PDA

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



jborden
02-12-2019, 05:50 PM
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
02-12-2019, 09:59 PM
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/walgreens-magnesium-citrate-saline-laxative-oral-solution-grape/ID=prod5604183-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
02-13-2019, 11:44 AM
Here's a list that was created many years ago.

2015

jborden
02-18-2019, 11:43 AM
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
02-18-2019, 01:01 PM
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
02-19-2019, 12:25 AM
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
02-19-2019, 12:28 AM
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/health/articles/4302-incentive-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
02-19-2019, 12:57 AM
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
02-21-2019, 05:05 PM
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
02-21-2019, 10:42 PM
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 (https://www.hayneedle.com/product/best-selling-home-coll-tufted-club-chair.cfm?source=pla&kwid=UpholsteredChairs%20level05&tid=BSHD1497-1&adtype=pla&kw=&gclid=EAIaIQobChMI7cuO-sLO4AIVjL9kCh3RtQiAEAkYFiABEgI4x_D_BwE). 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
02-22-2019, 11:38 PM
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
02-23-2019, 04:36 AM
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
02-23-2019, 12:37 PM
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
02-24-2019, 04:40 AM
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
02-24-2019, 04:29 PM
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/benefits-of-laughter/

Ed

Karagirly
03-01-2019, 11:38 PM
Good luck with your upcoming spine surgery

jborden
03-04-2019, 05:16 PM
Wow, you guys really made my day. Made me laugh a little, or a lot... Made me think about the fact that it was hard, really hard for some of you but you made it out the other end with smiles and grace. And Ed.... that skiing clip was unreal. You are a very good skier. I grew up in California and we skied Mammoth Mtn. and June Mtn. as a kid. I didn't ski much as an adult.

I liked all the humor you showed your father. It's a lot different being a care giver and being the patient. I've always been the care giver so this is not going to be easy. I like things the way I like them and don't mind fixing them that way. It's going to be hard to just appreciate and accept things the way they're given. If I don't I may end up all alone with my dog. Heck, I won't be able to take him out so he'll be leaving too! In all actuality I'm pretty lucky. I have my husband and 2 wonderful daughters, my son-n-law and his wife, and a few friends that will be helping out.

I think what I'm most nervous about is that I have sleep apnea. I know the nurses are not going to want to give me pain meds if my breathing keeps stopping over and over. I'm going to talk to Dr. Hey's office and see if I can bring my c-pap machine. This is something I'm quite concerned about.

I know it will be hard, I'm just not sure how hard. I'm ready for change and can't go on like this. It's incredible that I can still walk. My MRI from last week showed a lot of degenerative changes and I'm lucky it isn't worse with all this collapsing. I put my car seat all the way up and still have to sit up as tall as I can. I feel like a little kid driving. I can't wait to get a few inches back.

Let me know your thoughts on the sleep apnea craziness. Your words mean more than I can tell you!

Have a great night~

Jenson

jborden
03-04-2019, 05:17 PM
Good luck with your upcoming spine surgery

Thank you so much!!!

Jenson

Karagirly
03-04-2019, 08:29 PM
Your welcome. The recovery process is tough during the days and weeks following surgery. As the recovery process you feel like a whole new preson. Because living for years with other scoliosis or kyphosis you can tell a huge difference.

titaniumed
03-05-2019, 01:34 AM
Jenson, I would think that they would find out "REAL QUICK" if you stop breathing...... and adjust accordingly. I wouldn't bother with bringing your c-pap machine in, they have all the necessary equipment there at the hospital. Usually, the Anesthesiologist will come in and have a talk with you, right before you are wheeled in. They have a lot to do with breathing and know exactly what to do. My inspiratory effort was weak.....this is something that they watch like a hawk since anesthesia is powerful. I would inform Dr Hey about your sleep apnea c-pap history tomorrow. Our surgeons need our FULL medical history. All of it, even if you think it doesn't matter. Our descriptions of pain are also extremely important. EXACT description's and location. Numbness, burning, electrical, stabs, jolts, steady, dull, achy, twitching,cramping,dizzy, vertigo, throbbing, all over, pinpoint, 5 seconds, or forever....etc. It matters a lot, and they usually know what is going on right off the bat.


Thanks for the compliment on the skiing. That video was a stroll in the park and was easy peasy. I have fond memories of tearing up Mammoth back in the old days. Never skied June because Mammoth was right down the road. I will be headed down there in my RV around the beginning of May. Doing a big loop through the desolate regions of eastern Nevada, Area 51 with the aliens and government guys, multiple wildlife refuges, and possibly up to Sun Valley Idaho to tip a beer with the old man (Hemingway), and return through southern Oregon on this trip. Reading and reflection....and gourmet cooking. 5 star of course, in the middle of nowhere under the stars.
I have had young campers in the past eating hot dogs just barely surviving, and the smells of 5 star cooking wafting through the trees attracts them like zombies. If they look like they are starving, well then, we are just going to have to do something about that! Heck, I even pack the Haagan Daz

Bad Kitty

Ed

LindaRacine
03-05-2019, 12:34 PM
I wouldn't bother with bringing your c-pap machine in, they have all the necessary equipment there at the hospital.

I was instructed to bring my CPAP machine with me the last time I had surgery. Since I was supposed to be released on the day of surgery or, worst case scenario, the day after, I decided against bringing it. I ended up in the hospital for 4 days, and they had to supply a CPAP for me, as I was having oxygen issues. The machine they gave me was really, really uncomfortable. I would definitely recommend that you bring yours with you Jenson.

titaniumed
03-05-2019, 09:11 PM
I would bet that each hospital has different rules since bringing in your own medical hardware presents a liability issue. There is no quality control, they also don't know if you dropped a device in the parking lot walking into the hospital....

My hospital must have had issues with theft, they essentially wanted me walking in naked (with a blank check, for the co-pay) Its sad that people steal things in hospital but I guess this stuff happens.

I think its important that the doctors know on the sleep apnea, cpap machine, especially the anethesiologist as meds do affect breathing.

Ed

jborden
03-07-2019, 05:06 PM
I was instructed to bring my CPAP machine with me the last time I had surgery. Since I was supposed to be released on the day of surgery or, worst case scenario, the day after, I decided against bringing it. I ended up in the hospital for 4 days, and they had to supply a CPAP for me, as I was having oxygen issues. The machine they gave me was really, really uncomfortable. I would definitely recommend that you bring yours with you Jenson.

Linda,

Did they still control your pain? I'm so afraid that they will be light on the pain medicine because of it. I don't want to be in excruciating pain. Pain, I expect to feel but I just don't want it to feel like Chinese torture.

Heck, I'm in so much pain everyday now that I'm soooo ready to get on that table and gooooooooooooooooo! Let's do it and be done. I'm ready for the recovery part. I have a positive attitude and I'm tenacious as all get out!

Talk soon,

Jenson

Karagirly
03-07-2019, 06:36 PM
Like like Linda and ed said every hospital is different with rules. I donít have sleep apnea or breathing problems that require a capa. But I do have breathing problems that require a inhaler.

LindaRacine
03-07-2019, 10:45 PM
Linda,

Did they still control your pain? I'm so afraid that they will be light on the pain medicine because of it. I don't want to be in excruciating pain. Pain, I expect to feel but I just don't want it to feel like Chinese torture.

Heck, I'm in so much pain everyday now that I'm soooo ready to get on that table and gooooooooooooooooo! Let's do it and be done. I'm ready for the recovery part. I have a positive attitude and I'm tenacious as all get out!

Talk soon,

Jenson
Hi Jenson...

For my last spine surgeries, I had little to no back pain after surgery. For my surgeries in 2010, they took me completely off all pain meds except Tylenol, about 2-3 days postop because of breathing issues. I did not have any back pain. Once I was up and moving around, I did have thigh pain from trochanteric bursitis.

Wish I knew why some people have very little postop pain and others have a lot. Hope you fall in the first category. Either way, you'll get through it, and hopefully things will be much better than they are now.

--Linda

--Linda

mabeckoff
03-08-2019, 04:26 AM
I wish you all the best with your surgery. Dr. Hey is a great guy as well as being an excellent surgeon.

Melissa

jborden
03-09-2019, 10:37 AM
I wish you all the best with your surgery. Dr. Hey is a great guy as well as being an excellent surgeon.

Melissa

Hi Melissa,

Thank you. Did Dr.Hey do your surgery?

Jenson

mabeckoff
03-09-2019, 02:33 PM
I was moving from North Carolina to Southern California at the time of my first revision surgery. My wonderful Califonia surgeon wanted a second opinion and sent me to Dr. Hey. How I wish that I had my first surgery done with him instead of whom I chose.

KathyInIowa
03-10-2019, 09:15 AM
Hi, Jenson.

Good Luck on your upcoming surgery! I am coming up on my 3-year anniversary for my surgery - I was similar age as you - I was 55.

I will echo what others have said:

I preferred the chair like Linda said - and I STILL do. I am still very picky about what kind of chair or car I sit in. I still don't like my knees being higher that my hips when I sit. I don't like getting in and out of cars that sit low - I prefer being in an SUV, even if it is a small SUV. I drive an Escape.

Like Susan said - bras are over rated! I am fused from T11 - Sacrum and the hooks on my bra were RIGHT ON TOP OF the top of my incision. I didn't like that feeling and so I figured if I wasn't leaving the house I didn't need a bra. Sports bras were better since there's no hooks on the back.

My surgery was front and back - same day. I had the constipation issues and did all the things Ed mentioned. After a few days it worked but it was not fun for my husband who had to help me :-(

My husband was in my hospital room with me 24/7. I don't know how I would have been without him there. I have very little memory of the first 10 days after surgery. I have a few memories of being in the hospital and a few memories of the staff there. I know he was advocating for me and speaking for me when I was totally out of it. Apparently I had normal conversations, but I have no clue what I said, so clearly I wouldn't have been able to make a decision for myself. I was in the hospital for 3.5 days and then we went to a hotel for 4 days and I don't recall the hotel at all.....

The pain meds worked for me - I didn't have any real "Chinese torture" pain. It was less pain than I had before surgery, so I was very thankful for that! My pain was in my legs and hips. I think all the soft tissue was painful due to being pulled back into place. It was tolerable pain though.

I took lots of short walks. I rarely sat down - I didn't like sitting for at least a year. I would stand to eat (I actually always did that anyway!) and then I'd be flat on my back otherwise. If I was up too long, by low back would get really "tight" and I knew I better lay down.

After I was coherent, my days were basically: up for eating and bathroom, up to walk and maybe stretch my arms - otherwise I was laying down. I am an active person so boredom definitely set in. I read tons of books. One thing I didn't think of was laying flat on my back and holding a book up to read made my arms and shoulders hurt. So, I did audio books and I could lay however I wanted to.

I read all the advice from everyone on this forum before and after my surgery. I learned WAY MORE here than any doctor would have ever taken the time to explain. One thing I remember that, in the end, was so true: the first year of recovery you are 90% healed, the remaining 10% gets tweaked the 2nd year. It really did take 2 years before I felt "totally normal." (I will never really feel totally normal). But alot of soft tissue feels better that 2nd year.

I will be thinking of you.

Kathy

jborden
03-11-2019, 10:48 AM
Hi Y'all,

Thank you for all the kind words and advise. I agree, I have gotten a lot of information and confidence from your messages.

Looking at my latest x-rays blows my mind. How can I still be standing, breathing.... T4-11 57.5 degrees, T11-L3 is 84.6 degrees. Kyphosis is 67.3 degrees and Lordosis is 43.7 degrees. I don't recognize my body when I see these films. I'm only 5' 3/4" now and I used to be 5' 4 1/2". so my organs/ stomach are all crammed together. Looking forward to taking in a deep breath.

Ed, how many inches did you get back?

I will update you all as soon as possible.

Again, I can't tell you what a lifeline you have been. Only we truly understand all that this does to us....physically, mentally and emotionally.

Much Love,

Jenson

titaniumed
03-11-2019, 01:12 PM
Ed, how many inches did you get back?


On my waist? You don't want to know. I am getting so heavy these days, I am going to change my user name to Ed Zeppelin....

On my height, 4 inches. I had (5) PEEK spacers installed from the front, they are 13mm thick, so that alone is 2.559 or a tad over 2-1/2" of plastic in my lumbar spine. My lumbar was in really bad shape. I never expected it to come out the way it did, and I have zero problems in my lumbar spine. It took me years to even believe it, and my surgeon just shakes his head.

I remember when Kathy called me from the hotel room a few days after her surgeries at Twin, but I don"t think she remembers.(smiley face)

Leanne set the record.... She called me 3 hours after getting off the table (Full Fusion) and sounded pretty good. I couldn't believe it. John JDM555 also posted here just a few hours after his surgery many years ago....

Ed

mabeckoff
03-11-2019, 07:16 PM
Hi Y'all,

Thank you for all the kind words and advise. I agree, I have gotten a lot of information and confidence from your messages.

Looking at my latest x-rays blows my mind. How can I still be standing, breathing.... T4-11 57.5 degrees, T11-L3 is 84.6 degrees. Kyphosis is 67.3 degrees and Lordosis is 43.7 degrees. I don't recognize my body when I see these films. I'm only 5' 3/4" now and I used to be 5' 4 1/2". so my organs/ stomach are all crammed together. Looking forward to taking in a deep breath.

Ed, how many inches did you get back?

I will update you all as soon as possible.

Again, I can't tell you what a lifeline you have been. Only we truly understand all that this does to us....physically, mentally and emotionally.

Much Love,

Jenson

I gained two inches after my surgery

Karagirly
03-12-2019, 10:07 PM
I was 5 feet 5 inches before my surgery. Iím now 5 foot 6.5 inches taller. I Gained 1.5 inches from my surgery

KathyInIowa
03-13-2019, 07:56 AM
On my waist? You don't want to know. I am getting so heavy these days, I am going to change my user name to Ed Zeppelin....


I remember when Kathy called me from the hotel room a few days after her surgeries at Twin, but I don"t think she remembers.(smiley face)


Ed

LOL! You are right Ed, I don't remember talking to you!!

Jenson - I gained 2 inches after my surgery. I also have 5 Spacers in my lumbar region.

Kathy

titaniumed
03-13-2019, 10:30 AM
Its hard to remember things or talking with people after our surgeries. I don't remember my visitors for the first week....

Dr Hey should be operating on Jenson right now.

Ed

susancook
03-14-2019, 10:13 PM
I was 4' 10" before surgery and thought that I might qualify for Little People of America club. I gained about 3" with surgery.
Susan

titaniumed
03-15-2019, 03:17 AM
LOL! You are right Ed, I don't remember talking to you!!


Yeah, its funny, we can talk away and we don't remember....

This reminds me of Rod Serling and the Twilight Zone. Deep anesthesia is like a dimension of imagination.....

(this will bring back some old memories)
https://www.youtube.com/watch?v=NzlG28B-R8Y

The thing is, all of us that have done scoliosis surgery have been there....and some of us, many times.

Anesthesia is not something to be afraid of....Most of our fears are not necessary.

There have been studies on this matter for initial patients, but I have not seen this for revision patients. It almost deserves its own thread. It seems that many revision patients have little or no anesthesia related anxiety walking back in because they know what to expect.

I wasn't too afraid for my scoliosis surgeries because I was under for a previous surgery. I don't know how or if this affected my outcome. I am thinking it was positive.

Ed

jborden
04-01-2019, 10:04 AM
Hi Y'all,
I had some complications that have made it pretty rough but I'm improving now.
Surgery went good except for the lower lumbar curve had self fused because I waited so long to have surgery. (thanks to all the specialists locally that told me no one would touch my spine) So Dr. Hey was able to correct my major curve, correct the rotation and get rid of the large hump. I am now fully supported and don't have to worry about my spine continuing to collapse.
I was elated after surgery when I could wiggle my toes. The next morning I got up and decided I wanted to walk. I did it! but as the day wore on I started feeling worse and worse. I was very anemic but my blood count was coming back up so we decided to wait on more blood. I got released on Saturday night and I just wanted to go home. My nurse wasn't giving my pain meds as directed by the Dr. and I just wanted to be in control of my pain myself at that point. We came home and I continued to feel worse and worse. I couldn't stop coughing and I swelled with fluid and my thigh was painful to touch. They wanted me to go to the ER to get checked out on Sunday. They checked my legs for blood clots and my lungs also. They tested me for the flu and low and behold I had gotten" Influenza A" 2 days out of surgery. Unbelievable!!! I was so sick and it made the pain so much worse. Plus I coughed nonstop which killed my back, ribs, lungs, etc. I guess some people swell up with fluid in response to major surgery. So the next 2 weeks were pretty brutal but I am finally feeling better.
I tried to reduce my pain meds but I think I was being too aggressive with it. It's not worth suffering and not sleeping. I went back up on them for a little bit longer, and then I'll try reducing them again.
I've been walking a lot and listening to my body. I don't know what I would have done without my daughters and husband though. I've never been so completely needy. Little by little I will get myself back...Ö.

Talk soon,

Jenson

titaniumed
04-01-2019, 06:29 PM
Jenson

Influenza during immediate recovery sounds horrible! What a way to find out about the coughing pains we go through after our surgeries....Its horrible without surgery!

Your only 19 days out now, I don't think we have ever had any adults (age 50) wean off meds that fast before. It usually runs in the neighborhood of 6-12 weeks depending on pain. Constipation can be a problem if one takes meds, it is almost guaranteed. Drink water, sip water all the time. Water keeps things working properly.

Keep notes on everything. Meds, food, bowel, walks. If you have any questions, ask.

Congratulations! You made it.

Ed

Karagirly
04-02-2019, 09:30 PM
Jeez the flu after surgery that sticks. Iím glad your doing better jenson

jborden
04-05-2019, 04:30 PM
Ya, It's been tough. I felt better and then started coughing again... It's not nearly as bad as right after but it still hurts.
The pain is changing daily. It's weird. It's been pretty numb along the incision, which is from the top of my back to my behind crack. I read somewhere how the nerves go through all kinds of injury and healing. That sounds like a lot of what's going on. There's been pain that shifts from between the shoulder blades and then down lower, etc. I can't seem to be comfortable anywhere for over an hour. All night long, all day long, it's musical chairs and walking. Heat pad on my chest, ice on my back...... I also have had a lot of pain in my left thigh from the inflammation. It stings to touch and aches at times. The fluid was not something I had heard about before but the PA assured me that it happens to some people after major surgery. I've lost about 10 pounds of fluid but still have quite a bit in my thighs and stomach. At least it's staying out of my feet now.
I'm thinking I may need to try the egg crate because it's just not improving. I seriously wake up every hour and need to stand up and walk a little.
Ed, I guess I was far too aggressive with the pain meds. It was not working for me. I will try again in a few weeks but for now it's important to be able to do what I need to do to get better. ( and pain meds are necessary for that!!)

Let me know any suggestions that may make it easier. I can't wait to feel ok again.

Thanks,

Jenson

titaniumed
04-05-2019, 10:27 PM
Jenson, We know. We know you are struggling.....please understand that these "full" scoliosis surgeries we do as adults, are serious.

I have called it "survival mode", (first 6 weeks) where every minute of the day is spent trying to get comfortable. Sleep becomes our most important thing. There is no REM sleep and it takes many hours (4-5?) to get there.....It took me a year to sleep 8 hours. Surgical patients need to be left alone without disturbances so they can sleep. Sleep deprivation is so exhausting.....
https://en.wikipedia.org/wiki/Rapid_eye_movement_sleep

A latex foam topper 2-4 inches thick will help with your sleep and it doubled my sleep time. I used mine for 1 year. This reduces the hard pressure points laying on a mattress. Its a HUGE help. You can find these locally, and cut with a knife if need be. I had mine cut off because my shoulder and arm were broken.
https://www.homedepot.com/p/Lucid-3-in-Queen-Gel-Infused-Memory-Foam-Mattress-Topper-HDLU30QQ30GT/304737027?MERCH=REC-_-PIPHorizontal2_rr-_-304737023-_-304737027-_-N


The meds (opioids) are a careful balance of pain.....we have seen quite a few members (I always talk about adult over 50) that ask "how do I get off this stuff?" around the 5 week mark...... This means that they are thinking about it..... Immunity has built up, pain is hard to control, and the oral opioid's, they just don't seem worth it anymore.

The eventual termination of pain killers is the hardest part. For me, I was 5-6 weeks and just couldn't handle it much longer (Percoset 7.5, Oxycodone) The easiest way to reduce is to space your dose times out. (Keep notes) Or, you can cut your pills. Get permission from Dr Hey first and let him know what is going on. Use a pill cutter, (sold at pharmacies) do not pre-cut your pills. Do not cut pills without doctor permission. Always inform your surgeon of any pains or changes in pains. Good or bad.
https://www.amazon.com/s?k=pill+cutter+splitter&crid=368TVGHSYYZNV&sprefix=pill+cutter%2Caps%2C201&ref=nb_sb_ss_i_5_11

One pain doctor at one of the Linda Racine's UCSF scoliosis meetings years ago mentioned that any medication can be weaned without a Hollywood style withdrawal, in 5 weeks. Reduction of 20% per week. I will never forget that since I went through all of that, it was the hardest part. Of course, I wasn't on Paxil which I have read is the absolute worst to wean from. I have seen this as my neighbor could not wean and I saw the meltdowns when the dose times were missed. It takes a strong mind to battle depression, I refuse to let this happen. Changing frame of mind through setting is a good way. (Leave the house, visit with friends) Escaping reality through comedy works quite well. This is why I used to post Benny Hill videos years ago. It was an escape through laughter. Pain disappear's when you laugh and its amazing how this works. Here are some of the old school Benny Hill videos. Silly stuff. Remember to laugh often.
https://www.youtube.com/watch?v=Zat9CRfUr-E
Rainy and Sunny Originates from the Swiss Cuckoo clocks
https://www.dailymotion.com/video/xy8e90

When you get to that point, and you quit, the pain will rise. This is where hot baths and showers help out. Boil that pain away, and go to bed and try to get some sleep. After about 48 hours of this hell, (freezing, sweating, vomiting) the pain will reduce, and it does happen quickly. I replaced meds with nutrients which helped quite a bit. Yogurt and blueberries are one of my favorites. No dairy.

Water dilutes, and it dilutes the chemicals in your system. I am not sure how long this actually takes, but the body is going through biochemical havoc trying to re-adjust back to normal. You will feel all sorts of changes through the medication-weaning cycle. Hot flashes, vomiting, freezing, sweating, and all the typical scoliosis nerve related stabs, jolts, twitches that we feel. As nerves heal, they seem to do this in steps. Groups heal and all of a sudden there is improvement. Its so strange because it is not a progressive thing. You wake up and realize that a certain area is so much better. Nerve pain is either on or off like a light switch and there is no in-between pain setting.

I had incredible edema in my legs and feet. My ankles were the size of footballs. The best way is to walk it out. The post surgical edema or fluids come from changes in hydrostatic pressure during surgery. Its an involved subject matter. In time, this will reduce....Walk in an erect position, not leaning over a walker. Erect like a model on a catwalk.
https://en.wikipedia.org/wiki/Edema

I took 5 one hour hot soaks in my oversized master bath tub for 3 months. 106F degrees is great at pain control and it is easy. You need a deep tub so you can float. Drink a lot of water with you when you do hot water therapy. You lose water quickly sitting in hot water. 4# in 20 minutes. Becoming dehydrated creates serious problems.

Your mind is the most powerful tool in all of this. Your goal setting should be flexible and adjustable, in other words set no time frame and take things one day at a time. All my assumptions after my surgeries were wrong. All the things I thought I couldn't do, I can do now. Adapt with a smile, and know that many of us have made it through scoliosis surgery. There is light at the end of the tunnel....it will come slow and easy.

Hang in there

Ed

LindaRacine
04-05-2019, 11:02 PM
Jenson...

The sleeping issue and not being able to stay in one position for more than an hour is so familiar to me. Just reading about it gave me anxiety. After my revision surgeries in 2011, I actually ended up in the ER. I realized shortly thereafter, that I was simply unable to deal with the issues, as I had gotten almost no sleep for a week. Hang in there. It will improve before too long. And, not that it's the same thing, but I had thigh pain then as well. It wasn't until I had injections in my trochantera bursas that the pain completely resolved. If the thigh pain continues for more than a few months, have your surgeons' office check you for tronchanteric bursitis. It's not an uncommon problem.

--Linda