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Well, I'm going into surgery tomorrow and pray everything goes well. Thank you all for the tips and information. I feel pretty well-informed and educated about the surgery and what to expect and have prepared some for recovery. Have a wonderful day tomorrow and I'll post when I can.
Hello,
My surgery was 10 days ago and I finally feel like getting out my laptop to post. Surgery went approximately one hour longer than expected, but it went well. It was a multi-level fusion from T9-pelvis with pelvic anchors, correction of a 36 degree thoracic curve and 60 degree lumbar curve, correction of a back bump due to a spine twist.
The first few nights were awful due to medical staff trying to get my pain under control and very little sleep due to them in and out of my room often (checked my blood sugar every 4 hours and administering IV and oral medication at different times). I had several PAs, nurses, and nursing assistants over that week and was discharged from the hospital on day 7. I've been at home since Tuesday, and started at-home PT today through home health.
Jen
Good to hear from you and glad it went well. It will take time to feel better. A lot of naps and good food.
Congratulations Jen...
The first few weeks can be a challenge figuring out pain, feelings, emotions, coping etc...It's an exercise in resilience skills, adapting and bouncing back patiently....Your starting with your new spine.
I guess nothing good ever happens too quickly.....and these recoveries are the similar to many things all of us go through.
There is a lot of healing happening right now so there will be strange pains and feelings to deal with....All of this should pass and improve in time. I had pain improvements come in steps. 2 weeks would pass and I would feel 10% better, maybe sleep for an hour longer....Sleep is so difficult. I was so exhausted, sleep became my priority. The rest of the time, I was walking since standing up was the easiest position for me....
Write everything down...
My signature used to state: Age 49, the new 39. Looks like I have to change it once again....
Ed
Glad to hear you have come through to the other side.
Congratulations!
I hope you continue to feel better!
I sure can emphasize with the lack of sleep at the hospital, especially ICU. Blood pressure machine every hour. Beeps...etc. All that on top of the pain.
Best wished for continued improvement!
Thanks, Jackie! My physical therapist said the same thing - take lots of naps! I am all for that because, as you all know, we get worn out quickly. :)Quote:
Originally Posted by jackieg412
Thank you all for the well-wishes! You all were spot on about nights being the worst, and I was definitely hoping to get better sleep once I got home. Ed, you are right about the strange pains and feelings. Occasionally it feels like my lower back popped 2-3 times and I can't figure out if it's a good pop or not. There is typically no pain or lasting effects, so I assume it's ok. I am completely surprised at my level of mobility! Prior to surgery, I assumed I would be laid up in a bed for 2 weeks and on so much medication that I would not be coherent. I am able to walk with the assistance of a walker, started at-home PT 4 days ago, and am surprised that I am able to move my arms to do most anything (including putting on a T-shirt).
My two-week follow-up is on Wednesday, and the staples are scheduled to be removed at that time. Attached is my before and after X-rays (the after was taken 4 days post-op).
Jen
Attachment 2101
Sounds like you are doing well. The xrays look great. It is slow but keep walking . it will help.
Jen, I see you have 4 rods.....how very Eiffel....(Engineering humor) You also have long pelvic screws.
I can't remember if my fusion mass popped during my recovery...after all, it's been 14 years. I used to pop my T1/T2 level just above my fusion mass by reaching over my shoulders and pushing forward on the top of my fusion mass looking up. These pops and also my neck pops have drastically reduced since I starting taking vitamin D (The sunshine vitamin) 1000 IU/ day during my COVID isolation in July 2020. (bat suit on, upside down hanging in closet) I would ask about vitamin D when you go in tomorrow and see what they think...(Since your blood work is recent) Vitamin D is mentioned in the scoliosis world and also on the dental sites.
It would be a good time to find out which hardware system you have and what it's made of....(for future reference) Your spacers also....Mine are PEEK spacers which is a type of plastic which is common. I have Synthes Pangea System made from titanium alloy. The alloy is Ti-6Al-7Nb. Some PEEK spacers are sprayed with a titanium coatings.
https://en.wikipedia.org/wiki/Polyether_ether_ketone
https://en.wikipedia.org/wiki/Ti-6Al-7Nb
There comes a point when you will not need your walker. You don't want to be "leaning" over your walker....you want to be standing up straight, head up when walking. The walker is used to make sure you don't fall. If you can guarantee that you won't fall, you don't need a walker. We do get used to perfect posture, and some people comment on it. I kept my walker by my bed since getting out of bed and standing up is a precarious time on strong medications. I would stand there for 5 minutes to make sure the head was clear before taking the first step.
Everything sounds good.... Staples come out easy.
Ed
My new spine has 4 rods also.. It could be a different way of doing. the scoliosis surgery. Also, the type and amount of hardware is listed on 'my chart' on my medical record. There is even the serial number listed. So it is easy to get this information.
I had no idea.... I don't remember seeing your full or lumbar x-rays. It seems that most of your troubles have been mid to high in the spine. The car crash x-rays with the broken rods in your neck are hard to forget. The T1 PSO you had done is hard to forget.Quote:
Originally Posted by jackieg412
It's funny how one might think that most of the brunt or burden or wear would be on the lowest levels of the spine....but that's not true. Every level presents its own set of challenges....and wow, is it ever complicated.
Over the years I have heard from people that scoliosis is "just a curved spine". I always have to take a really deep breath when I hear that one....
Ed
Hello! This Tuesday is 7 weeks post-op, and my most recent follow up appointment was last week. New x-rays showed all equipment is intact, nothing broken. They said I am healing well, and my incision has closed up. So far, so good. I hate to type this because I don't want to jinx myself, but the only complication I have had so far is extreme constipation.
I hope you are all doing well!
Hello, Ed! So much of what you described here, I also experienced (or am experiencing). After about 5 days in the hospital, I was so anxious to get out! I was doing everything I could do - taking medication on time (it helps that they bring it to you), eating most everything they brough me, working hard on my PT. So much so that the remaining drain was still producing too much for me to be allowed to be discharged from the hospital, so they put me on bed rest on day 6. I was allowed to get out of bed only to use the restroom. Thank God it worked, and I was discharged on day 7!
I would love to have gained 4", but I'll take the 2" I got. I was approximately 5'4" for as long as I can remember, then 5'2" just prior to surgery, and almost 5'4" after surgery.
My appetite increased a little at approximately 1 month post-op, and I am trying to eat only healthy foods (which I haven't been entirely successful at). I came home with a better looking mid-section, due to the 2" lift I got, so I would like to maintain and improve that.
I seem to be constantly either hot or cold, fluctuating often. Due to my family being in the house, I am unable to adjust the thermostat as I would like, so I am constantly putting on and taking off a hoodie or sweater. I almost always have a blanket on me while on the couch, use a heated blanket at night in bed, and have thick socks on. I noticed that if I use the heated blanket over my whole body, my back gets very hot and actually hurts and feels very inflamed (although it doesn't look inflamed). My left foot is almost always cold, and at times is freezing cold from the inside out. The heated blanket helps.
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Jen, Sounds good....wanted to keep this on your thread.
Once I terminated opioid's (Percoset)all the symptoms of that med stopped. (except for surgical pain) My main reason was because of constipation and repeated vomiting which was worse. Lower GI lockup. You can ask about termination and see what they say. You have to call to get permission to cut any pills. Percoset is one you can cut. Use a pill cutter and cut when taking the pill. Do not pre-cut pills. Spacing out times is also a method of reduction. Now is the time where the notes are important. Documenting exactly what you are taking and the times.
I quit and the pain rose up very high. About 36 hours later, I got through that period of hell and never looked back as the pain dropped off quickly. I posted a scientific paper about this many years ago. I can look for it if you like. I used hot soaks and hot showers to get through it all. Hot soak, sleep, repeat. Use the hot water to get out of pain, and then try to get some sleep.
Titration of opoids is balancing analegesia vs side effects...You have to decide which is worse when side effects rise and pain drops. Its never an easy thing. I walked through the pain....water and walking. Water and walking promote perystalysis or movement in the intestines. You dont want to get locked up. When I had that happen, I drank a whole bottle of mag citrate and chased that with a gallon of water. Some here years ago reported using mag citrate like sipping whiskey.....but that's not per the instructions on the bottle. I have no idea how that works. ???
I have been sick. Flu sick..... Got the COVID shots but not the flu shot this year. My head is going to explode.
You did the right thing....your lumbar spine was wasted.
Hang in there
Ed
Thanks, Ed! I have a new question, so I might start a new post (if that's how this works...I'm not very forum savvy).
But with respect to your last comment and some of my updates..
They had me wean off of Oxycodone (1/2 doses) and switched me to Hydrocodone, but I feel like the Hydrocodone does not touch my pain. I may as well take Tylenol. I have had trouble sleeping and difficulty focusing during the day. My brain seems so foggy lately. I can't hardly focus on my school work much less every day chores or physical therapy. I'm getting to the phase they warned me about where it's getting discouraging because I'm starting to put weight on but am unable to work out yet. I do PT and have basic exercises at home, but not able to go to the gym yet or do cardio.
This was what I wanted to discuss on another post and ask if anyone else experienced similar issues. The foggy brain, inability to focus, lack of sleep, increased pain when weaning off the first medication, lack of response on second pain medication. Mostly the foggy brain and inability to focus. I'm considering dropping one of my masters level classes because of it. The material just isn't getting through, much less retaining it.
I was warned that the 2-4 month mark might be rough but to hold on and I will see progress again soon.
I hope you all are doing well, and get better soon Ed! In addition to trying to heal from surgery, I tested positive for Covid (an at home test, so who knows) but was diagnosed with Strep Throat by the doctor. I was sick for two weeks, and that was probably two weeks ago.
After my 2011 spine surgery, I had very similar symptoms when weaning off oxycontin. It took me over 2 months to get completely weaned. The only difference is that I had little to no appetite, so lost weight during that time.Quote:
Originally Posted by scoliosisstory
Hang in there. Hopefully things will improve soon.
--Linda