Need surgery and afraid of pain being controlled

Discussion in 'Fibromyalgia Main Forum' started by shelby319, Jun 14, 2006.

  1. shelby319

    shelby319 New Member

    I know I've talked about how bad the pain is in my right shoulder and neck with the Fibro, but they did an MRI and cat scan to basically rule other problems out. But unfortunately they did find a complete tear in my rotar cuff in the shoulder along with a small benign tumor in the neck that is pinching the nerves. So I have to have surgery on both my neck and shoulder and at the moment I'm not sure if they will do both at the same time or different times. One is an ortho specialist, and the other Dr. is a neuo surgeon.

    Now onto my biggest problems...which first is the pain that I already feel and I am on oxycontin 10 mgs twice a day and lorcet for breakthrough pain. The Dr. had given me the 20 mgs of oxycontin but I found that was a little too strong where I just couldn't function normally, so I asked if we could lower it. But with the pain alone that we all feel just with the fibro is terrible and then to add the extra pain of the tear in the shoulder and the neck and needing surgery is scaring me to death.

    All of this pain and managing it now is enough, but my biggest fear right now is how do they control the pain after surgery, which we all know is going to be horrendous after you have been on pain meds for so long and I'm sure I have built up some tolerance level with them now, let alone what will happen after the surgery. The neuo surgeon also deals with fibro and has tried to be very supportive with how we feel the pain so differently than "normal" people do and how its managed differently with surgery than someone else. Is this true?

    As for right now.. and for how bad I feel, my pain is winning over the surgery part and not having it done!!! Does anyone have some imput as to calm me down, so I will go forward and have the surgery, so I am sure I will feel at least 90% better pain wise with the shoulder and neck pain?/!!! I'm terrified of any more surgery too after having so much done years ago after my car accident. I'm so afraid and full of anxiety, stress, and of course pain that I'm at my wits end and will not schedule any surgery until I find out everything I can. But I think I already know too much and thats my problem......because now I'm more afraid than ever!!

    I'm so sorry for rambling about this, and probably repeating myself here...but has anyone ever gone through rotary cuff surgery or surgery on the neck and come out feeling alot better and the pain was controlled after being on pain meds for so long already? I'm also afraid that they won't beable to put me under for the surgery enough and I'll wake up during surgery!! Now I know that probably sounds funny to you, but thats another fear of mine as you hear all kinds of terrible stories with surgery and the patients waking up because they didn't get enough anethesia or whatever.

    If anyone can help explain the controlling of pain and anything about the surgery, mostly the shoulder, I would greatly appreciate it and then maybe and that's a big maybe, have the surgery!!! I know you wonderful people here, that deal with pain meds daily, sometimes for many years, already can understand how I feel and my fears with meds and controlling the pain after surgery. This place is the only place that would understand, because we all have to deal with this terrible disease daily with pain and managing it.

    God bless you all and I hope everyone is having a somewhat sparkling day.
    Gentle hugs,
    Shelby
  2. NyroFan

    NyroFan New Member

    Shelby:

    A gal I once worked with used to be hospitalized quite a bit. She told me she carried a 'doggie bag' with her.
    If they did not put her on her usual medications for blood pressure, etc. and I believe for pain also: all she had to do was to reach into her doggie back and take the med herself.

    Not a suggestion. No it is not right to do. Yes, it is not a good policy if the nurses catch you doing something as they may be giving you things without you knowing, etc.

    nyrofan
  3. thirkmom

    thirkmom New Member

    I totallly understand your fear about the surgery. I have severe pain and take 80 mg of oxycontine twice a day with roxicodone 15 mg for break through. My biggest concern in life has been, what if I'm in an accident and they can't control my pain without supressing my breathing.

    Three years ago I underwent a gastric bypass. I explained my medications thouroughly to my Dr. and he said no problem. He could keep me as pain free as possible. When I woke up from surgery, I expected to be in pain but nothing like I was. I was on a PCA pump and it didn't even touch my pain. I was writhing in my bed for 2 days. I didn't cry because if I did I knew if I did I'd lose it. My husband was going nuts doing everything he could think of as were the nurses. My Dr. came in on the 3 rd day and admitted he didn't know what to do "They were giving me enough meds to put down a horse." He said a couple of nurses had called him crying because they felt so bad and were so frustrated. He himself finally called in a pain specialist from the University of Utah.

    The specialist came in with a calculator and asked me what I took at home. Then he got my chart and went to work. After 10 minutes of not saying a word, he looked up and said, "Well, my dear--You've just gone through a gastric bypass with virutually no pain meds. I wasn't even getting what I was taking at home. Within 1/ 2 hour I had oral medications, they turned up my PCA pump and I had 2 Fentanyl patches slapped to my back. It took about an hour, but for the first time in 3 days, I finally relaxed and started to get better. I've had 2 surgeries since then and I share this story with my Dr. and the anesthesiologist and I have not had a problems since. The anesthesiologist is a great resource because his main concern is keeping you under and pain free. If he knows what meds you have taken and for how long, it gives him something to base his medication calculations on. He said he would give recommendations to the Dr. for pain control after the surgery.

    In all 3 surgeries I have never had a problem with them being able to keep me under even with tolerance I have built up to the 80 mg. of oxy.

    I know this wasn't shoulder surgery but I hope it might help you in making your decision. You have to do what is right for you. Personally I would go for the surgery and eliminate any source of extra pain. I think in the long run it would really help.
  4. shelby319

    shelby319 New Member

    What you wrote kind of explained alot to me, but what I didn't understand was when you had talked with your anesthesiologist when you had your gastric bypass, how come they said they didn't give you any pain meds during surgery? That makes it very disturbing to say the least. This was even before your surgery, correct? I'm really glad though to find out that once they did realize it, that you were given what you needed to relieve the pain.

    I'm so sorry you had to wait though for 3 days to get the relief you so needed. And now you said you have had 2 more surgeries after that one without any problems? I don't know how long I would be put under, but that bothers me with breathing problems and of course adding more pain meds suppresses the breathing, right?

    I read your profile and I'm sorry to hear that you had to quit nursing, but you still keep up with your exams and all? I have a friend who is an rn nurse in SC and she's wonderful as far as helping me, but she still can't make the decission for me to have this surgery, only I can, unfortunately!!LOL!
    Thank you for your help, I appreciate it more than words can be written!!
    Shelby
  5. thirkmom

    thirkmom New Member

    When I had the gastric bypass, I didn't talk to the anesthesiologist about all my pain, I figured my Dr. would have clued him in. Never assume. They did give me pain meds during the surgery and they kept me under. Everyone failed to realize I was taking 80 mg. of oxycontin bid at home. (My Dr. apparently didn't understand our conversation.) So, after surgery they were giving me the PCA pump and something through my IV. They weren't giving me my Oxycontin so I was losing ground. Once they discovered that, then I got my Oxy and then the increase on my pump dose and the Fentanyl patches on top of that. Once they figured out the problem then my life got much better.

    I hope this clarifies things a little. LuAnn
  6. Keeshondmom

    Keeshondmom New Member

    I would urge you to go ahead and have the surgery performed as soon as possible, as I hesitated and have lost most of the usefullness of my arm because the tear was so old that my bones are now unstable in the shoulder. The good news is that a great deal of acute and chronic pain is gone.

    The pain pump you will go home with for 3 to 4 days will really help as well as good ole vicodyne.

    I too was worried about the pain level after surgery and I can tell you for that I did go into quite a flare afterwards for several months.

    However, I did my reserch and made sure I had a Physical Therapist whose specialty is FM and the 3 x per week I went to him had a huge benefit in not only pain relief but helping me understand FM like I never have before.

    I have had upteen surgeries and this is the only one that scared me to the core!! I cried every day and had so many panic attacks before surgery it was unbeliveable, so I know just exactly where you are.

    One of the issues that I dreaded most is that I have severe reactions to general anestitic and must have blocks and a block for shoulder surgery effects your ability to breath for several hours. This completely terriefied to have to surrender all to the professionals.

    What I did learn and a suggestion for you, if you are having anxiety attacks before hand is to ask your Doctor for a zanax rx for the first week after surgey. This made my healing time far easier to take.



  7. shelby319

    shelby319 New Member

    You have no idea how helpful all of you have been in my decission to go forward with the surgery!! And to you Keeshondmom, you completely understand with the panic attacks and all, as I'm way up there on the scale of having them since childhood!!! And your so right about the panic attacks right now and feeling very depressed too. This could be why I am so depressed right now and didn't realize it until I read your post!! Thank you for that!!!

    This board never stops amazing me with the amount of support everyone gives!! I am so thankful for finding this site and I hope I can give alot more later on to help others in the same position as we are in. But first I have to learn so much more about this terrible disease, but you are all making it so much easier for me with the amount of information I receive daily!!

    Keeshondmom, as you explained, you waited too long for your surgery, but are you well enough now so you don't need as much pain meds as you did, I'm sure before the surgery? I so wish you are alot better though?//!! I am also so sensitive to many medications and antibotics and I think even some anesthesia, that this is also a big concern for me. But you hit everything right on about how I feel with the pain, fear, anxious, panic attacks and maybe the depression I'm having too. Also I think the breathing part is bothering me after being under the anesthesia for so long is a big fear too, and making sure everything is fine and I do wake up!! I know it sounds kind of silly to "normal" people, but not on this board!!

    I know I can't go much longer without having this surgery and mostly today as I was trying to get up out of bed and the pain for some reason, that I felt all night trying to sleep, really put me into making that call and getting it done now, along with your help. I can't live like this any longer and with the fibro added to it only intensifies the pain with the shoulder I'm sure. I'm on the oxycontin 10 mgs twice a day and lorcet for breakthrough pain, and its still not touching it. I do have the 20 mgs of oxy, but I don't like to take it and I get a little sick to the tummy too, so I use that very sparingly. So, hopefully I'm not on too much pain meds to make that much of a difference when it comes to them controlling the pain afterwards. May I ask if you have to take alot of pain meds to control your pain? And that you do feel alot better now that you did go ahead and have the surgery and are happy that you did it?

    There's so much more I want to ask, but I'm trying to keep it as short as I can, so you don't have to read alot at one time. But I do want to thank all of you for your great help and support and answering my questions!!!
    God bless all of you!!
    Hugs,
    Shelby