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Avatar universal

I'm Terrified, need more surgery but scared of the pain.

I have to have spinal surgery again (my 4th one), to take out all the instrumentation and put new ones and MORE back in. In the past I always woke up to the pain writhing and hyperventilating because they could not control it well. The only time I remember the pain being controlled was the first time because I was naive to pain meds. Every time after I have explained to everyone involved about my meds and they have always promised me they would be able to help me control it. I understand they can't take it all away, as we all know, but they were always afraid to give me more than the highest dose they would give a normal person not used to narcotics. It has been 9 years since I had a spinal surgery but only 3 1/2 since a c/section. In that time you would think the medical professionals would have learned from the past and how to deal with chronic pain patients. Also, in the past, they never had a pain management doctor in the hospital to help me, but consulted with one before, to no avail. This time however, my spinal surgeon has PROMISED me, yet again, that there will be a pain management doctor in the hospital to help him help me with the amount of pain meds to give me after the surgery. I asked my PM doctor to consult with my surgeon, and he has, but he does not go to the hospitals so my surgeon tells me he will use the suggestions from the in-hospital PM doctor instead. I asked if I would be able to consult with the in-house PM doctor BEFORE the surgery and I was told no, that there would be no need to, and my surgeon has dealt with CP patients and they did okay after the surgery. They wait until after the surgery to see what you need. Has anyone ever had to do this and does this sound how it should be done. I don't know, I would feel a lot more comfortable talking with the PM before to make sure that I see the understanding in their eyes and to give me a game plan and what to expect. What if I am so incapacitated I can't even communicate with them afterwards?

Can anyone tell me what you went through if you had a surgery, and how the pain was afterwards, and if they did do something to make sure you did not want to kill yourself from the awful pain.

I have to have bone harvested and more fusions done to my spine because L5 is not fused to S1 and is still slipping forward pulling my spinal cord with it. They are going to try to reduce it (pull it back into alignment), but even that has it's risks. I don't want to become paralized by my vertebrae slipping forward and cutting off my spinal cord at the L5-S1 level so I have to have this surgery. This is the 3rd fusion attempt. The first one was in '98, I was 22, the second one in '01. They have fused it from the front the first time, and the back with instrumentation the 2nd fusion attempt. I am so scared, not only from the pain perspective, but also because the first time they cut a blood vessel in my stomach and I almost blead out. They could not find where all the blood was coming from, but finally did and reinfused it to me to save my life. My brother told me when he came to see me after the surgery that I was so white that I looked dead. He had to run out because he could not stand to see me that way. I had no idea at the time that anything like that had happened. With all the scar tissue it seems like something like that could happen again, or worse. I guess I am just so scared of everything, that is why I have put this off for as long as I can, (5 years or more). I am too scared of the pain after the surgery, but now I don't have a choice. My surgeon told me this is the last chance I get to save my spine and hopefully fix it right to where I can function again with less pain if we can get it to fuse.
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547368 tn?1440541785
I hear you. And I understand your fear. It has been some time since I last had surgery but when I did I had been on a lot of narcotics for the previous 18 months and the "usual" post-op pain medications were not effective.

I had to do a lot of yelling (and unfortunately a bit of swearing) and loud complaining to obtain pain meds out of the "norm." Finally they were able to obtain an order for an injection of a large dose of dilaudid. It did relieve my pain significantly.

When I have a procedure or am in the hospital for pain related issues the normal morphine does nothing for me. I demand demerol, as in the past it has been the only drug that has eased some of my pain. My PCP now knows this and I no longer have to ask her to order it for me.

Do you know what works for you? If so I would ask that you have an order for the narcotic (post-op) placed on your admission orders. Upon admission ask what post-op medications have been ordered. After reviewing the medications if you are not satisfied with the post-op orders request changes that you think are necessary. It is important that you enter surgery with as little anxiety as possible. It will help in all aspects of the procedure and post-op recovery.  

You obviously require this surgery and it is as to your benefit to be as relaxed about it as possible. If your trust the surgeon it should make it easier. If you do not trust him than I suggest that you search out another one before you get any further along in this process. Try to remember that just because there was an incident in your last surgery doesn't mean there will be another incident. Early on during one of my 20+ surgeries (following a MVA) I awoke seconds prior to and during the incision process. You can imagine my fear when I had additional surgeries. Each following anesthesiologist promised me that it would not happen again and it didn't. So please try to put what happened behind you and think as positive as possible, again for your benefit.

We will be thinking about you. Please take care and hang in there. I will look forward to your continued updates. Tuck  
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Avatar universal
Thanks Nick. I think I know what you are thinking regarding the meds. after surgery. I'm thinking they will want to go down as fast as they can. I don't know, they did not tell me. As far as us having a right to pain relief after surgery, try telling that to the Resident OB when I had my c-section. They had me on a pca pump and the most they would give me of morphine was 1mg. every 10 minutes when I pushed the button. Once they gave me a bolus of 5mg. but that was only allowed once every 12 hours. Needless to say it was not working and I was screaming at them. I was so emberassed after it was all over. My family was there and I was acting like a mad woman. They even had the head of the department to come and tell me there was nothing more they could do for me while I was hyperventilating in pain. I was at the maximum that they give a "normal" person. After 12 hours I told them to take the pump away. It was not giving me any relief anyway and I could not go to the NICU to see my daughter with it. The pain of a c-section is nothing compared to that of a spine surgery. It just shocks you when it hits you so suddenly. Once I got up to walk around it did get better, but the first 24 hours are always the worst.
Thank you for everything you said and I know I should not worry so much. This time it does seem like they have their ducks in a row, but I am still scared because of my experience. I just wanted to know if anyone else has ever gone through this and had a good outcome.
Helpful - 0
Avatar universal
I don't blame you for not being able to 'un-worry' regarding the surgery. You have already had a lot of operations on your back for your age. What are the real goals of continued operations? Is there any danger that if not operated on things could go wrong?
I keep writing stuff then deleting it coz the last thing i want to do is make you feel more anxious. The only positive thing i can think of is to keep your normal PM doc's number on speed dial on your cell phone just in case. It does seem weird that they want to manage your pain for so long after the op. I can only think of one reason why they'd do that (and i don't want to write it).
If bone harvesting is as painful as they say (and i'll admit it doesn't sound all that fun) then i'm pretty darn sure they will take pain relief seriously.
You seem to not trust them on the pain management issue because of past experience. Just remember that you definately (no question about it) have a right to pain relief that is suitable, according to YOUR pain levels - not thier 'comfort' factor. scream about it if and when neccessary, and scream LOUD!!! no need to be shy, especially post op.
Best of luck,
hope it goes PERFECTLY.
let us know
regards - Nick
Helpful - 0
Avatar universal
I am having the surgery in two weeks. I have been talking to my PM doctor about this a lot over the last two years and have been putting it off as much as I can because of what I have gone through in the past with surgeries, each one being worse than the one before. My PM doctor works in the same office to see CP patients as does the surgeon twice a week. I had an appointment with my surgeon yesterday and he told me he would be taking over prescribing my pain meds for a few months after the surgery and he would consult with the other PM doctor he works with through the hospital. I don't understand why he prefers to do it this way. I have never met this other PM doctor and don't know why I will not be able to meet her before the surgery. Apperantly this is how it is done through this surgeon. My PM doctor is very understanding and understands my fears and says he will do anything he can to help me. He said he would talk to the surgeon before the surgery, but this has been promised to me in the past by other doctors to no avail.
I know I am making it worse by worrying about it. I have never been the kind of person to get anxious about things, but this is really starting to affect me. I can't sleep at night because my mind keeps racing all day and night and now I feel like my heart starts beating really fast and hard and  I feel like I can't sit still in my own skin. It is a very weird feeling to have anxiety. I have knots in my neck causing my neck to hurt and started getting headaches because of the muscle strain. I am guessing all this IS because I am anxious about the post-op pain and the fear of not getting any pain relief just scares me stiff. I just know I don't want to go through what I have been through in the past, and my surgeon tells me this will be the most painful surgery I have ever had because of the bone harvesting and the big screws(bolts) they have to put through the length of my pelvis to hold L5 to the sacrum and pelvis. They are also putting screws in L5 and also at S1 and a rod to connect them to try to re-fuse it again, for the 3rd time. In total I will have two screws in L5, two screws in S1 with a rod connecting them, and two huge bolts(that is what he called them) from L5 through the sacrum into the pelvic bone longer than half a foot ( the bolts are only supposed to be in temporary until the fusion takes place and will be removed).  The previous attempts keep failing to fuse. The only place that did fuse properly is at L4-L5 and they will take the screws out of the L4 vertebrae, as it is also causing me pain just from the instruments. They did a block of the instruments with lidocaine and it helped with the pain so they said the screws need to come out after being there for 9 years. The surgeon told me the most painful part of it is the harvesting of the bone from my pelvis and I will be hating him because it is so painful. I have never had bone harvested so I don't know how bad that hurts. Others have also told me that is the most painful part and they still have pain from it to this day. I have SO much to look forward to!!
I know people will tell me not to worry myself about it, but it's really hard not to. Like I said, I'm not one to be a worry-wart, but this is all consuming. I can't help but TO worry because I know what is to come and I can only go from past experiences, and that scares the **** out of me. I asked the surgeon if they could just sedate me for the first 24 hours or so after the surgery and he said that might be an option. My PM doctor also told me they could put me in an ICU and just watch my vitals and give me as much pain medicine as my vitals will tolerated until I got the relief I needed. This sounds all good to me but in reality will they really do this? Why wouldn't they do this in the past for me? I just know I have had promises made to me in the past that I had nothing to worry about and found myself wishing to be dead (not literally) than to have to go through that much pain.
Audrea
Helpful - 0
Avatar universal
I'm so sorry that ur as scared as you are. I probably can't do much to help u with that. I wouldn't worry too much about the post op pain if I were you. You will be in a good position after the op to bargain with your dr's regarding your pain levels (so long as u make it clear to everyone that you are concerned about the transition from acute post-op pain to your normal chronic pain I don't think there's any real reason why your concerns would be ignored).
I would try not to get in a state over it as they may think you are more worried about medication than the actual surgery (which is the part that most ppl, myself included, would worry about). I have had CP for nearly twenty years and like you i am in my early 30's. I had an op about 6 years ago (unrelated to my CP issues) and I used the op (which was VERY painful) as a way to try and de-sensitize myself to my pain. I asked for (and recieved) minimal pain relief after the op (and no take home meds) because i hoped that i would then be able to live with my pain w/o taking pills.
Unfortuantely i ended up bedridden for 3 months. My chronic pain was as bad as ever. If i had my time again I would have asked for more pain relief. I was an idiot obviously. However, you don't need to do anything that dopey. How long until your operation? I would not bother too much with dr's at the hospital regarding pain relief. I would focus more on your PM doc, make sure he knows exactly when you will go into/get out of hospital. There should be no reason that he would ignore your fears and needs.
please let me know anything else that you need to talk about.
take care,
Nick.
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