November 9th!!

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....

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.

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

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

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.

Quote:

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Originally Posted by osumike

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.

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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

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

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.

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.

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.

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.

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.

Quote:

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Originally Posted by 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.

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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

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

Good luck with your surgery mike

Ed, excellent... I'm looking forward to your info, and great stories!

Rohrer, yeah I definitely keep you updated with this.. Tribus seems like a nice guy, and has been genuinely concerned it seems. I think he's definitely taller than me right now, but yeah, after, probably not!

In a bit I'll post some more from the surgical outline I received yesterday...

Mike,

Since I've been seeing Tribus for such a long time I can tell you that he definitely has always had a good bedside manner and, at least with me, had a deep concern for making the right call (whether to or not to go ahead... part of his wishy washy attitude with me, I think).

Just make sure you have a good pain management team for afterward. I have a friend who had surgery with him and he isn't good on following through on pain management. Since you are already on so much pain medication it might be a little trickier. That is a concern I have as well. I'm taking on average 50mg of oxycodone/day. You might want to discuss pain management ahead of time with your current pain med prescriber. I know Ed suggested going in clean... With some of us that just isn't possible, especially since you have only two months to go and are already taking quite a bit. Ideally, clean would be best, but not always. Please talk to your current doctor about this. Dr. Tribus isn't so understanding when it comes to pain management. He's probably seen too many people come out of back surgeries as addicts, which is understandable. I'm sure he doesn't want to be responsible for causing that.

Just so you're not scared by this, he's NEVER said anything derogatory about my use of narcotics. I just know about the follow up care from my friend and another patient of his I talked to.
Just a heads up.

Take care,
Rohrer01

Good to know, thanks. He actually did mention that he hoped I would allow him to take over pain management after surgery. I just saw my gp yesterday, and he only gave me enough refills to get me up to the surgery date. I see the gp one more time before surgery, so I'll have that discussion then. I am really looking forward to being off pills completely... At least hopefully. Need to make sure it's done properly though.

And I've been struggling the last couple days with my decision to do this... I can't tell you how reassuring it is to hear you say how great he is, Rohrer. There's not too many "user reviews" that I've been able to find online.....

Mike it is a hard decision and even though I have had the surgery a part of me still isn't sure it was the right surgery at the right time. I thInk these things are hard. Make sure to ask all of your questions but try to find out what your inter most thoughts are. You are the one that has to know when the time is right.

Quote:

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Originally Posted by osumike

Good to know, thanks. He actually did mention that he hoped I would allow him to take over pain management after surgery. I just saw my gp yesterday, and he only gave me enough refills to get me up to the surgery date. I see the gp one more time before surgery, so I'll have that discussion then. I am really looking forward to being off pills completely... At least hopefully. Need to make sure it's done properly though.

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Mike, that would be my "hope" as well. That is being off of all narcotics. My situation just doesn't lend for that. I have a very painful muscle disease so my only goal would be to get straightened up and my hypokyphosis pulled out. I don't have room to swallow because my spine is so close to my sternum and my stomach is twisted.

I'm really shocked that he actually wanted to take over your pain management. He must be changing or REALLY wants to help you get off of the narcotics. He's usually hands off after the first two months or so. At least that's what I've heard.

The head of neurosurgery at the large medical center near me raves about Dr. Tribus' work. He didn't quite understand why I wanted to see someone else this time. Honestly, it's because of the wishy washy-ness that he's had with me. But, like I've said, he doesn't know of the recent complications that I've had. I'm thoroughly convinced that he truly does care about his patients.

I don't want to scare you but I've actually heard both ways with patient satisfaction. I've heard more on the positive than on the negative. The negative comment I got from a fellow forum member had a lot to do with pain and pain management. And like I said, my neurosurgeon has a very high regard for him and told me point blank that he's seen his work and it's very impressive. My friend loved him except for the pain management aftercare. She had a different problem and is/was using narcotics for years afterward.

Sometimes people are left with pain and sometimes they aren't. My DIL had a T2-L1 (I think) fusion done when she was 16 by a different provider at our hospital here and only needed pain meds for about a month or so afterward. But pediatric cases are different than adults.

My opinion is hope for the best, be prepared for the worst, and take what comes. Dr. Tribus' exact words to me were, "If you come in here with a constant 8 out of 10 pain and surgery leaves you with a 6 out of 10, you'll be happy. If you come in with a 4 out of 10 and are left with a 6 out of 10, you are going to be very unhappy with the surgery." At least he was being honest with me so my expectations aren't too high.

I honestly did my research a little bit and compared OR length and degree of correction and was leaning toward going to Dr. Hey, but things fell through. Somehow that man does really complicated surgeries in three to six hours and rarely even needs to use the cell saver for blood loss. Dr. Tribus' OR time and blood loss is much more. However, Dr. Hey had some really negative and truly scary things said about him in patient reviews on the internet. I have not found anything like that with Dr. Tribus. Dr. Tribus is also working out of a hospital that is a level 1 trauma center should anything go wrong. Dr. Hey works out of a smaller hospital "near" Duke Medical Center but not affiliated with it. I've also seen Dr. Perra at Twin Cities Spine Center. He's supposed to be top-notch as well but had a horrible bedside manner when I saw him. And his nurse was just AWFUL to me. So I think they all have their strengths and weaknesses.

I would feel comfortable going ahead with Dr. Tribus. My own scoliosis goes up into my neck and even though the curve isn't huge, I'm a one-of-a-kind which comes with its own risks as no one really has any experience operating on my curve type, that is no one that I've been seen by or talked to. Dr. Tribus said he gets a high thoracic curve every two or three years, well that includes me! So narrow that down. He didn't say how many he'd operated on. But he has been in practice doing scoliosis surgeries for 20+/- years. Although severe, your curve pattern is more typical and I'm sure he's had a lot of experience. He's one that doesn't like to do fusions on smallish curves like mine because of the pain outcomes.

Sorry if I'm confusing you. I just felt like I wanted to justify why I'm choosing to get an opinion from someone else instead of sticking with Dr. Tribus. In all honesty I'm pretty sure that I'll end up going back to him whether I like and trust the new guy or not... for insurance reasons.

Anyway, I wouldn't second guess your decision. You've been trying to get this done for YEARS and have finally found someone competent enough to do it. To be honest, I would have been a little afraid to go to Dr. Bridwell if I were you because of his age and your size. These operations take a lot of brute strength. Our pediactric scoli surgeon had to quit doing the surgeries on KIDS because she hurt her shoulder. She's not a small woman, either! I think you are in good, talented, and strong hands.

I think your second guessing is nerves and fear of the unknown. You know how you feel now. You don't know how you will feel afterward. Only you can decide if you feel good enough to continue living the way you do. If you don't, there are a LOT of people here that have been through it. You have a lot of support here. I'm scared, too, and I don't even know if I'm healthy enough to even have surgery. I do know that the time has come that I do need it and it freaks me out, too!

Hang in there,
Rohrer01

Good Luck Mike! We are all there with you, please remember that! Gosh you are going to be tall! Love it!!! <3



52 year old female
Milwaukee Brace - 12 years to 16 years - T 35 L 32

2016 T63 L 50
Suggested surgery T4 - Pelvic
Ant and Post

Quote:

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Originally Posted by rohrer01

I've also seen Dr. Perra at Twin Cities Spine Center. He's supposed to be top-notch as well but had a horrible bedside manner when I saw him. And his nurse was just AWFUL to me. So I think they all have their strengths and weaknesses.

Rohrer01

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Hi, Rohrer01......

I'm just curious if you remember the name of Dr. Perra's nurse that was awful to you. I had surgery with Dr. Perra and am 10-weeks post op. I do not share your opinion regarding his bedside manner, but I know that everyone has their own experience. I actually like him and he treats me in a way that makes me feel confident about what is going on.

But, I do share your opinion regarding his nurse. I have been with their team for about 18 months. In the beginning, his nurse was nice and as time has gone on, I have developed the opinion that she has no compassion for her job or his patients. She seems somewhat "proficient" at her job in that she does get around to answering my emails - but only when I follow up with a phone call saying "did you get my email?" More than once, she has made me feel like I am "bothering her". It's not just me - my husband also notices her attitude.

On my 6-week post op check up, my husband was not in Minneapolis with me so my son took me. Mind you, he had never been to appointments with me so he was unaware of who or what anything was. Even HE noticed her attitude! On that particular day, the 4 of us were in the exam room and we were looking at the light up screen that had my xrays on it. I was asking Dr. Perra questions about my spine. I could see out of the corner of my eye that she was just GLARING at me. So, I shifted my eyes to meet hers and she immediately looked away. I have no idea what she was thinking at the time, but I feel really weird. Her name is Julie. It makes me feel like she doesn't like me (not that I care if she likes me or not) but I can honestly say, I'm not a "pain in the butt" patient. Most of my questions and issues I have after seeing them, I actually consult with my local orthoped. So, it's not like I'm constantly nagging them.

I feel like he is a top-notch scoli surgeon and has a great reputation in the MidWest. He has always treated me with respect, but he is direct and to the point. He "tells it like it is" which is good for me personally. If someone is wishy-washy with me, I start thinking of all kinds of ways to get me out of a situation. But, for me, I needed surgery had he had the job of telling me that. I didn't like it, but I knew he was right.

Anyway, I found your comment about his nurse interesting.

Kathy

Quote:

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Originally Posted by KathyInIowa

Hi, Rohrer01......

I'm just curious if you remember the name of Dr. Perra's nurse that was awful to you. I had surgery with Dr. Perra and am 10-weeks post op. I do not share your opinion regarding his bedside manner, but I know that everyone has their own experience. I actually like him and he treats me in a way that makes me feel confident about what is going on.

But, I do share your opinion regarding his nurse. I have been with their team for about 18 months. In the beginning, his nurse was nice and as time has gone on, I have developed the opinion that she has no compassion for her job or his patients. She seems somewhat "proficient" at her job in that she does get around to answering my emails - but only when I follow up with a phone call saying "did you get my email?" More than once, she has made me feel like I am "bothering her". It's not just me - my husband also notices her attitude.

On my 6-week post op check up, my husband was not in Minneapolis with me so my son took me. Mind you, he had never been to appointments with me so he was unaware of who or what anything was. Even HE noticed her attitude! On that particular day, the 4 of us were in the exam room and we were looking at the light up screen that had my xrays on it. I was asking Dr. Perra questions about my spine. I could see out of the corner of my eye that she was just GLARING at me. So, I shifted my eyes to meet hers and she immediately looked away. I have no idea what she was thinking at the time, but I feel really weird. Her name is Julie. It makes me feel like she doesn't like me (not that I care if she likes me or not) but I can honestly say, I'm not a "pain in the butt" patient. Most of my questions and issues I have after seeing them, I actually consult with my local orthoped. So, it's not like I'm constantly nagging them.

I feel like he is a top-notch scoli surgeon and has a great reputation in the MidWest. He has always treated me with respect, but he is direct and to the point. He "tells it like it is" which is good for me personally. If someone is wishy-washy with me, I start thinking of all kinds of ways to get me out of a situation. But, for me, I needed surgery had he had the job of telling me that. I didn't like it, but I knew he was right.

Anyway, I found your comment about his nurse interesting.

Kathy

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Yikes! If she is seeing every patient with Dr. Perra, it's no surprise that she doesn't have time to answer emails.

--Linda

I agree Linda. She didn't sit in on every appointment so I'm not sure how that decision is made. But the last time was really weird!

I've often wondered how she keeps up as she is the "clinical nurse" for 3 doctors. That's why I give her the benefit of the doubt when I have to follow up. I can't imagine how many patients she must deal with.

I don't get too shook up about stuff like that. Dr Perra is a great surgeon & that's what matters to me!

Kathy, I will PM you as I don't want to derail Mike's thread. :-)

Had my final pre-op appointment today. It's also been quite a wild week. I received a call last Monday, saying surgery was being postponed until June. Bone doc gave surgical clearance, but the surgeon said my bone density wasn't where he wanted it. Obviously this was extremely difficult to hear. Pretty much the same thing that happened in St Louis 6 years ago, except this time had a reschedule date.
I met with the Dr on thurs, and we agreed to stick to the original schedule of Nov 9, and I was started on forteo, which I'll continue to take through recovery.
On to today's meeting. It'll be a T3-sacrum fusion, osteotomy at L3, pelvic fixation. I've lost about ~4 inches of height. There's also plenty of auto fusion on my spine. Doc doesn't think he'll get much actual correction due to the auto fusion. Was told the plan is to rebalance my spine, meaning stabilize where I'm at now, and get me to the point where I can actually stand up straight, without strain, and if we get there, then that would be considered a success. I guess I never even considered that this huge procedure wouldn't result in me gaining some height back, having a straighter spine, or having a bit more "normal" looking torso. Thoughts?

Mike

This sure sounds like Ankylosing Spondylitis....Just a hunch.... People with “AS” autofuse and have osteoporosis.....Losing 4” is quite a bit....Hmmm....

Autofusing on how many levels?

Anyone mention anything about this?

Your spine link isn’t working.....do you have a new x-ray you could throw up?

Ed

This is the most current pic I have.. I know it's not the best quality..

Quote:

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Originally Posted by osumike

Was told the plan is to rebalance my spine, meaning stabilize where I'm at now, and get me to the point where I can actually stand up straight, without strain, and if we get there, then that would be considered a success.

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He’s right. Your going to have to accept whatever happens.....it looks extremely painful. I understand your posts and your feelings....and your surgeons feelings....I was told I could be fused “as is” and any coronal correction should be considered as a bonus. Many decisions are made after they get in....

I would ask if waiting for the Forteo to work is an advantage.....would a month or two help?

It’s going to hurt Mike.....but it doesn’t matter when you need surgery. When I walked in, there was no turning back.....

The IV meds are excellent.....when they knock you out, you wont feel a thing or remember much....They knocked me out every 4 hours for 10 days.

If you need to talk, PM me.

Ed

Quote:

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Originally Posted by osumike

Had my final pre-op appointment today. It's also been quite a wild week. I received a call last Monday, saying surgery was being postponed until June. Bone doc gave surgical clearance, but the surgeon said my bone density wasn't where he wanted it. Obviously this was extremely difficult to hear. Pretty much the same thing that happened in St Louis 6 years ago, except this time had a reschedule date.
I met with the Dr on thurs, and we agreed to stick to the original schedule of Nov 9, and I was started on forteo, which I'll continue to take through recovery.
On to today's meeting. It'll be a T3-sacrum fusion, osteotomy at L3, pelvic fixation. I've lost about ~4 inches of height. There's also plenty of auto fusion on my spine. Doc doesn't think he'll get much actual correction due to the auto fusion. Was told the plan is to rebalance my spine, meaning stabilize where I'm at now, and get me to the point where I can actually stand up straight, without strain, and if we get there, then that would be considered a success. I guess I never even considered that this huge procedure wouldn't result in me gaining some height back, having a straighter spine, or having a bit more "normal" looking torso. Thoughts?

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Hi Mike!
I've been away from this forum for almost a year. I remember following your case. I'm glad you found a surgeon.
I'll be in St Louis tomorrow for my 2 year checkup. I'm fused from T3 to S1. I had lost 5" in height & gained 2.5", after surgery. (I asked for 2"). I know you have a unique situation with your height.
Recovery will be difficult, but it is SO worth it! I love the idea of the tilt table! I practiced the log roll beforehand, but didn't anticipate my body being a dead-weight. I was off my anti-inflammatory for 3 months prior to surgery. It certainly made me realize how much that stuff helped with pain!
Sending prayers & encouraging thoughts your way!

mike good luck

Best of luck, Mike, for a successful surgery and a smooth recovery. The recovery is not easy, however, I was so much less stressed after the surgery that it was a better time for me than the weeks before.

Here are the reviews after my last CT scan...

IMPRESSION:

1. Levoscoliosis of the lumbar spine with ankylosis of the vertebral bodies
from T12 to L4 and at least partial fusion of the bilateral facet joints from
T12 to L4.

2. Degenerative disk disease at L4-5 and L5-S1 with mild spinal canal narrowing
at L4-5 and mild bilateral narrowing at at L4-5 and L5-S1.

And after the last x-ray:

IMPRESSION:

1. Unchanged focal kyphosis and grade 1-2 anterolisthesis of C3 on C4.

2. Unchanged dextroscoliosis of the thoracic spine and levoscoliosis of lumbar
spine.

3. The lateral images are limited for evaluation of vertebral body height loss
and fracture.

And this...

IMPRESSION:
1. Marked dextroscoliosis of the thoracic spine with partial fusion of the
vertebral bodies of T9-10 and T10-11 and fusion of the left facet joints from T8
to L1. There is associated variable left foraminal narrowing at multiple
levels. There is mild right foraminal narrowing at T11-12.

2. Moderate degenerative changes of the left costal vertebral junctions at T7,
T8, and T9 with hypertrophic bone and partial fusion of the left seventh,
eighth, ninth, 10th ribs to the posterior elements at these levels.

Mike, with all these things, words like mild, moderate, and partial do soften the blow some....Its an eye opener to read about all these things, my reports were also quite lovely I must say. I thought, what else is there? I guess its depressing to be beat down like this, and many thoughts run through your mind, but in the end I knew that things were not improving with time, and that surgery was the only way. Is it avoidable? Sometimes it isn’t.....pain grows old, and if your surgeon comments that it will be an improvement, you have to go for it....

Time for horse blinders.....put the medical literature down, look straight ahead and think about your long term goal. That’s all you can do. You will trade old pain’s for new surgical pain, but you do heal in time. Your positive attitude will be a huge benefit, always remember this...Its going to work, your new re-build is right around the corner.

My vascular surgeon came in to the waiting area by the operating room and he asked me if I was afraid. I remember telling him that I thought I was supposed to be afraid. Maybe I wasn’t afraid at that stage since my mind was way ahead, way beyond the recovery......sort of like skipping a chapter in a book. He told me it was going to be a long day and that they wanted to get started. He then found a vein in the top of my hand, and inserted an IV in just a few short seconds, the speed of it all impressed the hell out of me, this guy wasn’t playing around. I was out a second later. The team was waiting for me.....

They woke me up in ICU a few days later, didn’t remember much, and this new reality of hoses and computers surrounded me.....it was the next stage, and I don’t remember standing up for the first time. Pain was not a problem at that stage. When they back off on the “good stuff”, and that happens slowly, then the pain comes......the IV and injectable morphine, dilaudid, and lortab is the ticket.

Do you have someone to post for you? If not, give your user name and password to someone so they can communicate with us. We will be watching like a hawk.

If they offer the local nursing students to come in from the local college, go for it. You will all sorts of hottie’s hanging around. (smiley face)

Hang in there, you can do this!

Ed

Hey Ed, thanks.. And yeah, I'm ready for this. There's still a lot of worries about other things, non surgical related, but I'm ready. Scared, but ready. I trust the surgeon, and everyone else involved. It's really hard to believe it's just a few days away.

I'll give my login info to my girlfriend and mom. My parents are coming out here from Ohio tomorrow, so I'll have a lot of support and all the help I'll need. I'll definitely have them post on here as they're updated during, and certainly after surgery. I also must say this forum has been great for mentally preparing over the years... Thanks everyone...

I'll be looking on here over the next few days leading up to Wednesday...

Good luck Mike. Remember what Ed said --- eyes on the prize!

Quote:

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Originally Posted by osumike

Hey Ed, thanks.. And yeah, I'm ready for this. There's still a lot of worries about other things, non surgical related, but I'm ready. Scared, but ready. I trust the surgeon, and everyone else involved. It's really hard to believe it's just a few days away.

I'll give my login info to my girlfriend and mom. My parents are coming out here from Ohio tomorrow, so I'll have a lot of support and all the help I'll need. I'll definitely have them post on here as they're updated during, and certainly after surgery. I also must say this forum has been great for mentally preparing over the years... Thanks everyone...

I'll be looking on here over the next few days leading up to Wednesday...

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Wishing you smooth surgery and recovery.

I hope things went well for Mike today.....

Ed