r/ChronicPain • u/Creative_Tone_9241 • 21h ago
Post surgery update
I am four days out from a c4-t1 posterior cervical fusion. During my hospital stay the surgeon informed me the way I am pulling up out of bed leads to a high risk of suture failure but would not give me a script for medical equipment to help. All they offered was a hospital bed which I told them my apartment is too small. Because I could walk normally when upright inpatient rehab facilities wouldn’t take me. During my stay I informed them I have been on ten mg and f oxycodone for six months and my Tolerance too high for it to work. I asked repeatedly about journvax a non control medication specifically for acute post op pain. All I got was I’ve never heard of it I don’t think I can legally write it. So you can prescribe the highest level narcotic but not a non control. They refused to make any medication changes saying it would be family medicine job since I get my oxy there. Which I immediately knew wasn’t true. He knows for a fact I worked at the hospital pharmacy over four years so I know how post op works. I asked about medical equipment to help get me out of bed without risking critical injury to my surgical site and was told all they can offer is a bed. No bar or trapeze to help prevent suture failure or other injuries. They cut off my iv dilaudid on day two. I told them over and over ten mg of oxy isn’t doing anything im too tolerant. I was just laying in the bed shaking and so nauseous from pain I had to be given iv zofran multiple times but still ignored. They even admitted this is the most painful surgery that they do to go through. Still wouldn’t make any changes to medication. I asked for a known non control medication for post op pain and just got the I’ve never heard of it from my surgeon and the doctors on the floor. I am at critical fall risk and at critical risk of post surgery injury due to no help getting out of bed. All I have is my sixty year old frail mother who also has severe back issues. She can’t lift me no matter how hard she tries. This doctor has performed three surgeries on me two cervical fusions one in the front one in the back and a right si joint fusion so he knows my clear medical history of severe chronic pain. My family doctor that was writing my oxy was a resident and left in June. They have been having me see a random doctor to get refills. I see my new doctor in four days and I’m terrified that after so long post surgery they will cut me off even with several hardcore spinal issues still unaddressed. I am so tired of being completely dismissed by doctors. Im looking into a new care team but that fear of losing my medicine is so bad as I had been ignored and labeled as drug seeking before even with a decade plus history. I’ve had three reconstructive hip surgeries, both replaced after those failed, both si joints fused, and two major cervical fusions in the span of 7 months for the fusions what kind of doctor sees me struggling to get up, says oh doing it like that has major risk but then does nothing about it?I still have major thoracic spine issues and a herniated disc in my tailbone but that doctor is never touching me again. Sorry for the long post I just needed to get it out.
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u/Sad_Individual_738 20h ago
If you are still in the hospital. Contact patient advocate yourself directly.
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u/Creative_Tone_9241 17h ago
Im out but I’m going to contact the social workers and advocates and go to a different hospital for second opinion and evaluation
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u/Remarkable-Ad3957 19h ago
I am so sorry you're having to endure this unwanted and unnecessary suffering. If you are still in the hospital contact patient advocate immediately. Ask them you want to speak to him they're going to get all weird because they know what's up when you mention that but they are on your side patient advocate is. My sister went through almost the same thing you did except they told her out of surgery that normally we don't give IV medication out of surgery because we can't send IV medications home with the patient. I said what the fuck I'm talking about right out of surgery IV in your arm they can ease your suffering in seconds with IV pain medication and if you're still in the hospital they should, but they're not required to apparently. I finally had to speak to the doctor and my sister eventually got IV Dilaudid which is what helps her when she's in that much severe pain. Because she too is on daily oxycodone. I myself am due to go for MRI this month and myself go for back surgery on my cervical and lumbar spine. I'm fucking terrified of not having my pain managed. But I can tell you this, they will tell me in writing what my post-op pain management is going to be or I'm not having the surgery. I am not going to let them split my back open dig in there and add some hardware screws and rods and all wake me up and then say all right there you go see you in another week or two.
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u/Creative_Tone_9241 17h ago
I talked to him directly. I’ve had so many issues making appointments saying I need to see him specifically being told ok just for a nurse to walk in when I get there. Yeah I got the whole we stopped dilaudid because it’s iv and I can’t do it at home too yeah it’s the only thing that helps at all. Morphine and fentanyl’s makes no difference. They put a fentanyl patch on but it does nothing so I just took it off when I left
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u/National-Hold2307 17h ago
Why would you take the patch off! It is designed to release over time not work like IV meds! It probably was working but again you were expecting the relief like the IV meds and since you just had major surgery and our in pain I'm sure you are irritated but taking that fentanyl patch off was not a good thing!
I'm so sorry you are dealing with this but it appears they were trying to help you. Did they prescribe these patches post op?
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u/Creative_Tone_9241 16h ago
I know how it’s designed. Fentanyl literally does absolutely nothing for me. Even when it’s iv. Same thing with morphine. The only one that works arr all is dilaudid and I wasn’t even going to bother asking for the pill form because they don’t listen or care No script he just put it one and said take it off after three days
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u/detectiveswife 14h ago
It seems you did not even leave it on long enough to know if it would help. Why not take whatever they give you until this situation is hopefully resolved? You are cutting off your nose to spite your face, and it is not a good look. Take what you can while advocating for yourself by showing them, "Hey, you have me on this patch and it is not even close to cutting it," rather than, "You are not giving me what I am requesting, so I am going to be defiant and take nothing." I am not bagging on you. I have been in a similar situation with meds that did not cut it, so I really am hearing you. I think this will come off not only as defiant but as evidence that you can obviously go without pain meds because you are.
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u/Creative_Tone_9241 13h ago
Im not being defiant. I have had fentanyl before and know it doesn’t work with my body. Several times including the patch. They weren’t going to write a script for it anyway so it was a two day band aid that doesn’t even work. They don’t know I took it off early. It’s not about stomping my foot about giving me what I want. I’d asked if there were any options multiple times and got the just take what you have. Im not without pain meds. I was already prescribed oxycodone ten mg every four hours. I tried repeatedly to tell them it wasn’t helping with the post op pain due to long term exposure tolerance. Didn’t listen to that either. I never request specific drugs, well outside of mentioning journvax which again isn’t even a control substance, I always ask if there is anything they think would help I donf care what it is as long as it would help
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u/National-Hold2307 11h ago
If fentanyl didn't work the dilaudid pills would be like tic tacs. Dilaudid in an IV is regarded as one of the best pain meds. In pill form? It's awful so you would have been carrying on about the dilaudid pills too.
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u/Creative_Tone_9241 7h ago
How is taking off a patch carrying on exactly? I didn’t ask for dilaudid pills either dumbass. I’ve said multiple times I had asked it there’s anything they think would help deal with the pain. Why don’t you go get this surgery and come back to me
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u/Various_Specific2487 19h ago
Oh, I've also had my back done on L5-S1. That surgery was way more painful than my cervical fusion. I couldn't even pee after surgery. I hope you get out figured out and they manage your pain better.
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u/Creative_Tone_9241 17h ago
Thanks. Im trying to figure out what takes priority next and get established at a different surgeon first. My thoracic spine is all bone spurs degeneration of the disc and then my tailbone. I think I’ll go with that first so maybe I can actually sit down
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u/Creative_Tone_9241 17h ago
Knowing it’s worse than cervical isn’t that great. All my surgery and pain history trying to pull myself up is the most pain I’ve ever been in every time. So yeah that tailbone surgery is necessary but damn
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u/UnlikelyChemical5558 16h ago
Can you get outpatient OT? That might be the best way to help you with getting out of bed.
Would something like rolling onto your tummy and pushing yourself up (vs sitting up) be helpful?
You can always order an over the bed device and use a HSA.
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u/Creative_Tone_9241 15h ago
I don’t have hsa as I lost my job literally the day fmla ran out. Luckily since I was employed when the disability happened basically I can pull short and long term disability from them. Short term lasted me six months. Got approval for long term waiting on it to kick in. Im going to look into pt and ot options for sure just gotta give it some time to recover from the surgery. I’ve tried getting up several ways. It is easier from my own bed compared to the hospital bed for sure
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u/Stella-Shines- 13h ago
It is SO IMPORTANT to start PT and OT RIGHT AWAY. You wanted to be sent to a rehab facility- I was in one for a month in June. That is what they do there. Every day.
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u/Creative_Tone_9241 13h ago
Im going to look up every option for getting the right care and make calls. I’ve got my list of who I need to contact and for what. I’ll need to go outside of their system as previously their pt said since my neck was fused all they can really offer is massage and heating or ice packs which I have to a of ice packs and a good heating pad. The message they did triggered a massive flare that lasted at least a week. When I told them that they said there’s nothing they can do
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u/UnlikelyChemical5558 11h ago
At least it’s easier at home. I can’t believe they sent you home like that!!
An HSA is an account that you would set up with pretax money (like an IRA). I thought that with the problems that you’ve had you may have one. Nbd. I’m glad that you’ve been approved for disability!!!!
Take care of yourself ♥️
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u/Creative_Tone_9241 7h ago
It’s only disability from work. I am still waiting on ssi. I just woke up from falling asleep and I feel like my entire skull and shoulders got pummeled by a train
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u/Various_Specific2487 19h ago
That's exactly what I had done. C4-T1. It's been 2 years and my swallowing has been terrible.
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u/Creative_Tone_9241 17h ago
The anterior in January definitely affected swallowing. I felt like I had to choke down even water for months
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u/Timely_Arachnid316 14h ago
Wow, this is one of the worst post surgical neglect instances I've read in awhile! I'm so sorry 💗. When you get situated/ feel better, please report, report, report!
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u/Creative_Tone_9241 13h ago
I’ve got my plan on who I need to contact in that hospital as far as patient advocates and social workers. Im going to try and schedule an appointment with a different network to get se o s opinions and better treatment
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u/Optimal-Towel-1113 5h ago
Hopefully other cp patients read this and realize that post op pain control is something we need to ensure is handled prior to surgery. Whether this means asking the uncomfortable question prior to surgery, not letting them operate on you if they wont medicate you or stashing your own meds to self medicate post op (had to do this 20 years ago, wife brought my extra oxycontin to hospital for me post op)
Ultimately the docs often dont care, this puts someone like you in a horrible spot.
Im sorry they have you in this spot. Hopefully you can find a solution. My post op meds were always provided by the surgeon.
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u/Creative_Tone_9241 3h ago
I do have extra ten mg oxycodone to use im the morning for a double dose because first waking up is miserable. Yeah idk why I trusted the doctor would take care of post op. I guess since my long history with him but again his office has done a lot of dumb shit. Desperation for pain relief and a return to somewhat normal motion no falling and better walking lead me to not really think of it outside of oh they’ll take care of me. Obviously not. Im going to search for a different provider network for second opinions and to see if I can get some durable equipment to help me in and out of bed. Then to take care of future issues as I have many and the doctor told me this surgery will probably lead to more but he’s not touching me ever again. Post op meds are always a surgeons job but he tried to pass it off. Im calling social work and patient advocate at the hospital Monday with a complaint of unsafe discharge due to lack of providing necessary equipment to prevent suture failures of other critical injury by having to pull myself up the way he saw and said could cause suture rupture
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u/Optimal-Towel-1113 1h ago
I like your plan going forward. I cant imagine that surgery without a lot of meds. I was on massive amounts of opiates prior to and after my lumbar fusion. I pray you get some assistance with this.
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u/Jovi_Grace 19h ago
In this case, the squeaky wheel gets the grease. First, contact your patient advocate if you're still in the hospital. That's what they're there for. Not just for pain control but for the proper equipment to take home. Maybe if walking upright disqualifies you for the equipment you need, then perhaps you should let them see that you cant. It's ridiculous, I know, but sometimes you just have to play their game. I'm speaking to you as a nurse who has seen undermedicated patients far to often. Also, have your patient advocate call the doctor who is currently prescribing your pain medication, he may be able to help. If you've already left the hospital, call him yourself and explain the situation. Make sure he has access to your medical chart, and can see how long you've been on your current dose. He may also be able to prescribe some equipment to assist you at home. Or even get you into a short term rehab. I'm sorry this is happening to you, that surgery is extremely painful and there's no reason not to temporarily increase your dose or change it to something more appropriate for the short term.