It's About Time

[titaniumed]

Right now, I just want to go home.

Peter, I know exactly what you are saying.... Spend any decent amount of time in a hospital and the need to get some normality back in our lives kicks in. Everyone in the hospital was great, but this had nothing to do with that. I will admit that I was like a bull in a China closet, and had to get out of there. My powers of recuperation kicked in regardless of pain, regardless of what is right or wrong for the best recovery. Invasive open surgeries make perfect recoveries extremely difficult. The perfect recovery would be no pain, and no meds. I have experienced both.

I also grew 4" ...when you rotate back into society, you will run into people you know that now have to look up at you. A lot of people couldn't believe it. "What happened?" "You know, scoliosis" "What is that?" "Well, It's a long story....."

BMI calculations involve height and since we gained 4", we can now put on an extra 40# and get away with it. (smiley face)
The problem is, I put on 80#. Yikes! My appetite at about 5 months post increased significantly. I don't know why this happened, but it did, I eat like I am 19. If I don't eat, the exhaustion gets magnified. Fatigue is a battle, there is no doubt about that. I lost 40# in 40 days after my surgeries, then gained 80# over the years.

I had my first stepped improvement in pain at around 3 weeks. About 15-20% less pain. Something healed, hard to know where, but a pain producing area healed. All of a sudden this happened like a switch was thrown. Nerves are like that with no in-between setting. On or off. Was it the nerve?, or the inflamed surrounding tissues? We have a lot of that after our surgeries....

Anxious to hear about your next step. It should come soon.

Are you experiencing hot and cold spells? Temperature management? I had my heat up pretty high for a while and set some gas bill records.

If you are cold, here is an amazing video that will heat things up. Iceland May 2021.
https://www.youtube.com/watch?v=ReOI...nTheWholeWorld

Ed

[Twisted Lifter]

21 Days Post-op
Sorry for the length of time between posts. It is really a matter of energy, which is a bit limited these days.
Healing is going well.
I left Bridgepoint Active Healthcare rehab Wednesday morning and am now home.
I can't complain enough about the wait times in Ontario Healthcare, but once in the system, I cannot say enough wonderful things. Amazing professionals through and through. Dr. Lewis is a true genius. Bridgepoint is an outstanding facility to which I was very lucky to have access.
My physiotherapist told me that I was a surgeon's ideal outcome. I feel sore, but the agonizing pain is successfully under control.
I had one little blip early yesterday morning when I fainted on return from the washroom. This got me a trip to Emergency and a good bump on the knee. Fortunately, no other ill effects.
Ed, you are again 100% correct about the thermal variances. I thought it was just me until you noted it. I go from cold to hot and from hot to cold quickly. I wake up in sweat-soaked sheets, but feeling chilly.
I think pain is going down, per your predictions. Most of the time, I feel (again, this is relative) what I would describe as uncomfortable, as opposed to agony, like if I flew to Europe in the middle seat in Economy and the flight was 6 hours late. Not fun, but tolerable.
As promised, I have added my Before and After pictures.
I am working on my walking, which feels different than before. My right arm no longer has the urge to hang out as a counterbalance. My feet and hips are straighter. I am focusing on walking shoulders back but relaxed and head up. I am using a rollator walker not for balance, but to be sure to have a place to sit when I tire when outside of the unit. See aforementioned energy comment!
All in all, I am feeling pretty positive. Feeling sore and tired wears thin quickly, but time will improve this.

[titaniumed]

21 Days Post-op
Ed, you are again 100% correct about the thermal variances. I thought it was just me until you noted it. I go from cold to hot and from hot to cold quickly. I wake up in sweat-soaked sheets, but feeling chilly.

Yeah....lava is hot....roughly 2000 deg F (smiley face) Once I managed to get within 6 feet of flowing lava out in Hawaii and it was like sticking my head in an oven.... Lava flow destruction is one thing, but the gasses that waft will kill you. I inhaled some of that extremely harsh gas and will never go back to any volcano EVER again! That video I posted is probably some of the best footage I have ever seen....

Some lava has titanium in it....Somebody's future scoliosis hardware in the making! (smiley face)

Opoid's are like that also...and I have that love/hate relationship with them....

I cut back hard to due to PAINFUL constipation (history of 9 day paralytic ileus) and respiratory depression. The respiratory depression is scary because you have to actually think about breathing. That sure got me UP on my feet right away walking....and I wouldn't lay down until it passed. During that period I was freezing, and a minute later was melting down....Freezing/sweating, freezing/sweating. I weaned off some extremely powerful meds. The hospital told me that they ran the most powerful medication regiment they had....

https://pubmed.ncbi.nlm.nih.gov/223174/

You mention that you think your pain is going down....and this is really hard to judge with everything that is happening. Upon initiation of pain, surgical or neuropathic, or even a stove burn, can be intense in the beginning and of course our minds are focused on that pain..... After some time, the perception of pain lowers...especially with a stove burn, how much healing happens in the first 30-60 minutes? It's not that bad after 30 minutes in cold water. On one of the neuro sites years ago, it stated that if you think about pain, that's exactly what you get....Watch a comedy or laugh deeply at a great joke and the pain suddenly disappears....Amazing how that works so well...

Intense pain lowers in time and gets replaced by not being able to get comfortable....You spend every single minute trying to get comfortable in scoliosis recovery. If you find a position that's comfortable, stay in that position as long as you can. It becomes the most valuable thing in our recoveries, and we try to get a few winks in if we can. Of course the pain will wake you up, it's just a matter of time, and you repeat this process. The foam topper helps with this as its softer on the contact points. Hot water helps with pain. I took 5, 30-40 minute hot water soaks per day for 90 days. I would check the water temp with a hot tub thermometer. I did not use my hot tub since I was afraid of a fall on the steps. I used my large master bath tub. A regular sized tub is not deep enough since you need to stretch out straight and float. No sitting in a bent position. After a while, I would transfer to a kneeling position in the tub with back straight while the water slowly cooled down. The hot water at 106F would get rid of pretty much all of the pain in 10 seconds. 106 is HOT......drink a lot of water if you do this. A quart of water.

Nice x-rays! You can see the rotation of your vertebrae by the angle of the pedicle screws. Your T9 has the most rotation. Count down the levels from the top at T1 on the right rod. Both screws wing to the left on that level. I have the same thing on my x-rays in my signature. There is a missing screw on T7. I think it fell down my pants leg one day. He he Actually, they didn't have a clear trajectory from wedging after all the years.

Walk like a model. Head up, not looking down....no walker unless you feel you are going to fall. Spine erect, or vertical. When I would do my walks, I would walk one house and back and do it often, a few times per day. If you have your distance set, you limit pushing the pain too far....pushing the pain envelope. Go too far and it hurts! I used ski poles, they are a big help, and also great defense on preventing the big dogs from jumping up at you. Sometimes they know your in pain, older dogs, but not the younger ones...

Be careful with the fainting....If you feel queasy, stop, go down on one knee to soften the blow should you fall.

That was a big T curve. 90 plus and minus 10 degrees....depending on the moon of course (smiley face)

Remember its ok to say pain has increased. Pain is your indicator should something go wrong.

Hang in there...

Ed

[titaniumed]

Peter, It's been 40 days....I hope things are ok....

You would think somebody would have done a scoliosis blues song at some point....

https://www.youtube.com/watch?v=WN-w...=LenneBrusgard

Ed

[Twisted Lifter]

Hi Ed:
Sorry for the silence. I just don’t always think of checking in.
Overall things are going pretty well.
I have had a few hiccups in the form of passing out a couple of times in the early morning hours, earning me trips to the emergency room. Something called micturation syncope. Fancy words meaning fainting while peeing late at night. Brought on by the drugs.
As a result, I am down to once a day with the hydromorphone but am still taking the Lyrica three times a day. No sleep aids which causes my sleep to be much more restless. Nights continue to be my biggest issue. Getting comfortable. Falling asleep. Aches and pain. I do take the one dose of hydromorphine at night.
Pain is abating but still omnipresent. Ribs and spine mostly. Still getting heat waves.
I can do most daily activities in moderation. I have been able to do many more things than I thought I would be able to prior to the surgery. As you probably know, energy is my limiting factor here.
I can walk better and farther than I could before surgery. My lungs feel much better.
I am looking at a graduated return to work after next week. I will be able to work at home for a while but I can only handle 45 mins to an hour in an office chair right now. As you might expect, energy is my limiting factor here.
Like I said, overall I am pleased with my progress and recovery. Certainly could be worse. I can pick most things up from the ground or retrieve them from shelves.

[titaniumed]

Hi Ed:
Sorry for the silence. I just don’t always think of checking in.
Overall things are going pretty well.
I have had a few hiccups in the form of passing out a couple of times in the early morning hours, earning me trips to the emergency room. Something called micturation syncope. Fancy words meaning fainting while peeing late at night. Brought on by the drugs.
As a result, I am down to once a day with the hydromorphone but am still taking the Lyrica three times a day. No sleep aids which causes my sleep to be much more restless. Nights continue to be my biggest issue. Getting comfortable. Falling asleep. Aches and pain. I do take the one dose of hydromorphine at night.
Pain is abating but still omnipresent. Ribs and spine mostly. Still getting heat waves.
I can do most daily activities in moderation. I have been able to do many more things than I thought I would be able to prior to the surgery. As you probably know, energy is my limiting factor here.
I can walk better and farther than I could before surgery. My lungs feel much better.
I am looking at a graduated return to work after next week. I will be able to work at home for a while but I can only handle 45 mins to an hour in an office chair right now. As you might expect, energy is my limiting factor here.
Like I said, overall I am pleased with my progress and recovery. Certainly could be worse. I can pick most things up from the ground or retrieve them from shelves.

No worries....all the adult scoliosis patients here know how trying these recoveries can be.

How interesting on the fainting.....I had this happen "once" and reported it here but didn't know what it was called. Glad you posted.
https://en.wikipedia.org/wiki/Micturition_syncope

After going at 3AM, I collapsed vertically on a ceramic tile floor and just destroyed my ankles. If you do a vertical squat in a freefall, your knees bend, and your feet and toes get pushed up into your shin. I chalked it off to sleep walking. This happened about 4 years ago...(9 years post) No meds and no alcohol....I had to take a few days off of work as I was barely walking.

Another strange thing I had happening sent me to the ER room once due to having these extremely scary choking events....My epiglottis flap would stick and could barely draw air in. After a long slow inhale, I would exhale hard and force the flap to open to resume normal breathing. The doctor went down my throat with a device to look and he told me it looked ok. ??? Then after several years and approx 10 incidents, I figured out that high fatty foods late at night triggered it. I stopped all of that, and the choking events stopped. Go figure...When anything happens, I always evaluate my diet first. When did I eat last and what did I eat?
https://en.wikipedia.org/wiki/Epiglottis

The nights are tough....that's why the Muddy Waters song 40 days and 40 nights fits so well. That harmonica represents surgical recovery pain just perfectly!..... Unrelenting harmonica requires strong medications. (smiley face) Listen to the harmonica again, it's perfect.

You have probably noticed some improvement in pain by now....but that harmonica is still playing.

Here is the Mayo Tapering page. Need to know information when taking opioids.
https://www.mayoclinic.org/diseases-...w/art-20386036

Hang in there
Ed

[scoliosisstory]

I can do most daily activities in moderation. I have been able to do many more things than I thought I would be able to prior to the surgery. As you probably know, energy is my limiting factor here. I can walk better and farther than I could before surgery. My lungs feel much better. I am looking at a graduated return to work after next week. I will be able to work at home for a while but I can only handle 45 mins to an hour in an office chair right now. As you might expect, energy is my limiting factor here. Like I said, overall I am pleased with my progress and recovery. Certainly could be worse. I can pick most things up from the ground or retrieve them from shelves.

I am glad your surgery went well and that your recovery is going well. It sounds like you were in a good position prior to surgery, and that was a big factor in your recovery. Are the nights any easier now?

I am scheduled for surgery at the end of this month. I am a little nervous about this surgery in general, and feel my anxiety level raising by the day. I am doing what I can to mitigate that piece with things like researching more to better educate myself, reading posts on this forum, doing yoga, believing in my surgeon's skills and abilities, and trusting God.

[scoliosisstory]

Does anyone know how Twisted Lifter is doing? It looks like it's been a couple of weeks since he last posted, so I'm hoping everything is going well.

[Twisted Lifter]

Thank you very much for the concern! The Scoliosis community is touchingly caring!
I haven’t been posting much because I haven’t really any high drama to report. I will try to check in more often.
I am doing well overall. I stopped all hydromorphone a week ago, but am still taking Lyrica for nerve pain and my fair share of Tylenol.
I am finally sleeping a bit better. I started back to work in a graduated fashion last week, working from home for three mornings, which I will also do next week. If it goes well, I will do five mornings the following two weeks before leaping back in full time. I was happy to have other things to think about, but by Friday evening, I was truly exhausted, having also attended a few physio and other appointments in between. One big limitation is how long I can sit in an office chair. My employer has offered a professional ergonomic assessment to help get me set up in a comfortable situation.
I have been doing my physio exercises faithfully every morning, including a short whirl on the recumbent exercise bike.
I do take short walks where I focus on the mechanics of my movement, since getting used to that is certainly a major change. I work to be aware of how my arms and shoulders are positioned, that I walk in a natural upright manner, and how my feet/legs swing and land. I try to do it all in a deliberate and controlled fashion.
Pain is blessedly abating, though I am definitely not pain-free. Overall, though, I am very pleased with my recovery to date.
Now, if only I can find whoever lowered my counters while I was away…

[Twisted Lifter]

I am scheduled for surgery at the end of this month. I am a little nervous about this surgery in general, and feel my anxiety level raising by the day. I am doing what I can to mitigate that piece with things like researching more to better educate myself, reading posts on this forum, doing yoga, believing in my surgeon's skills and abilities, and trusting God.

I can empathize strongly with your apprehension, Scoliosisstory. For me, I started getting tired of everyone wanting to talk to me about it all the time. That part wore me out.
I had great confidence in my surgeon, a confidence borne out so far. He made me feel safe in his hands from the start. Your surgeon, like mine has probably done several thousand of operations similar to yours by now. They will be well-practiced. They will have a strong support team around them. They will know exactly what they are doing.
My anxiety, like yours, did rise as the time approached, but belief in the surgically team’s ability allayed it to some extent. Some anxiety is normal, though I know this statement doesn’t really help. Didn’t help me when people said it over and over. But still true nonetheless.
In my opinion, you are doing the right thing to go into it educated and in the best shape you can. I quit reading everything after a while because there was nothing I hadn’t seen anymore.
I am a firm believer that my years of regular exercise are a major contribution to my recovery. I think you are doing the right thing by being in the best shape you can.
I am happy I had the procedure. I breathe so much better and could walk farther with less pain within a few weeks than I could for years before the surgery.
You will come out the other side. Pain will subside, I promise.
I personally will be rooting for you.
You should begin your own thread to allow the Scoliosis community here to support you directly. They are knowledgeable and they will help.
Please keep us informed as you feel able.

[scoliosisstory]

Thank you very much for the concern! The Scoliosis community is touchingly caring! My employer has offered a professional ergonomic assessment to help get me set up in a comfortable situation. Now, if only I can find whoever lowered my counters while I was away…

I, for one, am thankful for this forum as you all have helped alleviate some pre-surgery anxiety, and I have been able to get some helpful insight into what I might expect/experience post-surgery. It's great that your employer is willing to be accommodating. I had trouble with a former employer assisting with accommodations, or even allowing me to sit differently, after my auto accident.
I'm excited to be taller again! I was always 5'4" and am now 5'3". I am shorter than my 16 year old step-daughter and will finally be taller than her! She won't be happy about that haha

[scoliosisstory]

I am happy I had the procedure. I breathe so much better and could walk farther with less pain within a few weeks than I could for years before the surgery. You will come out the other side. Pain will subside, I promise. I personally will be rooting for you. You should begin your own thread to allow the Scoliosis community here to support you directly. They are knowledgeable and they will help. Please keep us informed as you feel able.

It's comforting to read about the successful surgeries here and about people like you who are doing better afterwards and are glad they had the surgery. I am very hopeful that I will feel so much better after I start to heal. I feel like my scoliosis has affected more than just my back - such as internal organs. I am relying on the surgeon and his staff to do the best job that they possibly can, and so far it seems that my surgeon is very thorough and particular, so that increases my confidence in him. I will start that thread as you suggested. Thank you for your support!

[titaniumed]

Peter, It's been 3 months...

What do you think?

Ed

[Twisted Lifter]

Hi Ed:
Interestingly, I just returned from my 3 month check up with the surgeon this morning.
He asked me f I knew before surgery what I now know after surgery, would I still make the same choice?
I believe I would.
I had some very agonizing nights, but overall I feel my health is improved and, while I still have some lingering (though abating) pain, it is different than prior, when it just felt debilitating.
I feel pretty good about the trajectory of my health.
I will see my lung doctor next week for some spiromentry. Then I will have a "before and after" on my lung capacity. Subjectively, they feels better.
I was given clearance to return to the gym (hurray!) so long as I do back-on-bench exercises and do them, in the doctor's words, "for toning, not building". So light weights.
Good news is that all of the screws and rods have stayed in place and appear to have healed well. No adverse numbness in extremities and no weakened limbs.
My traps and neck get sore, giving me headaches, but that is more a matter of adjustment.
Next goal is to be completely off all forms of pain meds, including Tylenol.
Nights are still a bit painful, still affecting my sleep.
Again, no regrets at this point, but it is quite a path to get here.

[titaniumed]

He asked me f I knew before surgery what I now know after surgery, would I still make the same choice?

Interesting, but you know that I had to ask even though I did it myself....It's still a bit early for this question. In adults over age 50, it really takes a year or more, I think that's the general consensus. Our views also change as we recover and time passes. Many of my thoughts in early recovery were wrong. Thats why I say don't think back, you start new with new ideas, new healing and recovery thoughts.

All my hot soaks ceased at exactly 3 months so the major surgical pains (from my lumbar and pelvic anchors) had lightened up quite a bit. I was off all meds at 6 weeks. (The hard way) I don't think there is an easy way....After awhile, after you are fused, you can take NSAID's again, but you should ask because they can inhibit fusion. I was given permission for a Celebrex at 9 months when I did my shoulder rebuild. I only took one pill and went into PT right away (For shoulder) They didn't want my shoulder freezing up. That was a minimally invasive shoulder procedure, not open.

Sleep disturbances, sleeping times and the dreaded FATIGUE took me a long time.... The FATIGUE!!! I don't know what to say about this because of age. People our age without implants take naps. I have always wondered about the electrolysis and our immune systems battling implant biofilms....perhaps unprovable or at least at this point. It would be interesting to see if any others with NON spinal implants suffer from fatigue.....I don't know.

The Gym....Hmmm...What to do? 1#, 2# or 3#...(smiley face) One of the things I noticed was that the arm bike was beneficial in "toughening up" the paraspinals in the thoracic. I would pedal with my arms forward and backward with NO resistance, or 1# of maximum force. You want to keep things really light for some time....Pull ups are great for core but I didn't do any until after my shoulder was done at 9 months. I walked on eggshells for a long time. In other words, no forces until I was fused. Soft tissues came later....

There is a big snowstorm happening out here with 6 to 8 feet expected at Donner Summit California by tomorrow night so here are a few skiing videos....I am an old skier and skiing was a big concern before my scoliosis surgeries. I don't think my surgeon really knew what kind of skier I was....but it was something like this...Yeah, maybe a little crazy....
https://www.youtube.com/watch?v=WCQ-...=CandideThovex

https://www.youtube.com/watch?v=75uL...=CandideThovex

To ski like this, your body has to be in top condition....your core needs to be rock. Mikela Shiffrin who is THE BEST ski racer in the world (Male and Female) is headed to the Olympics coming up here soon....She has the best ski coaches available, and they film all her workouts and skiing (All of it) ....and if one looks at these videos, you will see what she does and doesn't do in the gym....Here is one of them. Spine injuries for pro skiers is not good....

Notice, no sit ups....no crunches, and a lot of pull ups.... (with weights around her waist 4:50)
https://www.youtube.com/watch?v=pkIf...WinterSportsTV

In my 2nd year of recovery, (My soft tissue year) the G forces on the slopes were holding me back from my ski partners. Thats core and I really felt it after my surgeries. That took another year and wasn't easy....(and had a pre season L2 soft tissue injury) It was about 3 years when I was skiing a bit wild like Candide, but thought this has got to end. My surgeon clipped my wings so no jumps and no high speed crashes....and the snowfalls drastically reduced after the 2011 season. Does global warming need the science? Not if your a powder skier....

Recovery can be a slow process in adults, but you will get there. The main thing is the pain and conforming to our new pains after our surgeries....Being out of pain or reduced pain makes scoliosis surgery worth it.

Let us know on the spirometry readings....This should be interesting. I don't think my breathing has changed any....but I did not do a pulmonary function test. I can blow out a birthday cake at 10 feet. Ok, 6 feet... 1 candle. LOL

That was a big T curve you had.

Ed