T10-pelvis tomorrow morning

[titaniumed]

Ok on the BMP.....It's expensive stuff....but works well.

I hope the tightness has passed some....or at least reduced some. Pushing the limits of exercise in recovery can be so tiring.

A hot shower or hot soak will help. I would soak, then shower, then go to bed.

Your gait will improve in time....always think ahead.

I keep threatening to make planters out of my braces but it hasn't happened yet. I have 2 of them in my closet. I have a friend who is missing a leg. Years ago, he had around 15 wooden legs in his closet since we do grow. He could have used them for fence posts but I think he donated them. I will have to ask him.

Hang in there....I see you are 4 weeks today.

Ed

[Tina_R]

Starting to feel like I am getting my gait back, walking is starting to feel less robotic thank god.

Can you describe what it means that walking felt robotic for you?

I have had trouble walking since my two surgeries a few months apart. I don't have the good balance anymore that normal people take for granted and that I had pre-surgery. And I feel that parts of my limbs and joints are either weak, strained, or stiff, and not under my complete control. It varies in intensity. At its worst, rarely, I walk like a toddler, with my palms up, to keep balanced. Or slowly and gingerly like a very old person.

If it's the same feeling, you seem to be getting over this and I'm not. My surgeon did an MRI and sees nothing wrong, no pinched nerves. I'm going to see a neurologist.

Not trying to usurp your thread entirely, but does my description sound like what you meant by "robotic"?

[LindaRacine]

A hot shower or hot soak will help. I would soak, then shower, then go to bed.

Please check with your surgeon's office before you get into a bathtub. Many surgeons restrict patients from this activity during the early recovery period.

[JScoli91]

Ok on the BMP.....It's expensive stuff....but works well.

I hope the tightness has passed some....or at least reduced some. Pushing the limits of exercise in recovery can be so tiring.

A hot shower or hot soak will help. I would soak, then shower, then go to bed.

Your gait will improve in time....always think ahead.


Hang in there....I see you are 4 weeks today.

Ed

The tightness is starting to dissipate. I think it’s just the fact that there has been a MAJOR overhaul of a lot of bones including my pelvis and everything is still settling out into its new positions. I have confidence that over time it will be a long forgotten symptom. I still have tegaderm covering my posterior incision since last week they only took staples out and left the sutures in. I get those taken out Friday so I am hoping that once I am completely tegederm free I will be allowed to soak in our tub and maybe even walk back and forth in the shallow end of the pool. It’s been 103 F the past 3 days here so it would be nice to do a little bit of aqua walking. I’m kind of scared of soaking in the tub, we have a 6’ soaked tub and I’m scared that post fusion I won’t be able to lay comfortably in it.

[JScoli91]

Can you describe what it means that walking felt robotic for you?

I have had trouble walking since my two surgeries a few months apart. I don't have the good balance anymore that normal people take for granted and that I had pre-surgery. And I feel that parts of my limbs and joints are either weak, strained, or stiff, and not under my complete control. It varies in intensity. At its worst, rarely, I walk like a toddler, with my palms up, to keep balanced. Or slowly and gingerly like a very old person.

If it's the same feeling, you seem to be getting over this and I'm not. My surgeon did an MRI and sees nothing wrong, no pinched nerves. I'm going to see a neurologist.

Not trying to usurp your thread entirely, but does my description sound like what you meant by "robotic"?

I don’t feel that my balance has suffered or been depleted. I guess by robotic I could also say “dis-jointed” or not as fluid as before surgery. I don’t know if it’s me being too analytical too soon after surgery but as I walk I feel like the fluidity of the action of walking isn’t there yet. It’s not the end of the world but I would hate to lose a fluid gait. I have noticed though that as I walk, if I’m not consciously paying attention to it my feet as I walk tend to flare out to the right and left respectively instead of point forward. I’m hoping that this will end over time or I can “train it away” with PT

[Tina_R]

I don’t feel that my balance has suffered or been depleted. I guess by robotic I could also say “dis-jointed” or not as fluid as before surgery. I don’t know if it’s me being too analytical too soon after surgery but as I walk I feel like the fluidity of the action of walking isn’t there yet. It’s not the end of the world but I would hate to lose a fluid gait. I have noticed though that as I walk, if I’m not consciously paying attention to it my feet as I walk tend to flare out to the right and left respectively instead of point forward. I’m hoping that this will end over time or I can “train it away” with PT

I'm not sure of the role of physical therapy after surgery. How soon are they going to start you on physical therapy, have they said?

[titaniumed]

Just stumbled across this video with Dr Krengel talking about some of the things we have discussed on this thread.

It's nice to see there are some good scoliosis videos being made.

https://www.youtube.com/watch?v=Jdrv_x7cTRQ

Ed

[JScoli91]

I'm not sure of the role of physical therapy after surgery. How soon are they going to start you on physical therapy, have they said?

I had another appointment today, this time to get the last of my stitches out; what better way to celebrate 1 month into post-op life than being bandage free!?!?!

We did some more films and things still look really good. The plan now is carrying weight restriction is limited still to 20# and they want to see me in 2 weeks. I brought up my concerns about my gait and about my toes tending to flare out as I walk unless I focus on it. They said that all of that can be retrained and worked out with PT focusing on leg and hip strengthening now that my pelvis is starting to settle into its new arrangement. In 2 weeks providing I feel good and things still look good internally I should be able to start PT for everything from the hips down.

[titaniumed]

Hi Jessica, I see you are 5 weeks today and wondering how things are going.

We get pretty weak after these surgeries, but it comes back in time.

How is the pain? Are you off meds?

I mentioned about taking a break while walking and pushing through the pain....I would imagine you are at this stage.

Years ago, I posted about walking the catwalk with erect spine, not looking down so much with head up. We all become models walking the runway...Your in pain and you have to smile even if its forced.

Hang in there

Ed

[JScoli91]

Hi Ed, things are still going well!

As far as meds...I attempted going from 10mg of flexiril 3x per day to 2x per day and the nerve pain was RAGING! So I said, “you know, it’s not addictive and it won’t constipate me, so why screw up a good thing” and was quickly back to taking it 3x per day and I feel good. As far as the dilaudid...when I switched to taking 2mg 4x per day I was so nauseous and in so much pain that I contemplated going back up to 3mg 4x per day but then my PA reminded me I can supplement it with Tylenol and after doing that I feel so much better. I will continue to supplement it with Tylenol even as I go down to 1mg 4x per day as the we move into the weekend. Taking the weaning off dilaudid slowed now since the percentage I am eliminating is higher now than before when I was originally moving from 6 to 5 to 4 etc.

I am definitely listening to my body more than I have ever before in my life and respecting it. It’s amazing once you are forced to do it, how in tune you get to even the little signals your body sends. In part, I would rather go through recovery with people telling me to slow down as compared to people having to tell me to do more and not be so stagnant, does that make sense? I have been taking short trips into town for groceries, go to the bank, etc. The other day I drove into the neighboring city (40 minute drive) and shopped all day and had an appointment or two. I felt great the whole day but by the end of the day the motion of getting in and out and in and out of the car is what I physically felt was not good for me by the end of the day and I was fully reclined in what once was my deceased grandpas power recliner.

Being a sideline mom has been the hardest part. I am limited in motions I can and should do when it comes to being an active and engaged mom to our 1 and 3 year olds. Our 3 year old wants me to get on the floor and play with him; however when I explain and remind him why I can’t right now, at least there is enough brain power there for him to understand why, respect it, and find other ways for us to spend time together. The 1 year old however; she still isn’t crawling or walking (she was a 6 week preemie) and the hardest part with her is when she is alone upset on the floor without me there due to my limitations or my husband there because he is getting dinner ready, etc. it breaks my mom heart to not be able to be more involved like before, but I have to remember it’s only temporary.

I’m used to running around at a certain pace, taking care of a lot of things and a lot of people; having to in turn respect the fact that I just can’t afford to right now due to the risks of what could happen is the killer. I am definitely finding out more about myself in different ways than I thought I would.

[titaniumed]

Taking the weaning off dilaudid slowed now since the percentage I am eliminating is higher now than before when I was originally moving from 6 to 5 to 4 etc.

I see....I know where you are at and it's not easy. The final cut from opioids is the hardest part. Keep your doctor informed. Keep daily notes.

Here is something to look at and know about. The dark side of opioids.
https://journals.lww.com/painrpts/fu...20hyperalgesia.

Basic science provides a rationale for the clinical observation that opioids sometimes increase rather than decrease pain. Central sensitization (hyperalgesia) underlies pain chronification, but can also be produced by high dose and high potency opioids. Many of the same mechanisms account for both central pain and opioid hyperalgesia.

What has emerged from this clinical “experiment” is that higher doses and more prolonged continuous use of opioids increase the risk of adverse effects for individuals, including overdose and death, falls and fractures, road traffic accidents, endocrinopathies, chronic constipation, lack of disease resistance, neonatal abstinence syndrome for offspring, and refractory tolerance when treating acute or end of life pain.


I didn't think about about lack of disease resistance. Sounds pretty important with what's happening in our world today.

If you can transfer to tylenol, that sounds good. Your attitude is excellent.

I need more time on my reply.

Ed

[JScoli91]

Everything of what you quoted and said in your reply makes sense to me. All the more reason to put them far, FAR behind me. My goal is to be off the dilauded completely by the September 1st at the latest. I spent the vast majority of today parked in my once-grandpas power recliner just resting my muscles and joints and bones. Everything today from my waist down just felt like I had run a marathon the day before (not that I know from experience what that feels like, I mean running for fun? Seriously?) haha.

I did today realize/remember that I no longer am able to isolate any singular point along my spine or pelvis. How did I remember this? Well, a bit of backstory; I actively taught and participated in swing dancing and ballroom dancing in college (tango, salsa, waltz, belly dance, etc.) I tried to salsa today and realized I couldn’t “pop out” my hip or isolate my hip to get that sassy tango flare. I had to take a moment to “grieve” this loss and realize that for good reason, I will now have to make due with being more limited in how I dance or get groovy or get jiggy with it. More time to perfect the embarrassing mom dancing for my kids when they get older?

[titaniumed]

I wouldn't set a timeframe....my surgeon figured a 1 year recovery timeframe in my case, and I figured 2 years....I would be ready for the worst and hope for the best. I hope this makes sense.

I never even thought of a medication timeframe, no dates were ever set, it was one day at a time with my body calling the shots....Today, I still don't know or have any idea if and when I will take any NSAID's again, there is no predicting if and when I will have a soft tissue flareup. Once again, it's one day at a time. I have not taken any diclofenac since I was in South America in December. I have read that they can contribute to kidney stones which I am afraid of, and drink a lot of water as its great at dilution. Please realize that these meds are amazing. They help tremendously when nothing else works. Been there, done that over 18 years now.

Knowing when to take meds through and how long is the trick.....knowing exactly when to quit or taper down is a delicate process. Knowing about the side effects, complications, liver and kidney damage etc that can result.....also knowing when opioids increase or exasperate nerve pain through central sensitization. Dr Joshi explains this in one of his videos. It's in one of my threads or I can find it and post it for you. He is a leading pain expert and an anesthesiologist.

Another thing is that actions, physical or chemical (and diet) that were done yesterday can have an effect on you the next day. If you over exert yourself, you pay for it the next day. Medications are also like that. It's like a delayed biochemical experiment. For example, too many opioids taken yesterday and your extremely constipated tomorrow....nerves also get inflamed, and the fusion process is supposed to be painful. I have no idea what this feels like, you do serious spine surgery and it's hard to pinpoint pains that are produced from 50 areas. You can heal in 30 areas, improve, but still have pain. It's hard to judge what is happening sometimes. It's also really hard to figure out exactly where pain is being produced but doctors and surgeons are usually pretty good. My surgeon amazed me several times.

`Since you have been driving around, it seems like your pain isn't too bad.....It's hard to drive or do anything when heavy neuropathic nerve related pains hit hard, it becomes survival mode taking all efforts to be as still as possible hoping the inflammation drops. Extreme nerve, nerve root or spinal cord pain is devastating. It's on with a vengeance, or its off with no in-between setting. Hot water immersion helps tremendously if this happens. 106 degrees F. Drink plenty of water if you soak, dehydration can result. Its why the health authorities don't want small children in hot tubs. They lose a higher percentage of water than adults do which creates problems.

You shouldn't drive on meds, you know that. If something should happen, bodily injury "with yourself or anyone", it can get extremely serious. Should it go to court, you will lose. Insurance companies can also use this as an excuse not to pay. I have seen this happen in an industrial accident.

Your diet is extremely important right now. I used smoothies after I terminated and replaced opioids with nutrients. I came out of the hole fast, but it was painful.

There are detox programs available for those struggling with various substances....This is good to know info, there is help out there.
http://www.rapiddrugdetox.com/detox-...ilaudid-detox/

Ed

[Tina_R]

As far as meds...I attempted going from 10mg of flexiril 3x per day to 2x per day and the nerve pain was RAGING! So I said, “you know, it’s not addictive and it won’t constipate me, so why screw up a good thing” and was quickly back to taking it 3x per day and I feel good. As far as the dilaudid...when I switched to taking 2mg 4x per day I was so nauseous and in so much pain that I contemplated going back up to 3mg 4x per day but then my PA reminded me I can supplement it with Tylenol and after doing that I feel so much better. I will continue to supplement it with Tylenol even as I go down to 1mg 4x per day as the we move into the weekend. Taking the weaning off dilaudid slowed now since the percentage I am eliminating is higher now than before when I was originally moving from 6 to 5 to 4 etc.

Do you feel any increase in pain when you lift things?

[JScoli91]

Do you feel any increase in pain when you lift things?

I wouldn’t say I feel an increase in pain when I lift but more so tightness in my low lower back and pelvis. I am technically still in the no BLT zone of recovery so I don’t lift much. My carrying weight limit is up to 20# though, but I don’t push it. I’m listening to what my body tells me I am ready for, if and when it is. I think the greatest weight I have carried is 2 milk jugs one in each hand.

Ed, all good info. Only on 2mg now so I will be taking it slow getting of dilaudid entirely. The pain I have now is no where near as painful and no where near as unrelenting. I definitely feel like it will be pain that won’t last long term and is present only because of surgery, tissue inflammation pressing on the nerve etc.