JDSUN:

    I'm sorry you had to go through all that. But I wouldn't make the assumption it has to be the same way for any subsequent surgeries. You'll have to prepare your doctors ahead of time and the anesthesiologist the day of any other surgery you have.

    For my upcoming lumbar fusion (L3-S1) on Feb 3rd I am having a discussion with my pain doctor this week. I want him to be "on call" for any pain issues while I'm in the hospital. He and my surgeon have already created an open dialogue so they'll call each other if needed while I'm in the hospital. I also plan to have a discussion with the surgeon's PA the week before my surgery and with the anesthesiologist the day of the surgery. I'm hoping that by laying it all out on the table I can ward of some of the stuff you unfortunately went through and/or be able to get my surgeon and my PM doc talking as needed during my anticipated hospital stay.

    I'm also giving my husband the list of my pain medications and the numbers to the doctors in case he has to intervene with the hospital staff "after hours". My PM doc did say that one of the meds I'm on (Opana ER) is not well known in hospitals so he said the minute I am off of IV pain meds that I should present the bottle of Opana ER to the floor staff and have them initiate me using it immediately.
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    Last edited by SpineAZ; 01-05-2010 at 07:23 PM.

     
    Old 01-05-2010, 07:53 PM   #6
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    Re: Pain Management for Chronic Pain Patients....not fair!

    I agree that you do NOT have to suffer. The problem is that the regular docs are not used to prescribing the doses that it takes to handle pain in patients on regular pain meds. My docs will consult with my pain doc if I am in the hospital and the time I was admitted to a hospital that was out of town my doc had a pain management consult from the hospital.

    I have been very lucky, when I am admitted, I am admitted with all the meds I take on a daily basis so they give me my regular LA and BT meds. Then in addition they hook me up to a PCA. I can even have boluses if necessary. One time I was admitted late at night through the ER and got a doc on call. He admitted me with none of my meds and 2mg Dilaudid every 6 hours. I would have laughed if I wasn't in SO much pain. My hubby called the doc even though it was like 2 in the morning and with the help of a wonderful nurse, got it straightened out in about an hour. I hated having to raise a fuss, but I was not going to suffer.

    I'm glad you are doing well! Next time get it worked out before you go in and you will feel so much better!!

    Melyssa

     
    Old 01-06-2010, 12:30 AM   #7
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    Re: Pain Management for Chronic Pain Patients....not fair!

    ^
    Boxerluver brings up a good point! I think that's the important thing to do - make sure there is communication between your pain specialist and the Doctor doing the surgery. This will ensure that the additional pain from the procedure is taken into consideration and your pain specialist will be able to communicate to the Doctor how much to increase your pain meds post surgery and during the hospital stay, and at home. etc.

    It's just too bad that Doctors don't realize that all pain needs should be considered and not just think existing doses will cover it!

    ~ Fiona Jo
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    Old 01-06-2010, 08:58 AM   #8
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    Re: Pain Management for Chronic Pain Patients....not fair!

    A similar situation just happened to me a few weeks ago when I had gallbladder surgery. I told my pm doctor that I was having surgery so she did give me an xtra rx for when I got home from the hospital. The problem was IN the hospital!! During my pre-op I gave them the list of meds I take on a daily basis and asked if I will be given my meds during my stay of just one day/night, they said "yes, as long as they have the list of meds at pre-op". Well, that NEVER happened!!! Right after surgery I was in agonizing pain and they did give me pain meds thru the IV but once I got out of recovery and into a room, I asked for my meds. They said that there was nothing on my file that shows I take any meds! Are you kidding me???!!! I was ****** and about to cry since I was promises I would be taken care of. All they gave me for pain was darvocet, I normally have a pain patch and percocet and Lexapro for anxiety. I had to go about 2 days without my normal meds! When I finally got to see the doctor and asked him why arent my meds listed, he said that he took them off the list since I was going home the next day!! That was not his call to do so!!!! I told him this AND also the fact that what was the point in giving my list of meds at pre-op and getting a promise from them that I'd get my meds when he decided to erase off my chart!! That was NOT his decision nor did he even consult with me that he was doing this!! I wake from surgery and no one even knows what the hell I'm talking about when I tell them I take percoet for pain. Meanwhile the person in the bed next to me in the same room as me was getting percs for pain but I got darvocet!! Believe me, this doctor is going to get a complaint letter!!!!

     
    Old 01-06-2010, 01:02 PM   #9
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    Re: Pain Management for Chronic Pain Patients....not fair!

    This is what scares me....

    The first surgery, I told all my doctors ahead of time of what I was taking. They had them all in my records. I had a HUGE discussion with my surgeon about needing extra pain meds. He told me a pain pump would be available if i needed it. I said i wanted it no matter what. Guess what....I woke up and NO pump. It took several hours to get the pump. Then several more hours to get it working somewhat. I was still in a lot of pain at the end of the day. HOWEVER, they did try and help me. They had the hospital pain specialist come in my room along with the pharmacist. The pharmacist told me that they did not have my Kadian pills in the hospital. I brought them along and she was able to take them and administer them to me ONLY because the word "Kadian" was printed on the pill. If it hadn't then I would not have gotten my normal daily pain pill. Oh, they refused to give me my Zoloft and Trazadone, which I take daily and was in my records. I still have no idea why they would not let me have these.

    So, even though I had the discussions, I took all the necessary precautions....I still was left in pain. I was basically told that they were giving me high dose of morphine and could not give me anymore. They said my pain tolerance or whatever is very high and it would be for the rest of my life.

    So...this is why I am so scared for the future. If they could not control my pain for a procedure that is not suppose to be all that painful (and it was!), then what will happen when I do have a very painful procedure done?

    Jdsun

     
    Old 01-06-2010, 07:43 PM   #10
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    Re: Pain Management for Chronic Pain Patients....not fair!

    Hello Fellow CPers,
    I dropped the ball when I had the joint replacement surgery. I made some mistakes and learned some things that will come in handy for the next time. Perhaps some of you can learn from my experience and not have to suffer the way I did.
    I thought I had things covered as I talked with my surgeon, the folks at pre-op, the chief resident and the folks in same day surgery at the hospital. But... as I noted in yesterday's post I did not get my regular meds, did not get anything above and beyond for my post-op pain for MAJOR surgery (bilateral joint replacement of TMJ).
    I thought about taking my meds with me and keeping them in my overnight bag, but I was assured by two people at the hospital that they'd give me my meds.
    One of the other problems that happened that weekend was that it was Parents' Weekend at my daughters college. My daughter has Asperger Syndrome and needs as much support as she can get. Hence, my husband and I decided that he needed to be with her after my sugery (my surgery was on a Friday).
    So... what would I have done differently. 1. I would have taken my meds in my overnight bag, and quietly taken them myself. 2. I would have made sure that my husband had a list of all of my meds, and I'd instruct him to talk with the hospital staff and go to bat for me if I wasn't getting my meds. 3. I'd be sure that my Pain Specialist and Surgeon communicated with one another. I'd do what I could to either get something in writing from my pain specialist as to my meds, or I'd have them communicate by phone. One of my problems was that the doctors were 75 miles apart and at different hospitals.
    Hmmm What else? Please take my mistakes, learn something and use the tools to get the relief that you need.
    Peggy

     
    Old 01-06-2010, 07:55 PM   #11
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    Re: Pain Management for Chronic Pain Patients....not fair!

    Peggy:

    All of your suggestions are good. I'll be bringing my meds with me so the nursing staff can access them or I can access them if they aren't on track to give me adequate pain relief. This time I'm having surgery at a large hospital but the last two times were at a small private surgical specialty hospital. The advantage there is they ask you to bring your medications as their pharmacy supply can be limited especially if you are on a specialty med or special dose!
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    Old 01-06-2010, 08:11 PM   #12
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    Re: Pain Management for Chronic Pain Patients....not fair!

    Quote:
    Originally Posted by Pegala View Post
    Hello Fellow CPers,
    I thought about taking my meds with me and keeping them in my overnight bag, but I was assured by two people at the hospital that they'd give me my meds.
    1. I would have taken my meds in my overnight bag, and quietly taken them myself.
    I actually DID do this but didn't mention it in my post before, didn't want to appear like anything. I was in such agony from my surgery that I had my husband bring them when he came to visit me. He thought I was being ridiculous and just talk to the nurse but told him they won't give me anything that's not in my chart. So reluctantly he did and I snuck them. I kept them in my overnight bag and had it on my bed with me in case I needed some medication in the night, which I did. If it weren't for me doing this I would not had made it at all!!!

    It may of been wrong but the nerve of the dr taking it off my chart, I take these meds for a reason!!!!

     
    Old 01-07-2010, 07:08 AM   #13
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    Re: Pain Management for Chronic Pain Patients....not fair!

    If you bring your own medications to the hospital, do not tell the nurses! They will take them away. I was told it was hospital policy that they had to. Again, in my situation, the pharmacist was only able to give me the Kadian that I had brought with me BECAUSE it had the word "Kadian" printed right on the pill. They need to be able to identify the pill is actually your prescribed medication. AND...she confiscated the pills and the nurses had to adminster them to me. I thought it was ridiculous that I was not able to give myself my own daily medication. I also brought my other meds with me, but I was NOT allowed to take them. The pharmacist who was really nice, did not confiscate them, but told me if she saw them again, she would have to. I didn't want to get in trouble, so I put them in my overnight bag and didn't take any. As a a result, I did not sleep for 2 nights. (probably from not taking my nightly Trazadone and my daily Zoloft).

    I just don't understand why I was not given these medications? They were in my chart. They knew I took them. Why could I not have them? Probably because my surgeon did not specifically write the orders to take them. What if I had been on a life-threatening medication? I just don't get it. So I suffered in the hospital in PAIN and other withdrawals from not having my ohter meds.

    Jdsun

     
    Old 01-07-2010, 10:49 AM   #14
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    Re: Pain Management for Chronic Pain Patients....not fair!

    thru six surgeries i have had to have since 2001, i have had the good the bad and the ugly occur at certain points. and i ALWAYS always bring all of my own meds that sit in my little black case that has all my stuff in it. it always sits right by ME in my bed. i have had some insane things occur during some of mine and i will never ever leave my meds at home again. some nurses are great but then you have the 'others" who think they are god and just KNOW what meds they think you need? its pretty sick to withold ANYONES regular meds for things like depression/other mental health issues and the anti S meds some take for pain when they can have a serious impact on any patient who does not just get them?

    but the most important thing i have found is seriously finding a good like ortho surgeon like i happened upon kinda just by referral from my physiatrist that actually has a freaking clue about chronic pain, and in my case RSD and spinal cord injury. i LOVE this man. he has done three surgeries on me and since we had a freaking disaster at the hosp caused by one insane nurse who refused to aknowledge HIS direct orders written on a sheet of typing paper for extra valium availiable always since my spasticity kicks in horribly when i am off my feet and cannot dissipate bulit up energy. she refused to actually give me the desperately needed valium despite the fact that my just operated on knee that had twelve inner stitches in it that i knew were tearing, was very violently snapping back and forth(it was insane what that knee did) i could have just KILLED that witch. she walked out on me and left me like that til my midnight nurse came in and absolutely freaked when she saw what that knee was doing and ran out of my room and got the dang valium. but by then it was way too late. we ended up needing another surgery to FIX what this stupid alleged nurse actually did to me only 19 days after the first? this NEVER ever would have happened if she had just done her freaking job. it made me sick, and scared me since this knee also has RSD.

    SO, now my ortho who was NOT happy with miss nurse at all for ruining his work(he also waived his professional fee for me for the 2nd surgery needed), and the way i was really NOT properly treated makes certain to actually call up to the floor i am going to be on and speaks with the head nurse about all my pain plans after WE discuss them. we now will actually have plan A, and plan B in place and he told me if things are not right to call the service and they would track him down. believe me this man is an amazing surgeon and also understands what sooo many clueless surgeons just don't. i still want to track down that freaking nurse tho who put me thru absolute hell for over a month. she abandoned a patient IN a full crisis, how freaking sick is that? but now we do have the right things in place and i never leave home without my meds(i just put one small strip tray of all my meds, usually 2-3 days) AND my surgeons number. i am not going thru THAT brand of hell again. and i do NOT tell any nurse i have them. they ARE mine afterall. unfortunetly we have to live and learn this crap when it should NOT ever be this way. thanks, i really did need to get that out i guess. marcia
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    Old 01-08-2010, 12:35 PM   #15
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    Re: Pain Management for Chronic Pain Patients....not fair!

    Marcia-
    OMG.....that is terrible what that nurse did to you. I really hope she got a talking to or something.

    As I stated earlier....I had surgery on Monday for a cyst that twisted my ovary. I think most of the females on this board can understand how painful that could be!!!! I remember now one of the nurses told me after I woke up.....you already take so much pain medication I am sure you won't need anything else!! ARGHHHH.

    BUT...I want to tell you about the nurse I had in the pre-op room. As she was giving me my gown to change into, she went into this speech about children and hospitals. She told me that "SHE" does not allow children in her area (even though hospital policy is ok with it, I already phoned to ask). She then goes on to tell me how she believes children will become traumatized and it will come out later in life, when they see their parents lying in a hospital bed. I asked her about her own children...this is when she tells me, she does not have children but dogs! She continues to lecture me and then instructs me to go back to the waiting room (before I change) and tell my husband to take the kids home. I tell her that my husband does not want to leave and that we live 40-45 minutes away and my surgery is only going to be 1 1/2 hours. She then tells me that it doesn't matter and she wants them to go home. So, I go to the waiting room and tell my husband this. He says...NO WAY. Too bad for that nurse, but I am not leaving you here alone. (thank you sweet husband!). So I go back and tell her that my husband wants to be close in case something is to go wrong. She then tells me that is what phones are made for. ARGHHHH. Anyway, I get dressed and she comes back to start my IV. Let me say that I have only gotten an IV in my hand a couple times BUT they have always given me a little numbing shot first. This MEAN HORRIBLE nurse tells me that she doesn't believe in using that and likes to give them in one big OUCHIE (her words). So she jams the big needle onto the top of my hand it it HURT like you would not believe! It right up until I was going off to sleep. As soon as they started putting the sleeping meds into my IV, my hand hurt sooo bad that I was holding my breath from the pain. They had to keep reminding me to breath and told me they were sorry the IV was hurting so much. ARGHHH.

    Anyway, just wanted to share my story of a VERY mean nurse.

    Jdsun

     
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