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Texas4Life

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Texas4Life
Regular Member
Joined : Mar 2022
Posts : 59
Posted 6/7/2022 11:51 AM (GMT -7)
Hey Straydog, A LOT has happened since we last talked.
First, took your advice and wrote down all of my concerns from my hospital stay. I came with roughly 11 discussion points. That PA meeting is scheduled for 0830 on Friday morning at Georgetown University Hospital.

Second, over the weekend and more importantly, I started coughing up 1.5 inch blood clots in the middle of the night that scared the hell out of me because I thought I was choking. He hasn't addressed that or the blood drainage issue you brought up, except to say that 'it appears that it's "all" dried up 'now'....whatever that means. I've resolved that I'm going to get the needle that precludes blood clots from occurring because it literally was the most terrifying experience I've had in my life....and that's saying something being a combat US Marine! I saved it in storage but he doesn't want to see it, discuss it, run labs on it, etc. One of the things that is on my list of things to do is (I'm asking your advice here) is to take it to my PCP and have him write me a Labcorp RX to have my blood drawn and have them do a lab workup on it. I don't know. Your thoughts? I'm still freaking angry about it!!!!!!

Third, last Thursday when I discharge AFTER his rounds he leaves and tells me that if something goes wrong over the weekend to call him on his direct line and gives me his assistant's direct number. I'm calling 2-3x because (1) the gigantic blood clot, (2) the decadron has completely obliterating my vision as a side effect and I'm blind as a freaking bat and (3) because I don't if they actually did AFTER the procedure was supposed be over, in other words, your NIH article clearly stated that they should've icing and using elastic wrapping around my neck to preclude the hematomas from forming. He hasn't said anythign about the time discrepancy that he quoted me of 2.5 hours for the procedure....ending up being more than 4 hours! *** is that all about??? And the hematomas STILL formed along with the clots.

So I don't wait. I call his office at 0611 first thing Monday morning and he calls me and tells me to immediately to back over to GU for a STAT CT Scan. It will be there waiting for me when I get there. I ask him over the phone. "Once I do the CT Scan do you want me to stay or go". He says, "Go and we'll discuss the results during the PA meeting on Friday". I said, "OK, good. NP". I show up, the med techs have to find it but the insurance hasn't approved it and I literally fall asleep in the waiting room for over 1.5 hours waiting. Thankfully, one of the really nice elderly nurses who remembered me from 27 MAY walked over and tapped me to wake me up and said that they had been calling my name -- only to find out that the the insurance company denied it because they wanted a peer-to-peer review. I get it. So where do I go. The surgeon has doctor's office/privileges in multiple hospitals that I've never been to. That nice elderly nurse realizes that I don't know where to go and walks me up to the 7th floor. I hand the doc's assistant the peer review sheet and ask her, should I stay or go. She says,"Well the doc's asst is at lunch, so you should go." OK, NP. I leave. I don't know if you know the DC area well, but I literally find my way out the maze of that place, get my valeted car, drive through Georgetown where they filmed the real life movie "The Exorcist" and drive all the way back up towards Baltimore. I literally walk in the door, drop my laptop bag and Ardnas (his asst) and says, "Your peer to peer has been approved, you need to drive back to Exorcist country right now!

REALLY? Are you serious?

I said Ardnas, I just left and DC traffic is worse than any movie about Satan possessing a girl. She understands and goes, well let's find another closer to you. Olney, MD. OK. So I know it's "God's Country", so I call FIRST so see if anyone is there and will pickup the phone. I wait 25 mins and no one answers. It's now 1500 in the DC area. I am sitting there like I'm F'd. I jump in the car. And Straydog....it is single file lane driving into God's farm country FOR MILES. Remember, I'm not supposed to be doing all of this sitting and driving. The pain is getting worse and I have to take Valium 4x a day, Oxycodone 4x a day and my vision shot to hell !!! I get there and the guard is putting me throught it. Ardnas told me that the Medstar systems are all connected regardless of it cross over between state or different jurisdictions. After waiting again for more than 25 mins, I remind them, I have a STAT CT Scan on me. Ardnas tells them they must drop everyone and take me first. They refuse. And now COVID forms, registration forms, etc. must filled out. Finally they take me back and do the STAT CT Scan.

It takes 6 mins (?). We're done. I'm driving home feigning for pain killers and the surgeon calls me and says, the swelling between C3-C6 has reduced significantly -- Nice, but that's not what I am feeling sitting in the car driving all over the Baltimore-Washington DC area looking for places to do STAT CT scans.

He then proceeds to tell me: (1) you are only 8 days out from the surgery, so the choking and swallowing and dying feeling you are experiencing, should go away the further you get from the surgery. I was choking on the floor in the kitchen on Saturday from eating a darned blueberry and thought I was going to die. He said that's normal and it should slow dissipate; (2) he still doesn't understand about the deprivation of food and hydration after the procedure for four (4) days. He's just not prepared to deal with/answer that question yet; (3) he will not address the 6-inch-long bruises down my arms or the significant incident with the catheter that I still feel to this day. I am wondering if they wore latex gloves after I told them not to because latex condoms make me itch like crazy --- and I told them that repeatedly! Then there's the pain ripping out and the bruises and the swelling. We're just not there yet from a discussion point.

The purple glue is slowly peeling off. How long will it take before it completely goes and I get my skin tone back? No pain at the point of incision. LOTS of left shoulder/shoulder blade spasms that will appear to take time. I don't think the oxycodone is working.

Straydog, are you familiar with dexamethasone aka decadron????? THAT crap is strong. It powers through Valium and pain killers and Lunesta 3 MG and I am wide awake all night long. It is POWERFUL!!!!! Your vision is gone...period! He wants me to finish the entire RX though. I have a few days left of it. I hope I get my vision back, but I'm not diabetic and I've VERY hard to stay in shape and keep my glucose levels low: Decadron drives up those a1c numbers.

I've lost about 8-10 lbs and I'm (like others have said) completely smoothied out. I have not yet had to sleep in my recliner and though I have both a soft and a hard collar, I'm not required to wear the soft one regularly as a matter of precaution.

I apologize for my language, I just felt like I've been jerked around and ran all over town when I shouldn't be. I should be taken it easy as you all have said in your posts. I'm doing all of the leg work. To constantly call an uber of a lyft would put me in the poor house as much driving as I've had to do to make all of the meetings and doctor's visits. I'm just angry and I feel like I'm doing too much, you know what I mean? I am not focusing on getting better. I feel like I'm focusing on dealing with their bullcrap and I'm having to pay for it.

I am looking forward but not looking forward to Friday. My next door neighbor who is a nurse told me that there is a very good chance that all of my complaints will just turn into a "***** session" and no one will get fired. These candy stripers had no idea how to insert a needle into me, find a vein or remove a catheter. and where I used to trust females with catheters.... I don't anymore.

Sorry for rambling.
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straydog
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Posted 6/7/2022 5:18 PM (GMT -7)
I've read some people have swallowing issues for up to 6 weeks, then some less than that. You will need to strike a balance on the foods you can swallow & try to put stuff in a blender if it bothers you eating them otherwise, such as the blueberries.

I would not bother taking the dried glob to a lab, it may very well could have been old dried blood from the surgery. This would not concern me at all.

I can't remember how long it took the glue to fall off of my husband's back, just let it do it's thing naturally. When asking about the length of time for surgery, be sure to ask him if things were worse than what showed on your MRI. This is what happened with my husband, the myelogram & CT did not show near the damage until the incision was made. Another thing, did your surgery start on time?

Yes, the Decadron will keep you up at night, cause mood swings & agitation. I've taken it before & it was horrible. It may take a couple of weeks to clear your system.

Your neighbor is correct, they will listen to your complaints about the crappy care. I mentioned before at least you will get some stuff of your chest.

I know you are pleased with your surgeon, however, I WOULD NOT ever go back to that hospital again for any future surgery. Just because they are well known & have all the bells & whistles that doesn't always mean they are the best. I would scout out a different hospital if the need ever arises. This is not uncommon with hospitals.
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Texas4Life
Regular Member
Joined : Mar 2022
Posts : 59
Posted 6/7/2022 6:30 PM (GMT -7)
Thank you for listening and it sounds like everything I've mentioned -- including my agitation and frustration -- is not new to you because I really felt bad about dumping on you. I didn't know about the side effects of the Decadron. I've had some time to think about what my neighbor (nurse) said, and it was probably a good thing that we've scheduled the meeting well after the surgery for me to "calm down" some.

The mood swings for a male are not good Susie! LOL! I'm not used to it. It was completely unexpected. Did yours or your husband's glucose level go up afterwards?

I feel like I'm going to need to be on the Valium for at least another regiment. I'm exhausted all of the time but can't sleep because of the Decadron. And the spasms can be draining. And it seems like they are moving across from my left shoulder to my right.

Were you on Gabapentin too? For nerves and anti-inflammation. I've got that too three times a day. And the sodium senna plus pills have been a Godsend when I must go to the john!

No, the surgery did not start on time because the millennials were too busy using their smartphones to even look at me and help move me from the gurney to the O/R table -- which is another thing I want to bring up during the PA meeting. Susie, the surgeon's assistant, begged them, and they ignored him and never looked up or got up or moved to assist. Not sure I mentioned that to you before. I hate using certain words to describe how they made me feel but you'd be shocked if you witnessed what I saw. I kept craning my neck to see if any of them were going to get up to move me. I'm like 6'2, 230 lbs. and a small older, thin anesthetist (sp?) man and 5'2 woman ran over to help. These guys were like college-aged lacrosse studs sitting in the back of the O/R all between 6'0 and 6'2 and built strong -- and wanted nothing to do with me. All lean. All fit. All healthy studs. Staring at their smartphones. And I'm shocked. They never looked at me to help me after the other two raced to put electrodes and IVs and everything on me...you know the drill of what they do. They completely ignored me. He kept saying, pleading, asking.... guys will you help me move the patient to the O/R table? Not a peep.

Anyway, as a result, to answer your question, it didn't start on time because they were not cooperative and two people had to do race-horse prep work that I would assume usually takes 8-10 people in the O/R to do. So no, it didn't start on time. I was not even awake when the surgeon came into the O/R. I do know, it took longer than he said, and I'd like to know why that is but my neighbor nurse said that is also to be expected sometimes.

As far as the blender goes, I'm getting creative. I get those nice glass water bottles and pre-make my "potions" and drink on them with lighter berries. I was able to eat some blueberries today (good for male prostates) and did a bit better, so I think you're right: It's just going to take some time and maybe the surgeon is right in that regard too, it's just the scariness of choking at night while you're asleep to strikes the fear of God in you.

I also want to ask him to make sure that both me and my PCP get copies of everything, so he's in the loop.

Oh! You were right about something else. The pain in my hands: Gone. My headaches, so far: Gone. I can feel ALL my toes for the first time in my life: Amazing. Every day, I get more feeling back in areas I thought I was lost forever. I don't have pain in my lower lumbar section (knock on wood). All that's really left are the spasms in my shoulders and that's it. Is that normal or did I just catch it in time and not let it escalate or what?
I honestly feel like, if I can bench press and lift weights (once I'm cleared by him probably late Summer/early Fall) I will have a quality of life that I've never known. I don't have dizziness or stumble or a jacked-up gait -- at least not yet. I don't want to jinx myself. He didn't do C6-C7, but he told me all my spinal fluids that I lost because of the stenosis and degeneration, have either come back in full force or back to normal levels and the fluids at C6-C7 I could clearly see on the MRI were flowing uninhibited and undisturbed.

What do you think? I'm trying not to get my hopes up too high.
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straydog
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Joined : Feb 2003
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Posted 6/8/2022 4:26 AM (GMT -7)
about those muscle spasms in your shoulders, this is normal & many have complained about this. Use your cold packs for this, no heat. The muscle spasms may haunt you from time to time long after recovery, usually from an activity that aggravates things. Don't be afraid of asking for a refill on the valium.

My husband is type11 diabetic, insulin dependent. Steroids are avoided with him because it messes with his sugar. He takes a hefty dose of Gabapentin for diabetic neuropathy in his feet & legs. It took his incision longer to heal because of being diabetic. I can't take it, I had an adverse reaction to it.

After your meeting Friday & you get to say your piece, I urge you to put this behind you. I totally understand how you feel, been there & done that, however, you are expending too much energy that can be used more effectively. Staying wrapped up in this is keeping you wound up like an 8 day clock. Take some comfort that you got to air your side of the situation & move on. Most people only get to fill out a form.

The hospital & drs should have access to your medical records via their computer systems, everything is electronic now. My pcp can access my records on his laptop to discuss anything with me. If the hospital has a patient portal you should be able to create an account & have the same access.

Here are the facts about your surgery. It will take 12 months for you to completely heal from this surgery. How you feel 12 months from now is the typical time frame. You will know if you have any deficits from the surgery. It does not mean during that 12 months that you can't live. It takes time for the tissue & the fusion itself to scar over the hardware. You should have regular xrays done to make sure the fusion is progressing & in it's proper place. Lets be honest, drs never go into full detail about these surgeries, if they did many people would back out. I think you are reaching about the bench pressing in a few months, why on earth would you want to risk messing up the work that has been done on your neck? There are many different exercise programs available. I don't know the weight you were pressing prior to surgery but I wouldn't make it my goal in life. Keep in mind, if your dr says sure, it's not his neck that was operated on. If you rack up your neck, that will be on you, not him. I'm not trying to rain on your parade, just trying to be realistic.
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Texas4Life
Regular Member
Joined : Mar 2022
Posts : 59
Posted 6/8/2022 7:32 AM (GMT -7)
I use the soft collar and ice packs on the neck but running around from place to place without having time to heal properly has taken its toll on my recovery and I think creating the stress that you detected (along with being on the Decadron) that I'm feeling. I will ask for more Valium as I'm now out of them.

Tell me more about the Gabapentin if you have any insight. I was told it was for nerve and anti-inflammatory purposes. But you said your husband was on it because he is Type 1 Diabetic?

I took your advice to document my concerns and just haven't had a chance to voice them. Once I voice them and they are on the record, my intent was to get his feelings on it and then leave the hospital alone as you said yesterday. Go to another place. I'm sorry you did not pickup on that. It was very traumatizing and the further I gef from the surgery, the more the anger "dissipates". I think -- as you mentioned, the Decadron was messing with me in ways I was not familiar with because I'd never been on it. Does that make sense? As far using energy elsewhere, I've had a new A/C put in, new bathroom tiling put in, walls painted, my car detailed for my 54th birthday next Wednesday, and a redesign of my dining and kitchen along with carpets being professionally scrubbed after entry halls being re-painted. I just didn't go into all of that detail in previous messages. I just haven't had a chance to air my concerns yet. That is what I think you are picking up on and it is coming through. Once I do that, I'll be good especially after speaking to my neighbor nurse who's helped me understand that world a bit better. BTW, I'm coming off of the Decadron and I've noticed that my disposition is slowly changing. I just went off on you and I'm so sorry because it was a drug I'd never been on and you've been nothing but kind, generous and respectful and I fresh out of discharge with no answers and feeling dejected, angry and frustrated. That wasn't me. That was the Decadron talking. I should finish it up today and then I guess it will work it's way out of my system over the next couple of weeks as you said last night. Again, my deepest apologies!!!

I've created an account this morning on their patient portal and gotten records and will have more blood drawn by my PCP tomorrow and go over those labs and surgery reports with him and the referring doctor 16 June.

For the regular x-rays over the course of the 12 month period after the surgery, were you getting them via the surgeon, the referring pain doctor or through your PCP? He's not going to clear me to bench press in a few months. He said he'd clear me to do (mild?) cardio in 3-4 months. The weight training/resistance training which burns more fat and is clearly more healthier long term for the body, is going to be ongoing discussion between all of my doctor's. It's not a matter of "risking the surgery done to my neck". It is vitally important to long term health to do resistance training for overall health, that cardio alone can't sustain. Muscle building burns more fat, reduces obesity and precludes the onset of debilitating diseases such as high cholesterol, diabetes, etc. It also helps in other intangible areas such as feeling better about yourself, confidence, performance, how you look and feel in your clothes, how you perform on your job, etc. the benefits are endless, plus there are any number of studies that demonstrate they stave off mental illnesses such as Alzheimer's and early onset dementia. The benefits are endless. That said, I hear you loud and clear and I want to go on record and be crystal clear: I am NOT trying to "undo" what the surgeon has "done or corrected". I am going to take it slowly, listen to his, the referring pain doctor's and the PCP's advice on how and WHEN to proceed with my weight and resistance training, when and only when I get full clearance to move forward. I have to believe that there are people who've had similar surgeries who've gone back to some semblance of their active workout lives and I don't think that's what you are advocating here. I'm going to listen and be responsible in my plan. Rehab is a subject that is on the table for Friday too during the PA meeting.
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straydog
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Joined : Feb 2003
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Posted 6/8/2022 12:39 PM (GMT -7)
Gabapentin is being widely prescribed for pain too, this started when they went after people being on pain medication. Look at medications that are used off label for a variety of reasons. Diabetes can cause neuropathy in patients, in my husband's situation he lost the feeling in his hands & said it felt like he was walking on glass plus he has numbness. Perhaps you need to ask the dr that prescribed it how long you need to be on it.

Your surgeon should order xrays at the 6 week mark & usually at 3 months, unless you had something to come up that would warrant them sooner. He did the surgery & he is the one that should be monitoring you until he releases you back to the referring dr. Careful getting too many fingers in the pie concerning your care, you could end up with 3 drs not all agreeing. That's a situation you want to avoid.

Yes, people do resume a normal lifestyle after surgery. Avoiding activities that can cause harm is being smart, it does not mean they turn into couch potatoes. Talk to the surgeon about the bench pressing, ask him what he would consider a max weight limit. My husband was given written instructions & when he went back to see the surgeon 6 months post, he again reminded him about repetitive lifting bending & stooping.

No apology is needed, you had a horrible situation happen that I have not heard of in all my years here at Healing Well. I would ask the surgeon point blank about the blood flow not being controlled during surgery. This was caused from surgery, not the assistants. If you read the articles from NIH this related to the surgery.

Good luck on Friday & let me know how it goes.
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Texas4Life
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Joined : Mar 2022
Posts : 59
Posted 6/8/2022 6:44 PM (GMT -7)
OK, I'm up to 21 questions now and feeling more ready to get this over with and move past this finally. Lies, deceit and coverups to protect assistants, potential malpractice suits, etc. don't typically sit well with me, especially with my law enforcement background.

But I am going in with an open mind and just want him to be open and honest. As you said earlier, I'm very lucky to be alive and that hasn't escaped me since I've been home recovering. If there is one particular NIH article you really want me to focus on that I might've missed, please feel free to copy/paste the URL in here so I can read up on it prior to the meeting with him. I read a few and they were all scary as hell. I want to know, particularly, did they use ice to stop the blood flow, as one of the NIH articles prescribed when that happens, and was that the reason why it took an extra 2 hours for the surgery? If not, then why did it take an additional 2 hours of surgery then, if they didn't use ice to stop the bleeding? What happened during those 2 extra hours is ultimately what I'm interested in?

Any rehab questions you think I should focus on as my company is about to go into open Enrollment for next year's benefits? Did you or your husband do any rehab at all?
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Texas4Life
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Joined : Mar 2022
Posts : 59
Posted 6/9/2022 5:58 AM (GMT -7)
So looking at the bottle,\ I'm on Gabapentin 300 MG 3x a day. I will ask him that on Friday.
Suse, I'm looking at my CVS Pharmacy app. My surgeon did NOT prescribe the Gabapentin. Another doctor/asst doctor who prescribed it. And still, another doctor who I don't know prescribed the Decadron. The surgeon didn't prescribe oxycodone or Valium either.

Now, when I look at my patient release notes the discharge nurse gave me, it was being prescribed for pain and anti-inflammatory.

Hold on...the surgeon just called me.

He said exactly what we were saying: the Decadron is going to artificially going to increase my glucose numbers and I don't want that because I've worked way too hard to keep my numbers lower. So, he suggested that I call the PCP back first thing tomorrow morning and delay the blood lab work another 30 days.

He just called in more Valium too and we are wrapping the Decadron after tonight's last dose.

I will ask the surgeon what this other doctor's role was involved in my surgeon as well as about the blood flow not being controlled during the surgery. My collar is also not fitting anymore. My neck is 46 cms so he said we'll re-fit it.

The portal profile is filled out and I've got all of my questions documented in MS Word ready for Friday's meeting. It's @ 0830 so I expect that I will reporting back by noon for your thoughts.
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straydog
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Posted 6/9/2022 9:30 AM (GMT -7)
Yes, any steroid will mess with the sugar levels. I now refuse all steroids, in 2013 I was put in the hospital & they did IV steroids. Not only do I go into congestive heart failure on them, my sugar shot up so high that they were giving me insulin shots 3 times a day while in the hospital. This was done by a hospitalist, not my pcp. None of my regular drs will ever give me steroids again. Once off the Decadron drinks plenty of fluids to flush it from your system & your numbers will go back to normal, same with your vision, it will clear up.

You asked about PT after your surgery. It is extremely important that go to PT. Your muscles are weaker since having surgery & PT will strengthen them up. Believe, it will help you. Also, pay close attention to your posture, keep yourself straight, no hunching over, straight back chairs are great to help with this.

All I can say about your entire surgical & hospital debacle is I would only use a hospital of this type in a rare instance, such as an illness that know one knows anything about. My husband has a great internist for a pcp, he actually has hospital privileges which is rare today. He is considered the guru of diabetes & is often called in for consults. He is older & has mentored so many drs here & is highly respected. When he referred my husband to the neurosurgeon, I immediately went online & checked him out several different ways, including checking to see if he had any complaints or lawsuits filed. I live in Tx so it's legal to do this. I do this with any dr for my adult children, knock on wood this has paid off. You had a lot of people stirring the pot, right hand didn't know what the left was doing. I do not understand your dr not being involved except to do surgery that day, this would not be acceptable to me.

I worked in the legal field for over 20 years. We handled medical malpractice claims. Each state has it's on rules on what it takes to have a claim. Two things all states have is substandard care was rendered that resulted in a permanent debilitating disability or death. If a person doesn't meet those requirements no claim. Lawyers have medical experts review the medical records to look for this. More cases are rejected than what is accepted.
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Texas4Life
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Joined : Mar 2022
Posts : 59
Posted 6/9/2022 1:19 PM (GMT -7)
And now you know why I was so angry for all of those days: Because I could feel something wasn't right and was in a terrible state and was felt miserable for whining and dumping. I didn't know who to talk to and who to trust and so that was one of the many reasons why I joined your site months before having the surgery. I feel like my primary question is what was his actual level of involvement/engagement in my procedure; who was really leading it given all of free flowing blood and the results? That's why I was so upset and couldn't let it go for so long because I know they try like hell to cover their asses and protect their own.

So here we are, hours from a very real conversation about these questions and what am I really left with? The hope that whatever happened and whoever is responsible for it, didn't do lasting damage and then leave it in God's Hand's. This ate me alive for days and I can't go back to all of that anger and frustration but I admit, I have a bad feeling about tomorrow and I'm gonna wait to hear your thoughts.
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straydog
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Posted 6/9/2022 3:45 PM (GMT -7)
Your comment is an excellent question for the surgeon.

When you meet Friday, do not be confrontational, you need to be as calm as possible. That's going to be tough one, but as the old saying goes "you catch more flies with honey". I had to involve a patient advcate for my husband years ago. The dr came undone in front of the advocate & because I remained calm during the fiasco, he was written up. How I remained calm I have no idea.

So keep your cool!
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Texas4Life
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Joined : Mar 2022
Posts : 59
Posted 6/9/2022 4:48 PM (GMT -7)
That’s one of the things I’m grateful for: the cooling off period before the PA meeting. I’ve taken my mind off of it and tried to find a mild balance between having people remodel my bathroom, scrub the carpets, do “light” shopping at IKEA, return gifts,. If I wait around and do nothing, I am afraid I will get blood clots, so I am trying to keep busy and get ready for my 54th birthday next Wednesday lol. I hired someone to professionally detail my car and attended a street service. I am doing everything I can without overdoing it, but I know I have really got to be careful but I have to take my mind off of it because you saw how it consumed me. I’ve not been chained to the house at all since returning home but I need to slow down - I know that. I am taking my meds and listening to my body and stopping when it feels tired. I want to get everything done before this weekend because my family is coming in from Texas to see me and I don’t want any griping about how I keep house. You know how Texas folks can be lol!!! I am not wearing my boots tomorrow either. Goodness! They’ve killed my feet this week! I want to stay in and watch movies all weekend, especially if it rains, but I need to hire a couple more contractors to hang pictures, hat racks, etc and and I will be good to go. And I am going to bed early tonight. I am beat.
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Texas4Life
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Posts : 59
Posted 6/10/2022 5:34 PM (GMT -7)
So as I was driving in, I felt like I was driving to an interview: Talking to myself in the car. "If I start out by saying I don't want this to be confrontational, it will be." "If I don't mention it all, he may become confrontational, which is what I don't want." It was ridiculous. I said to myself, 'What do I want to achieve with this meeting", and so I settled on, "I've taken the time to write all of these topics down to discuss with you to get your insights" but I want to start with your staff."

So I got there at 0815. The meeting was supposed to be at 0830. He doesn't show until 0845. I know you're pissed about not respecting people's time, considering I'm the one who had to drive all the way out there, but he was the one who initiated and told me about the meeting.

I took the extra 45 mins to use Waze to book the rest of my day's contractors meeting, realizing I'd left my glasses w/ the Valet. Smart.

He finally comes in looking like cheerful like Santa Claus and he pulls up in his surgeon's circular seat, 5-10 inches from my face. Don't you love it when they crowd your personal space? I've got my 3 pages of questions and comments and I start with "names'.

Rhonda, she is a superstar. Noah, is a superstar. Allison is flat out amazing. Jessica is simply beyond amazing!! And I thought you even did a great job and that's where my questions start. So I wanted to name names of his staff who were wonderful and I think that put him at ease and took any "sting" out of the air.

My points, I went right in channeling Straydog. So let's start with who was in the room besides all of these I just mentioned because there were people who I didn't meet prior ot pre-op, who ignored me and treated me like a 3rd class citizen. He explains: There were IV specialist, technologist, one-learning student, one manufacturer/vendor, etc. None of them were allowed to touch me or talk to me. They were watching and took no part in my care. I remembered that from a tenectomy I had last June. The vendor's were everywhere but weren't allowed to engage, so that made sense.

He stated, I did the entire surgery, no one else was involved in your care except Tran (the anesthetist whom you met in pre-op). So I was satisfied with his answer there and why they were "hands off". He managed the whole surgery from beginning to end and said that sometimes the flow of the blood may occur and since he was the only one working the procedure and monitoring for any anomalies (like you brought up, did the MRI's match what he saw prior to incision, etc.) he wanted to be as meticulous with the details of the discectomy and fusion because of my bone density and maybe some additional blood flow occurred, but as he mentioned, it wasn't a lot in the whole scheme of things and has seen this on many occasions and worse in others. He said that I did have a lot of swelling on my left side (I suspected that prior to surgery) that may have drawn his attention, where I was primarily losing strength and feeling and wanted to address that immediately and thinks that's where some of the extra blood flow came from. That's what was the delta in time between what he quoted me (2.5 hours vs. 4 hours). Understand, when he initially took the MRIs it was weeks before the surgery. Two weeks prior to the surgery, I started experiencing a lot more problems on my left side; I mentioned to you the other day, I completely lost control of my left hand and there was some radiating down my left arm. That was a developing factor AFTER my two consults with him in March and April after I started coming onto your website. The surgery came right on time as my symptoms were developing rapidly leading up to the surgery. So I can't blame him for that, but I did tell him in pre-op what had happened since the two consult visits. So he was "as prepared" as he could be. But still, he wasn't surprised by those developments. I also was told by my pain doctors to tell the pre-op nurses, Jessica, Rhonda, etc. that I had been given steroid injections, facet blockers, trigger points, etc. up until April, for their own situational awareness. So all considered, I think I'm satisfied with how he responded to that serious of questions.

So we pivoted to the next serious question about the lack of food and hydration. He stated because I had some swelling that often does accompany these types of procedures, we weren't sure if there was any infections. So I called the Infectious Disease Team to assess your dysphagia, breathing and swallowing and we didn't want you to choke on anything we were giving you and so we hung the IV anti-biotic drip (I remembered that part too) for 1-2 days to ensure there was on infections. Next, we called in the speech therapist to check your vocal cords to ensure that they were working because I couldn't speak or eat and they/she wanted to make sure they were not inflamed to cause me to have food caught in them, choke or die.
Got it. They just didn't want anything in my system or wanted to ensure anything (steroids, etc.) that were in my system were completely flushed out and wanted to rule it and everything else out as to what was causing it so that they could attribute it only to known causes of the procedure, which I can now understand.

Next, the blood clot. He wasn't even really sure that was a blood clot, after I described the event to him. He think it was dried blood that he says he has seen during procedures that sometimes form and eventually work themselves out of the system and I've only had one, which he said is more than normal.

We then discussed the nurses care, because they "don't work for him" he can only bring it to the hospital's attention. He advised me that Georgetown does NOT use latex gloves anymore at all but I told him that I had an allergic reaction to someone's gloves, albeit, minor but very strong, erythemic and wheel-like reaction with itchiness, but he stood his ground and advised me to try to use some hydrocortisone on it. I have and it has reduced almost down to zero itching now. But I was stood my ground on the catheter treatment and he was as apologetic as he could be because they're not his girls. So I guess that was a draw. And as long as the itching is gone and he does indeed let the hospital know (I gave him the nurses name who did it) and it gets reviewed, that's all I can do. You mentioned that that would likely be an outcome: that I would just "be heard" and I'm OK with that at this point.

Ongoing care. He is taking the lead. He wants to see me back in 4 weeks for another round of x-rays. Just as you said he would. My pain doctor, whom he knows (and referred to me to him) will assist with meds while he is on vacation in Central Florida for the next two weeks. I see him on next Thursday for him to review and discussion. I have the O/R notes and the Final Surgeon's Report, that my computer will not let me scan in and send to him for whatever reason. But the surgeon will take the lead, the pain doctor will be working to assist where and when he is needed and my PCP will be the core repository of my history of procedures and notes for his own situational awareness, blood work, labs, etc. as he should be. A complete, holistic team effort.

Your point of contention...lol. Weight lifting.

Once again, Straydog is top dog. The answer was a straight No. LOL! He says, cardio: 3-4 months (September-ish). Weight-lifting, he completely understood my concerns as I laid them out with you and the benefits, but he held his guns. He does NOT want me near weights until at least December! And I was crushed. But he says, as he did another thorough examination of me this morning, my strength and all of my "decreases" in responses were excellent, when/where I failed them prior to surgery (you know when they hit that rubber hammer on your limbs? I failed that before. I succeeded today!) They've all come back. Some areas are moving faster than he has expected. He really wants me to slow down and hire the contractors to do all of my remodeling and no lifting at all but to get more rest than I'm getting now that I'm off the Decadron, which like you, he really hates but had to do it. I told him you said to flush it out with lots of water and he agreed with you. Start flushing immediately.

The purple glue is gone. He said for me to start using Vitamin E and silicone. Any brands you recommend?

We're not starting the rehab yet. He wants to have another round of x-rays first once he comes back, to make sure more of the swelling is down before we really get into the rehab but that's a subject for another day. I have an appt already scheduled with him for those x-rays 18 JULY and we go from there.

Thoughts?
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straydog
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Posted 6/11/2022 4:35 AM (GMT -7)
If you are satisfied with his answers about what went on in the hospital that is all that matters. The only thing I will point out is when someone has trouble swallowing after a reasonable amount of time or voice problems they are seen by an ENT, not a speech therapist. The ENT will bring in a speech therapist if one is warranted.

Our bodies have their own built in healing mechanism for a reason. I would get some vitamin E with silicone in it, ask a pharmacist for a recommendation. The silicone will act as a moisture barrier. I would pass on that. Your recovery from this point on depends on you now, the dr has done his part by doing surgery, the rest is on you.

More than likely he will put you in PT after the next visit as long as everything looks good on the xrays. Don't get hung up on thinking because your scar looks healed that things are healed on the inside, it doesn't work that way. I have a suspicion you are going to test your limits regardless of what the dr or anyone else says. I will only say this, a re-do on a surgery is not something you want, this is why you need to be smart now.
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Texas4Life
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Posted 6/11/2022 6:02 AM (GMT -7)
I'm sorry, I was also seen by an ENT and speech therapist. There were so many people who came in to examine me, and I was drugged up, I forgot. And he did mention that. The ENT was brought into explain how I was intubated and how they moved my trachea; she thoroughly examined my ears and throat mostly. So that's my fault. And the speech therapist was needed because I was having problems with clarifying and slurring my words, most likely because of the drugs.

I've been on Amazon looking for a good Vitamin E with silicone but there's so many and wouldn't know which one to choose. I thought with your experience, you might have some suggestions. I'll keep looking. He does want me to use the silicone patches though to help the concealing process as the healing process continues. You think that concealing is not necessary because of where the incision is and it will automatically conceal itself because of his approach?

I won't get hung up on the scar. My body is talking to me and telling me, "sit your ass down and stay down!" I stayed in bed longer than normal this morning and I will go back to bed listening to music. I've got my diffuser and zen music going (I love rain and thunderstorms nature sounds) and I've booked my last two contractors for all day Monday and Tuesday next week.

I am deeply concerned about eating still. I called out for food at midnight last night and I hadn't done that since--forever! I don't do that. And so my caloric intake is going to skyrocket and I'm laying out catching fat. And I am really going to have problems with just "doing nothing" -- while eating. So if that's what you mean about me testing my limits, I'm in trouble. I can't just sit here and eat everything in site while not working out.
I do plan to have my blood drawn mid-July (Decadron gone and thoroughly flushed out by then) and I don't want any bad news. Yes, I'm sitting here looking at the remodeling job, including my two gyms in my house that I want re-do and -- I can't do anything. I'm gonna get fat.

It was a cheese steak sub and sweet potato fries too. I destroyed it. Then slept like a baby. BTW, I still had problems eating it and swallowing it but GD it after being starved for days. So what do I do: chicken broth for 4 months, day in and day out? I also ate a few cherry italian ice's. I'm sure they're loaded with sugar. What do I do? Help!!
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straydog
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Posted 6/11/2022 7:24 AM (GMT -7)
The Decadron increases the appetite, sorry I forgot to mention this, calling for late food, yep that's your culprit. You need start back on your regular diet, try a small bite of something, if it gives you difficulty put it through the blender with small bites. You need good healthy food, this promotes healing, not chicken broth.

No, I was not talking about your eating habits when I said I suspect you are going to test your limits.

Rather than trying to order something online, why not visit a drug store & talk to a pharmacist? He/she can advise you on the silicone patches, however, I do not recall members ever being told to use silicone patches. My husband was not told to use silicone patches after his back surgery. The top & bottom of his incision took longer to completely heal, once the glue came off they were not healed. We were told to keep everything clean & dry.

You are hiring people to work for you, let them do the work that's what they are being paid for. If you need something moved, let them move it, tell them you just had surgery, they will be more than happy to oblige. I am guessing you live in a house, go outside & get some fresh air & sunshine while it's cool. Take some walks in your neighborhood.

You sound like you are obsessed with thinking you are going to put a bunch of weight on especially if you are not working out like normal. You are getting too hung up on this, it's not constructive thinking. You need to learn how to pace yourself.
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Texas4Life
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Joined : Mar 2022
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Posted 6/11/2022 10:07 AM (GMT -7)
I gotta remember what my regular diet was...lol. Fair enough. Mostly salmon, fruits, veggies and broiled/grilled chicken. Protein bars and shakes. But I can't eat those just yet. They're thick and hard to chew. Hmm...lots of healthy salads with extra protein (chicken, etc.)

No I thought you were talking about me testing my limits when it came to working out lol and weightlifting.

The surgeon's suggest was Vitamin E (oil?) AND silicone patches. But mostly Vitamin E gel or oil. He offered no specifics. I offered the silicone patches up and he was fine with them, but you feel like they are not necessary?

I forgot to ask him if I should keep using the chlorohexidine, now that surgery is over. I still use it because it is supposed to keep all super microgermicidals down to their lowest levels...and because I bought the bottle and it's half-used. I felt like I might as well use it all up. Did you use keep using it til it was all gone or what?

I'm definitely NOT doing the work. I'm paying the contractors and while they work, I'm icing my neck. I have no intentions of lifting a hammer or anything. They all know I just got out of surgery. They are all happy to oblige including scrubbing all the foot traffic from the carpet after they are finished.

The funny thing is, I have been outside A LOT, but mostly because of running around from doctor to hospital. But that's not what you meant. I haven't just sat outside an relaxed yet. I haven't taken walks yet. I've not gone to the beach in more than 20 years. I seem to remember Taller Now or someone else, taking a mile walk that backfired on her and she had to have a posterior surgery, or am I mixing her up with someone else who over did it? Do you remember that person who after surgery ran a mile or something and then came onto this site in sheer pain? By nature, I'm an outdoors person, I just am an "aggressive" outdoors person, i.e.. whitewater rafting, hiking, marathons, fishing, etc. I just have to find something to balance me out.

Yes! you are right I'm obsessed with thinking about putting on weight. Why do you think I would not put weight on if my eating is "returning" and I'm not burning calories to offset my caloric needs? Is it your belief through experience that my body is going to use the nutrients to heal and not go to my gut. I'm really curious what your thoughts are here. I am looking forward to having this constructive conversation with you on this topic. I'm just curious how my body is going to react to an increase in food while I heal, especially as the dysphagia gradually decreases and I get more comfortable eating again. Really interested in a substantive dialogue on this subject.

In the meantime, back to my iPod.
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straydog
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Posted 6/12/2022 9:13 AM (GMT -7)
Peel the skin off of the salmon & chicken, shred it with a fork & then cut them in tiny pieces. Above all chew & chew some more. If you handled the philly sandwich you should be able to do this with the chicken & salmon. You will have to adjust how you eat for a while, it may feel like a marathon eating a meal. If you find veggies too thick, add a little water. Eating after this surgery people sometimes have trouble with swallowing stuff too thin or stuff to thick. Perhaps do a google search on foods to eat after having this surgery & see if you find some recipes.

I looked at the old thread & could not find anyone walking a mile. I did see that Taller Now went on a longer walk & had trouble. After that she stuck to making her walks much shorter. This was after she had the ACD&F, her last surgery was posterior.

Unless you are eating a bunch of junk food, not eating healthy you shouldn't put on additional weight. As you continue to heal you will be getting more active, just listen to your dr. By the way, Decadron can cause temporary weight gain like any steroid.
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Texas4Life
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Posted 6/12/2022 10:19 AM (GMT -7)
That's what I have learned that I have to do with the salmon: flake it. That works. Cutting and significantly moistening the chicken with a wet paper towel, to ensure it holds enough moisture to chew on it and get it down. For veggies, I'm having them sliced even more thin and (gulp, waterize them) in their own juices, else I'm not gonna be able to eat them. The sub roll on the philly cheese steak was thick and I admit that all but allowed it to cut off my airways (smile!) I'm just worn out from fruit smoothies. I'm eating a lot of Luigi's italian ice. They are cold, liquid, easy to shove down and finish quickly. Like I said the only issue there is that they are probably packed with a lot of sugar. No, I usually eat a lot of fish, chicken, veggies, fruits (!!!) and drink tons of water. Honestly I think my outcome was pretty good cuz I kept in decent shape. I ran 30-50 miles a week and played semi-pro volleyball for fundraising for MS, muscular dystrophy, alzheimer's, etc. I hike and white water rafting and really try to stay active. That's why being "down" is so hard for me. I'm not used to not being active and helping people.

That's the thread where she said she went for a walk and got into trouble. That's the one. Thanks for researching it. I'm still too "new" to the surgery. Little amounts of anything causes pain. So I do things in spits and spots and then, lay down for a spell.

That Decadron is nothing but trouble. Everyday is a new thing about that drug. I still have slugglishness. Getting up in the middle of the night after not sleeping. It's like the drug from hell.

I still have a ton of Gabapentin left. What can I expect as I go through that large bottle of drugs? BTW, I'm icing with a vengeance now while I listen to my iPod, while plotting my contractor's remodeling jobs. (smile).
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straydog
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Posted 6/17/2022 9:46 AM (GMT -7)
Checking on you, how are things going?
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Texas4Life
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Posted 6/18/2022 3:08 AM (GMT -7)
Well, the meds are taking their time to work. I guess you'd say that's no surprise. Those two have not yet talked and he is not happy with how things turned out, from the contortions on his face: made copies of documents, asked me for medical reports (same as you did) and when I told him I asked for all of the paperwork, he got even more disturbed/angry looking (?). I get the feeling (from you in our previous chats and now from him) that there should've been more documentation/reports that I asked for but did not receive. Like you, he was also concerned about the blood flow issue and had some questions. He took the business card of the POC to call while the surgeon was on vacation and photocopied that too (FWIW).

I'm still not sleeping that well/at all. I'm so exhausted and tired ALL OF THE TIME Susie. But I don't get sleep. I don't get as impatient as I did before, but I still feel emotional -- a lot!! My eating has skyrocketed; I'm hungry all of the time. And want to eat everything in sight. I'm icing so much, that I put two packs on either side of should with a t-shirt on and go to bed like that. I'm going to IKEA a lot and that requires a lot of walking around.
And then I get exhausted.

I went to see my pain doctor (referring doc) this week. He is going to up the Valium from 10 mg to 15 mg to handle the spasms. They are getting out of hand and moving across my entire should blades. Once he talks to the surgeon or his assistant, he is most likely going to make additional changes.

Other than that, I've only had to have one of contractors do the Heimlich maneuver on me 3x to stop me from choking,
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straydog
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Posted 6/19/2022 6:44 AM (GMT -7)
By chance did you ask the PM dr about the need to continue with Gabapentin? If your actual pain from surgery is better & the neuropathy is gone, I would be asking if it's still necessary.

I know with Prednisone it has a half life to it, I am not sure about Decadron on how long it stays in the system. Keep drinking water to get it completely flushed from your system. The increased appetite we've already discussed. Go online & look for low calorie snacks if you can't come up with any on your own. I know I sound like a broken record, but all of these side effects are normal from the drug, but they are temporary, they will go away.

You went into surgery thinking it would be the usual fusion surgery. Instead, it didn't turn out that way. That has put you in a tail spin, kind of like having the rug pulled out from under you, I understand. On the flip side of things, you are sabotaging your own recovery; "I've been going to IKEA a lot & walking around & then I get exhausted". I understand you have no choice in driving to a dr appointment, but you need to stay out of your car as much as possible. A minor fender bender has potential of messing up your neck very early into surgery. I don't know, perhaps your dr wasn't specific with you enough or his post op instructions are vague. You can read hundreds of old posts on here about members having this surgery & you will not find 1 saying they were out shopping this soon after surgery or driving a car. I mean everything in a kind way, I am not trying to be rude.

Hopefully the increase in valium & you curtailing some of your activities will give you relief with the muscle spasms. Take care of yourself.
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Texas4Life
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Posted 6/19/2022 2:35 PM (GMT -7)
I still have C4-C5 pain snd spasms that I suspect are not part of my IKEA adventurist. I can’t stress how helpful the ice packs have been m. They are downright wonderful,

I feel like when I take the Gabapentin, I can open doors easier/better in a normal fashion. I can tell when I take it and when I don’t. The Valium has helped immensely and I am starting to get my sleep back, albeit, not in the normal wat. I woke up at 0500 like everything was normal, had a vegetable/fruit smoothie and then next thing I know, I woke up and it was 1400.

In my entire life, I’ve never done that.

I think both of us knew that me being “inactive” was always going to be a challenge. I can’t sit in bed all day for weeks doing nothing. I confessed about my trips to IKEA to be honest and demonstrate I am being challenged in this area. Maybe in my own way of asking for help.

That said, I am hiring new contractors this week to help with the rest of the work that needs to be done. The bathroom is finished andd so the dining room is 1/2 finished.

Post Edited (Texas4Life) : 6/19/2022 7:01:15 PM (GMT-6)

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straydog
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Posted 6/20/2022 12:09 PM (GMT -7)
Yes on the ice packs being very helpful, everyone says this. When my husband had his back surgery he was sent home with a wrap and we put ice & a little water in what looked like a small cooler. A small hose hooked to the wrap & circulated ice cold water, he said that helped more than anything. I also had those with some knee surgery, amazing gadgets.

No one should ever lay in a bed after surgery, lol. One of the biggest risk after surgery is a blood clot, this is why they have people up within hours of surgery. People have to be creative & remain active sensibly. It just takes time & patience which can be difficult for some people. Everyone is wired differently.

You are seeing improvement & that's encouraging!
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Texas4Life
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Joined : Mar 2022
Posts : 59
Posted 6/20/2022 12:58 PM (GMT -7)
I am seeing improvements in some areas. I'm not completely out of the woods yet as I still have some symptoms with C4-C5 issues. I still do not have complete control of my left hand/left thumb. I have a hard time turning door handles and doing things with my left hand. I hope you tell me that that is normal 3 1/2 - 4 wks after surgery.

The ice packs and Gabapentin are holding me for now.

Anyway, I took a quick trip to IKEA and only spent 5-10 mins in the store and then left. Other than that, I am waiting to hear back from the laundromat when all of my clothes are done so they can be picked-up. Otherwise, I've done absolutely nothing all day long.
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