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View Full Version : Surgery scheduled - sooooo many concerns



Rise
05-10-2014, 08:44 AM
I've been reading these posts for so long truly believing that despite a significant curve I was going to be the exception and escape surgey. Not! I've had scoliosis since I was a kid and as a child was always a borderline candidate for surgery. (Curve was in the 40's and wore a brace for years - treated by Dr. Richard Ulin in NYC). Flash forward to my 30's and 40's and increased pain and increased curves. Went to see Drs. Neuwirth, Lonner and Boachie. All agreed surgery was the inevitable way to go. I decided to stay with Boachie and take a wait and see approach. Began "training" for surgery by going to the gym and staying fit. Pain was always there but hey, I'm tough so living around it wasn't a big deal. My fear of surgery was bigger. Well, now at the ripe old age of 49 my lumbar curve is 91 degrees (up 10 degrees from a year ago) and with Dr. Biachie relocating in October the writing is on the wall.

I'm scheduled with Drs. Boachie and Kim at HSS for surgery in July. Fusion will be from T9 - sacrum. Help! You'd think after all the time I'd be prepared but not even close! Fear is huge! I've always been way physical despite my condition - I workout, garden, clean, travel and just generally live! I fear what is going to happen to me post surgery and that the pain that is now bearable is going to be replaced by surgical agony.

Any insights that anyone can give me would be much appreciated. The fear of making an irreversible mistake is daunting!

Pooka1
05-10-2014, 08:51 AM
Hi Rise, :-)

Welcome. I am guessing many of the adult patients will chime in to answer your post.

But as a parent of two kids who were surgical, one of whom wore a brace, I was wondering if you are bitter over wearing the brace and also needing surgery. I guess I'm wondering what the odds of avoiding surgery for life would have to be with brace wear for you to think it was worth it?

The other thing is did you start wearing the brace when your curve was over 40*? That is not the protocol.

Good luck.

Rise
05-10-2014, 09:04 AM
Hi Sharon,

I wouldn't change a thing. We all have crosses to bare and wearing a back brace isn't the worst that life can give you. Was it ideal? No, but it was a part of my life and it was just something I dealt with. Had I had surgery so many years ago I have no doubt I would have required further surgeries down the road as technology has improved drastically. Wearing that brace and doing the things I've done bought me a good deal of quality time so no regrets.

I'm not sure of the exact curve when the brace wearing began but it was always at or around the 40 degree mark. Protocol for protocols sake is not something I'm a fan of. Medicine and life shouldn't be cookie cutter. You have to choose the path that makes the most all around sense for you and your exact circumstance.

Risë

titaniumed
05-10-2014, 09:30 AM
Rise

It’s a good time you know....things are so much better now. I waited 34 years and I think that dodging the bullet years ago was wise.....I couldn’t have asked for a better turnout.

I think with a 91 degree Lumbar and 10 degree progression in the last year, you are pointed in the right direction and your decision is sound. Would love to see your x-rays.....

Its amazing to see so many like you and I that hid in the cracks for all the years wondering what was going to happen.

Its good to see you posting here!

Is Dr B proposing an ALIF? (From the front)

Will he use BMP?

Deep breaths now...

Ed

Pooka1
05-10-2014, 09:44 AM
Would love to see your x-rays.....

I recently read that this is the third most used pick up line. :-)

titaniumed
05-10-2014, 10:22 AM
LOL

How about, “I have inversion boots back at my place” “You wanna try on those suckers” (He he) Did I mention I have electrostim?

We need a dedicated comedy thread....

Actually, 91 degree lumbar curves are not your everyday thing when you think about it....Usually the largest curves are T curves.

Ed

Pooka1
05-10-2014, 10:26 AM
LOL

How about, “I have inversion boots back at my place” “You wanna try on those suckers” (He he) Did I mention I have electrostim?

We need a dedicated comedy thread....

Actually, 91 degree lumbar curves are not your everyday thing when you think about it....Usually the largest curves are T curves.

Ed

LOL Ti Ed. :-)

Yeah that is quite the curve. Might even be in Lenke territory.

LindaRacine
05-10-2014, 01:12 PM
Dr. Boachie no longer does ALIFs. And, since they're going to the sacrum, I'm guessing he'll do TLIFs or XLIFs and TLIFs. It's also possible that Rise doesn't need any anterior interbody fusion or release.

Rise
05-10-2014, 03:55 PM
Rise

It’s a good time you know....things are so much better now. I waited 34 years and I think that dodging the bullet years ago was wise.....I couldn’t have asked for a better turnout.

I think with a 91 degree Lumbar and 10 degree progression in the last year, you are pointed in the right direction and your decision is sound. Would love to see your x-rays.....

Its amazing to see so many like you and I that hid in the cracks for all the years wondering what was going to happen.

Its good to see you posting here!

Is Dr B proposing an ALIF? (From the front)

Will he use BMP?

Deep breaths now...

Ed

Hi Ed,

Surgery will be posterior only. Boachie no longer does A/P although had I done this several years ago with him he would have. Another reason my waiting has been a "positive." As far as BMP, yes he will use that along with my own "material."

Yes, my curve is definitely up there in terms of degree and since its mostly lumbar (my thoracic curve is currently around 51 degrees or so) cosmetically most people have no idea of the severity of my back problems. I hide it well :-) although my X-rays reveal otherwise.

Any insight into how my range of motion is likely to be impacted and how limited my activities are going to have to be? Also, what the usual course of post op pain like? I picture waking up from surgery in unspeakable agony. Any validity to that???

Risë

golfnut
05-10-2014, 09:22 PM
Rise,
A good friend and huge support person for me before and after my surgery, also by the name Karen, noticed your post and asked me to give you her email. After several attempts, she has been unable to post on the forum. Her curves were 89 thoracic and 90 lumbar and Dr. Boachie was her surgeon. Kbeard2086@aol.com. She would like to correspond with you and answer your questions.

I was extremely active before my surgery and thought even though my curve seemed to be progressing, that I probably would never have surgery. After all, I wasn't in a lot of pain. To make a long story short, I had surgery with Dr. Lenke on January 5, 2011 at age 60. I thought that my life would never be the same. I was pleasantly surprised. Recovery from surgery was tough but not as difficult as the stressful time waiting for 13 months after deciding to have surgery. I second guessed my decision for surgery hundreds of times before January 5th. I can honestly say that surgery was one of my best decisions I have ever made. I have a video of my first golf round after surgery in my signature. My swing is much better now. I couldn't begin to imagine how I could swing a golf club with long rods and screws in my spine! Now, at three years post-op, there is no way that I feel deprived because of my surgery. While nothing is a guarantee, I believe my odds are better for an active life for the next 30 years because I had surgery.

titaniumed
05-11-2014, 01:19 AM
Its good news that you get to skip the ALIF....

I have a mobility thread in my signature with a few photos. You might want to take a peek. I have adapted wonderfully.....Adapting and patience will be things you will think and know about after a few years of recovery time.....it’s a multiple year recovery at our age. I was 90% recovered at 12 months. 100% after 2 years.

One of our main fears has to do with surgical pain and post op pain....It really is a scary thing wondering about what is going to happen....Fear of the unknown. After a few surgeries, after gaining knowledge, this fear isn’t so bad anymore, I can walk in and be pretty cool about it now....For anxiety, I would walk. For extreme anxiety, I would run and run till it passed. Not as bad as Forrest Gump, but you get the idea. Breathing deep is important before and after our surgeries.

For those in pain before surgery, what happens is that you trade pains. The old aches get replaced with surgical and healing pains. You will recover from these pains if everything goes well. Complications can happen, and we see and read about some of these things here. The main ones are infection and pseudarthrosis, or a non-union. Our main goal is to fuse. We want that bone to grow, fuse, and create a solid bridge of bone between our vertebrae. The rods hold everything till we fuse.

On the topic of unspeakable agony...The worst was when I passed an 8mm kidney stone. Renal colic is the worst, especially with a large scoliosis. I did this before my scoli surgeries so I had some experience with major pain. Major pain is dealt with major drugs.....and yes, they work well. Morphine, Diaulid, Lortab, etc are the ticket. These injectables and IV meds control 100% of your pain. It’s the weaning that’s hard, and we all have to wean off our meds. You will be weaned to oral medications before you leave the hospital, I think the most common would be Oxycodone or Percoset, which is Oxy with Tylenol. These carry us through the first few months, and the average time for complete weaning would probably be around 8-12 weeks. This should be a goal in your recovery. After I was home, I took many hot hot baths per day for 3 months for pain. 106 degree water works very well.

Some of the things that happen to all of us is that its hard to get comfortable after surgery. The hospital beds had me quite upset in the hospital, I couldn’t believe that they could actually build something so uncomfortable. I have known people to have friends sneak a piece of foam into hospitals because of this. I would get a piece of latex (Bone colored) foam, a topper, 3-4 inches thick for your bed. I considered this the most important thing other than having a positive attitude. Know and trust that you will climb this steep mountain, and summit. Its focusing on your goal, keeping your eyes on the prize that counts. Have trust in your surgical team. Dr Boachie has been operating on these kids in Africa for many years now....If anyone has the hands on experience with devastating deformity cases, its him.

He needs a shirt that says “Been there, done that”.

Heck, I need a shirt that says that. (smiley face)

Ed

susancook
05-11-2014, 02:31 AM
Don't worry about waking up in agony. There are some great drugs that make pain fairly controlled after surgery. Talk with your doctor and you will be reassured. At UCSF, the meds resulted in my not even remembering the pain....or most of my 2 weeks in the hospital. Pain does vary some, but it is generally very well controlled.

So, take a very deep breath. You will be fine! Honest!

Sending relaxing thought your way,

Susan

Rise
05-11-2014, 03:58 PM
Rise,
A good friend and huge support person for me before and after my surgery, also by the name Karen, noticed your post and asked me to give you her email. After several attempts, she has been unable to post on the forum. Her curves were 89 thoracic and 90 lumbar and Dr. Boachie was her surgeon. Kbeard2086@aol.com. She would like to correspond with you and answer your questions.

I was extremely active before my surgery and thought even though my curve seemed to be progressing, that I probably would never have surgery. After all, I wasn't in a lot of pain. To make a long story short, I had surgery with Dr. Lenke on January 5, 2011 at age 60. I thought that my life would never be the same. I was pleasantly surprised. Recovery from surgery was tough but not as difficult as the stressful time waiting for 13 months after deciding to have surgery. I second guessed my decision for surgery hundreds of times before January 5th. I can honestly say that surgery was one of my best decisions I have ever made. I have a video of my first golf round after surgery in my signature. My swing is much better now. I couldn't begin to imagine how I could swing a golf club with long rods and screws in my spine! Now, at three years post-op, there is no way that I feel deprived because of my surgery. While nothing is a guarantee, I believe my odds are better for an active life for the next 30 years because I had surgery.

Karen,

Thank you so much for your reply. Seeing you swing a golf club and reading that you have no regrets is HUGE! It's more than a little reassuring to think that life may not quite be same "on the other side" but it can still be an active one. One of my big joys/escapes is walking Siesta Key with my husband and being able to do that (and pick up shells) without pain is a big goal of mine.

Also, I will definitely reach out to your friend, Karen. It sounds like she and I have similar paths to travel.

All the best. I am sure I will reach out to you with more questions/concerns.

Risë

Rise
05-11-2014, 04:02 PM
Thanks to all of you for your insights and stories. It is always reassuring to know that we don't walk alone and it is a comfort to gain strength and wisdom from those who have gone before.

I am sure there will be more questions on my part and I truly appreciate your willingness to share.

Best,
Risë

Wish2bstraight
05-12-2014, 06:43 PM
Hi Rise,

I had surgery almost a year and a half ago at age 62, almost 63. As many of us say, we are on a two year recovery plan. The first year of my recovery I was very careful about everything. Now I am starting to garden, practicing my golf swing (I do a better job without a golf ball while in my backyard). I was off all drugs within three months. Oh yeah, my curve was 80 degrees and getting worst.

Even though the doctor was not able to give me the complete correction he wanted, due to vertebrae that had fused together on their own, I am still thrilled I had the surgery. To sum up my story in one thought, the floors in my house are either tile or wood. I was unable to sweep more than one floor without pain,I can now sweep every floor at one time.

Hope my comments help put you at ease.

scooter950
05-13-2014, 08:09 PM
hi Rise, what a curve you have! I share your hobby of beach combing - it's the one "fun" activity I try to do - but like you said, it causes pain, bending over to look for and pick up shells. i am planning surgery for this year too, I'm 56 yrs and I want to stabilize the curves so that I can walk! welcome and thanks for posting- you're going to one of the best surgeons! God bless you~ Jamie in TX

debbei
05-14-2014, 12:27 AM
my story is similar to yours. I was braced as a teenager and considered a success at that time; however, as I aged both curves progressed. I had surgery at age 46, and it was the best thing I could have done. I had a few bumps along the way, but overall my recovery was smooth and I'm released from my surgeon unless I have any further problems. I also was scared to death of the surgery, and honestly the anticipation/fear was worse than reality. Not to say that it wasn't very VERY tough, but they did a good job on managing my pain. Now I rarely think of my back any more; sometimes I even forget that I have 2 rods in my spine.

I see you're having surgery in NY; where are you located? I'm in NJ.

Doodles
05-14-2014, 07:06 PM
Rise--
Welcome to you--another new member since last I checked in. You do have quite a curve to which I can relate. You will get lots of good info from this bunch as you have already found out. Good luck. Janet

Irina
05-16-2014, 11:29 PM
Hi Rise,

You said that you workout, garden, clean, travel and I assume you're concerned about not being able to do those things after the surgery. I am pretty sure you'd be able to do all of those things if you want. I didn't have a lot of pain, it depended on what I did. I could sit in a comfortable chair for many hours, but I could not stand still for more than 5 minutes. I was in pain after 5-10 min of walking and needed to sit down and rest after 30 min of walking. Now I can walk for hours without any back pain.

Travel was the last drop that pushed me towards the surgery. We went to NYC in May 2012 and I was in so much pain from walking! We could not see all the things I wanted to see and it really affected me... I pushed through the pain, would come back to the hotel and just collapse. That vacation was the last drop that I really needed. I am looking forward to our upcoming vacation in Vancouver soon!

I work out, I never gardened before the surgery and don't have any interest in doing it now, so can't comment. I always cleaned the house myself because I am cheap and picky :-) and didn't want to spend money on a cleaning service. I hired cleaners right before the surgery because there is no way you'd be able to clean your house for a while. I though I'd keep my cleaning people for a year and than go back to doing it myself. Well, I am perfectly capable of cleaning a house now, but I don't want to anymore... I got spoiled. It's so nice to come to a clean house on Fridays after work and don't clean a toilet on Saturday! My cleaners come every other week and I do a little spot cleaning during a week, but let them do the heavy stuff.

And talking about a cosmetic benefit is kinda lame because nobody goes into this huge surgery just to look better, but you'd be so happy with the way you look! I still can't believe it! After being crooked for so many years, being able to wear anything I want and look good is mind blowing! And seeing other people faces when they see you for the first time after the surgery is priceless :-)

leahdragonfly
05-17-2014, 10:31 AM
Hi Rise,

I was fused T8-sacrum/pelvis three years ago at the age of 44. I too was very worried about my loss of mobility. While I will never love being fused, I am not so terribly restricted in my mobility now that I am healed. I am an active mother of two school-aged kids, work full time in a physically demanding job as a CV nurse, am able to do house work, take care of my flock of 48 chickens, hike, swim regularly, etc. There are some motions that I can not do, but I have found other ways to do the things I want to. My back is essentially pain-free and I do not take any medications regularly, even Tylenol.

There are definitely some motions I can't do…it is difficult to get things out of low cabinets, so I have to get on my hands and knees for that (or make my kids get what I'm looking for). Stooping isn't really possible. I can now clip my own toenails but I was difficult until at least 18 months post-op. Pedicures solve that problem. I do have a housecleaner who comes once every two weeks which is great, but I am able to vacuum, mop, etc.

Many motions and activities will be put off limits by your surgeon for a certain number of months after surgery. These restrictions are on bending, lifting and twisting. Many people are restricted from these things for about 6 months. I didn't do any of these for a year after my revision, and didn't fully allow myself to test my limits until after 2 years post-op. I have made significant improvements in mobility since then, and have gotten a lot of deep-tissue massages to help loosen some of the tight scar tissue I have in my back.

Please feel free to contact me with any questions you may have. I will send you a private message with my e-mail in it.

Rise
05-26-2014, 06:41 PM
I'm beginning countdown mode for my surgery with Dr. Boachie. Still grappling with whether or not to donate my own blood but now have another concern to focus on. I'm curious what the opinion of those who have walked this road before is of going home vs. going to a rehab facility for a bit. As usual I can see pros and cons for either scenario. Any insights would be appreciated.

mabeckoff
05-26-2014, 06:47 PM
I have always gone to a rehab after any of my surgeries.I like having PT twice a day in the beginning. Everyone is different. What is your home setup like and will someone be home with 24 hours a day for the first couple of days?

Rise
05-26-2014, 07:05 PM
I have always gone to a rehab after any of my surgeries.I like having PT twice a day in the beginning. Everyone is different. What is your home setup like and will someone be home with 24 hours a day for the first couple of days?

Thanks Melissa. My husband will be home for the first week or so. The kicker is
I have 3 dogs who demand quite a bit of attention and keeping them at bay in the beginning may be a challenge.

Also, I'm concerned about showering and washing my hair in the beginning.

Irina
05-26-2014, 07:10 PM
I went straight home because I had someone with me around the clock during the first month. My husband took a month of PFML, paid family medical leave, and he was paid 100%. If I remember correctly, the state paid 67% of his salary and his company paid the remaining 33%. Have your husband check with his employer if this option is a possibility. My parents also live 10 minutes away and they spent a lot of time with me too.

I remember the hospital saying that you need someone with you 24/7 for a week after discharge. If you can have someone with you at home around the clock for at least a week (and I would say at least 2-3 weeks), I would recommend going home. If not, than rehab is a better option.

Irina
05-26-2014, 07:23 PM
Thanks Melissa. My husband will be home for the first week or so. The kicker is
I have 3 dogs who demand quite a bit of attention and keeping them at bay in the beginning may be a challenge.

Also, I'm concerned about showering and washing my hair in the beginning.

I was not allowed to take a shower for about 10 or 14 days or something like that, until stitches dry out. It's all foggy now, but may be someone told us it's OK to cover your stitches with some plastic and take a shower, but make sure water doesn't get in. Can't remember... anyway, I decided not to take chances and rather be stinky for 10 days than sorry. You can take a sponge bath, but that's about it. I bought those dry shampoo shower caps and they only made my hair feel greasier. The first shower felt like heaven! Buy a shower chair for home because you'd be weak and dizzy. When I was finally allowed to take a shower, my husband would get in the shower with me and help me wash.

golfnut
05-26-2014, 08:31 PM
Rise,
Dr. Lenke did not want me to donate my own blood and felt that the blood bank was safe.

I was willing to go to rehab following surgery because I knew that my husband was worried about being able to take care of me. As it turned out, I did not have a choice. I did not qualify to go to a rehab. center because I was able to do various things, such as, use the sock aide, walk up and down 3 steps, and a few other requirements which I don't remember. I imagine insurance companies prefer that one is sent home from the hospital if at all possible. I was pretty self-motivated to walk as much as possible in the house (snow and ice outside in January) so it turned out fine , but I think a good rehabilitation center could be a positive thing if insurance will pay.

jrnyc
05-26-2014, 09:49 PM
Rise, can you hire someone to help take care of dogs, walk them, etc....
so your husband can concentrate on taking care of you...????

best of luck...
jess...and Sparky, the wonder puppy

LindaRacine
05-26-2014, 11:15 PM
Hi Rise...

I don't know how much time you have before surgery, but would it be possible to get the dogs trained? If a dog jumps on you and knocks you down, or if a dog walks in front of you and trips you and you fall down, you could be hurt badly. I also like Jess' idea of hiring someone to walk the dogs. Tired dogs are a lot less likely to need attention.

After my surgeries 3 years ago, I went home by myself and was OK. We're all different, so my advice would be to go with the flow. If you still need a lot of help, HSS will send you to rehab. If you can avoid rehab, you'll reduce your risk of infection considerably. I think that's the only big downside to rehab.

Regards,
Linda

danicaf
05-27-2014, 10:54 AM
Hi Rise,

I'm new to the forum but currently looking into surgery. I met with a surgeon last week and he told me that a week or two in rehab is worth a month of recovery at home. When I get to the point of having surgery I will try to set up time in rehab and if I change my mind...I'll go home. As my doctor said, they can't keep you there, it's up to you if you find you want to go home. I'm 55 years old so obviously I'm not a Medicare patient, which I believe would be a different story as they have their own set of rules for rehab after a hospital stay.

Best of luck to you.

Diane

Susie*Bee
05-27-2014, 04:44 PM
So many different thoughts from people and their doctors! Mine really felt I would be better off at home if at all possible. I was in the hospital for 11 days though, and my husband's job was just 1/4 mile from our house and he could be with me for the first few days and then stop by all the time after that to check on me and fix me lunch, etc. We were actually about to see about rehab when I was in the hospital but then started getting better, and Dr. H was very glad about it. I was more comfortable at home, PT and OT from a local hospital came to check on me a few times (OT came to make sure our house was ok for me to maneuver around and do things in, bathroom ok, etc.), PT just made sure I was logrolling ok and other things and had me use the stretchy bands for my arms and hold the counter and go up and down for my legs. Home was nice. It just depends on what you need.

Rise
05-27-2014, 06:42 PM
Rise, can you hire someone to help take care of dogs, walk them, etc....
so your husband can concentrate on taking care of you...????

best of luck...
jess...and Sparky, the wonder puppy

Thanks everyone for your replies. Unfortunately, our dogs are simply spoiled rotten so training 'ain't going to work at this point. Walking them isn't an issue because we are fenced in and since their weights range from 22-32 lbs I'm not worried about them knocking me down. The biggest adjustment is going to be keeping them out of our bed.

I think I'm going to take a look at a couple of rehab places and keep my options open. I'll see how I feel after surgery. I know I'm going to want to come home but depending upon how helpless I am I'll make the decision then. My husband is very willing to take care of me and is encouraging me to stay home but something tells me that may get old fast!

Thanks again!

mabeckoff
05-27-2014, 11:22 PM
Thanks everyone for your replies. Unfortunately, our dogs are simply spoiled rotten so training 'ain't going to work at this point. Walking them isn't an issue because we are fenced in and since their weights range from 22-32 lbs I'm not worried about them knocking me down. The biggest adjustment is going to be keeping them out of our bed.

I think I'm going to take a look at a couple of rehab places and keep my options open. I'll see how I feel after surgery. I know I'm going to want to come home but depending upon how helpless I am I'll make the decision then. My husband is very willing to take care of me and is encouraging me to stay home but something tells me that may get old fast!

Thanks again!
Even if you go to rehab, when you get home there will be plenty of time for your husband to take care of you

leahdragonfly
05-28-2014, 07:54 AM
Hi Rise,

I think there is a huge variation in care available "at rehab." I had my surgery in Portland, OR at the large university hospital, but I live 2 hours away in a smaller college town of 50,000. I asked about rehab and the only thing available to me in my hometown would be a stay at a nursing home --- definitely that would not have been helpful, and probably would increase my infection risk massively! Others mention being in very specialized rehab hospitals where they had excellent pain control and twice per day visits from PT, but I definitely didn't have anything like that available to me. So it may depend a lot on your location and insurance.

I was not in good shape when I first got home, but it was good to BE home with my family.

susancook
05-28-2014, 05:25 PM
I was in a large university hospital in San Fran and went to an acute rehab unit of a nearby hospital. I was in the hospital for 14 days, but only walked. I was also really drugged out for pain management in the hospital. The rehab hospital was good, mostly. The qualifier to go to the "acute rehab" was that you had to be able to do 3 hours of therapy a day. At first, I thought that it would be impossible, but I managed and learned self-care, improved walking, and better motion management. I had my first shower there about 16 days after surgery. i had daily PT, OT. I took lots of naps. I also worked on getting pain meds better controlled. They also found that I had a slight infection and was anemic, so took care of that. My brace did not fit well, so the folks at UCSF came down and picked it up and fine tuned it.

My hospital experience was very intense, from the drug management perspective. I remember almost nothing of my 2 weeks in the hospital until I got into the ambulance to go to rehab. Maybe that's good?

I liked having another time to try to figure out how to manage my new body as independently as possible. I also could rest well and access medical help if needed. I did have an episode of chest pain which was only a small area of collapse in the lung and not a blood clot as they thought that it might be. If I had been home having to call 911, that would have been a huge ordeal! (just thought about that!)

Susan

titaniumed
05-28-2014, 07:38 PM
My hospital experience was very intense, from the drug management perspective. I remember almost nothing of my 2 weeks in the hospital until I got into the ambulance to go to rehab. Maybe that's good?


Same here....My surgeon warned me a few times that my pain levels were going to be on red line, and that they would keep me out for a few days. The hospital told me that I was on the strongest medication regiment known to man. There is no PCA button when you don’t have the ability to push a button. On these meds, there is no pain, no hallucinations, no thought, no memory. I lost a week of thought. They do have the ability to turn all pain off, no doubt.

Weaning down off of this is not pleasant, and they do reduce. So after 10 days of NPO, no food, hoses everywhere, I was tired of playing hospital and ran home not being weaned to Oral medications. This you don’t want to do. You can wing re-hab, but you have to remember that you want to be weaned off injectable’s BEFORE you leave. I’m the only one that does these crazy things.....

They sent the nurses and PT people to my house everyday instead. They asked me “How did you get out of the hospital, your beat?”

I was.

But that’s ok....Hard chapters in our lives come and go, and it always turns out in the end.

Just thinking about clearing out all that bone, removing all the bad discs, and making room for nerves is something. The relief of extreme lower spine pain was like popping a large weather balloon.

It worked....It took me a long time to get used to being pain free.....I was in pain for decades.

Rise, Do you have a date?

Ed

LindaRacine
05-28-2014, 09:37 PM
They do have the ability to turn all pain off, no doubt.

Maybe, but I think it's more likely that you were getting an amnesiac, and just don't remember the pain. :-)

titaniumed
05-28-2014, 11:27 PM
Linda, I wish I knew what they were giving me in ICU.

I was out after the anterior and my surgeon had to get my permission to continue with the posterior. They stated this in the hospital reports. He woke me up with a twist of a valve.

“Ed, how are you doing?” “Can we continue on with the next surgery?”

It was surreal...This is what I saw....... Check out the neck hardware! LOL Its very Monty Python having a Roman support column for scoliosis hardware!
(Scroll in)

This would make for some great art work for the scoliosis surgeon. (smiley face)
Ed

rockycarm
06-24-2014, 08:01 PM
I've been reading these posts for so long truly believing that despite a significant curve I was going to be the exception and escape surgey. Not! I've had scoliosis since I was a kid and as a child was always a borderline candidate for surgery. (Curve was in the 40's and wore a brace for years - treated by Dr. Richard Ulin in NYC). Flash forward to my 30's and 40's and increased pain and increased curves. Went to see Drs. Neuwirth, Lonner and Boachie. All agreed surgery was the inevitable way to go. I decided to stay with Boachie and take a wait and see approach. Began "training" for surgery by going to the gym and staying fit. Pain was always there but hey, I'm tough so living around it wasn't a big deal. My fear of surgery was bigger. Well, now at the ripe old age of 49 my lumbar curve is 91 degrees (up 10 degrees from a year ago) and with Dr. Biachie relocating in October the writing is on the wall.

I'm scheduled with Drs. Boachie and Kim at HSS for surgery in July. Fusion will be from T9 - sacrum. Help! You'd think after all the time I'd be prepared but not even close! Fear is huge! I've always been way physical despite my condition - I workout, garden, clean, travel and just generally live! I fear what is going to happen to me post surgery and that the pain that is now bearable is going to be replaced by surgical agony.

Any insights that anyone can give me would be much appreciated. The fear of making an irreversible mistake is daunting!

Rise,

All I can say is that I too had surgery with Dr. Boachie in 2012 and wouldn't do anything different. I must say that it took me many years to come to my decision as well and once decided I started to prepare mentally. I did a lot of research on what to expect, how to prepare, prayer and meditation. The day I scheduled my surgery I cried but knew it was a start to a new me as I felt I really didn't have much of a choice if I wanted a quality life in the future. I was 53 years old at the time with 3 curves 2 over 65 degrees. I was fused from T9-S1 and it took me about 5 months to get back to work f/t. It is now 2 years since my surgery and feel great. Do I feel like I did before surgery? No. I do not have the pain I had before but I do have some restrictions. I do everything I did before but maybe differently or slower but I do them. I can't say more about Dr. Boachie and the confidence I have and had in him. I am heartbroken he is leaving but have been reassured by him and the staff that Dr. Kim is the guy. My blessings to you in your decision.

Rockycarm

susancook
06-24-2014, 10:11 PM
Same here....My surgeon warned me a few times that my pain levels were going to be on red line, and that they would keep me out for a few days. The hospital told me that I was on the strongest medication regiment known to man. There is no PCA button when you don’t have the ability to push a button. On these meds, there is no pain, no hallucinations, no thought, no memory. I lost a week of thought. They do have the ability to turn all pain off, no doubt.

Weaning down off of this is not pleasant, and they do reduce. So after 10 days of NPO, no food, hoses everywhere, I was tired of playing hospital and ran home not being weaned to Oral medications. This you don’t want to do. You can wing re-hab, but you have to remember that you want to be weaned off injectable’s BEFORE you leave. I’m the only one that does these crazy things.....

They sent the nurses and PT people to my house everyday instead. They asked me “How did you get out of the hospital, your beat?”

I was.

But that’s ok....Hard chapters in our lives come and go, and it always turns out in the end.

Just thinking about clearing out all that bone, removing all the bad discs, and making room for nerves is something. The relief of extreme lower spine pain was like popping a large weather balloon.

It worked....It took me a long time to get used to being pain free.....I was in pain for decades.

Rise, Do you have a date?

Ed

Ed, whatever they gave me made me fairly dysfunctional. My husband said that I would cry and say that I was in severe pain and that I needed something (I have vague recollection of this), so my husband would tell me to push my PCA button. I had no idea what he was talking about as I just continued to cry and ask for something for pain. After the nurse came in, she said that she could not do anything because it was up to me to use the PCA. Another crying episode, and my husband hit the PCA button and I went to sleep. That apparently happened many times.

I will ask for a copy of my hospital records. Should be interesting reading! Susan....what is my name again?

Ed: so you are saying that you left he hospital early to be with your ex-wife? You were on major drugs!

Post Flashback: I remembered the name of the drug that hey gave me: Ketamine. It is for analgesia and provides amnesia.

Rise
07-12-2014, 03:46 PM
Hi All, I had my surgery 7/2 at HSS w/ Dr. Boachie and cannot say enough about the level of care I received there. Staff was consistently attentive and caring. I was fused T9-S1 and am told all went according to plan. I went home on 7/8 although I was cleared on the 7th I was not emotionally ready to leave the safety of the hospital. My pain is controlled but the sensations are new and sometimes frightening. Physically, I'm told that I am ahead of the curve but again, my head and fear don't easily accept that. If I had to give one piece of advice to anyone considering this major life changing surgery it would be to get into the best physical shape you can. My years working out at the gym have enabled me to get in and out of bed with relative ease and walking and steps are fairly routine (with a cane for support). Similarly getting myself to the bathroom etc is not an ordeal. Best of luck to everyone. I have a feeling that despite good initial progress this is a very long road.

Risë

golfnut
07-12-2014, 04:48 PM
Rise,
I am glad to hear your surgery went well. I couldn't agree more with your recommendation to get in the best physical condition possible before surgery. Remember to be patient with yourself and walk as much as possible! Are you getting along okay with your dogs? We have a fenced in backyard, but my two dogs were used to me walking them in the morning and evening. My husband hired a neighbor to walk them for several months. I was never one to take naps or sit around much, but Nicki must have sensed that I needed a recovery buddy and she was with me day and night. Best of luck with a smooth recovery.

susancook
07-13-2014, 01:53 AM
Rise, welcome to the other side! Life will progressively get better but expect setbacks. My PT said that my back is just starting to adjust to the muscles being relocated with the changes from the scoliosis curve to being fairly straight.

Try to be patient. Patience is something that I am learning about.

Susan

Irina
07-13-2014, 11:50 PM
Thank you for letting us know, Rise. I am happy to hear that the surgery went well. Wishing you speady and uneventful recovery.

Rise
07-14-2014, 03:31 PM
Hi Irina,

Is there any such thing as an up eventful recovery? I sure hope so. I think I prematurely tried to cut back on pain meds and boy did I pay the price! It's catch 22. I hate taking the meds because of how they mess with my head but the pain becomes draining and unbearable.

Is this normal? Where should I be at 12 days post op? I still feel so helpless and vulnerable. I've showered and washed and blow dried my hair (with my husbands help) a few times now and getting in and out of bed is fairly easy BUT I feel limited in my movements and am getting very inpatient. Any advice?

Risë

JenniferG
07-14-2014, 05:30 PM
I was still in hospital at 12 days! This is very early out and all I can say is "Patience." It WILL get better.

Ed, I nearly lost my coffee when I saw that pic. Holy dooly! Hahaha! You said Yes" to that?

titaniumed
07-14-2014, 07:24 PM
Ed, I nearly lost my coffee when I saw that pic. Holy dooly! Hahaha! You said Yes" to that?

Funny how I will post something bizarre and get no response....That’s how I know its good. LOL
Now how could I say no? I guess the law is the law.

Congratulations Rise, slow and easy now.....My first 6 weeks were basically a “survival mode” where every single moment was trying to get comfortable.This is the hard part of it all, and it will pass in time. These surgeries teach patience for sure. Improvement seems to come in staged events. After 4 weeks suddenly I felt around 10-20% better.

Remember, No bending, no, lifting, no twisting, and no falling allowed.

Medication management can be tricky in the early stages....keep notes in a notebook of all meds, BM’s, walks, food etc....

Reduction without withdrawing can be done at 20% per week.....Constipation seems to be the hardest thing, this has to be managed carefully. Warm prune juice seems to be the favorite, and having a bottle or 2 of Magnesium citrate is good to have “just in case”.

Ed

leahdragonfly
07-14-2014, 07:26 PM
Is there any such thing as an up eventful recovery? I sure hope so. I think I prematurely tried to cut back on pain meds and boy did I pay the price! It's catch 22. I hate taking the meds because of how they mess with my head but the pain becomes draining and unbearable.

Is this normal? Where should I be at 12 days post op? I still feel so helpless and vulnerable. I've showered and washed and blow dried my hair (with my husbands help) a few times now and getting in and out of bed is fairly easy BUT I feel limited in my movements and am getting very inpatient. Any advice? Risë

Hi Rise,

You sound so very much like me (and I had a similar length fusion, T8-sacrum), I recognize myself in your post!!! I know you feel impatient now, but my friend you have a LOOONG way to go, so please settle in to recovery and don't try to push yourself so much. There is absolutely no way to rush this recovery, period. I thought I could be tough and suck it up to hurry things along, but it just doesn't work like that. You have to allow your spine to heal thoroughly, because you only have one chance to do it right. Believe me, I went through a major revision at 15 months post-op for broken rods and it wasn't any fun at all. Please take it easy and let your body heal. It takes a long time, but it will happen in time. This recovery is like recovering from being hit by a speeding 18-wheel truck.

At this point you can of course shower, and take 2-3 short walks per day (5-10 minutes each), move around the house, and watch lots of TV. You need to lay down when you are tired, eat very nutritious meals, and most importantly you need solid pain control. It is way too soon to try and go off pain meds. Keep in touch with friends to keep your spirits up.

Please hang in there, and accept this advice as the loving concern that it is from someone who has been there twice. You will feel better in stages. For me it was 12 days, then 2 weeks, 4 weeks, 8 weeks, etc. You will hit many plateaus where you will be discouraged, or even have set-backs, we all do. Significant "aches and pains" persist for many months, as well as fatigue and even feeling foggy in the head. I felt "recovered" by 6 months, but continued to make many improvements at one year and even after 2 years. I am now a few months past 2 years and have regained a lot of mobility and lost a lot of fear since the 2 year mark. I even survived falling down an entire flight of stairs on my back without breaking anything!

Take care, please let us know how you are doing as things go along.

Irina
07-14-2014, 09:38 PM
I will second what everyone one else said - take it easy. One way to help you be patient is to look at this long recovery as your only chance in life to take care of YOU and not everyone around you. You don't have to take care of kids, husband, dogs, house. It's your chance to slow down and forget about work and any stress. Find some series on Netflix or browse online clothing stores. Just don't buy anything while you are heavily medicated :-) Online shopping kept me entertained for a long time!

Rise
07-15-2014, 07:50 AM
Hi Everyone,

I really don't mean to sound ungrateful for what I suppose is going relatively well. It's just such a frustrating and frightening process. Like nothing else I've ever done. I ran from this surgery for 35 years always saying that once done, it could NEVER be undone. No " oops, I made a mistake let me go back."

Now, the weird sensations, the incredible itchiness and numbness (to the point of pain?) the naseau, the " I think this is an improvement" followed by " but I thought I was improving, what happened?" all have me twisted.

I can't help but wonder - when do you know, really know it's going to be ok? I guess I'm just scared.

Risë

titaniumed
07-15-2014, 02:46 PM
Rise, don’t ever look back, always look forward and think about how well you will be doing in the future. It will get better.....

Right now you have to hang in there and be strong. We know it isn’t easy, but that’s what we have to do.

Think positively, and try not to worry. The first few weeks are tough for sure.....

The itchiness and numbness will take months to go away....it goes away slowly.

When do you know its going to be ok? You know this now, its going to be ok, patience!

Learn to take deep breaths.....Breathe in deep and hard, hold for a tad then exhale completely. Repeat for anxiety. Go for short walks often through the day.

Hang in there

Ed

tae_tap
07-15-2014, 03:16 PM
Rise,
We all were terrified of the entire process too. The waiting game is the worse because it gives you time to think of every negative thought or outcome. A big part to over-coming this is to remain positive and to let all the bad energy disappear. If you have been running then you obviously know what you need to do, so it is time to just hop on that roller coaster and buckle up. At the end of the ride (even if you felt your stomach in your throat) will be glad you did not go down the chicken escape. Keep your head up!
Tamena

the_baroness
07-15-2014, 04:21 PM
Rise - I had itchiness and numbness too. At the time I described it as "fire ants biting me all over on my back." My surgeon's nurse Oksoon said it was all the nerve endings that were cut coming back alive and starting to regenerate themselves. It was highly unpleasant, so she put me on Neurontin (actually, the generic form, Gabapentin.) That did the trick and the fire ants went away. But I have to stress, I'm really not sure I recommend taking this medication. It affected my vision, and made everything blurry, and my husband tells me it made me even loopier than the oxycontin. And on top of that, and worst of all, it was extremely difficult to get off of. I had severe, nightmarish withdrawal symptons. It's some strong stuff. Although it was really very effective during a time when I needed it, and I really didn't need nice clear vision and clear mind during that time anyhow! If you end up taking it, just be careful about how you taper off.

For many months the lower right quadrant of my back had no feeling whatsoever. But that seems to have gone away now. Occasionally a bout of itchiness comes back randomly and unexpectedly. I always think maybe that's when a big round of healing has started up inside there again.

You said your surgery was with Dr. Boachie at HSS? Are you in NYC? I often think it might be nice to get a little NYC scoliosis and scoli surgery support group going. Although I say that now while I'm just barely over the cusp of having enough energy to function normally, so adding something else into my schedule probably isn't such a great idea! But everyone on this list is so great, I think it might be nice to meet up in person one of these days. I met a man out the other night who had a few levels fused with instrumentation, and it was so nice to actually talk in person to another human being who has gone through this.

Anywho, best of luck. Use this time to rest. I didn't listen to everyone's advice and I didn't rest enough, and I think it impeded my recovery for a while. So rest up! I'm wishing you good health and a good recovery.

golfnut
07-15-2014, 09:49 PM
Many have already given great advice. I think when I was in the recovery mode, everything was such a "baby step" that I almost felt I wasn't improving at all. Actually, I was making gains, but it was so slow that I didn't notice. This surgery takes a ton of patience and the improvements in flexibility and fewer aches can occur even after your 1st and 2nd year anniversaries. Be proud that you had the courage to have this surgery and keep walking!

Irina
07-15-2014, 11:51 PM
Hi Rise,

You are so early in your recovery - I felt like s...t first month. I remember feeling significantly better at about 6 Weeks, so don't panic - it will get better. Take pain killers and don't try to cut it down yet. You will taper off when time comes, but right now no need to be a hero. Hang in here.

scooter950
07-16-2014, 11:01 PM
Oh Rise, your words echo my thoughts "once this is done, it can't be undone" but... you are in control. Your body was not going to get better, now- a skilled surgeon has corrected your curvature- wow. One of the best if not THE best! all you should do now is rest, eat, drink and walk a little. i'm amazed tht you are posting so much, so soon. tell me- how swollen was your face>? did your family tell you? I am worried about scaring my husband when he sees me post-op. It's great to hear about your progress, don't doubt anymore. baby steps towards improvement every day! God bless you ~ Jamie in TX

Irina
07-16-2014, 11:30 PM
Hi Jamie,

It's not Rise, but I wanted to answer your question - my face was not swollen, may be a tiny bit. I even asked my husband to take my picture when he first saw me and I had a big smile on my face - yey! it's over! You will have many tubes sticking out of you though.

My husband said that he was surprised by how lucent and coherent I was, but I did have hallucinations. I understood that these were hallucinations and told a doctor abut it. First day or two I saw very bright pictures of flowers, most often lavender fields... very bright and beautiful. I also had sound hallucinations - it seemed to me that I heard mumbled Russian speach. I could not make the words, but it sounded like news at very low volume. At first I looked around thinking it's my dad speaking, but he was not in the room... my husband was there, but he is an American. I stared at tv thinking it's news on tv, then, after some time thought...wait a minute...I am in an American hospital, why would tv speak Russian? I actually clearly remember my brain trying to figure out what's going on and slowly I understood that I was hallucinating...

mabeckoff
07-17-2014, 12:52 AM
I had plenty of hallucinations as well.I thought that I was back in NJ and my surgeons came every morning from CA to visit me. I ,also, thought that the air conditioning duct work was a a water park and I was mad that my husband would not take me there

Drugs are great

Rise
07-17-2014, 07:59 AM
Hi Jamie,

Yes, my husband and sister told me my face was swollen when they first saw me. It was pretty bad BUT was gone almost entirely by the next day. Personally, I noticed that my hands/fingers were very swollen for a few days post op but this also disappeared. I really think they keep you so hydrated with iv fluids that this swelling is normal. Believe me, this is the least of it.

I'm actually surprised at how lucid I've been since coming home. I actually feel mentally and physically strong. As I've said, my gym workouts were a huge positive. Without them I think I'd be a mess. I can't stress this enough.

My biggest issue is the nagging, excruciating and annoying down to your soul nerve pain/discomfort. It's like nothing you can imagine or describe and it sucks the life out of you. Imagining a day when I can wake up without it is so very hard and that's where my latest fears come in. Will my nerves heal???? And WHEN???

Risë

JenniferG
07-17-2014, 06:38 PM
My face was very swollen. So much so, that I couldn't open my eyes until the next morning. I'm glad there are no photos....

Rise
07-22-2014, 04:10 PM
Hi all,

Well I'm three weeks post op tomorrow and right now one of my biggest complaints is the stiffness. It is virtually impossible for me to shave my legs below my thighs or to even put lotion on. Does this get better? I'm fused to the sacrum and I'm hoping that this is just a tight stage but I fear this may just be how it is going to be. Sacrum people - what's in store for me?

Risë

golfnut
07-22-2014, 05:21 PM
Rise,
I'm not even sure if I noticed hair on my legs at 3 weeks and I have dark hair and shave my legs daily! I attached a long plastic handle to throw away razors and used it for probably 6 months. I also needed tongs for toilet paper for a long time. My, oh, my . . . it gets so much better!!!! I would recommend not attempting to stretch to put on lotion or shave your legs. I obeyed the no bending, no twisting, no lifting restrictions for over four months. It's such a small sacrifice for the long term benefit of fusing. Many of us noticed improvements in flexibility even after two years. Just try to be patient now and remember that it is really early in your recovery.

mabeckoff
07-22-2014, 06:42 PM
As others have said, you need to be patient. You re only 3 weeks out from surgery. Before each of my many surgeries, I have my legs waxed so I do not need to worry. It will get better but it takes time. If you rush it, you will have more problems.

Melissa

Rise
07-22-2014, 06:59 PM
Not to sound like a total idiot because I know No BLT's but what exactly does that mean? I find myself bending down at the knees and getting up from that position without bending at the waist. Is that acceptable? I lift a half gallon of milk out of the refrigerator door - is that acceptable? Sometimes I wake up and the pillow that started out between my legs is not there any longer and I'm a bit curved or spoon sleeping.

How much leeway is there when they say no BLT's.

Risë

mabeckoff
07-22-2014, 08:50 PM
I was only allowed to lift or carry 5 lbs in the first few weeks after surgery.

Ask your surgeon

scooter950
07-22-2014, 09:26 PM
Rise- do you have an external brace? I just thought- if you did, if you slept wearing it- the brace would keep you from bending. When you wake up and find yourself sleeping sort of curved- does it hurt? did the pain wake you up? I would be concerned if your postion caused pain. As for the milk - well- you have to get it for yourself, no one has a servant standing around at their beck & call..... just be careful, thankfully you are able to use your leg muscles ( bend at the knees!) it sounds like you are doing so well, so soon after surgery. but also sounds like many adjustments to life, being fused to the sacrum. sending thoughts & hopes for an uneventful recovery.. Jamie in TX

titaniumed
07-23-2014, 12:49 AM
Rise, No bending, lifting or twisting means exactly what it means....I didn’t bend at all for many months. I didn’t lift more than a dinner plate for at least 4 months, and twisting really doesn’t happen early with a T2-pelvis setup. It can really be the definition of the word stiff. In my immediate recovery I thought I would never be able to reach my feet ever again. (which of course,was wrong) I started those stretches at around 8 months post, slowly and carefully with a stool.

One of the first things I had to learn was to squat in the “vertical position” keeping the back straight. This started with unloading the dishwasher, one hand on counter, and down but with the spine erect. You want to be that model on the catwalk, perfect posture, head up. Wherever you look and turn your head, your body will follow suit. If you look down, you will bend over looking down. In ski jumping, gymnastics,or diving a twist starts with the head and arms, you look where you want to go.

Leeway on BLT’s depends on how far you are along in your recovery....At 21 days, your are still fresh out of the oven, don’t even think about it. Lifting produces high levels of force on your spine....

At 6 months, my surgeon wanted me to loosen up a bit. I really walked on eggshells for a long time, I just didn’t want to take any chances. My surgeries were especially taxing, and hurt like hell.

I remember sitting here at my computer around the end of May 2008 at 4 months and feeling no pain at all. I couldn’t believe it! It had been decades since I felt that feeling. Recovery is just like a see-saw, good days and bad days. You know your improving when you have more good days than bad. Our bodies heal at our own rates, and we cannot control or speed up this healing process, its not our decision. We walk often to keep blood, and nutrients flowing which is so important, but we all push our limits, sending us back to bed once again....

I also had stern warnings about sleeping all the time.....I couldn’t understand what that was about since my surgeries really disrupted my sleep. I had a hard time sleeping for the longest time. I think it was a year before I slept 8 hours in one shot. I did a lot of pacing in the first few months...

Weaning off meds will run through your mind....and should be a goal. Spacing time periods between doses is probably the easiest way to do this, keep careful notes on your daily recovery. Write it down. It’s a painful period in our recoveries, the adjustment of our systems. We cut, straighten, and move our bodies, drill, tap, and insert screws and rods, drug our systems beyond belief, then come down for landing.....It’s a roller coaster for sure...

Hang in there

Are you the last Boachie patient in the US?
Ed

Irina
07-23-2014, 01:01 AM
Rise,

I would strongly suggest to try to forget about legs shaving by yourself until you are about 3 months postop. Have someone else do it for you for now. I lasered my legs before the surgery because I knew that hairy legs would drive me nuts, but if you haven't done anything before, try to forget about it for now. You don't want to torch the fusion! Laser reduced hair growth tremendously for me, but I still need touch ups. I use an epilator every other month. It's relatively easy now.

Rise
07-23-2014, 07:21 AM
Are you the last Boachie patient in the US?
Ed[/QUOTE]

Hi Ed,

I doubt that I'm his last but my surgery was 7/2 and he left the States on 7/10 so if not, I'm pretty close. He's back for one day in September at which time I will see him for a follow-up. Dr. Han Jo Kim assisted in the OR for my surgery and is basically taking Boachie's caseload. I see him in early August for a follow-up. I'm not thrilled with Boachie leaving but I had been seeing him for years and he was the only one I was comfortable with doing the surgery. Not an ideal situation but none of this is.

Anyway, thanks for your advice. My frustration is rearing it's ugly head. Went with my husband for a ride to CVS last night. I didn't get out if the car, just went for the ride. My back felt awful. Tight, freaky against the seat back (even with a pillow) and just plain couldn't wait to come home. I was so disappointed.

Risë

leahdragonfly
07-23-2014, 08:17 AM
Hi Rise,

Ahh, I feel your frustration and impatience and I see myself in you. Ed laid it out like it is, there is no hurrying this recovery, it is not a choice how long it takes. And it does take a long time. And truly, no bending means none at all, no bending forward from the waist, no bending at the hips more than 90 degrees (knees never higher than hips when seated). Squatting was also restricted for me for awhile, as it puts tremendous pressure on the lower back. I think I was permitted to squat no more than 2-3 times a day after the first few months, until I think 6 months. Please, if you have any questions at all about what you can and can't do safely, call your surgeon's office an ask. It is better than disrupting your healing.

I'm not sure you can shave your legs at this point without bending. Please give your back a chance to heal properly the first time, and wait on trying to shave your legs. I too had mine waxed, and I went for pedicures since there was no way I could cut my toenails for over a year.

As far as the car goes - I too was really surprised after surgery at how uncomfortable the car was, especially my husband's SUV seats. I eventually realized a big part of it is my new lordosis did not conform to the seat. At the suggestion of a friend I got one of those $10 mesh lumbar supports from Bed Bath and Beyond, and to this day I have it permanently in the car. It fits my back perfectly and conforms to my new lordosis. Many others here have mentioned this problem with cars, and it is a matter of finding the right support to lean against.

Take it easy, find some good series on Netflix or something else to pass some time, and take a few short walks each day. Your body needs to heal.

JenniferG
07-23-2014, 04:38 PM
Before my surgery, I was the one who did everything, took care of everyone, couldn't delegate etc. When I had my surgery I gave it all up. I lay back and let everyone do everything. I felt no guilt for the first time in my life. I luxuriated in sleeping and resting and having time for walking every day. It was like a holiday. We are all different, but what I did/my mindset, still surprises me but I think it worked for me. My dr. gave me no restrictions but said it would hurt if I over did anything. Strangely, from the time I came home, nothing hurt any more. Mind over matter?

The car seat, 5.5 years out, still doesn't fit my new lordosis. I find the head rest pushes my head forward. It's easily fixed. Similar to Leah, I have a small, rectangle cushion which is permanently in my car. It fills that indentation in the seat and holds me out from the head rest. It makes me perfectly comfortable.

I still don't like hard backed chairs. If I'm stuck with one, I sit forward and bolt upright, which isn't uncomfortable.

You will get through this time. Considering you're going to benefit from this surgery for the rest of your life, It's not long. Make the most of it and relax. Know that it's going to take time. There's no fast way through it.

Irina
07-23-2014, 07:37 PM
I was also very uncomfortable in my car - the head rest was pushing my head forward. I have 2009 Camry and the head rest is very curvy in this model. I had my husband to reverse the head rest, and it is now flash with the rest of the back of the chair. Like I have a chair with one very tall back. My car has lumbar support button, so I adjusted it it to my new lordosis and don't even need a pillow. Reversing that head rest did the trick for me. If I am in somebody else's car, I don't like their headrest either :-)

titaniumed
07-23-2014, 09:59 PM
I doubt that I'm his last but my surgery was 7/2 and he left the States on 7/10 so if not, I'm pretty close. He's back for one day in September at which time I will see him for a follow-up. Dr. Han Jo Kim assisted in the OR for my surgery and is basically taking Boachie's caseload. I see him in early August for a follow-up. I'm not thrilled with Boachie leaving but I had been seeing him for years and he was the only one I was comfortable with doing the surgery. Not an ideal situation but none of this is.

Anyway, thanks for your advice. My frustration is rearing it's ugly head. Went with my husband for a ride to CVS last night. I didn't get out if the car, just went for the ride. My back felt awful. Tight, freaky against the seat back (even with a pillow) and just plain couldn't wait to come home. I was so disappointed.

Risë
After looking briefly at Dr Kim, I see he has trained with Dr Boachie at HSS, trained in St Louis with Dr Lenke’s group, and has swung by Ghana for some training on the hard core scoli’s in Africa. Sounds pretty good to me, I think we will be hearing more about him in the future.....I actually made my decision after seeing the Discovery channel program that Dr Boachie was in....I watched it around 20 times, and figured if Juma could do it, so could I. I don’t know if you saw it, I believe it was aired in Dec 2006. “Surgery saved my life” Discovery has control over this program and nobody can watch it...You cant even buy it. An educational series in control by clueless management. Sigh....

Try not to stay frustrated....I really wasn’t since I knew It was going to be a major drag, and was going to take a long long time....Basically, we just have to hang in there while in our “survival mode”, and try to stay somewhat comfortable if we can. If it means staying out of the car, stay out of the car for now. Besides, getting into a car accident right now would be extremely harmful to your fusions....NYC has some intense driving....turning up the mirrors and punching it when the light turns green isn’t a good thing right now...(I’m originally from New Jersey where the slow lane means 100MPH) Remember the Steve McQueen movie “The Getaway” where Steve tells Ali to “punch it honey”. They need to change it to “Punch it honey, I need laxatives”. (I know, bad scoliosis forum joke)


Calming your nervous system is critical for healing....It’s a mental thing really, understanding completely what has happened and what will happen as you heal. Having a positive attitude is important, accepting the change (always hard) adapting and allowing time to pass while healing. Before you know it, you will feel a sudden improvement, it seems to come in these steps and isn’t a gradual thing....Nerve healing happens slowly and can burn like a soldering iron. Strangely enough, just like a light switch (on or off) your particular switch will suddenly switch itself off. Having a few inflamed nerve areas can take a lot of patience and it takes time. Triggering these inflamed areas is something we want to avoid. Disrupting our fusions is also something you want to avoid, at least till they can heal some. Cutting your finger, putting a band aid on it, and then hitting it with a hammer a few days later will only slow your healing down and create more pain. Recovery and healing time is exactly that. It’s a painful vacation on drugs, without the beach. (smiley face) You need to think about the beach.

Deep breathing is also very important on a mental level. Anxiety can be controlled by breathing. The more you do it, the lower your anxiety will be. In deep, hold for a few, exhale completely. Repeat. I found this to work well before and after my surgeries. Surviving scoliosis surgery is a challenge that many of us here have done, its something we have to do and it changes you. You learn patience better than anyone and you learn to respect your body. I think we all slow down some, which is a good thing when you think about it....

One day at a time...

Ed

Irina
07-23-2014, 11:02 PM
Melissa mentioned waxing...there is also laser, for permanent
solution...more money, but one or two tx and done...forever.
never have to think about it again.

jess...and Sparky

Jess,

With laser, people usually need between 5 to 10 treatments spaced out at least 6 weeks apart, so it's a long process that will take more than half a year from start to finish. It is expensive, but it's so worth it! Btw, laser doesn't work on blond hair and the best results are achieved on women with light skin and dark hair.

You have to shop around for a good place because quite often people would try to sell you packaged treatments and do mediocre job. I was happy with my place. I started my treatments 7 months before the surgery, as soon as I became serious about fusion, and finished two weeks before going in. I didn't do anything (no shaving, epilating, waxing) for probably 7 or 8 months postop, but now use an epilator may be once in two months for little touch up. Laser cannot remove all the hair, there will be a few left, but almost not noticeable. I am just a perfectionist and want to yank out every single one.

PeggyS
07-24-2014, 01:28 PM
Ed, I appreciate reading your posts about time & attitude for healing. When it's 'my time' for surgery, I intend to go back and do a lot of re-reading!

titaniumed
07-25-2014, 01:46 AM
Oh No Peggy!, I didn’t think anyone reads my posts....(smiley face) I have 2755 posts, and many are long ones, some with extremely corny humor. I look back sometimes and some of it is hilarious. I hope it offers some entertainment value.

Understanding up front what happens during surgery and after surgery is a bonus. All my life I wondered what was going to happen, I think it was this uncertainty that was so scary....and that’s why I post. It was like an Alfred Hitchcock film, (in black and white) never expecting the finale. A lifetime of suspense.

Reading and posting on scoliosis forums is a good idea....its sort of like test driving a car....would you buy a car without driving it? Would you have serious scoliosis surgery without knowing what to expect?

http://www.youtube.com/watch?v=0_AmqBGDJDs

Alfred Hitchcock
The master of suspense....

Marianne
07-25-2014, 06:58 AM
Ed, I agree with Peggy, your posts are so informative. I will also be rereading your posts when it is my time for surgery.
And thanks for the Alfred Hitchcock link, I love his movies.

Rise
08-08-2014, 04:42 PM
Hi all,

At what point, if ever, do you stop feeling the hardware? It's freaking me out a bit plus feeling it makes me fear that I've broken something. How likely/common is it to break hardware?

Thx!

Risë

LindaRacine
08-08-2014, 09:24 PM
Hi Rise...

Broken implants aren't terribly uncommon, but a lot more people THINK they've broken implants than have actually broken them. Most people whose rods break seem to say that they could both hear and feel when a rod actually broke.

--Linda

jrnyc
08-09-2014, 05:31 PM
RE: laser

Irina....i needed TWO tx and done...at a dermatologist's office...
any area that got two tx was free of hair for me...
so i most definitely did NOT need 5 or 6 tx...
and the two tx were affordable for me...
now home laser tx are something else...i think the home laser
gizmo is alot weaker than what they use in doctor's office.

jess...and Sparky

Irina
08-09-2014, 05:58 PM
Wow, Jess, you're lucky - two treatments and done. I was nowhere close to being done after two treatments and noticed a result after fifth session. We are all different...

jrnyc
08-09-2014, 08:50 PM
yes...everyone is different...
i don't know if i would go 5 or 6 times...it was very
expensive at dermatologist's office...a doctor did it...
and i do not know if it is the same price everywhere...
but i was glad 2 treatments were enough at the prices
they charged!

jess...and Sparky