Full Fusion and Cars

[titaniumed]

I recently took a very twisty road trip in the mountains of Colombia that nearly killed me. I was a passenger in the back seat of a Honda CRV which is not a bucket seat, hanging on to each of the 10,000 curves eventually taxed all my spinal muscles beyond belief....I thought my whole spine was going to go into spasm and was lucky it did not since that is extremely painful. My neck took a beating also....I just wanted to mention for those of us fused patients that its imperative that we insist on sitting up front in the bucket seats which work so well at keeping us in the seat. This is a first for me, thankfully I have some Diclofenac to hold me over. Staying completely still took on a new meaning after getting home.

Below are attached photo's of a Catholic church in Retiro, Colombia on this trip. This town is also known as being the first in the world for freeing slaves in 1765, 100 years before the United States. (Today's history lesson)

The weather has been great for the back. The acid test will be when I get back in the cold weather again. Jan 21st

I don't believe we have a specific vehicle thread here that pertains to scoliosis and vehicles. Go ahead and post your car and vehicle questions here.

Hope everyone is well or at least hanging in there

Ed

[jackieg412]

Great post Ed. Both about the car and what a beautiful church. I feel like you provided me something that I will never see. I have visited some of the California missions and they are specticular.
I have new Haundai Kona( a small SUV) it is perfect for spine patients. Also all the sensors that are available. Due to my auto accident I am even more limited.
These are things that no one can tell about full spine fusion survivors. Thanks for the information.
My surgery is still on hold but the abrasion is beginning to heal. Still being treated 3 times a week.
They decided it was a pressure wound. Now we have to explore the area under it.
Happy Thanksgiving

[Tina_R]

Just wonderful to hear of yet another difficulty faced by spinal fusion patients, years after they are supposedly recovered from their surgeries. Wish I had known about these things sooner.

Titaniumed, can you exercise your back muscles without a problem? Can you go to the gym and do bench presses, overhead lifts, those kind of things on machinery without problems?

[titaniumed]

Great post Ed. Both about the car and what a beautiful church. I feel like you provided me something that I will never see. I have visited some of the California missions and they are specticular.
I have new Haundai Kona( a small SUV) it is perfect for spine patients. Also all the sensors that are available. Due to my auto accident I am even more limited.
These are things that no one can tell about full spine fusion survivors. Thanks for the information.
My surgery is still on hold but the abrasion is beginning to heal. Still being treated 3 times a week.
They decided it was a pressure wound. Now we have to explore the area under it.
Happy Thanksgiving

Bucket seats make all the difference in the world for us. They hold us in position so much better than a bench seat. Also, seeing the upcoming curve helps....being in the back seat, that becomes difficult since you cant see the curves or the traffic.

When you exercise, you think about a movement and the signal gets sent down. In the car you have these sudden jerky movements that trigger the signals. It can be so exhausting. The ultimate would be to ride a roller coaster with a blindfold on, one minute of that would be torture. I can feel all the paraspinal and other spinal muscles contracting unevenly, sometimes pretty hard.

My CNS gets so taxed, my eyes glass over as if I am wasted on some substance. This has been happening for probably 20 or so years.... Vision also gets tiring when this happens. Its truly a soft tissue, CNS problem. The fusion process at least holds the spine in place, without it my existence would be impossible. Its not about curves or immobility. These things don't even matter to me.

If I get back home and go through the cold weather torture again, it will be my last winter spent in cold weather. I am done.

Glad to hear its not an infection. Infection can become an extremely serious matter for us, even though we all seem to get through these things. Your example is a good one as we do need to be watching our backsides with mirrors after our surgeries during recovery looking for red spots etc. This goes for all surgeries. If you don't heal on the surface, imagine what can happen internally. Our immune systems need to be strong.

Glad you enjoy the photos. I have been coming to Colombia now my whole life. (Except for the violent years)

Gabriel traveler makes videos all over the world. I follow his channel.
https://www.youtube.com/user/gabejedmo/videos

Indigo traveler is also excellent
https://www.youtube.com/channel/UCXu...osNa0jA/videos


Ed

[titaniumed]

Just wonderful to hear of yet another difficulty faced by spinal fusion patients, years after they are supposedly recovered from their surgeries. Wish I had known about these things sooner.

Titaniumed, can you exercise your back muscles without a problem? Can you go to the gym and do bench presses, overhead lifts, those kind of things on machinery without problems?

I don't know if its wonderful....perhaps more realistic and informative.

Exercise the back muscles? Go for twisty car ride in Colombia, that should cover it. (smiley face)

I don't think there is a really good reason to specifically target the back muscles especially after what we go through with the stripping that happens. Dr Anand has referred this as a B-52 bombing of the paraspinal's. Have the rods and hardware laid in there and its not all peaches and cream....The toughening up of this scar tissue is like toughening up your hands if your plan on chopping cinder blocks in a karate meet. The arm bike works quite well for this. You can emulate this pedaling motion with your hands without the machinery and use small jars that weigh 1# for weights. Pedal forward and backwards in 15" circles. I found this to be excellent therapy for thoracic fusion therapy. I also like a chin up machine which also works plenty of muscles without doing the wrong exercises that would create large amounts of forces especially in the lumbar spine. For example sit ups. I can do sit ups, but this is not a good idea to be doing these after a full fusion. I do sit ups to exit my bed in emergency situations. For example: Choking. Choking gets you out of bed REALLY QUICK. Faster than a fireman in a California summer season....

Many scoliosis surgeons do not order any physical therapy since its better to do nothing than to cause damage. Walking is our therapy. Slow and easy, there is no rush in recovery, and there is no speeding it up by exercise.

I currently do not lift anything anymore. I did dead lift 75# around 2 years post, but that was just a test. I am fused. Lift 1000# for the acid test. You get the idea. Pseudarthrosis can happen right away in 25 yr olds or can happen up to 8 years after surgery per Dr Lenke.

In recovery, take it easy. We only have one shot at it, it makes no sense to have to do a revision because of incorrect exercise, tripping, falling, car crashes, falling off treadmills etc.

Cars can be especially dangerous. We are not allowed to get into car crashes. Also no driving on medications regardless of what any doctor says. A jury will determine impairment if a trial happens, not your doctor.

Ed

[Tina_R]

I don't know if its wonderful....perhaps more realistic and informative.

Exercise the back muscles? Go for twisty car ride in Colombia, that should cover it. (smiley face)

I don't think there is a really good reason to specifically target the back muscles especially after what we go through with the stripping that happens. Dr Anand has referred this as a B-52 bombing of the paraspinal's. Have the rods and hardware laid in there and its not all peaches and cream....The toughening up of this scar tissue is like toughening up your hands if your plan on chopping cinder blocks in a karate meet. The arm bike works quite well for this. You can emulate this pedaling motion with your hands without the machinery and use small jars that weigh 1# for weights. Pedal forward and backwards in 15" circles. I found this to be excellent therapy for thoracic fusion therapy. I also like a chin up machine which also works plenty of muscles without doing the wrong exercises that would create large amounts of forces especially in the lumbar spine. For example sit ups. I can do sit ups, but this is not a good idea to be doing these after a full fusion. I do sit ups to exit my bed in emergency situations. For example: Choking. Choking gets you out of bed REALLY QUICK. Faster than a fireman in a California summer season....

Many scoliosis surgeons do not order any physical therapy since its better to do nothing than to cause damage. Walking is our therapy. Slow and easy, there is no rush in recovery, and there is no speeding it up by exercise.

I currently do not lift anything anymore. I did dead lift 75# around 2 years post, but that was just a test. I am fused. Lift 1000# for the acid test. You get the idea. Pseudarthrosis can happen right away in 25 yr olds or can happen up to 8 years after surgery per Dr Lenke.

In recovery, take it easy. We only have one shot at it, it makes no sense to have to do a revision because of incorrect exercise, tripping, falling, car crashes, falling off treadmills etc.

Cars can be especially dangerous. We are not allowed to get into car crashes. Also no driving on medications regardless of what any doctor says. A jury will determine impairment if a trial happens, not your doctor.

Ed

I have no intention of doing anything to risk my healing from fusion. I realize healing can take a long time and that I'm not healed until the doctor says I am. The questions I ask concern what I can expect to do when I get back to "normal". Because I was naively under the impression that when all was healed I would be close to a normal person again. Because no doctor told me otherwise.

Gradually I've been realizing that that isn't the case at all. There will be limitations, maybe severe ones. I feel like no one told me this and I feel betrayed, frankly. I wish I had found this site, and other sources of information, sooner.

I would wait months or even a few years, as long as necessary, but if it's true that I can NEVER go to the gym again because of my fusion, I will be severely disappointed. I think strength-building exercise is important for one's health. Especially if osteoporosis is likely in one's future.

I don't want to build my back muscles, I want to build my arms, legs, core, everything, eventually. But almost every exercise you can do with your arms involves your back, except squeezing a ball in your hand.

[jackieg412]

Hi Tina, you can defently to go the gym but you will have to work on the way you exercise. It will be different. Just like getting in or out of a car or bed will be different. Even getting dressed can be challenging. Use the time before to get strong it will help in the long my run. Walking is key but no treadmills.
I take several exercise classes a week but always do the exercises my way.

[titaniumed]

Back to normal will require change and adaptability. Maybe back to normal isn't the right term, perhaps think of it as "fully healed" After age 50, its 2 years or more.

All sorts of things can and will change with a full T2-Pelvis fusion.

Dealing with my feet has been my latest challenge. I have cracked heels and this requires accessing your heels which can be tricky. I also have trouble seeing down at certain angles so there is a lot of feel in sanding my heels. I use a pumice stone. This is where you notice the lack of flexibility in the thoracic spine. I guess we take this for granted.....

I always have multiple pens in the car because your going to drop them and not be able to bend forward to pick them off the floor. You have to stop the car, get out, and get down to retrieve them.

I have already done 3 pedicures down here. This is heaven and its really cheap....(I had to rub this in) I have learned to love pedicures which is something I never did when younger.

Dressing changes. I always feed the belt through my pants "before" I put them on. You will see why after you are done. Its hard to get your arms around the back sometimes.

Socks and shoe installation becomes a perfected science. There are positions that are quite exacting to accomplish this. The reach is a full reach, and it has to happen quickly since we pull down slightly. Add the lack of vision problems and all of this eventually gets perfected. Putting on ski boots is the ultimate challenge with full fusion. It took me a long time to figure all of that out. I started hanging my arms down using a stool at 8 months post. Its a really slow stretching technique.

For the car, I hit my head getting in 1000 times. The movements and positions also get perfected in time. Get someone to lower your seat if necessary. For recovery, I had around 3 soft pillows in my car for a year. After a year, I didn't need them anymore.

I am sleeping on a crappy bed down here. After a few days, I had to find a piece of foam for a topper. Funny how the bed guy was telling me about doctors wanting firm beds. Sigh. And in Spanish. OMG.

Anyway, they don't sell latex toppers down here.???? I had to go to a bed manufacturing company.

There is no way surgeons can know about all these quirks we have to deal with. Between the many complications that can happen and just living life in general, its impossible to cover all of this.

I don't think its bad at all. If I didn't have arms and needed to pump some gas, I might watch this video....
https://www.youtube.com/watch?v=_1_dgZ4-Ldw

Happy Thanksgiving!

Ed

[Tina_R]

Hi Tina, you can defently to go the gym but you will have to work on the way you exercise. It will be different. Just like getting in or out of a car or bed will be different. Even getting dressed can be challenging. Use the time before to get strong it will help in the long my run. Walking is key but no treadmills.
I take several exercise classes a week but always do the exercises my way.

Thanks for replying, Jackeg412. That's interesting to know. I'm not into yoga or group exercises, though. I'm interested in strength-building exercises with heavy equipment, weight lifting. And only after I am fully recovered according to my doctor. I am not yet recovered and I have been ordered to do no exercise except walking so far.

I'm interested in what people are capable of doing with a fusion after they are out of the recovery period.

You don't say whether you are just recovering or fully recovered.

[Tina_R]

Back to normal will require change and adaptability. Maybe back to normal isn't the right term, perhaps think of it as "fully healed" After age 50, its 2 years or more.

All sorts of things can and will change with a full T2-Pelvis fusion.

Dealing with my feet has been my latest challenge. I have cracked heels and this requires accessing your heels which can be tricky. I also have trouble seeing down at certain angles so there is a lot of feel in sanding my heels. I use a pumice stone. This is where you notice the lack of flexibility in the thoracic spine. I guess we take this for granted.....

I always have multiple pens in the car because your going to drop them and not be able to bend forward to pick them off the floor. You have to stop the car, get out, and get down to retrieve them.

I have already done 3 pedicures down here. This is heaven and its really cheap....(I had to rub this in) I have learned to love pedicures which is something I never did when younger.

Dressing changes. I always feed the belt through my pants "before" I put them on. You will see why after you are done. Its hard to get your arms around the back sometimes.

Socks and shoe installation becomes a perfected science. There are positions that are quite exacting to accomplish this. The reach is a full reach, and it has to happen quickly since we pull down slightly. Add the lack of vision problems and all of this eventually gets perfected. Putting on ski boots is the ultimate challenge with full fusion. It took me a long time to figure all of that out. I started hanging my arms down using a stool at 8 months post. Its a really slow stretching technique.

For the car, I hit my head getting in 1000 times. The movements and positions also get perfected in time. Get someone to lower your seat if necessary. For recovery, I had around 3 soft pillows in my car for a year. After a year, I didn't need them anymore.

I am sleeping on a crappy bed down here. After a few days, I had to find a piece of foam for a topper. Funny how the bed guy was telling me about doctors wanting firm beds. Sigh. And in Spanish. OMG.

Anyway, they don't sell latex toppers down here.???? I had to go to a bed manufacturing company.

There is no way surgeons can know about all these quirks we have to deal with. Between the many complications that can happen and just living life in general, its impossible to cover all of this.

I don't think its bad at all. If I didn't have arms and needed to pump some gas, I might watch this video....
https://www.youtube.com/watch?v=_1_dgZ4-Ldw

Happy Thanksgiving!

Ed

I should say that I am more than 6 months along and not near being recovered. Still allowed to do no exercise except walking. Still limited in activities like lifting things, housework - I get back pain if I overdo it. Still no twisting, so still in a brace - even my surgeon's office staff was surprised I've been in it this long but I've been ordered to keep wearing it. Yet supposedly I am doing well, the surgeon says.

I have heard that recovery for older people takes 2-3 years or even more. Ed, you must be as recovered as they get since it has been what, almost 10 years for you? So it's interesting to hear what you have to say about your capabilities.

If ski boots are a problem for you, that still sounds promising, because 1) you figured out how to tie your shoes even if it's difficult and 2) you can ski!!! That's so encouraging.

Cars have posed problems for me, too. It's hard to duck so I, too, risk hitting my head whenever I get in. I put a firm cushion on the seat and a thin one behind my back because my back needs them. It was hard to drive again, it took me months, not the six weeks tell you. It felt all wrong with the brace and with my right leg not being very agile at first (from lumbar surgery). Dropping things I can't easily retrieve is what I do all the time at home I can see that happening in a car.

Do you do your own pedicures or have a professional do it? I have been getting them, too, for the first time in my life. They look great, I but I'd like the option to do my own some day.

Dressing is a funny thing. I don't need to put a belt on first, but I have found the hook end on those dressing sticks perfect for grabbing pants by the belt loop. I used to wear snug pants like most women do, now baggy pants are easier to get on. Forget most leggings.

My memory foam bed has never been a problem, I have a great bed.

Surgeons would know the quirks we deal with if they did more listening, or at least if some followup orthopedic doctor did more listening. Someone should be taking down all this data and publishing it for patients. Surgeon would rather be doing surgery. Thanks God someone does, though.

That video really puts things in perspective, doesn't it?

Have a Happy Thanksgiving!

[titaniumed]

Tina, I will be 12 years post on Jan 31st. The fusion mass from T2-Pelvis is great, there is no pain other than minor soft tissue tightness. My neck herniated in 2013, and that has slowed me down quite a bit, I have not skied since 2013.

My aunt has a cosmetologist that comes to her home down here, and she hangs out all day and does several people. She does my heels, which do become painful from the cracks. When I get home, I will buy a power sander and figure out a better way. There are guys on You Tube using power tools for this problem, think I will join them. I don't know how much a pedicure cost these days in the US, and will probably never find out. In Colombia, this is cheap.

The surgeons know what we go through, they just cant cover all the material. It can be one heck of a change so we have to be committed.....When you go through scoliosis surgery, its best never to look back and think "I shouldn't have done this" We reset the clock and start anew and tackle what needs to be tackled. Funny how its always something, like my neck. Many of us will have complications, hopefully they are minor ones.

You should set up your signature. They are helpful for other readers. I forget when you are going in again. I also wonder if you have a PJK ? Did your surgeon tell you anything about this? Proximinal Junctional Kyphosis

Scroll down, Figure 1 shows an extreme case of PJK where the spine falls forward. These fusion extensions up to the high thoracic levels are done successfully.

https://www.e-neurospine.org/journal...php?number=762

Ed

[titaniumed]

On the link I posted above, Neurospine uses "In Spine We Trust"

Wow! What a statement!

That sure is something to think about....

Ed

[Tina_R]

Tina, I will be 12 years post on Jan 31st. The fusion mass from T2-Pelvis is great, there is no pain other than minor soft tissue tightness. My neck herniated in 2013, and that has slowed me down quite a bit, I have not skied since 2013.

My aunt has a cosmetologist that comes to her home down here, and she hangs out all day and does several people. She does my heels, which do become painful from the cracks. When I get home, I will buy a power sander and figure out a better way. There are guys on You Tube using power tools for this problem, think I will join them. I don't know how much a pedicure cost these days in the US, and will probably never find out. In Colombia, this is cheap.

The surgeons know what we go through, they just cant cover all the material. It can be one heck of a change so we have to be committed.....When you go through scoliosis surgery, its best never to look back and think "I shouldn't have done this" We reset the clock and start anew and tackle what needs to be tackled. Funny how its always something, like my neck. Many of us will have complications, hopefully they are minor ones.

You should set up your signature. They are helpful for other readers. I forget when you are going in again. I also wonder if you have a PJK ? Did your surgeon tell you anything about this? Proximinal Junctional Kyphosis

Scroll down, Figure 1 shows an extreme case of PJK where the spine falls forward. These fusion extensions up to the high thoracic levels are done successfully.

https://www.e-neurospine.org/journal...php?number=762

Ed

No, my surgeon doesn't tell me anything, as I have said before. You have good intentions, but I'm not going to look up PJK right now. I don't want to hear more negative stuff that might occur down the line.

Most of the complications are not minor, not if they result in more surgery which means more of your life taken away because you are slowly healing and limited in your activities for yet another year or two. I think there is a high rate of complications, revision, whatever you want to call it, it's all the same thing. Once you have fusion surgery with hardware in your body, you're stuck.

No, most of us didn't have a choice about surgery, but we still should have been better warned about the outcomes by some doctors along the way. I think my general practitioner doesn't know much about scoliosis and scoliosis corrective surgery and the orthopedic specialists and surgeons just don't want to dwell on the negatives. But patients have a right to know.

[Scared]

No, my surgeon doesn't tell me anything, as I have said before. You have good intentions, but I'm not going to look up PJK right now. I don't want to hear more negative stuff that might occur down the line.

Most of the complications are not minor, not if they result in more surgery which means more of your life taken away because you are slowly healing and limited in your activities for yet another year or two. I think there is a high rate of complications, revision, whatever you want to call it, it's all the same thing. Once you have fusion surgery with hardware in your body, you're stuck.

No, most of us didn't have a choice about surgery, but we still should have been better warned about the outcomes by some doctors along the way. I think my general practitioner doesn't know much about scoliosis and scoliosis corrective surgery and the orthopedic specialists and surgeons just don't want to dwell on the negatives. But patients have a right to know.

I TOTALLY agree-I can’t believe what the docs get away with- I use to lead Joint Commission Surveys. The drs I have seen were not in compliance on many things including Patient Education.

[Tina_R]

Hi Tina, you can defently to go the gym but you will have to work on the way you exercise. It will be different. Just like getting in or out of a car or bed will be different. Even getting dressed can be challenging. Use the time before to get strong it will help in the long my run. Walking is key but no treadmills.
I take several exercise classes a week but always do the exercises my way.

Whoa, I missed the part about treadmills. Why no treadmills, jackie412? Not even for a slow-paced walk?