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osumike
08-29-2016, 05:19 PM
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
08-29-2016, 05:57 PM
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
08-29-2016, 08:13 PM
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
08-30-2016, 08:32 AM
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
08-31-2016, 11:16 PM
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
09-01-2016, 08:19 AM
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
09-01-2016, 08:41 AM
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 donít 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 didnít want caffeine withdrawalís 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, itís 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 donít 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 torpedoís....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
09-01-2016, 09:19 AM
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
09-01-2016, 02:18 PM
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
09-01-2016, 02:21 PM
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
09-01-2016, 05:37 PM
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
09-02-2016, 02:39 PM
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
09-02-2016, 07:27 PM
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 donít 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 ďOff LabelĒ 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 6í9-1/2Ē tall. It was great because when ďhe crashedĒ in 3 feet of powder, there was still 5í 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 6í 8Ē so, Iím 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 didnít bend for months. I wasnít going to take that chance, no way. Anything thatís 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 itís 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. (Thatís 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
09-02-2016, 10:16 PM
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
09-03-2016, 12:03 AM
Good luck with your surgery mike

osumike
09-03-2016, 07:51 AM
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...

rohrer01
09-03-2016, 03:45 PM
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

osumike
09-03-2016, 05:16 PM
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.

osumike
09-03-2016, 05:20 PM
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.....

jackieg412
09-04-2016, 01:50 PM
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.

rohrer01
09-04-2016, 05:38 PM
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.

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

Robbi1464
09-06-2016, 11:19 AM
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

KathyInIowa
09-06-2016, 05:43 PM
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

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

LindaRacine
09-06-2016, 08:47 PM
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
Yikes! If she is seeing every patient with Dr. Perra, it's no surprise that she doesn't have time to answer emails.

--Linda

KathyInIowa
09-06-2016, 09:35 PM
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!

rohrer01
09-07-2016, 12:31 PM
Kathy, I will PM you as I don't want to derail Mike's thread. :-)

osumike
10-31-2016, 07:56 PM
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?

titaniumed
10-31-2016, 09:15 PM
Mike

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

Autofusing on how many levels?

Anyone mention anything about this?

Your spine link isnít working.....do you have a new x-ray you could throw up?

Ed

osumike
10-31-2016, 10:02 PM
This is the most current pic I have.. I know it's not the best quality..

titaniumed
10-31-2016, 11:57 PM
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.

Heís 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 ďas isĒ 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?

Itís going to hurt Mike.....but it doesnít 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

PeggyS
11-01-2016, 09:03 AM
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?

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!

kennedy
11-03-2016, 12:14 AM
mike good luck

golfnut
11-03-2016, 08:28 PM
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.

osumike
11-04-2016, 11:35 AM
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.

osumike
11-05-2016, 07:10 AM
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.

titaniumed
11-05-2016, 10:15 AM
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 isnít.....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. Thatís all you can do. You will trade old painís 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 wasnít 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 wasnít playing around. I was out a second later. The team was waiting for me.....

They woke me up in ICU a few days later, didnít remember much, and this new reality of hoses and computers surrounded me.....it was the next stage, and I donít remember standing up for the first time. Pain was not a problem at that stage. When they back off on the ďgood stuffĒ, 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 hottieís hanging around. (smiley face)

Hang in there, you can do this!

Ed

osumike
11-05-2016, 09:45 PM
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...

jackieg412
11-06-2016, 07:30 AM
Good luck Mike. Remember what Ed said --- eyes on the prize!

cathydrew
11-07-2016, 08:54 PM
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...

Wishing you smooth surgery and recovery.

titaniumed
11-09-2016, 07:41 PM
I hope things went well for Mike today.....

Ed

KathyInIowa
11-09-2016, 09:06 PM
Yes, I was thinking of him, too. Hope his family does a post soon.

osumike
11-11-2016, 06:44 AM
Mike had his long awaited 10 hour surgery. According to Dr. Tribus, he was able to stabilize the spine. I recorded the "after" surgery consult with the doctor. Once Mike is feeling up and staying awake to listen to it, we will post details of his surgery. Mike is still in ICU and in a horrible amount of pain. The staff have been very attentive to his needs and are doing their best to keep him as comfortable as they can. Thank you all for your support and giving Mike the confidence to go forward with this surgery.

titaniumed
11-11-2016, 07:02 PM
Hi Mikes mom

Welcome.

Thanks for giving us an update....Do try to stay strong through all of this and remember that things do get better in time. Deep breaths for everyone.

Have they gotten him standing up yet? I did a lot of standing by my bed during my ICU days...or at least that what they told me. I donít remember much during that period. Trying to get comfortable is so hard after scoliosis surgery.....it takes a really long time.

Donít be hesitant to ask if you have any questions.

Ed

Kay1974
11-18-2016, 12:45 PM
Just wanted to say I'm praying for you Mike and hope you are hanging in there.

God Bless,
Melisse

osumike
11-20-2016, 06:32 AM
Hey guys, As my mom said, surgery went well, I was in ICU for a couple days immediately following, then I was moved up to the orthopedic floor. All the nurses here are great.
I've been in a LOT OF pain. It seems to stem from my pelvis where the anchor screws are, and then a really sharp, burning pain running down my left leg. The nurses won't give me anything strong enough to kill that pain, because the surgeon won't authorize it. The only med that gives me real actual relief, it's valium. Because valium is such a depressant, they're having to be careful with the doses I receive.

We started to use the tilt table a few days after surgery, but every time I got on it I was so lightheaded and nauseous that I couldnt step off because it felt like I would collapse. After a few days of that, we tried something different. Dr Tribus had me sit up at the edge of the bed until I wasn't so lightheaded, then I stood up with him holding me for about 10 minutes so i wouldn't fall down. Eventually I was able to take a few steps with the walker, then I sat in a cardiac chair for a bit. It felt great to get up and move like that. The next day I ended up walking about 40 feet or so down the hallway and back. After all this, the hospital decided I made enough progress to be released to the rehab facility. Yesterday was the first full day here, and it was a pretty rough day, pain wise.
Right in the center of my back, at the hip, on the left side, there's like a bump, it almost feels like it's full of fluid. But the to the right of that is where I'm having horrible pain. I'm hoping it's just screws trying to heal, but of course it's hard to not think it's something much worse. I had x-rays taken before I left the hospital, and haven't heard anything is wrong sooo... I just feel like being 11 days out, that pain right there shouldn't be so bad. Maybe I'm being too optimistic. I know you people will talk some sense into me!
I did a little PT/OT yesterday, but only laying in bed because my rear hip/center lower back area was so painful. We'll give it another go today. I was able to get up and take a shower tho, which was great. Overall mentally I feel good about everything, other than the possibility that something is wrong in that area that hurts so bad. I know this post is a little rambling, I've been typing on it a little here and there for the past few days so... I'll be more diligent and post more often now, and I'll post a couple before and after pics real soon......

Edit: I updated my signature with a link to some pictures....

osumike
11-20-2016, 06:52 AM
...added link in signature with pictures...

Pooka1
11-20-2016, 09:12 AM
Wow so happy to read about your progress, Mike.

A few things you wrote and some of the pictures instantly transported me back to when my daughters were fused. You are 37 but I group you with the kids in my mind. I hope your recovery reflects that.

What do they say about the focal pain in that small area especially combined with the sciatica? If it isn't nerve pain then what is it?

You are doing so well.

Best regards, Sharon

Pooka1
11-20-2016, 09:17 AM
Maybe other people can venture a guess also but I think you are south of the 66T and 66L you walked in with. It is hard to see the lower curve on the after picture but I think both curves are reduced.

osumike
11-20-2016, 12:05 PM
Hi Sharon, that picture I put up that shows the 66į lumbar and thoracic curves was an xray taken in St Louis in 2009 I believe. I just added that to give an idea of where I was pre surgery. I assume my curves had progressed since then, but I really don't have an actual correct number. Maybe I'll delete that pic, and see if I can find something a bit more recent. The problem with that is the quality of the current ones aren't great, because they're just pictures I took from a computer screen. If I change anything I'll post it..

Edit: Sharon, I completely misunderstood what you were saying about the 66į curves... But yeah, the quality of the after x-rays is pretty bad, so I'll try to get better ones when I get a chance. Thanks!

titaniumed
11-20-2016, 12:20 PM
Mike, Its hard to say what could be causing any localized pain when the whole surgical area is raw and inflamed.....Inflamed tissue can impinge on nerves causing pain....and nerves can be quite stubborn when it comes to healing and healing takes time.....I see your horizontal anterior scar, it looks like you skipped the ileus which is a good thing. I was 9 months along and huge. That when the guts stop working, its extremely important that you maintain your daily bowel movements. Drinking water and walking helps with this.

The showers are heaven.... If you can get in for frequent hot showers, they will help. The main thing is falling, your not allowed to fall. Take the walker in the shower with you if need be.

You realize that frequent short walks are so important for blood transfer. This brings nutrients into healing zones, and also helps reduce swelling which can happen all over....(hydrostatic pressure imbalances and fluid stress) This happens after surgery. When the nurses came to my house, I always did my short walks no matter how much it hurt. Remember that you can always stop for a break. I used ski poles. Sometimes it seems like walking across the United States is this unobtainable goal, but it isnít when you take it one step at a time. Now you are ready to walk around the world. One step at a time.

Surgical pain can continue, it seemed like I had no improvement for a few weeks, it truly was dreadful, then suddenly I had this immediate improvement of 10-20%. It came in steps for some reason. Since the nerves seem to have this on/off heal switch, there was no gradual improvement, then some nerves healed and I improved. Many here have reported these steps of improvement. That first step came around 4 weeks. Patience with pain is something we learn....Pushing through pain is something that became part of my psyche. Its not our choice, its an adaptive trait.

If you can get copies of your digitals burned to disc from the radiology dept, thatís the way to go since they can be zoomed in.

Hang in there, you made it

Ed

LindaRacine
11-20-2016, 01:38 PM
Mike...

Opoids are pretty useless for radiculopathy (which is presumably the leg pain you're having). Are you on gabapentin?

--Linda

osumike
11-20-2016, 02:32 PM
Yes I'm taking gabapentin. I'm having horrible pain in my rear hip area, seems like there's fluid or something pooling back there, theres a bump protruding around the incision by L2-L4. about the size of a credit card. It hurts mainly when I'm sitting, which seems to put pressure on that bump. Laying down takes some pressure off but not completely. Also, after any amount of sitting or walking, I get extremely cold. My temp has been pretty stable and bloodwork showed no infection so not sure why I get so chilled.

osumike
11-21-2016, 05:23 PM
Had a nurse check out the spot I'm having so much trouble with today. Pretty much said it's normal fluid build up, and that there's going to be pain no matter what right now. Makes sense, it's not even been two weeks yet. I guess I'm just getting tired of laying in this bed, not spending enough time up moving around, and feel like I want to be swinging from the rafters by now... Ah well... Steady as she goes... I did stand for a shower today, didn't sit down at all. That felt great! Tired me out a bit, and caused a little extra pain, but just being able to stand long enough for a shower was a great mental hurdle. Overall, everyone says my progress is excellent so far, especially since we went without the tilt table. The nurse is on her way in now to change the dressing on my spine since it got wet in the shower.. I'll see if she'll take a pic or two and I'll post.... Good luck everyone........!

osumike
11-21-2016, 06:05 PM
So.. Honestly I never ever had any intention of posting a picture like these.. Just kind of seemed embarrassing I guess. But here is a pic of my back the morning of surgery before we left home, and the other is a picture that was taken five minutes ago. I can certainly see improvement, especially in the right shoulder blade area. I know my spine and my situation was and is special, and unlike most others. A bit more cosmetic improvement would've been great, but if pain relief is what comes of this, then of course all this is absolutely worth it........



1907
1906

titaniumed
11-21-2016, 08:14 PM
Mike, No worries on the photos....were used to it around here....Our scars are our silent testimonials of triumph and pain, which goes deep with us. There is no embarrassment...

How many walks do you do during the day? and how is the log rolling doing? Are you using the tilt table most of the time?

With sitting, I didnít like leaning back or sitting back in a chair. Didnít want to make any contact since its so delicate, so simply sat up with perfect posture. Your not making contact with your delicate fluid spot on the back of the chair are you? Also, sitting at that stage was short, under a few minutes, any more and I would have to stand back up. Standing up seemed the most comfortable position for me. Sitting is a difficult position after scoliosis surgery. Understand that this is all immediate recovery related, and that it will pass as you heal and toughen up again.

I was also very cold after my surgeries and set the temp at 84 degrees in the house. Had some record gas bills.

I take it you are still in Wisconsin? How far are you from your surgeon?

I think your going to do just fine, your posts reflect this. Its good to have that huge bubble of anxiety burst upon surgery. You have turned the page. (smiley face)

Hang in there

Ed

susancook
11-21-2016, 11:15 PM
Looks awesome to me, Mike. Be proud.
Susan

titaniumed
11-24-2016, 09:26 AM
Mike

Hoping the pain isnít too bad, this period of recovery can be hard.....hang in there

Maybe you will get some Thanksgiving dinner....go easy. My best advice for today would be to stay clear of the stuffing. Donít go there, trust me on this one. If it will last a century in a cardboard box, it wont be the healthiest choice....

Now I have all the cooks freaking out....(smiley face)

Ed

osumike
11-24-2016, 10:12 AM
Haha, thanks for the advice Ed! I'm still in this rehab facility, which I'm ready to break out of any day now, but the people are nice, the food is actually good, and they take the rehab seriously. I just got done taking a looong hot shower, stood up the whole time, probably 20 minutes or so. Felt great, but kinda wore me out. Yesterday in PT I walked up and down ten stairs, that was pretty encouraging also. I just had the nurse take the bandage off my back for good, and had her take a pic of it. Here it is:

osumike
11-24-2016, 10:19 AM
And why does every picture I put into the body of my responses keep showing up sideways???!!!! I even tried rotating them in my folder first in anticipation that maybe it would rotate it to be the correct orientation, but nooooooooooo! Oh well. Happy thanksgiving everyone...

Pooka1
11-24-2016, 10:22 AM
Wow your scar healing is excellent!

So glad to hear you are recovering well. I think you are grouping with the teenagers in term of recovery. I think you will reach a point where your back is stable and you don't have to worry about it any more.

Best regards, Sharon

jackieg412
11-24-2016, 12:46 PM
Happy thanksgiving. Looks great.

osumike
11-25-2016, 07:41 AM
Had an interesting thing happen yesterday. So I was laying in bed, the hospital bed in this rehab place, with the back tilted up a ways. So I was laying, but my torso was angled up at,I dunno, let's say a 45į angle. All of a sudden, the bed gave out, and the part that was tilted up just fell down about 4" I'd guess. Very abruptly, which also means my body was very temporarily not in contact with the bed, and slammed down on it after the bed caught and stopped falling. It wasn't very far, but it definitely hurt to land on my back like that.

Go figure, it was thanksgiving, but they did have a maintenance man come in to take a look. He had no clue because this bed was borrowed from the hospital because of its extra length. I am like 6'7" or so... So we ended up just laying the bed flat and unplugging it so it couldn't be moved overnight accidentally. They're supposed to be delivering a new bed this morning sometime around 10:00.

In the meantime, I'm stuck sitting in what they call a cardiac chair...? I've never heard that term. Basically just a small recliner that's electric that will recline, extend the foot rest, and also move itself into position to help you stand up. Not the most comfortable, but it is what it is. My back felt like it was on fire after that bed collapsed like that yesterday, and the best they would do for the pain was give my meds a half hour early.

Anyway, other than that, I really do feel like everyday is getting better. I'm trying really hard in PT and OT, I just want to get out of here and get home! I'm having my girlfriend, mom, and dad go out and buy me a nice recliner for when I do get home(which I'm expecting will be absolutely no more than two weeks.) Probably more like one week. My dad is tall like me, he's 6'6", so I talked him into going out on this crazy shopping day to sit in a few to see if they're big enough.

Have a great day everyone!

Pooka1
11-25-2016, 08:27 AM
Hey Mike. That's crazy about the bed. Sorry that happened.

Your spirits seem high which is so good. That will help so much.

titaniumed
11-25-2016, 10:08 AM
Mike,

You didnít eat the stuffing did you? This probably contributed to the failure of the hospital furniture. He he Hope this new pain passes quickly....

The scars look good, keep an eye on them. If there is any doubt, redness, swelling etc, have your doc take a look. Incisional infection is serious. Is your fluid pocket improving?

I can understand about wanting to break out and go home.....

Are you log rolling out of bed now? or using the tilt table?

Things do get better everyday.....

Ed

osumike
11-25-2016, 11:12 AM
No tilt table. I was on it maybe 3 times, and doc said forget it, and I've been doing the log rolling method. Just got the bed fixed, repair guy said he'd bet his life that it wouldn't happen again. We'll see. My family from Ohio showed up here yesterday evening, they'll stay for the weekend. I've been wanting to get a nice recliner for when I do get to go home, so since today is black Friday, I figured I'd try talking them into it. They agreed, and since my dad is 6'6", I talked him into going with the women so he could test out the size for me... Haha.. They picked a nice one out, and it'll be waiting for me whenever I get to go home.

titaniumed
11-27-2016, 11:29 PM
Mike

Your approx 18 days now. You hanging in there?

Iím wondering what kind of meds your taking being as large as you are? I peaked out at around 5 weeks post on well over 100Mg of Percoset. Iím having trouble remembering this stuff lately.

What do you think on breaking out? Do I need to post some Thin Lizzy? (smiley face)
https://www.youtube.com/watch?v=BRo3u04vY1E

Ed

osumike
11-28-2016, 06:05 AM
Funny you should ask... I just texted Jenn I'm ready to break outta here! They're actually doing the home assessment this Wednesday, so I'm planning on going home after that. Just need a couple handles installed. One right by the entry door in the garage that goes into the house, and at least one just outside the shower. I'm hangin, but I'm ready to get home.

Meds... Ah yeah.. So before surgery I was taking 60mg of morphine twice a day, 10/325 Percocet at least twice, sometimes three, and rarely four times a day, and a muscle relaxer twice a day.

Right now I'm taking 20mg of oxycodone every 3-4 hours, 60mg morphine twice a day, I think it's 100mg of gabapentin twice a day, Tylenol a few times a day... I was taking valium every 4 hours, but as of last evening,I told the nurse that I'd like to stop taking that one. I'm not real sure it was doing much, but mostly I just didn't want another med to try to kick later on. They're also giving me vit c, iron, and senna for my bowles. I know this is kinda gross but I actual had to request a butt pill a couple times because I just couldn't go, and I didn't want that to get too far out of hand. Since the last one it's been all good.

And man, I used to listen to thin lizzy a bunch!

titaniumed
11-28-2016, 08:31 AM
My surgeon asked me how many steps I had in my home quite a few times. I have 2 leading into the house......It was all about falling. No steps, no treadmill. Anything to keep from falling.

We have to become lower GI experts after spine surgery. Opioidís have a tendency to lock us up, and opioid constipation is extremely painful. Itís a careful balance of spine pain or lower GI pain.

I was saved by the Magnesium Citrate. Sold over the counter, $2 per bottle, it would be a good idea to have a few bottles of this laxative on standby, it will save a trip to the hospital in case you lock up again.

With me, it seemed that the lower GI pain outweighed the spine pain, and that was what made me quit the meds. After 6 weeks of this, I was willing to accept some spine pain over bowel issues. I replaced the meds with nutrients, thru smoothies. It takes a lot of energy to heal, eating and re-supplying that energy becomes a necessary thing. I lost 40# in 40 days and was withering away and turning grey.

I would boil in my tub and listen to a queen concert dvd over and over since it was not a priority changing the disc! I listened to ďAnother one bites the dustĒ hundreds of times, and came close, but no dusty for me!

My survival along with healing was my priority back in those days.....There were no outside distractions, everything other than maintaining myself was put on the backburner. I wasnít going to worry about anything other than healing. It was my time to recover......

Ed

osumike
11-29-2016, 05:52 AM
Yeah, I've also decided I need to just focus on me as much as possible. My full recovery is most important at this point.

So it appears I might have developed a seroma on my lower back. It's been swollen a bit since I left the hospital and came to this rehab place, and it has appeared it's been pooling fluid. It hasn't bothered me at all, really, pain wise. Until yesterday. It's as big as it's ever been, and it's starting to get pretty painful. Painful to the point that it affected my physical and occupational therapy. My next appointment to see my surgeon was Dec 22, and I just didn't think that was soon enough. I sent some pictures of the bulge, and pretty much right away I got a call from his nurse saying they want me to come in on the 5th. Of course that made me extremely nervous that something more serious was going on, but then she described the fluid and how my body just isn't reabsorbing it. My family doc is also coming in here to see me today, so I'm hoping to hear it's just a seroma, and it'll need to be drained.

Here's a couple pics of the "bulge".......

titaniumed
11-29-2016, 08:33 AM
Mike, Seroma has been mentioned here in the past.....

Be sure to let us know what your family doc thinks....

I was told that if I had anything happen to simply come on down to the office. It didnít matter if my surgeon was there, they had multiple docs, nurses, and PAís hanging around.

How often are you up and walking each day? Since I couldnít sleep much or sit, I was either walking or pacing most of the time. I assume that this helps with the draining and equalizing process. I had my ileus and my feet and ankles were huge from edema.

I hope this passes quickly

Ed

osumike
11-29-2016, 05:08 PM
The nurse practitioner here at rehab thought the "bulge" deserved immediate attention. She contacted my surgeons office, who wanted me to come in today. Which was great, because I was in a lot of pain, and I just wanted an answer about whether this was something to worry about or not.

I wasn't able to see my surgeon, but one of his associates, and another ortho scoli surgeon, which was fine with me. We quickly and obviously determined it wasn't spinal fluid, because I didn't have a headache that felt like my head exploded. (I've had a headache from spinal fluid leakage before, and it is absolutely the worst. EVER.) So it is a seroma. They decided they were going to drain it right there. They removed 500cc of fluid, and definitely could've kept going, taking more out. He was like pushing fluid down my spine and incision area to where they had the syringe sucking all that junk out. Kinda gross, but here's a pic of all the fluid they removed:

http://www.scoliosis.org/forum/attachment.php?attachmentid=1912&d=1480466908

I'm back laying in bed on my back right now, and my pain level is much better, BUT, I've taken all my meds a little over an hour ago. They fitted a sort of corset for me, to help my body absorb the rest of the fluid. If that doesn't work, they'll put a drain tube in me, and admit me in the hospital for a couple days. If THAT doesn't work, then they'll have to surgically go in and clean everything out. Hoping it doesn't come to that.

The doc said this is fairly common, especially given the size and severity of surgery I had.

Ed, I have been up and walking quite a bit, the nurses here have been telling me how great and fast my progress is going. But now that I'm thinking about it, I think I should be getting up a lot more frequently just to take a walk around.

titaniumed
11-29-2016, 11:10 PM
Mike, good call on your nurses part....Glad you got some relief. That is a lot of fluid...

It would be logical to say that any infection involves worsening pain....and your ability to feel this pain change over your current medication dosage is critical, along with having professionals monitor your seroma and your incisions. It would also be logical to say that early detection of infection would be beneficial.....I am guessing you will be hanging out for a little while longer...

Have you experienced any night sweats? I had that happen every few days for months, I am guessing that it was my body fighting off infection, that, and a combination of the meds. (anesthesia meds) I was also very cold for a really long time. I didnít have an electric blanket, but that sure sounds like a good idea. Freezing/sweating/and freezing, again and again.

My surgeon warned me about being sedentary in my recovery and didnít want me hanging out in bed all day long.....I didnít see what the problem was since sleeping for me was so hard even being as tired as I was.....if I wasnít sleeping, I was up, and I was up like 20 hours per day. Standing is also exercise, and that leads to walking....I have no idea how exercise affects fluid absorption, all I can say is that it did work for me with ileus and edema. I didnít have a seroma....

I hope this mellows out....

Ed

osumike
11-30-2016, 03:22 AM
Hey Ed, as far as they could tell, that was not an infection at all, just fluid that wouldn't be absorbed by the tissues in my body. There was still quite a large bulge even after they took all that fluid out, which I thought was odd. I mean, there's clearly more fluid in there, you've already got a huge needle in me, why not try to remove as much as you possibly can at that time? Last night I put on that corset, as tight as I could get it, and took quite a long walk around this place. I took it off before I went to bed, and as I'm typing this, I can physically feel that the bulge isn't nearly as big as it was. Could be a coincidence, but it's encouraging, so I'll definitely be wearing that thing more often than not.

The first week or so after surgery, the night sweats were absolutely terrible. I would wake up in the middle of the night, and feel like I was just in a swimming pool. Just absolutely soaked. I'd have to change my clothes and sometimes call a nurse in to change my bedding. It was awful. That's gotten much better, although sometimes, I do wake up in the middle of the night, like right now, and my back is a little sweaty. I think that's just because I keep this room a little warm, because like you, I've felt freezing cold ever since surgery. Sometimes I just can't get myself to warm up. I mean, I am in Wisconsin, but it's only been in the 40's, and I've not been outside too much. I've been layering on clothes though! I do feel like I'm starting to get over that as well lately.

Before I went to see the surgeon yesterday, we went to my house to do a home evaluation about my coming home soon. I've already ordered a ton of medical equipment from Amazon that'll be delivered today... Raised toilet seat with handles, a walker, grab bars for the bathrooms and one for the door going into the house, I got one of those bed rails that sit between the box spring and mattress, have legs on the floor, then a rail that goes up above the mattress so I'll have something to help push myself up when I logroll out of bed. Yeah, the plan is still for me to go home tomorrow. There's really nothing more that I can do at this rehab place that I can't do at home, so I'm busting out. Pt has recommended in home therapy for a while after I go home, which is fine with me. It'll be 2 or 3 days a week.

Later today I'll go see my family doctor, I suppose just for a general checkup, and for him to sign off saying I'm good to go home. It's about 3 weeks earlier than originally expected, but I really have made great physical progress since I've been here. Other than that damn fluid pooling.

Well, it's like after 3am here and I feel wide awake, so maybe I'll put my corset on and go for a quick stroll..

jackieg412
11-30-2016, 07:31 AM
Hi Mike. I live in Illinois and can relate to freezing. One thing I found was wearing a polar fleece vest helps. It keeps you core warm. I sometimes even sleep with it on. Try it. It can't hurt anything.

osumike
11-30-2016, 08:10 AM
Yeah I actually got one of those moisture wicking, under layer things, long sleeve..... It's super thin material, and you'd never think it would keep you warm, but it works really well... Very surprising. This is actually exactly what I've been wearing:

https://www.amazon.com/gp/aw/d/B00SCP8M8C/ref=yo_ii_img?ie=UTF8&psc=1

jackieg412
11-30-2016, 10:18 AM
They do work well but I am thin like you and I found out if I am cold to add another layer and the vest works well for that. It is
Like making your core warm. I also found out not to let the metal get cold. Since it is inside you might think that shouldn't happen but it does.
Then the only thing that warms it is a hot tub soak. Stay warm you will feel better.

osumike
12-03-2016, 06:01 AM
Well the damn seroma came back with a vengeance... As luck would have it (again), I was able to make a last minute appointment with another surgeon. Same guy as the other day. He removed about 500cc of fluid the first time. Today, meaning about 15 minutes ago, he was able to suck out around 1250cc MORE! Crazy. I really hope this time takes care of whatever is going on inside me. The doc felt confident after the procedure, and you can see a major difference in the way my back looks now, compared to when I walked in here.
I need to wear this corset as much as I can possibly stand it, to get the rest of this fluid to absorb into the right places. I'm also going to try to keep this bed I'm in at more of an upright angle, to get that fluid to drop down so the corset can do it's job.
I finally also came to the realization that I'm trying to move to quickly through recovery. It's only been 3 weeks. I felt so good so soon, I thought I was ready for anything. Although I was getting reassurance from physical and occupational therapy that I was progressing so fast, and they even signed off on discharge papers to send me home. Then this seroma thing started to appear. Total reality check. I'm positive I've been moving in the wrong ways, and probably, definitely... Doing things my body isn't ready to be doing. I need to just relax and take the time I really need to heal this thing properly.

Edit: I typed all this yesterday around 5pm, but apparently never actually posted it.... Just sayin..

titaniumed
12-03-2016, 12:34 PM
Wow! There is 946ccís in a quart, and that was only 3 days....

How are you feeling besides the seroma? Did you bump up your activity and do you think it might have contributed to the increase in fluid?

Has this other surgeon mentioned anything about this continuing, coming back to manually drain on a regular basis, and testing for possible infection to rule that out?

I have read that these persistent seromaís can create their own bursa sac....

Ed

LindaRacine
12-03-2016, 09:07 PM
Hi Mike...

Whatever you're doing, you're not causing the seroma. I think it's just anatomy. As far as complications go, this is definitely one of the really easy ones (assuming it doesn't eventually evolve into an abscess and/or infection. If the seroma continues to return, they may need to put a drain in to get it to resolve.

Have you been wearing the brace they gave you?

--Linda

osumike
12-04-2016, 06:10 AM
Hi Ed and Linda..

Yeah, have been wearing this brace/corset/girdle(ha!) since I went in the second time to have the seroma drained. I didn't wear it much after the first time it got drained, because when I had it on, it felt like it was just forcing the fluid up into other areas.

Since this second time he was able to drain SOOO much more fluid than the first time, I've had it on probably 95% or more of the time. Took it off to take a shower, and one other time just to let that area breathe a little. I do feel like we definitely made progress this second time. There's definitely still fluid in there, and you can see it, but it's very spongy, and it's staying in basically one area, just at the base of my spine. I'm really hoping by wearing this corset so much, my body will finally just absorb this, and I can move on.

I finally get to go see MY surgeon tomorrow. The two times I had the seroma drained, it was done by one of his colleagues. I'm certainly glad to meet with him, and get his opinion, but I'm also a bit nervous about his opinion. Ok, backing up a little, after the second drainage, when they got over 1000cc out, I sat up on the edge of the exam table, and apparently you could see what fluid was still in there dropping down due to gravity, and forming a bit of a pocket. I really wish I would've asked him to try to pull more fluid as I was in the sitting position, just to get as much as possible. But, hindsight is 20/20, right?

Ok back to tomorrow's appointment. I was originally told that normally they'd attempt to draw the fluid out manually with syringes, if that didn't work, I'd have a drain installed, and probably spend at least one night in the hospital. If the drain doesn't work, then the last option would be to surgically go back in and clean everything out, and I believe a heard him say they'd maybe close everything up a little tighter...? Does that make sense? Maybe that would lessen them size of the "pocket" the fluid continues to fill in? I'm ready hoping Dr Tribus tomorrow sees that there's not much fluid left, and either go in manually one more time, or go with the drain. Just not looking forward to more surgery.

I know I'm writing a lot here, hope I'm not rambling too much. I've got LOTS of time just sitting/laying in this rehab place. As far as that goes, occupational therapy has completely signed off on me, so I'm done with that. Physical therapy I'm still working with, and I'm assuming I will be for quite a while. I like it though, gets me up and moving. They timed me yesterday, that I walked roughly 967 feet in six minutes. Feels like I walked further than that, I thought I was almost speed walking!

Alright, enough for now. I'm am planning on going home for a few hours this afternoon, just for a change in scenery mostly. It's only a 15 minute car ride, so it's not horrible. It is supposed to snow about 2-4 inches here today, first snow of the year.

Have a great day everyone!

osumike
12-04-2016, 06:57 AM
I was very torn on whether or not to post these pictures. My girlfriend made a great point about why I should, so I will. The first couple will be of what my back looked like when it was full of fluid from this seroma. Then you'll see one of me sitting upright immediately after they pulled out over 1000cc.

titaniumed
12-04-2016, 09:00 AM
Mike the photos donít look bad....I was picturing a much larger sized fluid pocket.

967 feet in 6 minutes is moving along pretty good, heck your faster than me and Iím almost 9 years post. (smiley face) If your doing this pace, I guess the pain is reducing some. How is the pain now? Are you almost off meds?

I guess if it continues at the Niagara falls pace you mentioned, going back in for a drain might be the best thing.

At some point, you will heal and this will all be over. I am hoping this happens soon....

Ed

osumike
12-04-2016, 01:05 PM
Almost off the meds??!!! Haha, no way. I was on heavy duty narcotics for way too long prior to surgery to be able to kick them this fast. Right now I'm taking 30mg of oxycodone every 4 hours. Valium every 4 hours. 60mg morphine twice a day I believe. Although that one could possibly be three times a day. 300mg of gabapentin a couple times a day. Tylenol a couple times a day. Then I'm getting sennakot, iron, and vitamin c. A protein shake type thing a few times a day to try to keep my weight in check. I quit taking an anti depressant about 6 months ago and have lost 20-30 pounds since then. Yeah,I know, I've got a rough road ahead as far as getting off these narcotics. I'm very much looking forward to getting off them completely, but I know it'll be tough.

osumike
12-07-2016, 07:28 AM
So... Couple good news items I think... I saw my surgeon Monday. He himself, not an intern, our fellow or anyone else did the job of draining that seroma again. He had me sitting upright this time, and removed another close to 1000cc. The good thing here is it felt completely different this time. Afterwards, he put a couple sponge type things over the area, taped them on there very tightly, and then wrapped 3 ace bandages around me. I'll be going to see him this coming Monday to see how that did. It's hard to tell with all the wound dressing on there, but I think it's keeping the fluid refilling to a minimum. Crossing my fingers.

After that visit with Dr Tribus, he recommended I just go home for good. So being out of the rehab facility and back home has been great. Had a nurse come by yesterday just for a general wellness and medication check. I'll be getting in home physical therapy for a while also, 1-3 times a week. Not quite sure when that'll start up.

So that's my update for now I guess. It's been fun the last couple nights being home and thinking of ways to setup the elf on the shelf for the 7 year old here.... Pretty funny stuff..

jackieg412
12-07-2016, 07:36 AM
It is so good to get home and do normal happy things.

Pooka1
12-07-2016, 07:51 AM
I'm glad you are home, Mike. You sound very chipper! Onward and upward. :-)

titaniumed
12-07-2016, 08:22 PM
You sound very chipper!

Woah, careful, I think Mike is close to the Fargo area.....You know, chipper, Fargo?

Now since I was taking Percoset, I was leaning more in the direction of feeling perky, than chipper....Perky is one of the side effects of Percoset. Ohhh, Ya!

ďSounding chipperĒ with scoliosis hardware has a tendency to jam up the equipment.....We donít do well in chippers.

Thatís it, Iím out of chipper jokes....Maybe if I was up there, I could come up with more....

Ed

Pooka1
12-08-2016, 06:25 AM
Lol Ed!

Didn't she win an Oscar for that role?

titaniumed
12-08-2016, 08:28 AM
Yes, she did...Frances McDormand. She did a good job in that role.

Its not easy coming up with scoliosis related jokes. Sometimes I think off the wall, and run across a comic strip that includes a beaver holding a martini, so I guess Iím still ok. He he

Its good to lighten up about scoliosis....when things get serious, I get serious, then after, the jokes roll.

It evens out the steam and eases the pain.

Ed

kennedy
12-13-2016, 10:17 PM
Nike I'm glad your home

osumike
12-14-2016, 05:46 AM
Well we just can't seem to get rid of this seroma. My surgeon drained over 1000cc last Monday, and then tightly wrapped me with gauze and 3 ace bandages for a week to see how it would go. Went in a couple days ago, Monday, and there's still at least another 1000cc according to him. Extremely frustrating of course.

This morning at 9 I get to go in for a procedure to get a drain put in. After searching online, I'm assuming it'll be a Jackson Pratt drain. Won't be a surgical procedure, but they said I'll be pretty heavily sedated. Man I hope this will be the end of it. I've been getting a pretty painful spot in my lower mid back, but I can only guess it has everything to do with all the fluid pressing on areas it shouldn't be.

I'll let ya know how it went.. At some point..

osumike
12-15-2016, 06:58 AM
So I didn't get the Jackson Pratt drain. I can't remember the name of what they called it, but it was very generic sounding. Something like a common use drain or something, but we are using the Jackson Pratt drainage bulb. Pretty much keeps a constant suction going. Since I've been home, I've drained around 600cc, and I've noticed the color of fluid coming out has turned more clear, and less bloody. More of a watered down kool-aid color. Definitely feeling better already, having all that fluid out.

Just for reference, I'll add a couple pics.... Hopefully the bit of blood isn't too much for anyone to see.. If it is, please let me know and I'll remove it immediately..


Sort of good timing for this anyway, we've got windchills around -25 below right now.. NO reason to be outside now!

osumike
01-26-2017, 10:15 AM
Hey guys.. Just want to get a few things off my chest, and see what happens. For the past few weeks I've been really struggling mentally here. Super emotional, which isn't normal for me. I thought I had a bad sinus infection, so the doc prescribed antibiotics, which didn't help. I have trouble speaking, my voice is hoarse, throat hurts and feels like there's a rock stuck in my throat. I think it's horrible anxiety and depression. Thinking about seeing a psychiatrist or something.

Went in to see my surgeon a few days ago. The pain has gone down, although I'm still taking oxycodone and morphine. One of the worst pain spots pre surgery though, is still there. My right ribs are still hitting my hip. Just sooo uncomfortable feeling. I let him know that I'm disappointed in this, and a bit angry as well. Sometimes regret doing it.
I do think I'm healing well otherwise. I'm able to move around pretty well. Actually I feel almost as flexible as I did prior. He said that's great, and that there's no sign of hardware failure. Lifted all restrictions. I told him there's no way I can live the rest of my life with my ribs and hip like this. He seemed a little uncomfortable at that point, and said that we can discuss more surgery after I heal more. Probably in a few months. If the decision is mine, I'm in for sure. It's disappointing, but encouraging knowing there's something that can be done.
I started to try cutting the med intake, and really overdid it. Tried cutting WAY too much at one time. My body went into the withdrawal symptoms, which was pretty awful. I'm back to taking them mostly as prescribed for now. I just want to get back to feeling normal mentally. I'm sure these meds are why my brain is so scattered right now. Another source of this anxiety is knowing that I don't have a job to go back to. That's pretty tough.

It's hard to keep a level head right now, and damn it's a struggle.

KathyInIowa
01-26-2017, 11:06 AM
Hi, Mike. I'm really sorry you are struggling. You had a very rough surgery and with the seroma and all of that. Hang in there, it does get better.

My curves were a lot less than yours so I can't comment on your surgery itself, but I will say that I was the same way emotionally. I never got emotional over my pain or my "situation," but I swear I cried more (for no real reason) when on these medications than I had cried in the previous 5 years. Everything I read pointed to the drugs and the way they mess with our brains. I think once you are able to get off the drugs you will find that your emotions even out some.

The job situation definitely adds to the stress of everything. Hopefully you have a supportive family.

My post op pain was also in the same spot as my pre-surgical pain. It was mainly the muscles where my rib hump was, it wasn't bone pain. That lasted about 5 - 6 months for me. I am now 7 months post op and I can still get "tight" in that same spot, but it is not very often any more. You are 6'7", I am 5'3" and your curves were worse than mine and our ages are very different, so we are nothing the same! So, I'm not sure any of my input is helpful!

Kathy

titaniumed
01-27-2017, 01:19 AM
It's hard to keep a level head right now, and damn it's a struggle.

It is Mike, but your going to get through it....

I never looked back, not even once. I was always looking forward knowing that it was going to work out. I knew this because of all the people before me. They made it, and so could I and wasnít giving up, thatís for sure. Our commitment needs to be 100%. As far as commitment is concerned, there are some heavyweights on this forum, no doubt....

For anxiety, I would go walk outdoors. For depression, I would switch to comedy.... Many of my earlier posts involved comedy, I am guessing I was depressed and had some hilarious posts here. Many members fell off their chairs! Donít make me post Beavis & Butthead, Linda will get mad at me! (smiley face)

The Yule log Christmas specials that Mike Judge did were classics! LOL Really dumb.....but so clever...

I qualified for federal disability and the hospital sent me all the paperwork. They would vouch for me if needed, they considered it a slam dunk. (No Lawyer, no fee) If you donít own anything, its easy. If you do, itís a pain in the butt and you have to set up a trust (Need a lawyer) as the Feds have rules.

There is always going to be another job.....and it doesnít have to be what your used to, it can be something new and interesting. If you can get through heavy duty scoliosis surgery, you can do anything! I have a friend who started doing real estate photography, and he loves it. He is a big guy like you.

As far as pains go, your still extremely early. I thought I had an incisional hernia a few months post, saw my vascular surgeon and he told me that there was no way he was going back in so soon. These surgeons like to wait a year. It turned out that it wasnít an incisional hernia, I lost my gall bladder after months of painful gall attacks. I was 15 months post for that procedure. My shoulder surgery was at 9 months. It was one day at a time, an exercise in patience.

I used hot water soaks to help with weaning.....I also terminated and went into withdrawal and gave in and then resumed my meds on a lower level. I terminated once again and made it after a horrible 48 hours hugging the toilet, freezing and sweating with no sleep. After that, I recovered quickly, jamming nutrients. Nutrients replaced the meds, nutrients heal and meds mask. A powerful healthy ďgrowth mindsetĒ that you can acquire with effort. This is important. Your failure is never due to a lack of talent or ability as in a ďfixed mindsetĒ. Think healing thoughts.
https://en.wikipedia.org/wiki/Carol_Dweck

I also got mad around my surgeon, not at him, just mad......in ICU on heavy meds, and lectured about re-living major pain once again when my neck herniationís took out my arm....I realized that he did all that he could do surgically, told me it was going to feel like I was hit by a train, and that he wasnít at fault, he did the best he could. It was my decision, not his, he was only helping and I felt pretty bad. I also realized that every time I saw my surgeon, I was in MAJOR pain which makes it so difficult to relate on a normal level.....Its something I think about a lot since this guy saved my life. This appreciation comes later, years later since our recoveries can take a really long time.

I hope some of these tidbits help some....Healing happens.....

Hang in there

Ed