Texas4Life

Hey Straydog, I've had a couple of tough weeks, that's why I haven't been online. I don't know if it was a violent reaction to the meds or something was going around, but I was in the bathroom on and off (mostly on) for 9-10 hours last week in the evening into the early morning hours from 7 p.m. until roughly 5 a.m. It came after eating dinner with no reactions one day and then the next day - wham! That took a few days to recover from but I wondered because of the seriousness and lengthiness of it, would it affect my healing. My doctor is apparently still on vacation and his PA's don't like to pick up the phone. Good news: I did lose even more weight. I could see my abs. Scared to eat for a few days. The swallowing issue didn't help that and I still have that problem.

Not sure if I told you that one of the contractors had to do the Heimlich maneuver on me, while he was here and I was choking on a small piece of food. Yeah, there was that incident when all the contractor work was being done. It's all done now too, btw. Some new furniture, will be arriving in July to which I will not be participating in moving or positioning. Contractors take it all in stride when they see me wearing my soft collar!

But I'm writing again because something else, far more (serious?) happened this week and wanted your take: On 2-3 different occasions, I woke up on my back and when I opened my eyes, I couldn't feel my arms -- either of them...at all. And that kind of freaked me out. Again, the surgeon is in Central Florida chilling and his PA's don't think it's there job to pickup the phone. Not sure who to reach out to. I see him again 18 July, presumably for the next round of x-rays. There is still some sleeping issues that caused me to get the surgery: when I sleep on my left side, one of my arms will go numb and the other side causes my ring and pinky finger on one/both hands to go numb. I also still have the neuropathy in my left hand/thumb. The "circular squeezing" motion of opening a door handle on most occasions is too much and I favor my right hand to do those types of things. Other times I can do, with a wince of my eyes and other times, not so bad. Still on the Gabapentin. They re-upped the oxycodone and Valium which has really helped me the last couple of weeks. The spasms in the shoulders are all but gone, it's everything else I've described.

To that end, today I was supposed to go back to work but decided to take an additional two weeks off. I'm a zombie most days and exhausted all of the time.

Is all of this "normal"?

With respect to your backup doctor: This is what I am really angry about. I feel like when I bring it up, he will bring it up them and they will say, (1) we're overworked, (2) we don't have time to answer his/their calls while doing all the other work (but they do have time to take a lunch break, which happened the day I showed up if you'll recall); (3) we thought he was going to say that he wanted more refills, which we told him we would not do (which was NOT the reason(s) why I was calling back; (4) make some other excuse.

I completed my hospital survey and I've typed up a separate dossier of my experiences as an addendum. Further, I meet with the surgeon again 18 JUL.

After calling my pain doctor and pleading for help multiple times, his PA got on the phone after I left msgs for them and said that (1) that I should've gone to a hospital and (2) what did you think we could do. Now, first when you can't feel your arms and legs, how does one go to or get to a hospital? That's some kind of dark magic that she should've shared with me and two and more darning, do you REALLY think that Dr. Susie at Po-Dunk hospital along with Dr. Casper and Dr. Jackson and Dr. Clarke are going to re-open the incision and play with/jack-up the hardware and titanium screws and equipment that my surgeon has put in there, even if I had the time to somehow explain ALL of my history with them and he's unreachable and his PA's are not returning phone calls?

Straydog, I don't see another surgeon, who may or may not be a super specialist in ACDF surgeries from Hospital B in a suburb town re-cutting me open from a surgery I had from Hospital A 4-5 weeks ago. I just don't see that. Am I wrong?

What do I want? What should have happened?

In my job, like most, I have created SOPs, Standard Operating Procedures.

This hospital, this surgeon has done hundreds of these procedures, he even knew exactly where my spasms were going to be. Why is there no documentation of what I should expect during Week 1 or from week to week? What should I reasonably expect from the decadron for the length of time I was on it? when I was off of it? What should I expect by Week 2? Week 4? Week 6? Reasonably speaking? I get everyone heals different. They partially got blurry vision right. Mine was totally wiped out, but it was close.

As a patient who has gone through this procedure, there should be some documentation that I could at during week 5 (I guess that's where I am at) and see that I should be off of meds 1 and 2 and should be experiencing mild swallowing issues. You will still have some mild gait (I bumping into everything in a house I've lived in for 25 years. I could not straight or stop feeling dizzy straydog!!!!). You will notice your eating pick-up and should approach it in this XYZ way (small bites, with lots of fluid until you can handle more food). You will notice dramatic issues with sleep. Up until last week Straydog, I have not slept hardly a wink. The drugs made me alert during the night and exhausted during the day. I was a zombie from late May until last week. I took two more weeks off just to get my bearings straight.

This is what, I feel like is not too much to ask given that this surgeon, who has SEVERAL (!!) PAs and this is Georgetown University in Washington, DC. This is no po-dunk hospital. US Senators and House members go here. POTUS's go down the road to Walter Reed, but this is seriously high-powered hospital, supposedly world re-knowned. Maybe they've been reading too many of their press clippings.

They don't have a patient portal believe it or not, at least that I know of. Am I overreacting?

Maybe it was a 24-hour bug from one of the contractors. I suppose it is possible.

I feel like I have to test the sleeping on the left side because that's where the bulk of my neuropathy was (and still is) and where my technical discussions about existing pain, will start. In other words, what initially led me to have the surgery, was -- I couldn't sleep because I was in pain. I had to sleep on my back and when I'd roll onto either shoulder, I would get excruciating pain and/or numbness. It progressively got worse up until the surgery. So if either of the of the docs ask me "how do you feel" my initial thoughts are start with: well, I can or can't sleep on one or both of my shoulders? So the ultimate test to see if the surgery is/was a success, is (for me) can I sleep....can I sleep on, especially my left shoulder without waking up and/or feeling numbness on either of limbs, that's what led the serious situation that happened last week when I was calling them and they were not calling me back.

So what I hear you saying, is that (1) they shouldn't ask me that question yet, because it's too soon as the nerves are still healing and (2) they are still regenerating. It's already been several days since that situation came up. I was awake all last night afraid to fall asleep because it might happen again. It happened before years ago when I was seeing my acupuncturist, but it was legs that time. So it was slightly different.

I've noticed the swallowing issues....still. After the Heimlich incident, I've had to SERIOUSLY change how I eat, especially since my nurse neighbor has told me that she has gone into depression (with everything nurses have gone through I can't blame her) so I have to be much careful. I still this problem. But I notice, when food or pills get stuck, now, I can bring them back up to save myself, where that day the contractor did the Heimlich one me, I couldn't bring the food back up, after trying and trying. Now, I can and I immediately drink A LOT of fluids when it happens. I seem to have real problems with fruits, particularly berries. I cannot handle blueberries and strawberries. They get caught in my throat. I ate blending them because it's not the same as eating them raw, but I may have to do that in the short term.

Yeah, I still have a lot of administrative questions for the surgeon. He gave me her business card the day I had the PA meeting. Why do that if she isn't expecting me to call her? Did he tell her that he gave me her card? Why were NO PA's picking up on her or the other PA line for weeks? I tried the other number I had too. No one picked up that line either.

My pain doctor didn't get the chance to speak with the surgeon because he left to go on vacation, right away. So he was going to start prescribing any Rx's for me until he had a chance to speak with the surgeon, which I guess I could see (??). The two still haven't talked as of this writing and apparently, won't get to speak until after 18 JUL which would be all but two months after surgery!

I guess I'm confused then about what my expectations of the surgery were. If I can't sleep on my side/shoulders, then that precludes one of the biggest reasons for having the surgery. I literally sleep when I can sleep on one of my shoulders. It's hard for me to sleep on my back because of sinus issues and apnea. So the whole idea was for me to get the surgery so I could (eventually) sleep on my left/right shoulders again. I'm unclear. That was one of THEE primary issue and cause for surgery. So there is a completely different set of conversations that need to be had with me, my pain doctor and my surgeon.

I hate my ENT honestly. I switched twice. They got their degrees, from....guess where?

When he went on vacation, he did not mention or say there was an on-call surgeon. I asked who do I call, if I have problems. He gave me that PA-Cs card who doesn't respond.

I didn't fill out the survey when it first came weeks ago because I was literally a mess. I was having medication reactions. I couldn't think straight. I was bumping into objects in my own house. I was clearly not "me". Remember what the decadron did to me? It was worse AFTER you and I talked about it. You were right: Even after I finished it, I was a freaking wreck!!! You were so right about that drug.'


Oh! the pain doctor's PA told that's what they've been giving me for years! You know...all of those facet blockers and trigger point shots? I stopped her quickly and had to raise my voice and hard check her. I never had a problem for years leaving his office. Never, not once did I have the reactions that I witnessed when I came home from the hospital and you and talked about it. That was the 1st time time in my life I witnessed those symptoms and you know what those reactions are. They are not something ever forget. They stop you cold in your tracks and wreak havoc on your body and she had the audacity to tell me, that all of the facet blockers, the ryzotomies (I can't spell the process where the literally kill the nerve) and all of the trigger points, were laced with decadron. OH HELL NO!!!! You were the one who got me through those symptoms, Straydog!!!! I never encountered those symptoms in my life. Ever. So I don't what she's talking about. Is it possible that the pain doctor injections much lower doses of decadron that do not have ANY symptoms at all because I did not ever have symptoms after getting injections in his office? What is she talking about?

When I went in to the PA meeting, he crowded me. It was almost as if it was deliberately planned to get me to hurry up and feel uncomfortable about asking questions. He was sitting in the round seat with the wheels. I was sitting in an exam room chair and he was less than two feet from me. He was very much, what you would call, in my personal space. Strategy on his part?

I brought up most of the concerns, but his "violation of my personal space" (I don't know what else to call it) made me very uncomfortable and I admit, I forgot to ask some questions that I had documented, if you recall. I meet w/ him again on 18 JUL. So we will do the (4 week x-rays) and I will let him know about what happened while he was on vacation.

Last night, I woke up @ 0222 hrs and put two ice packs back in the freezer and put on the soft collar and tried to sleep on my left side and -- no pain. So baby steps? I think you're right: I think it's still too soon, I want to make sure I'm moving in the right direction.

So, the injections MIGHT be decadron, but in much lower doses? Actually, I want to be clear: I knew when I was getting the injections, I was getting steroids. I did not know their names, but I just knew the reactions were night and day. That makes me feel better because I know how I felt when I contacted you when I first came home from the hospital and you were telling me how horrible decadron was but was confused when the PA for my pain doctor told me that that's what they were giving me, so maybe (maybe) that makes sense now.

I called my insurance the other day to ask about rehab appointments. They told me that I would be "covered" for 35 visits. What are your initial thoughts on the # of visits, generally speaking, you've seen in my cases that would be needed and "worthiness" for lack of better words of going? In other words, you made note last week you were impressed with how I had been progressing for someone whose gone through the ACDF. What should my expectations be too? Thoughts?

So he's back from vacation. Cliff notes:

I finally got fed up with the "radio silence" and contacted pre-op. She ALWAYS calls/contacts me back. Sure 'nuff, she did a few hours later and said someone (probably the surgeon would be calling you back by tomorrow). I wanted to know should I refill the Gabapentin because I was running low.

So I just got off the phone w/ the surgeon. (1) We will immediately begin the wind down of the Gabapentin. (2) No one knows why none of the PA's have been reaching out to me.(3) He has been waiting for the pain doctor to call him and I said, but you were the one who was on vacation. He responded, "Well he (my pain doctor) has my number" and I was like, "my pain doctor was waiting on you" because you were out of the office and he didn't know when you'd be back.

What am I missing?

So, I immediately contacted my pain doctor's office (after COB) and let them know (1) the surgeon's back and (2) the surgeon who left on vacation the day I did my PA meeting, is now back. Wow, thanks for letting us all know.

The surgeon wants the pain doctor to know start to focus on the oxycodone and he wants me to consider switching to heat pads/therapy/gel packs instead of ice. He doesn't know why the soft collar won't work even though I literally took it to him on the day of the PA to have him examine it the first time.

Hmmmm......

His advise for the temporarily paralysis that I experienced was for to go their hospital. Apparently, they DO have on-call surgeons. He just failed to mention that and gave me the business card of the PA. How am I supposed to know there's an on-call for him. It never crossed my mind, especially given everything that's happened. Plus, now I'm not sure who and how they would approach the incision point and procedures, but I feel like he should've given me the on-call surgeon's name/number and an on-call PA who is more responsive instead of just giving me a non-responsive PA's business card and failing to tell her to make sure she is responsive to the incoming patient's calls. I called over a dozen times and she ignored 11 of them. The one call was last month. Terse. And was about we're not supposed to do refills, but I'll do it again. Hang up.
That was before the paralysis and Heimlich maneuvers incidences.

I've been told on many, many occasions that I have high expectations of people because I think I was raised to work really hard and given people 1000% of myself and put them first and all of that. I have noticed lately, that this is getting me into trouble, but I know no other way. I would return calls. I would check on patient's; stagger the calls each night if I was too busy doing admin, clinical or other work. I just wasn't raised to leave people hanging. I was raised to go the extra mile and I notice people nowadays, just don't do that and it drives me crazy. "I'm just from a different generation" is how I usually end those conversations and then it happens again.

I keep reading your last line in your last post about healing takes months not weeks -- and I (as you've noticed) just keep having trouble with it (as you probably knew I would way back in March and April).

I've also learned that I'm still not ready to work 8 hours a day. You advised me on that as well: Do a little each day. And of course, you know, I -- didn't listen and now, I'm sore as all get out!!!

One day, you'll learn to love me.....................
Oh well.

Texas4Life, you are in a huge medical facility, you are a number, you are not going to receive individual care, that's how they work. The volume of patients they treat daily makes it impossible to render the type of care you are expecting.

My pcp's office was bought out several years ago to one of our largest hospital systems in my city. It is rare to find many stand alone drs now a days. I will not use the hospital system because of poor care, I go to a hospital not affiliated. They can still access my medical records electronically. I got a little push back for going there for ER care & when I told him why he understood.

If you will type in ACD&F in the search bar above on the right, you will find people use either cold packs or ice packs wrapped in towels, no heat. If you have inflammation the heat will aggravate it. Physical therapy may or may not use ultrasound or heat. But, by far they still used cold not heat.

There's an old saying, "you can lead a horse to water, but you can't make him drink".

straydog - I get what you are saying, but to just ignore me, not once or twice, but for weeks. I lost it today. I am in the midst of mindbending spasms and broke down into tears crying on the phone to my pain doctor's M.A. I had my worst day so far and I'm still in the midst of it. I just needed to talk to someone because that pain and those spasms took me apart. I recognize that I'm going to have bad days but I didn't know what a REALLY, REALLY bad day felt like up until today. The good news is, I went to see the pain doctor and was sitting in the M.A.s office @ 0900 and she just told me over the phone that she could see how much pain I was experiencing and then miraculously, she called me back at 1645 and so it was no surprise to her, that I "vented, exploded, lost it, melted down". I'd been holding in my anger about the whole experience for weeks/now months and it just came out. And I went from one pharmacy to the next trying to get RXs filled, no one returning my phone calls (you know about that), ignoring my concerns and my frustration with the doctor's not talking to each other -- it just all came to ahead and I literally snapped. I now know what "Taller Now" felt, that day she wrote that memorable post and I could tell she was crying when she wrote it. I know that pain now. This is a major setback and I am pissed about that too.

It's like the surgeon wants to wipe his hands clean of me and the pain doctor doesn't have time to deal with me. I was walking back from the pharmacy and I told her, I just got angrier and angrier that it feels like no one cares about my recovery.

To your other point, the surgeon has "pushed" me to heat packs. IDK. Last night as the pain started creeping up, I kept getting up and using double ice packs, as I usually do. I can tell which is helping/hurting at this point.

I understand that I will have really, really bad days. Today was my first day of understanding what those days will feel like. I wasn't ready for it even though the pain had honestly, been creeping up over the last few days. I spent all day Sunday with ice packs laying down. I just relaxed all days with ice packs but it just slowly crept up and today all hell broke lose and I had tried told it back.

I think straydog knew from the very beginning that the issue you raise, 1 day at a time, about my level of activity was going to be a huge problem. I knew myself. And frankly, it scares the hell outta me. I am trying to understand, (embrace?) what if any a new normal is for me, while I am still dealing with all of the hospital, doctor issues, etc. you've read about.

BTW, yes straydog the survey is long been done and submitted and I have no expectations. Maybe that's what I should feel about my recovery. I see the surgeon next Monday.

I am not used to relying on anyone for help; for anything. I was raised to be self-reliant and I don't know any other way to be. I felt ashamed straydog, when those contractors came in to help me. They see all of my DeWalt power tools and -- you can see the look of wonder in their eyes. I've always been the one people go to and love helping move, fix cars or plumbing, do any/all of family home improvement projects for my sisters, aunts, grandparents, etc. whatever. Being the "grease monkey" as my dad calls it. I don't know any other way.

I don't know what my new normal is anymore and I have no clue what I can or should expect I can do without reinjury or worse. I don't know what my life is like anymore, that's the reflection of how hard the pain hit me today.

Today was a wakeup call for me. I am remiss for not thanking you for your wisdom, guidance, sharing, ang LISTENING -- all of this time. I've needed you. You give it to me straight; I wouldn't want it any other way. So thank you. This forum has helped me more than my own doctors!

I found (1) Valium pill left and took it and the bulk of the pain went away within 1 hour. The problem? My pain doctor does not write RXs for Valium and my surgeon wants to stop writing RXs for me altogether and turn me over to my pain management doctor and none of my doctors seem to want to speak to each other. I am wondering if my surgeon (when I see him next Monday) can write up something to try to send to my PCP to write them (i.e. surgeon's final report, medical report, operation report)? I am thinking out loud because I don't think oxycodone 15 mg is the answer. We'll see. The DEA has cracked down so hard on controlled substances, innocent surgery patients and honest citizens are getting caught up in this mess. Thanks for the support and encouragement!

Post Edited (Texas4Life) : 7/11/2022 10:20:06 PM (GMT-7)

Waking up again, sleeping with the soft collar (religiously) on after taking one of each, it's clear the oxycodone doesn't work. My spasms = my pain. The surgeon said pre-and post-op, I would have serious spasms. When I take the oxycodone, it might as well be a placebo. Valium works. I feel completely different this morning. I can get through my days with Valium.

So the "referring doctor" is the pain mgmt doctor. To your second question, after meeting the medical assistant (MA) yesterday in her office, she gave me her business card. So after yesterday's meltdown with her, she has now offered to be the POC into the pain mgmt doctor's office. The prescribing doctor who is in the pain mgmt's doctor office, said they are not allowed to prescribe Valium. I can ask the MA if their office is allowed to prescribe Robaxin. Thankfully, both of them saw me in-person yesterday and witnessed the pain that was visibly noticeable.

So what is the "relative" definition of "long term"?

To your last point, I've moved on from the whole "bad hospital, catheter, etc." issues. I'm still having problems swallowing. I still come close to choking on food and medication. But as you know, I'm remodeling my house. My dining room is done. I'm currently working on remodeling my bedroom and living room. So, I'm "living my life", I just had a really, really, REALLY bad day yesterday that knocked me for a loop.

As you know, I'm still not in therapy/rehab/PT yet. Don't know how that is/is not affecting me. I slept all night last night.

The surgeon told me that he is going to be seeing me every 4-6 weeks for x-rays and discussion.

I am still having major left side (C4-C5) neuropathy; on a scale from 1 to10, it's a stable 9 to 9.5. So I don't know how he would feel if I gave him that assessment and wanting to push me out the door.

I admit that I need to pace my activities, but I don't know where that "sweet spot" is yet. Straydog, you and I both know that this was going to be a problem with me and my activities, post-op. I don't know when to stop and lay down yet. And my team keeps begging me to come back and I already did my "apology tour" to my CFO yesterday after going full EF5 on him. But he understood -- it was the pain talking; not me. But he is guilty of whispering (please come back, we need you) and we've got to this funding and budget crap straightened out for my programs because it has to be submitted to Congress for Appropriations. So, it's late and my Deputy can't handle it.

Could my PCP pick up the prescription of Valium with proper documentation, etc. from the surgeon?

Anyway, my surgeon is in the OR all day today, which means he will call me back mid afternoon today. And now, I'm exhausted again. Does that happen? I am flat drained already and it's 11 a.m. Is that normal?

Post Edited (Texas4Life) : 7/12/2022 10:39:21 AM (GMT-7)

How do you know what's a "no-no"? So Taller Now, said she went running (I think) like a mile or something after surgery. I haven't done anything close to that.

I admit, I'm guilty of walking around IKEA 5-6 times to "window shop" as part of the remodeling effort to take my mind off the surgery. I went to showroom yesterday to look at a new home office desk to replace my current one. I'm more guilty of probably doing more driving than I should. But I can't uber everywhere. But I can't stay in bed all day either. Up until last weekend, I hadn't logged in to work at all. But now, the government is begging me to come back and so is the rest of my senior leadership team. THAT is what is causing me stress because they are used to me directing everything and my Deputy .....isn't me. And I'll leave it at that. While you were typing your message to me just now Straydog, another one of my government leads texted me on my personal cell and said he isn't happy with how things are going and is pleading with me to come back.

Update: As I was responding to straydog, the surgeon's office called and wanted to put me on Flexeril and I told them that hasn't worked on me. They offered to up the RX to 10 mg but I told them about Robaxin and they said we can absolutely do that. So they are going to (1) put me back on the Gabapentin because we noticed as I weaned off it, my nerve pain increased and (2) put me a 10-day supply of Robaxin and see how that works.

But it wasn't my imagination: They told me that they've tried to call the pain mgmt office several times and they couldn't get a response too. So all of the times I was calling them trying to get RXs and find out if the two doctors have called, they've not been responsive at all. Understanding that surgeon's office is trying to move me along to the pain mgmt doctor. So there is where the comms breakdown was happening and all the while, I'm coming off of the meds, the nerve pain is coming back in full force and no one is talking to each other and the surgeon's office is not supposed to keep prescribing meds. I've long understood that. So that is what led to what happened yesterday. They tried to call the pain mgmt doctor's office several times since June and no one has responded and I'm out on an island by myself with the pain increasing.

So now, the surgeon's office is going to call the MA who stepped in yesterday and offered to be the POC for their office and the liaison between me and the surgeon's office.

And to prove that I'm not going to stress out, straydog, all of my new furniture for the bedroom and living room just arrived.....broken and damaged and put back on the truck and gone. All of my clothes are in garbage bags in the dining room and I will not be getting replacements for a week.

Not sure what you mean by "my activities", so need some clarification there.

I guess there is a miscommunication. I am saying that "I" don't want to lay in bed all day while trying to figure out how much I can do. That's what I'm trying to say. I agree about the blood clots especially since that happened to me and that scared the hell out of me. I may be mistaken but I thought I read in someone's post that they walked a mile and re-injured themselves. It sounds like it wasn't her.

I also did not get any detailed post-op instructions as my surgeon left after my surgery and immediately went on vacation. The nurses were terrible. Other surgeon's were in surgery, everything was rushed to push me out the door when I was released. And to your point about "me figuring out how to pace myself" is exactly what I've been doing: trying to figure out how to pace myself without re-injuring myself. I'm not sure why that point is not coming across in my comments/posts.

And again, we haven't discussed PT because (1) he's been out, (2) he wants more x-rays to check the swelling level and (3) he wants more involvement from the pain mgmt doctor to assist in helping getting the meds right to assist in getting the pain/inflammation levels down, so I don't go into PT too soon. But as I've said before they were not connecting, so it's been difficult trying to get the two doctor's office to communicate. I've had to play a larger role than normal to get them in sync.

During the PA-C call yesterday, we determined the reason why I was having so much pain was I was coming off of the Valium and the Gabapentin at the same time and I had nothing to replace either with. The neuropathy in my left arm/hand came back along with the muscle spasms at the same time as I was coming off of those meds and the PA-Cs attempts to reach the pain mgmt doctor several times were unsuccessful over several weeks. Yesterday during my visit at the pain doc office, I was introduced to an MA who will now be a POC for the surgeon's office and me as opposed to dialing in to a group number for help and getting no one.

In any event, I'm going back on Gabapentin and I just pick up the Robaxin to see how that will work.

Post Edited (Texas4Life) : 7/13/2022 10:50:42 AM (GMT-7)