Scared but scheduled for T4-pelvis Fusion Oct 2015

[Mom of 4]

Karen, I will definitely say hi to Dr. Lenke for you! I agree about increasing my odds with the most experienced surgeon I can get.

K, sorry to be a copycat! I will pm you soon.

Ed, I appreciate and respect your opinion. I did cancel, so I guess I am scared and unscheduled for the time being. My (former) surgeon said he does 1-2 of these surgeries a month. As huge as this is, I'm not sure that's enough "practice". Maybe I'm wrong.

I will see Dr. Lenke November 4. I might have run into an insurance problem, though. Dr. Lenke wasn't listed as a preferred provider for BC/BS. The hospital is at least.

[titaniumed]

Ahhh, Cup of Joe. (Where the heck did that come from?)

Ok on the cancellation......and probably a good idea to see Dr Lenke. I wrote another detailed post yesterday in defense of all the other scoliosis surgeons that are out there that are not in the “top ten” group. I did not select one of these and I came out as good as I can be considering my specific problems.....My surgeon is a genus, I have no doubt in saying that.....Every once in a while, all scoliosis surgeons will have a difficult outcome, it doesn’t matter if they are the best, or publish, or are recommended. Scoliosis surgery is not something we take lightly, it can be serious and yes, initial selection of your surgeon weighs heavily.

I write many draft posts that don’t make it here to the board, they get saved and then deleted. Maybe its proof that our thoughts about things can change slightly on a daily basis....and then someone else will post something that is brilliant. It’s the beauty of the forum.

It would be a really good idea for you to read David Wolpert’s book. I forget the title, it has something to do with scoliosis surgery. (smiley face) I’m such a dork sometimes......You can order it here.
http://www.scoliosis.org/store/books.php

I was diagnosed 41 years ago with twin 50’s and was told I would eventually need surgery by every single doctor I ever saw.....(including my Chiropractors) I rejected the surgical idea due to my skiing. I believe that extreme skiing destroyed my spine, but it also helped delay the decision all these years and suffered with incredible alarming amounts of pain. As the pain increased, my surgical thoughts increased. I experienced incredible amounts of burning and electrical type’s of pain. My CNS was shot at the end, almost like a car battery with 1 volt. Lethargic and exhausted from the battle. I was dying. We have electricity in our bodies you know, it got to the point that I couldn’t light up a light bulb like Uncle Fester anymore.....(smiley face)

We also didn’t have a scoliosis surgeon here in Reno years ago so that helped with the waiting process. By the time Dr Menmuir came to town, I knew that I needed to start the talks. I knew that I wasn’t going to make a decision right then and there, but we would go and talk about things. It was scoliosis psychotherapy which was something that had to happen. Knowing and accepting what would happen or what could happen. King Kong and Godzilla. What are you telling me? You have to be kidding? Accepting and learning all the medical jargon was a learning curve that for me became necessary. He wanted me to think, and learn, and join this forum.

I was a reader for many years here but didn’t post and its funny how that works.....sitting on the sidelines listening. Its good that you decided to post your story, and no questions are dumb.

Its funny how we hear about all these insurance problems and I thought Obamacare was supposed to make these things easier? I know, its BS, but things will work out. See if the insurance people at Dr Lenke office can work these things out.....that’s their business.

Ed

[mabeckoff]

I had a very bad case of scoliosis and did not had one of the top ten doctors and he is a genius.

Dr Bederman speak hours preparing for my surgery . He fixed what my surgeon in NC screwed up big time. My first surgery with him was 15 hours long . I have had several smaller surgeries with him after that.

I do not know where I would be without him .

Melissa

[cathydrew]

I will see Dr. Lenke November 4. I might have run into an insurance problem, though. Dr. Lenke wasn't listed as a preferred provider for BC/BS. The hospital is at least.

Dr. Lonner was not a provider in my insurance plan, but accepted what my plan paid, which was I believe 80%. I made sure the anesthesiologist and thoracic surgeon accepted my insurance too. The girls in the office did everything possible to keep out of pocket minimal and it was definitely manageable. They're the ones who will know all the details.

Also, I'm almost 6 months out and just so happy I did it. I have some pain but it's easily controlled and I'm back to everything I was doing before my scoli got bad, including my job teaching 5th grade, and singing with two different bands, with lively performances and rehearsals. Today, I got socks on, and leggings and boots! I've kept off the weight I lost and then some...I love my new waistline and plan to keep it! My back itself never hurts (it's itchy as hell last few weeks but that's ok) what bothers me most are my pelvic bolts 😳 I'm hoping this goes completely away eventually. It's sooooooo much better already.

I'm thankful for my recovery and lack of surgical complications and hopeful for some years of peace...who knows what lies ahead for me, I'm enjoying the life I feel I just got back in April.

I hope your decision gives you peace as well.

[green m&m]

Mom of 4,

You are seeing Dr. Lenke at Columbia correct? Since he recently switched hospitals itll take a while for him to renegotiate contracts with insurance companies.

I had to wait 6 months after one of my docs switched hospitals in town (one nyc hospital to another) to see him because it took that long for him to become in network at the new hospital.

You could call Lanke's office and see if they can tell you if he will be in network provider with your insurance (and when)?

[Mom of 4]

green m&m, you were exactly correct! I called Dr. Lenke's office and was told that he just became a participating provider. Pfew!!!

Ed, I took your advice and am currently waiting patiently(not) for Amazon to deliver the book you suggested. Can't wait to read it!

I am so relieved that I am "not scheduled" right now, but on the other hand, I wish my surgical date was tomorrow so I could get it done!!! The reality is I AM going to proceed with surgery, I just need to figure out how to get there with a reasonably sound mind. I know exercise is a great stress reliever/distraction, but I am lacking the motivation to do something that is going to make me feel miserable physically. I'd really like to improve my cardiovascular health before surgery, but yoga is about all I can do.

[ksmom0611]

Good news about your dr!

Improving your cardiovascular health is great, but I'd also work on strength training for your arms and legs. You end up using them A LOT after surgery. I wished I had done more of that (and lost weight beforehand). The quads and glutes (sp?) are the best things to strengthen in the legs.

You may not think you are progressing on this path because you aren't having the surgery yet, but the whole process of thinking about it, getting information, gearing up for it are all steps forward. You are taking care of yourself and that's great!

[leahdragonfly]

Hi there,

Good luck as you proceed through all of the pre-surgical terror…it really is terrifying, we have all been there and are here to help you.

My one suggestion is to get your legs as strong as possible…do lots of squats so you can easily squat to pick things up and stand right back up, ideally without holding on to anything. That was a major frustration for me post-surgery, not being able to reach stuff, and having to squat a lot. As someone suggested above, get your quads and glutes into iron-strong shape! You will be glad you did.

Also, do you like walking? That would be a great exercise to try and do lots of before surgery, or swimming if you like it. You will need to do a lot of walking after surgery, as that will be your primary rehab for the first several months at least, so make sure now that you have some great-fitting walking shoes all ready to go. When you take your walks now, not only will it decrease your anxiety, but you can visualize yourself on the other side of surgery, walking tall with your new back.

Hang in there and keep the questions coming! We are here to walk with you.

[titaniumed]

I just need to figure out how to get there with a reasonably sound mind.

This isn’t an easy thing to do....I know I was bouncing off walls there for a long time with my decision.

If you can do your Yoga outdoors, I would recommend that for right now....

The walking thing is EXTREMELY important! Recovery includes pushing past pain, its something we need to learn how to do, and you might say its an acquired taste......

I want to wait till you at least read that book before I say anything.....Plan on re-reading a few chapters a few times.

Ed

[green m&m]

Phew indeed Mom of 4!

In-network provider lowers chances of insurance issues which is a huge plus. Ive had those moments of panic - only to find out a doc group bills... (Which I guess could be a good way for a super indemand busy doc to 'hide')

If the office you see Dr. Lenke ends up being in the upper west side and you like desserts, HIGHLY recommend checking out Beard Papa's on 76th and Broadway. Fantastic fresh made daily cream puffs. I go out of my way to pick those up when Im visiting doctors uptown.

I love getting yummy treats and meals when I have to venture into NYC for doctors appts...

[nybw51mr42]

Hey Mom of 4, did you happen to be there yesterday?

I went and saw Dr. Lenke yesterday to follow up from my first appointment in St. Louis. I felt very comfortable with him, and also was going to say he takes Blue Cross (what I have) but I see that you figured that out.

Keep us updated on what you decide, I'm in the same boat of trying to make these difficult decisions easier.

Also, Dr. Lenke said only through the back for me too, 3-4 hours, whereas other docs had said anywhere from 10 hours to 2 days.

[Mom of 4]

I really LOVE this forum and all of the kind, encouraging people on it!!!

@green m&m, my husband and I are getting in town the night before my appointment. We are going to do dinner and hopefully check out Beard Papas. Sounds yummy!

@nybw51mr42, unfortunately, no, I wasn't there yesterday. It would have been so nice to meet you and compare notes! My appointment is November 4.

@titaniumed, my book finally arrived! I read it and I'm not sure why, but I feel more at ease. Questions were answered. I took notes and highlighted a bunch. I have a tendency to think "worst case scenario". The book seemed very matter of fact. Of course, my calm could also be due to the fact that I don't have a surgical date at the moment!

[titaniumed]

Its hard to say if all of us think “worst case scenario”? I know I was prepared for some bad stuff, but it did work out ok.....

And in thinking about worst case scenario, one of the new kids at work showed me a huge anterior scar the size of mine today and I asked him what happened? He told me testicular cancer, and that really blew me away. It must have been a stage 2 or 3? and metastasized.(Up) Age 22.....He told me the docs told him its in remission. Sigh.....another survivor with a different twist.

The scoliosis book will help with some of the terminology, and understanding what the docs are saying......Maybe help with some of your questions for him when you do go in.

I’m wondering how Dr Lenke feels about the new stem cell impregnated hardware? .......Its one of the newer things in our world. (smiley face) I am into the hardware naturally, and asked what system was going to be used on me. It was truly his call, like I was going to debate scoliosis hardware systems with him....

I’m running Hooker headers and Monroe shocks. (smiley face) I think my shocks are a tad stiff.....

Ed

[Mom of 4]

Ok Ed, I'm obviously going to need some more reading material! How and where did you learn about stem cell impregnated hardware? I'm in the dark...

[titaniumed]

How and where did you learn about stem cell impregnated hardware?

Well.....I was probably reading material relating to Susan’s situation.

Anyway, I will look for more material tomorrow for you since I’m exhausted tonight. It has nothing to do with scoliosis I’m sure. (smiley face)

Orthopedic Stem Cell use in the US is projected to rise....
http://www.prweb.com/releases/2015/05/prweb12712540.htm

Hardware selection and surgical procedure is up to your surgeon. Its not like you insist on Monroe shocks when they don’t do Monroe....you have to rely on your surgeons expertise.

Ed