November 9th!!

[osumike]

Now it's really real.. I made the call this morning to schedule surgery, and it's happening in a little over two months. Crazy, I never thought it would actually happen. I'm super excited to think my pain might be gone, and definitely terrified of the whole thing. I keep thinking about how I'll feel after surgery, when I'm just laying there hurting, and what that's going to feel like.

I still need to get pre-op clearance from my gp, and the cardiologist, but I have no reason to believe that will be an issue. I also need to go give blood prior to surgery. The surgeon, Dr. Tribus(pronounced Trib-you), anticipates a 10 hour surgery, and thinks I'll stay in the hospital for 5-7 days post-op, before being moved to an in-patient rehabilitation center for up to six weeks. I'll be using a tilt table there. It's like a flat padded table that they'll strap me to, and then the whole table tilts up to get me in the standing position so I can get upright and walk. He said this is used so I don't bend at the waist when getting up out of bed.

I don't have any current x-rays in my possession to post on here, but I may by the end of the week. Well actually I took a picture of a computer screen that had my x-rays up, I'll put that up here for now. I didn't even ask about curvature degrees, I just know it's progressed, at least the pain is telling me it has. It's really affected my work lately, which is very frustrating.

I mentioned in that old thread that the genetic testing came back negative for Marfans, but as Sharon said, there's a pretty large margin of error to that test, and that doctor isn't completely convinced because I do show some of the symptoms. As long as I stay diligent and get yearly checks on my heart, I should be fine.

I'll post more as this thing moves along....

[Pooka1]

Congratulations on setting the date. Big step forward.

Like I told my girls, surgery isn't about regaining a normal spine. That is off the table. It is about cutting your losses and leading a normal life.

There is at least a 90% chance that you don't have Marfan's. But even if you do, it doesn't matter because you know to keep monitoring your aorta. That is the entire game here in terms of Marfan's patients having a normal life span. The people who die young didn't know they had it and so weren't monitoring their aortic dimensions. These deaths are entirely preventable.

Good luck and great fortune going forward, Mike.

[KathyInIowa]

Congratulations, Mike!

I remember vividly the day I called and said "sign me up for surgery." I couldn't believe I had actually made the call when I hung up. But, I felt the same as you - as was super scared, but at the same time I was excited to think that I could actually walk without being in terrible pain after 2 steps!

I had been reading the forum for 18 months prior to setting my surgery date. I will say, reading these posts gave me a lot of self confidence. I kept thinking "if all these people have done it, then I can do it." I remember reading a post that said "there are 3 things that are essential for preparing for surgery:
1. Learn as much as you can about the surgery and recovery
2. Get in the best physical shape as possible
3. Trust your surgeon.

I did all 3 of those items and it helped me immensely. I think the #1 thing for me was that I 100% trusted my surgeon, and I 100% trusted myself to do whatever was necessary to a good outcome/recovery.

You can do this and I wish you all the luck!

Kathy

[mistybowe]

Mike,

Congrats on making the leap to schedule your big day! The next two months will likely creep by as you wait and worry. The only advice that I can provide is to prepare yourself for the long road ahead. I am only 4 weeks post op, so don't have as much to offer as others on this board, however, I do feel like I did a good job of getting my affairs in order. I made sure that I was in a good place with my workload and co-workers; stocked my freezer full of meals from Let's Dish; ordered supplies that I knew I would likely need at the house such as a shower chair, toilet seat lift, grabber gadget, etc. Preparing helped to occupy my mind and gave me something to do.

It's interesting how different the recovery period is approached by different doctors. I had a 9 hour surgery and was in the hospital for 6 days but then went right home. No after care facility or fancy bed to get me upright, though the bed sure would have been handy! They had me standing upright within 12 hours of my surgery and was walking, climbing stairs and learning to put my socks on all within the first 3 days post op. It seemed aggressive at the time and it was honestly the hardest week of my life, but I understand why they pushed.

Ask as many questions of the group as you need!

Misty

[osumike]

Some random thoughts as I stare into this forum again...
It's bringing back memories from 6 or so years ago, when my journey began to find out why I was in so much pain, and I found this forum, and spent countless hours reading. Today while I was at work, out of nowhere, and for no apparent reason, I got a horrible shooting pain run thru my right shoulder and into my neck. I made a noise out loud because it hurt so bad. I had to go home early, and I've been laying in bed with a heating pad for the past 8 hours. Not sure what that was all about. It's really nice to see the same people(Ed, Linda, several others) still on here giving advice and opinions and support to all the new members looking for answers.. I know that helped me tremendously.

I'm so worried about what's going to happen after surgery, mostly with work. There's no chance I'm NOT going through with this surgery, because I NEED this to happen for quality of life reasons. Pain levels are getting out of control, and I really don't want to up the pain meds I'm currently taking. 10mg percoset, 60mg morphine, and a muscle relaxer twice daily, and occasionally an extra percoset if I need it. A few months ago I quit taking Paxil. That was a little weird, with the brain zaps.

Definitely looking forward to post-op though. I was reading through all the posts earlier about what to have at home after surgery, but I'm thinking I won't need most of that, as I'll be in an inpatient rehabilitation center for possibly six weeks.

I've been searching here for anyone that has been operated on by Dr Tribus, but can't find much. Anyone reading this have experience with him? Either way, the meetings I've had with him were good, great actually. Seems very knowledgeable and confident in what he can do for me. I can't wait to see the outcome.

[mistybowe]

I'm so worried about what's going to happen after surgery, mostly with work. There's no chance I'm NOT going through with this surgery, because I NEED this to happen for quality of life reasons. Pain levels are getting out of control, and I really don't want to up the pain meds I'm currently taking. 10mg percoset, 60mg morphine, and a muscle relaxer twice daily, and occasionally an extra percoset if I need it. A few months ago I quit taking Paxil. That was a little weird, with the brain zaps.

Mike,

I was most concerned about the surgery and recovery impacting my career as well! Though when you will go back to work really depends on what you do for a living and how flexible your employer is. I am lucky in that I am fully commissioned real estate broker so I make my own hours and can do A LOT of work from my home office. 9 days post op I was answering a few critical emails and even conducted a conference call. Today is 4 1/2 weeks post op and I have been to the office for the past week. It has been very draining, but really good to get back into a routine. This is probably aggressive for most people, but when you eat what you kill, you tend to push a little harder. I have the luxury of a wellness room to lie down in if I need to when I'm at the office, and I have the furthest thing from a labor intensive job, so that all comes into play. If you have an office job as well, I think it is reasonable to imagine going back as soon as you feel ready.

You are on pretty heavy doses of pain meds already! Wow! How does that affect your job now? Hope your neck pain goes away quickly.

Misty

[titaniumed]

Mike

Your x-ray really made me sigh, the old reminders.....mine looked like yours. And the stabs and jolts of yesterday, all in the past mostly. I don’t think I need to help you justify your decision, it was something that ran through my mind for many years. Its good that you have been a reader here...you understand what your up against, its never easy, but nothing good in life seems to come easy. (Unless you own Facebook stock)

I did most of my pre surgical years med free except for NSAID usage. Talk to Dr Tribus now about going in clean. My surgeon wanted me to lose weight, and I also quit coffee since we didn’t want caffeine withdrawal’s happening during my recovery. I have read that Paxil is the grand puba of weaning.....and my neighbor is on it and has been for 20 years. She would have meltdowns that I would have to help her with, so I actually have 6 of those pills in my medicine cabinet. (smiley face)

Once again, you will trade pains. Since you have been having alarming pain events, the pain of immediate recovery will be easier. Its not the surgery, it’s the first few weeks that can be hard since your in weaning mode. There will be unpleasant things you will feel, mainly due to constipation and lower GI jam up problems from the meds. I think the main thing is that surgical pain is something that does pass so you need to constantly think ahead. Remember that there is always light at the end of that tunnel.

I cant comment on your work since I don’t know what your doing.......I made many decisions leading up to my surgeries, sold my business since I had employees, and was guaranteed that something would go wrong.

Preparing for the worst, hoping and praying for the best.

Damn the torpedo’s....I really had to get my act together.....and ran through my anxiety....I would run till the running was done.

I used this determined mentality through the whole process.

Do you have any idea what levels or procedures will happen? Is he going to the pelvis?

Ed

[osumike]

As far as I know, there hasn't been a decision made about where the fusion will start, but I know for sure it's going to the pelvis with 7" anchors. He mentioned at least one osteotomy, and a thorocoplasty is a possibility. He called it a controlled car crash. I believe he'll be contacting Dr Bridwell in St Louis, just to compare notes. Not sure if you remember, but my St Louis experience was a complete disaster.

I am a manager for a Dish Network contractor. I wasn't supposed to be working in the field, doing installations anymore, but we've had such a hard time hiring here in WI. Being so understaffed, I have no choice right now. Carrying a 90 pound ladder on my shoulder(same side as my rib hump, and same side my ribs rest on my pelvis), climbing on roofs, bending, standing, etc, etc, etc.... All part of the job. I'm thinking that won't be possible after surgery, which I'm OK with. Still super stressed about it though. The owner of the company I work for is great, very understanding. There'll always be a position for me, we're working on a plan for me to work from home 100% of the time.

[jackieg412]

Just a strange question Mike. If you are 6'7", how tall do they think you will be after? Ask Ed about hitting your head when you are extended to a new height.

[jackieg412]

I also think you will be amazed at what you will be able to do after surgery. Once you've healed it's pretty much you change a few things and accomplish almost everything.

[osumike]

Well I used to 6'9", and probably closer to 6'10". I'm assuming I'll get back to that height at least. When I was in St Louis, Dr Bridwell told me he figured I'd gain around 3 inches, and I'd guess I was around 6'8"then. Six or seven years ago I started to notice I was losing height. That's also when my pain levels got to the point where I decided to go talk to my doctor about it.

[osumike]

I got the outline of the surgical plan today...

Anterior fusion from L4 to S1 with an L3 osteotomy, and a posterior fusion from T3 through the ilium. BMP will be used. No mention of thorocoplasty.

[titaniumed]

I got the outline of the surgical plan today...

Anterior fusion from L4 to S1 with an L3 osteotomy, and a posterior fusion from T3 through the ilium. BMP will be used. No mention of thorocoplasty.

Sounds good Mike.

I had an Anterior fusion (ALIF) from L1 to S1, no osteotomy, and posterior was T2-Pelvis. and no thoracoplasty....

BMP was used in PEEK spacers, inserted from the front. They use an insertion device for this. I will try to find it online after my nap. (getting tired these days)

BMP is a liquid, a protein that acts as a catalyst to speed up fusion. They use INFUSE kits from Medtronics, its expensive stuff. They insert the BMP into a collagen sponge, which is inserted in the spacer, which is inserted into the insertion device which is encased in steel which makes it impossible to drip BMP. You don’t want this stuff dripping as it will grow bone wherever it is dripped. Inject it under your skin and it will grow bone.

This method is the only FDA approved usage of BMP. Any other applications for spine surgery would be considered “Off Label” which is NOT approved by the FDA. (Its also approved for tibia and some dental procedures)

All I have to say is that it worked, and it worked like a charm. I never expected such fantastic lumbar results. It truly was a miracle.

Years ago I had a skiing partner who was 6’9-1/2” tall. It was great because when “he crashed” in 3 feet of powder, there was still 5’ above the snow. You have to make sure the math is off for the joke to be any good. If you are a serious powder skier, being a midget is great because everyday is a powder day. Mini-Me is missing out big time!

A standard doorway is 6’ 8” so, I’m sure you know what ducking is about. Eric drove a Suburban with the seat set all the way back.....The Miata was out of the question. (smiley face)

Anyway, with you being so large, the bending question now becomes a concern. The lumbar forces when you bend are now multiplied due to you being so big and tall. That explains the tilt table.....I didn’t bend for months. I wasn’t going to take that chance, no way. Anything that’s on the floor you cant get, FORGET IT. Get everything on the kitchen counter. No bending means no bending. I would find some LONG BBQ tongs, they will be on sale being it’s the end of summer. When you are done, you can BBQ.

I learned to squat because of the dishwasher....a vertical squat, with spine perfectly vertical. No leaning tower of Pisa. Not even 3.99 degrees. (That’s the current angle of the tower)
https://en.wikipedia.org/wiki/Leaning_Tower_of_Pisa

In the wiki article you will see a photo of the lean. No leaning means no spine forces.

I will post more about detailed scoliosis recovery techniques this weekend for you....

Ed

[rohrer01]

Wow, Mike!

I've seen that doctor for the last 16 years! He's nice, but has been a bit wishy washy with me as my curve is borderline. Let me know how it goes with him. I'm supposed to see a Dr. Fogelson in Rochester, MN as a second opinion. Dr. Tribus isn't aware of the current problems that my scoliosis is causing. If I don't hear from Mayo Clinic, I'll probably end up going back to him.

In the meantime I'll be anxiously following your progress. If I remember correctly, didn't you have trouble finding someone who wasn't intimidated by your size vs the operating table? Well, at least you picked a sympathetic doctor there. Who's taller, you or him? In the end you will be for sure! I'm happy you finally found a doctor.

You can send me a PM if you feel the need.

Take care,
Rohrer01

[kennedy]

Good luck with your surgery mike