WOOOO HOOOO, Finally....I've got a surgery date- It's going to be March 13, 2019

[jborden]

Hello Friends,

Finally, I have things set for my surgery.

My appointment last week with Dr. Hey was exciting when we actually decided on the date. The new scans he did showed how much worse my spine has gotten and it's evident that it's working on collapsing. CRAZY!!! It's hard to believe. I'll attach the updated pic showing the large curve is now 85 degrees and the smaller one is 58 degrees. My poor organs. My stomach is so squished that I can barely eat anything without feeling like I've eaten a 10 course meal. I hold my breath when I walk and catch myself when I'm gasping for air. It's time to fix me.

So now I'm weaning down my meds to help with the after surgery pain control. I am hoping this won't be too horrible. I'm doing yoga which helps with the stretching and also helps my mind a lot.

What can you suggest I have at the house for after surgery to help me get through this? What did you find helped you the most?

I appreciate all of your encouragement and suggestions!!

Let's do this!!!!

Jenson

[titaniumed]

Jenson,

Congratulations, it takes a lot of guts setting our dates.

For after surgery, these 2 items helped me the most.

2-4" inch thick latex foam topper for the bed. My bed wasn't soft enough. Sleeping is hard after surgery. The foam increases sleep time.

2 bottles Magnesium Citrate Oral solution. This is a strong laxative. For a few weeks into your recovery. (Just in case)
https://www.walgreens.com/store/c/wa...604183-product

Is this a single day procedure? Is he going in from the front or the side? Usually, surgeons will take their finger and draw an imaginary line showing the patient where they go in.

Ed

[LindaRacine]

Here's a list that was created many years ago.

PreparingForMajorBackSurgery.pdf

[jborden]

Linda,

Thank you Linda. That list is awesome. So much thought involved and it really made me think about many situations that may arise after surgery. The more prepared I can be the better things will go, I'm hoping.
This may sound silly but can you wear a sports bra a couple days out of surgery or is it extremely sore on the incision site? I don't know what to bring to the hospital to plan to wear home. I was thinking just yoga pants and camisole with a loose button down over it. I don't want my clothes to add any discomfort!


Ed,

Thank you for your encouragement.
It is about a 7 hour procedure and they will be going in through the back. How was your surgery done?
My bed should be great I'm hoping. I have a Tempurpedic- "Contour" mattress with adjustable base. I think it will be helpful and easily adjust my position.


Were either of you on pain medication prior to surgery? How difficult was it to control your pain after surgery?


It helps so much to have a place to go and communicate with all of you. I can't thank you enough!!


Thanks again,

Jenson

[LindaRacine]

Hi Jenson...

Your incision will be covered with a dressing, so you can probably wear a bra if you feel it's really necessary. I found it exhausting to get dressed, so my recommendation would be the looser and stretchier, the better. I think I wore a T-shirt, yoga pants, and a loose cotton hoodie.

--Linda

[titaniumed]

How was your surgery done?

Front side first, then back side 2 days later. The front side was serious, with cancer exploration. I had a L1-Sacrum ALIF with BMP in PEEK cages. Partial Corpectomy was performed on all these lumbar levels. Each surgeon makes the call weighing the risk/reward on surgical methods. ALIF does have its own share of complications....Ileus being one of them. I was opened from the sternum all the way down the front with a vertical scar. The scar wraps around the belly button.

Ed

[titaniumed]

Were either of you on pain medication prior to surgery?

I was not on meds at all. I went in clean. Also quit coffee, didn't want caffeine withdrawal during recovery. Lost weight, cut out the bread and the pasta 3 months before.
Quitting coffee is not easy....you get real jumpy. Deep breathing helps a lot. Get used to deep breathing now. In hard, hold a tad release slowly. Help's with anxiety and you will be doing these things (deep breathing exercises) during your recovery using an incentive spirometer.
https://my.clevelandclinic.org/healt...ive-spirometer

I was warned about laying in bed too much. Now you know why. Breathing and doing short walks often through the day are important for multiple reasons.

Ed

[titaniumed]

My bed should be great I'm hoping. I have a Tempurpedic- "Contour" mattress with adjustable base. I think it will be helpful and easily adjust my position.

I have a medium tempurpedic but it wasn't soft enough. After getting the foam topper it doubled my sleep time. Sleeping is hard after surgery. Sitting is also hard after surgery. All this gets better after you get through the first few weeks.

I like my bed dead flat. Not hammocked. If you take a long straight edge from the headboard to the footboard, if the mattress sags 1" , its hammocked. When you have a full fusion you feel this. My regular unadjustable tempurpedic has not hammocked in 13 years. Its a great mattress.....I have bought a few mattresses through the years.

I did not like the nurses touching my hospital bed. Lifting up or raising the bed induces stresses in the construct. After you get done with surgery, its good to keep forces down. Bending over is a great example of exerting forces, high forces on the construct. We need some time to heal after coming off the table, time with minimal forces.
An analogy would be like gluing a model together, and tweaking the glue joints by a force, weakening the healing that has already happened. We heal rapidly right after our surgeries, it would make sense not to disturb while things are healing in immediate recovery.

There are no BLT's after scoliosis surgery. No bending, lifting, or twisting. And no falling. This is until you are released from your surgeon which is roughly around 4-6 months. I was released at 8 months and I still took things real easy. I didn't lift more than a dinner plate for 6 months.

If you can sneak a piece of 2" latex foam into the hospital "if needed" that has been done in the past....Hi Ginger! and Dr Berven though that was ingenious. Ha ha My hospital bed was HORRIBLE.

Frank Zappa wrote a song about lumpy gravy. If he were still alive, I would request a song about "lumpy mattress". Its has to have a funky beat, with many time signature changes. You know, music you cant sleep to. LOL

My hospital bed probably cost at least 50K and I could barely sleep on it. That problem was the main reason why I left early from the hospital. Must be an insurance decision to lower hospital bills.....the lumps, the drains, not flat, the hoses, I had a lot of hoses and drains. You roll over, and its like laying on a pot.

If you can swing a private room, do it. My roomate was not a problem, it was his support team changing the channel on the television every 3 seconds through a thousand channels that pushed my button....and all the talking drove me nuts.

Ed

[jborden]

Ya those tempurpedic beds are the best. Mine is very firm which I find a lot more comfortable. I will look into a foam topper.

What did you find the most comfortable to sit on?

I "plan" to do a lot of walking and when I'm able I'll get on the treadmill. I've learned throughout my worsening spine pain that moving helps most of the time. I've been going to yoga (a gentle or Yin deep stretch) that usually helps with loosening me up and easing some pain. That's of course as long as I don't over do it.... When that happens, I have to let it calm down and then I start all over again.

I can't imagine what it is going to feel like. I have had 2 C-sections and a hysterectomy, my gallbladder removed, and a few minor other things.... So I am not a stranger to pain after surgery. I just don't know how well they will control it after surgery. That scares me some. I'm weaning myself down from what I was taking in order to make it easier for them to control it.

Ahhh, I just wish it was tomorrow. It's like I'm in limbo and I'm ready to rock and roll!

Take care,


Jenson

[LindaRacine]

Ya those tempurpedic beds are the best. Mine is very firm which I find a lot more comfortable. I will look into a foam topper.

What did you find the most comfortable to sit on?

I "plan" to do a lot of walking and when I'm able I'll get on the treadmill. I've learned throughout my worsening spine pain that moving helps most of the time. I've been going to yoga (a gentle or Yin deep stretch) that usually helps with loosening me up and easing some pain. That's of course as long as I don't over do it.... When that happens, I have to let it calm down and then I start all over again.

I can't imagine what it is going to feel like. I have had 2 C-sections and a hysterectomy, my gallbladder removed, and a few minor other things.... So I am not a stranger to pain after surgery. I just don't know how well they will control it after surgery. That scares me some. I'm weaning myself down from what I was taking in order to make it easier for them to control it.

Ahhh, I just wish it was tomorrow. It's like I'm in limbo and I'm ready to rock and roll!

Take care,


Jenson

Hi Jenson...

I prefer chairs like THIS. You just need to be sure that the cushions are firm enough so you don't sink in too much. Arms are a must in the early recovery period.

--Linda

[titaniumed]

Ya those tempurpedic beds are the best. Mine is very firm which I find a lot more comfortable. I will look into a foam topper.

What did you find the most comfortable to sit on?

I "plan" to do a lot of walking and when I'm able I'll get on the treadmill. I've learned throughout my worsening spine pain that moving helps most of the time. I've been going to yoga (a gentle or Yin deep stretch) that usually helps with loosening me up and easing some pain. That's of course as long as I don't over do it.... When that happens, I have to let it calm down and then I start all over again.

I can't imagine what it is going to feel like. I have had 2 C-sections and a hysterectomy, my gallbladder removed, and a few minor other things.... So I am not a stranger to pain after surgery. I just don't know how well they will control it after surgery. That scares me some. I'm weaning myself down from what I was taking in order to make it easier for them to control it.

Ahhh, I just wish it was tomorrow. It's like I'm in limbo and I'm ready to rock and roll!

Take care,


Jenson

You can have your hubby get the topper after you get home if need be. They sell them at Kohls.

I just sat at my kitchen chair to eat. Most of the time for the first few weeks, I didn't sit much. Standing is a comfortable spine position after surgery. They will get you up the next day after surgery. Its not like you stand around all day long, so that leaves walking. I did a LOT of walking in my recovery. I had my laptop at the kitchen counter.

Short walks, often throughout the day. 10 minutes every hour. Walk too much, and you will create pain. In the hospital, you will use a walker in the hallway with a nurse following along with you.

All of us wonder what the pain is going to be like for surgery. My surgeon told me that they would keep me under for a few days due to pain. In ICU, I didn't feel a thing. They do have the ability to remove all pain. All of it. The thing is, they do reduce the meds, that's the weaning part of recovery which is hard. Reduce meds and pain usually results. You cant do extreme spine surgeries and get away without pain, that's not realistic. Pain is an acquired taste.....I have had so much pain in my life, it doesn't matter much anymore. My spine is great, its the rest of my body that's falling apart. Fusion does work for spine pain. No doubt.

At 4 months, I was sitting here at my computer and realized that I was completely out of pain. I couldn't believe it. After decades of scoliosis pain, being pain free is a strange thing....Of course, the pain did come back. Our recovery is a very see-saw type of recovery with good days and bad days. Recovery also seemed to come in steps, no improvement for the first 3 weeks, then all of a sudden a 20% improvement. Nerves seem to be either on or off as far as pain is concerned. When some do heal and turn off the pain signal, that result is a stepped improvement. Peripheral nerves do heal, but they take time. These are the nerves other than the spinal cord.

Hot water soaks work well for bone and nerve pain. You need a deep tub so you can float. A regular bath tub will not work. Get permission before doing this, and drink lots of water since you lose it fast. Dehydration can cause another set of problems, you want to avoid this. This is why children should NOT use hot tubs. Not because they pee in the pool. (smiley face)

I was in Limbo also, a zombie actually. After waiting 34 years, I was a candidate in 1975, my chance finally came. There is no turning back. You walk in very brave.

My vascular surgeon asked me if I was nervous right before going in. I asked "Am I supposed to be nervous?" I guess that installed complete trust, there was a huge team in the operating room. I knew they were all professionals that do this all the time. He put an IV in in 3 seconds, set the record, I was impressed.

I woke up 4 days later.

Ed

[susancook]

Hello Jenson,
I am not on the forum much anymore, but will add a few cents of advice.
Bras are over rated.
Most spine postop units control pain well. My first surgery was at UCSF and I barely remember the week. Sometimes it takes a while to figure out which combination of pain meds is best. Make sure that you have an advocate for you at the hospital in the form of a husband friend, adult kid, whatever.
My surgery was 2 days: front/side and then posterior. Lots of repair and rebuild.
Treadmills still scare me, so I prefer walking.
My scoliosis surgical "adventure" was somewhat unique in complications, but all said I am happy that I had it done in 2013.
My advice: [1] Expect something unplanned/unexpected to happen postop.....might be small, might be big. But when It happens, then you relax a little and say to yourself, "Yea, that chick on the forum said that". FYI: some of my unexpecteds were: hallucinations and out of body experiences [to the amusement of my family and the staff], ventral hernia, pulmonary embolism, hardware infection.
[2] Have your family keep a notebook and write down everything that happens: what doctors say, doctor's names, times of pain meds, questions for the doctor the next time that he/she comes in.
[3] Constipation can get ugly postop. I had a "Constipation Arsenal": Colace, Senna, Suppositories, Miralax, Dulcolax, Mag Citrate, and rubber gloves and lubs for my husband in case he needed to give me some assistance. When I took a pain pill I also take a Colace or Surfac. Buy generic on all of it. Keep a record of BMs. One hospital wasn't keeping any BM record for me and I went to rehab with a colon full of 6 days of hospital food.
Best of luck, we survived and you will also.
Susan

[titaniumed]

Jenson, We have a few nurses here, Susan is one of them. I need to talk about nurses, because without them, I wouldn't have made it. I had a tough recovery at first, not so much physical pain, I had an accumulation of "scoliosis related anguish".

What happened with me after a few days in ICU was a psychological scoliosis meltdown....You grow up with large scoliosis curves, and over all those years, every single doctor (including my Chiropractor's) told me that some day I was going to have my whole spine fused. I saw a lot of head shaking....and jumpy doctors. Of course, this was many years ago, and things have improved quite a bit over the years in the scoliosis surgical arena. I waited for technology to improve over 34 years.

It all came to a head in ICU, and I was mad as hell blowing off steam. Why did I get scoliosis? Why me? Why do I have to do this? These questions have no answers, and control on Ketamine is like truth serum. It all came out. There were male nurses in ICU, and as a male patient, that was not what I expected. 2 male nurses on 3 patients. I was also a hose puller and I had a lot of hoses and drains. I hated my NG tube but didn't have a choice. The only choice you have is your attitude.

The only choice you have is your attitude.

Anyway, they moved me on the ortho wing next to the nurses station, and there were many fe-male nurses. There was a lot of activity during the night and grave shifts, many trips down to x-ray and testing rooms. I like those because I got out of the room and I liked the interaction.

One of the grave nurses acted as a psychologist because my attitude was in the dumps. I was a wounded animal that was snapping. We had talks about attitude. Positive attitude....and after those sessions, I did an about face. She convinced me that I was going to recover and walk out of this hospital. No is not an option. Only yes. This will all pass in time, and you need to accept change and adjustment. Change is always hard, and I just wanted some normality. Surgeries are full of new unexpected circumstances, you give up control, and you have to roll with the new norm. Its called positive recovery.

Your mind and attitude will be the most important things in all of this. Accepting what happens, and taking things day by day. Our recoveries are an exercise in patience, and we master this. I can watch the grass grow now.

Its a long recovery...but its worth it. I didn't know if I was going to ski again as a lifelong skier, well here is a video of me skiing after all my surgeries. This was 3 years post.
I am in the red jacket. This is at Donner Ski Ranch in California. I don't know why they use the word ranch. Skiers don't ranch, and there are no farm animals up there. Some questions have no answers....(smiley face)

https://www.youtube.com/watch?v=4tEypv3Vz8o&t=1s

Ed

[susancook]

Yes, Ed is so correct! Attitude is everything. I was a paraplegic in rehab sitting in my new wheelchair crying saying to myself, "I don't deserve this. I don't want to be here in rehab as a new paraplegic in a wheelchair". Then, I looked around at the rest of the people sitting in their wheelchairs and I realized that they didn't want to be there either. So, I could be mad or have an attitude check and get going on rehab and the rest of my life.
Well, I didn't stop crying for a day.....but the next day I was a whole new girl and sucked up that it was not my fault, that my situation sucked, and that if I didn't get going, life would pass me by.

The rest is history....
Susan

[titaniumed]

Susan, You got struck by lightning.

Your kyphotic forward pull was a complete surprise. Osteoporosis sucks and so does kyphosis.

My dad also got struck when he was diagnosed with ALS, his depression was a constant battle.....and I would go down there, and out of necessity, have to do constant stand up comedy at the hospital.

ALS patients have depression and also laughing fits. One day, I got him going, and we went out to the center hallway along with about 15 other wheelchair patients. Then he started in with "his" jokes, and the whole place got rolling as if there was a party going on. The nurses couldn't believe it. One day I went down and had this plastic joke lighter where a plastic penis would pop up. My dad saw that and lost it, started laughing, and a group of ladies called me over as they wanted to see it. That was another unexpected party, and I just had to pull some major stops to turn a rainy day into sunshine.

From that point on, when I would walk in, those ladies would ask, "Hey Ed, you got a light?" "Nope, its a really bad day, It broke off" LOL

What happens when you laugh is you forget about pain. Mental and physical. Think about pain, and it gets worse, forget about it through laughing lowers it or removes it.

https://www.depressionalliance.org/b...s-of-laughter/

Ed