New To Forum - Revision needed?

[Tina_R]

I went ahead and started PT to hopefully get me in the best shape possible for the procedure when I have it done, no matter if its the smaller or larger fusion. I still have maybe 5-10 pounds of pregnancy weight to lose but alot of what I feel I need to do physically for prepping for another fusion would be core strengthening and muscle toning and working on flexibility in order to compensate for post surgical limitations and even longer term limitations.

You are smart. I wish I had worked out before my fusion a few months ago. While I'm recovering my surgeon has disallowed any exercise except walking. I do a lot of that but I feel as though my arm and core muscles are atrophying. Wearing a brace to keep from twisting babies the torso even more.

[titaniumed]

So are you saying that I wont ever be able to pick up small kids again with that fusion, or just during the very limited activity window during the immediate healing from surgery? I would imagine getting down onto the floor and up off of the floor is a multi-step process forever after a procedure like this is done. Is it just awkward or is it also painful? Being on the floor also for prolonged periods is the same way?

I could probably lift you over my head right now, but hold a child waiting in line at the grocery store for more than a few minutes would create soft tissue pain. I have noticed lately that even the slightest of forces, just 1# of tension being held for a few minutes will stimulate the need to move. We are like sharks that have to keep moving. Sitting or standing in one position for more than a few minutes is hard sometimes. Sitting at my desk, I do a lot of moving around, changing positions, and frequest walks. Sitting on airplanes is also fun....I carry 2 down pillows in a carry on and even still I am very fidgety with changing pillow positions and body positions.

The only way to get a soft tissue tension break is to lay down. Sometimes, I have to lay down or I get really exhausted. Lay down flat on my back without a pillow, dead flat. Beds need to be dead flat, I really notice this with full fusion. I could be a furniture or bed tester......I would reject 95% of all furniture made and they would hate me. Sorry. The worst is sitting at one of the wooden booths at an Outback Restaurant. Those booths win the most uncomfortable award for furniture design. I always get a chair at a table.

I dont hang out on the floor.....or on soft confortable living room furniture. I have some really nice furniture I do not use, including a Lazy Boy with heat and vibration. $1800 and I rarely sit there anymore. Getting up from a floor does require getting on at least one knee. Its not the easiest of moves thats for sure.

Ed

[titaniumed]

Do they do SI fusions pretty regularly with longer lumbar fusions now a days?

I know of 1 SI fusion case testimonial.

Thats 15 years on NSF and around 5 on the SSO British forum. I read and post everyday or try to. Total of probably 25,000 scoliosis and kyphosis members.

I had to lose weight before my surgeries, and did lose a few pounds. After my surgeries, I lost 40# in 40 days on the Percoset weight loss program. Oprah would be cheering! Had lots of problems eating, and recovering from my ileus was a chore that required lots of walking......

Physical Therapy when you have inflamed lumbar nerve roots and spinal stenosis is not easy. Before surgery and after. Walking is super important. Doing short walks multiple times per day, walking until you hit your pain threshold. Walk too much and it will trigger off more pain that sends you back to bed. Its a careful balance.

Ed

[JScoli91]

Ed, just when I started to be able to take my fear of a full fusion now I am second guessing it. It sounds like just being comfortable in any way after a full fusion is impossible unless you are constantly moving or sitting on uncomfortable furniture. This is such a massive decision that I never thought I would have to make and I’m absolutely terrified.

When I was 13 my parents and I were told that having my entire thoracic fused would resolve almost all of my scoliosis forever and after that fusion scoliosis wouldn’t be a part of my future, only a piece of my past. I guess he was wrong. When we found out about my curves progressing back in October and November it took me by surprise and I instantly felt sick. I’m just so scared.

Do I do what is right for me structurally but forever alters my life, my comfort, and how I interact with my children? Or do I sacrifice what is right for me structurally to maintain being able to be there for my kids, sit comfortably in a recliner or on a couch and sleep with a pillow? Why does this have to be so hard...?

[susancook]

Hi there fellow Washingtonian! I troll the forum occasionally now having had my original surgery in 2013 and a few revisions since then. I am 73 and live in Yacolt, WA about 45 minutes north of Portland Oregon. My revisions were done by Dr. Robert Hart, previously in Portland but now at Swedish Hospital in Seattle. He only does spinal deformity surgery. Sounds like you already have your second opinion set up in Richland, but I wanted to throw Dr. Hart's name out in case you want another opinion.

Best of luck of your decision making. I am fused from T1 to sacrum.

Susan

[Pooka1]

When I was 13 my parents and I were told that having my entire thoracic fused would resolve almost all of my scoliosis forever and after that fusion scoliosis wouldn’t be a part of my future, only a piece of my past. I guess he was wrong. When we found out about my curves progressing back in October and November it took me by surprise and I instantly felt sick. I’m just so scared.

I was so sorry to read this.

Did the surgeon ever tell you whether your lumbar was structural or just compensatory?

The fact that the T fusion only corrected your lumbar to within the measurement error (+/- 5*) suggests that the L curve might be structural as far as I know. If so then he never should have told you that you definitely weren't looking at more surgery.

Here are before and after pictures of my two kids. http://www.scoliosis.org/forum/showt...792#post135792

My one daughter (kid 1) had a structural T curve in the high 50's and I think the compensatory L curve was in the low thirties IIRF. When she was hyper-corrected, her lumbar curve practically disappeared. Do you see what I mean?

The other daughter (kid 2) also had a structural T curve and a compensatory L curve. She was left with an L curve because she was not able to be hyper-corrected. She bent her lumbar out almost completely showing that it would have corrected itself had her T curve been hyper-corrected. It reduced itself only enough to match the new smaller fused T curve. She is not out of the woods even though her L curve was compensatory. Years of living with a curve can destroy the lumbar and either structuralize it or just destroy the discs. I am hoping tethering will be an option if she needs more surgery.

So in your case, your T curve was hyper-corrected to 14* but your lumbar did not reduce to match that. It usually does. That's why I think your L curve may have been structural.

So because you were left with a 20* L curve after surgery, it is not shocking that you are having problems though I think them happening this early might be shocking. That's why I think maybe your L curve was structural. We have seen cases on here where a surgeon just won't fuse a structural lumbar in a young person knowing they will need surgery in the future.

You will figure this out. Knowledge is power.

[Pooka1]

The other thing is your T fusion ended pretty high at T12. I am wondering what rule they used to end it there.

Did they do bending films before your surgery?

[JScoli91]

Pooka1, I wish I could find out all the information from my first surgery. It was back in 2003 in Portland where I grew up. I put in a records request in the hospital and because it was so long ago they had to go back into the archives. The only thing they were able to find and send my way was a dictation of the surgical report and a lumbar X-ray taken the day of surgery. Other than that the only information I have is from when I visited the office 5 years after concerned that my lumbar was getting worse and the report says an X-ray done then showed my lumbar at 28 degrees. Up 8 degrees from its correction only 5 years earlier! Though from the doctors notes from that visit he was of the mind set that it was inconsequential.... fast forward to today and my original surgeon has long since retired and the surgeon I followed up with in 2008 is no longer at that hospital...the trail has gone cold

[Pooka1]

I can't fathom a surgeon saying an 8 degree increase in 5 years is inconsequential. This is not my field so I really don't know but that shocks me anyway.

I suspect your lumbar was structural and he just hoped for the best like other surgeons. But if my one kid clearly had a compensatory curve and it was left with about 25 degrees and our surgeon couldn't promise she wouldn't need more surgery, I think your surgeon was not being realistic or that was the state of knowledge then. I have no idea which is true.

[Pooka1]

And as an update on kid 2 who was left with about 25 degrees in her compensatory lumbar a little over 10 years ago, she has zero problems with her back. We don't have recent radiographs because she has no problems but I am guessing the curve is still stable. She did an internship this last summer that was grueling... several-day hikes into the mountains and wading in streams to do fish shocking/counts. She had to carry very heavy gear over miles and miles into remote areas. Many body parts failed (dislocated a shoulder, foot/ankle gave out from over use, etc), but her back NEVER bothered her. This is why I say the surgeon saved her. She can do truly crazy physical activity and her back holds up.

[LindaRacine]

Ed, just when I started to be able to take my fear of a full fusion now I am second guessing it. It sounds like just being comfortable in any way after a full fusion is impossible unless you are constantly moving or sitting on uncomfortable furniture. This is such a massive decision that I never thought I would have to make and I’m absolutely terrified.

It's VERY important to remember that we're all very different. This forum has become pretty idle in the last few years. Prior to that we had hundreds of people responding to messages. Among them are some who have abilities like touching their toes after fusion to the sacrum. We don't mean to scare anyone away from doing the right thing, but I think most of us agree that we should be as open and honest as possible, so that people know what CAN happen.

You might want to look at these threads to get opinions from people who are happy they had surgery and people who are unhappy they had surgery.

http://www.scoliosis.org/forum/showt...-Sticky-Thread
http://www.scoliosis.org/forum/showt...-Sticky-Thread

--Linda

[LindaRacine]

Hi there fellow Washingtonian! I troll the forum occasionally now having had my original surgery in 2013 and a few revisions since then. I am 73 and live in Yacolt, WA about 45 minutes north of Portland Oregon. My revisions were done by Dr. Robert Hart, previously in Portland but now at Swedish Hospital in Seattle. He only does spinal deformity surgery. Sounds like you already have your second opinion set up in Richland, but I wanted to throw Dr. Hart's name out in case you want another opinion.

Best of luck of your decision making. I am fused from T1 to sacrum.

Susan

Just so you know, I'm now in Washington as well. I live in Blaine, just south of Vancouver BC.

--Linda

[JScoli91]

Linda, blaine you say? We live in Sunnyside WA sandwiched right in the middle between yakima and tri-cities in eastern WA. I am probably having my second opinion at UW Spine Clinic with Dr. Bransford soon, are you close enough that we might be able to meet up? I have met only a couple fellow scoliosis brothers and sisters so far and would be interested in meeting another.

[titaniumed]

Ed, just when I started to be able to take my fear of a full fusion now I am second guessing it. It sounds like just being comfortable in any way after a full fusion is impossible unless you are constantly moving or sitting on uncomfortable furniture. This is such a massive decision that I never thought I would have to make and I’m absolutely terrified.

When I was 13 my parents and I were told that having my entire thoracic fused would resolve almost all of my scoliosis forever and after that fusion scoliosis wouldn’t be a part of my future, only a piece of my past. I guess he was wrong. When we found out about my curves progressing back in October and November it took me by surprise and I instantly felt sick. I’m just so scared.

Do I do what is right for me structurally but forever alters my life, my comfort, and how I interact with my children? Or do I sacrifice what is right for me structurally to maintain being able to be there for my kids, sit comfortably in a recliner or on a couch and sleep with a pillow? Why does this have to be so hard...?

This is something that multiple members here have reported happening to them, and is so wrong.... Its going to be a whole lot better if everyone is honest about medical challenges, surgeons and patients need to be honest and state the truth. My surgeon was 100% honest with me and I am thankful. Our bodies are complicated and we have to accept this. You can also have the best surgeon in the world do everything right, and have things go wrong beyond his control. Pseudarthrosis and infections are examples. Pseudarthrosis is a non-union, and we need to fuse or our rods will break at some point. Since you are young, you do have the advantage and probably wont have any of these poblems, but we need to be aware so being misinformed does not happen again.... These are probably the 2 main things we have to worry about most when we do our surgeries. Surgeons will review complications with you, this is done usually right before you go into surgery. You will sign knowledge statement forms on this matter. They cant possibly cover all complications because that's impossible. Most complications are resolvable, but some can take time as some members have experienced here in the past (and present).

I agree with Sharon on leaving that 20 degree Cobb below your fusion mass. Its hard to believe that your pain problems happened so soon at age 26. I am also very sorry this happened. The hook only construct is interesting. You must have been small.

Your situation with those small babies has me worried.....terrible 2's require a lot of chasing, and chasing toddlers is a workout. Some help with your inner circle (Mom, sisters etc) would be hugely beneficial.

Option 1 (L5-S1 solo fusion ALIF) seems as if its just buying time, and you dont know if your pain is coming from your upper lumbar levels or not. You have to assume that it is or will happen at some point. I know I would want to have a surgeon that has done prior stacked ALIF's in the past on scoliosis patients......I dont know if this would be a surgical challenge following with the full ALIF a few years later.

I dont want you to make a pain based decision with the wrong surgeon. I guess thats what I am trying to say. I hope you understand. Timing has to be right.

Hang in there
Ed

[JScoli91]

Ed thank you for your reply. I was 13 when I had my first fusion and I am 28 now. I was told that pregnancy can increase curves, is there any merit to that?

Anyway, so far the surgeon I have talked to locally in my area has been very up front with the risks and potential challenges, etc. He wanted me to have a second opinion to ease my mind, it wasn’t me wanting a second opinion to double check him. I think that speaks to a surgeons merit and character when he can put his personal pride and ego aside thats attached to his opinion and be willing to welcome in the voice of another surgical colleague, don’t you think? If I were to do either surgery locally instead of in Seattle at UW I don’t have a lack of confidence in my surgeon but rather the rural area that we live in and the hospital it would be at and the resources that it has. Is that grounded in a solid concern or makes sense?

I know the one level fusion leaving unfused vertebrae in between the 2 fusions is just a way to buy time, but I just don’t know if in 5-10 years i would want to go through all the risk again of another surgery plus another recovery, all at what would be close to 40 years old. If we did the full fusion now we have a very large support network to help us with the baby and our toddler so we wouldn’t be alone in the fight that’s for sure.

In terms of long term comfort and function, that is what had me taken aback by your previous reply. You had said you can’t stay in one position comfortably for very long? Getting onto or off the floor is extremely difficult? Being on the floor sitting for example is out of the question? Sleeping without a pillow? If that is realistically what is in store for me then I really need to start re thinking things I think. I guess it’s hard to get a good judgement on what basic day to day things will be like after a full fusion. I know everyone is different but if there were a way I could get even some semblance of an idea I think it would help at least a little bit. This might be too personal, but...with a full fusion and without the rotation, how is something as personal as wiping when going to the bathroom? Random question I know but I keep thinking about how I would do everything after a surgery like that and I am fully healed.