New To Forum - Revision needed?

[JScoli91]

I trust him very much, especially the hospital and the experience it has and the accreditation for being one of the best if not THE best in our area. I guess after making the decision to commit to having this done I am still confident I am making the right decision but I am also very terrified. I guess my biggest fear is that I would have this fusion done only to find out afterwards at some point that the pain that I am feeling now, before surgery, still persist after surgery and I am left asking, "What did I do that for?" and not have the ability to take it all back. I guess its nerves and anxiety now that make me keep thinking, "Man I sure hope the costs and what I am giving up in terms of flexibility and range of motion, sure are worth it after its all said and done."

Does any of that make sense?

[titaniumed]

Of course.... We are all terrified, its the hardest thing we ever have to do in our lives especially with the possible complications that can happen.

If your going to go in and do this, you just cant think about complications. There are a whole host of things that can go wrong, which ones do you worry about? You have to put the horse blinders on, stare straight ahead, and concentrate on the goal which is healing and being pain free. Neuropathic pain is devastating and disruptive. Sometimes there is no alternative but invasive surgery. I didnt have a choice, and I dont think you do either, so that leaves timing. Now or later. You cant be lifting anything for a long time. I walked on eggshells for around 9 months taking it real easy because I didnt want to disrupt the healing process. If you disturb your fusion, its like having a cut on your finger and hitting it with a hammer. It will eventually heal, but will take longer. We only have one chance to do these surgeries so you want to make sure everything goes right. No lifting, no falls, no car accidents, just a slow smooth perfect recovery. You wont speed your recovery up by trying to walk a mile, all you so is inflame your soft tissues. These surgeries teach patience. You will do a lot of walks. Short walks, multiple times per day to distribute blood and its nutrients into healing zones. Triggering pain send us back to bed, and on meds we sleep like cats. Undisturbed sleep becomes extremely valuable......and you need 8 hours of sleep, so your going to be battling pain and be really tired all the time.

I dont have any problems with lack of flexibility. Its adaptable. It makes no sense fighting this as we dont have a choice. You will figure everything out. I started my shoe tying stretches at around 8 months using a stool. It took about a month of hanging my arms down. Not pulling because you can trigger a soft tissue injury. NSAID's are a must to have on standby for this, but only after your surgeon gives you permission "after" you are fused. NSAID's can inhibit the fusion process, but are wonderful and necessary as a fused scoliosis patient.

Your young so you do have the advantage when it comes to healing.....I used hot water soaks for pain. I would not have made it without my hot soaks. 106 degrees F. Measure it with a pool thermometer. The tub needs to be large enough to stretch out and float. A regular old school bathtub will not work. It has to be an oversized tub.

I cant type anymore....too tired. Tomorrow is another day...

What did your surgeon say about your SI joints?

Ed

[JScoli91]

Ed your replies are truly invaluable and are a real confidence boost, truly. Thank you so much. This surgeon mentioned fusing my SI joints as part of the procedure but didn’t say anything more about them besides that, unlike the first surgeon we spoke to who said he sees degenerative arthritis in both sides but more so in the right side. The SI screws can’t ever come loose can they?

Your right Ed, I don’t have a choice it’s only a matter of time. I thought in the beginning I was insane considering this revision at only 29, almost 30 but then I realized that even though I am young in comparison to the average age of a patient having this done, I have my age on my side and will hopefully heal faster and get back to “normal” faster, whatever that looks like.

What I did find interesting is that this surgeon said that this revision and immobilization of the lumbar will not have negative/degenerative impacts on my hips or my shoulders or neck necessarily. Do you think this is correct? To me it seems once you start immobilizing areas from movement and flexibility the pressures and forces to those areas are not absorbed but instead differed and relayed to the next joint or area. Right? I guess what I’m getting at is, is it logical to surmise that the younger you have this revision done the younger you will be to possibly need hip or other joint repair/replacement?

[jackieg412]

Good morning. I'm just going to address one of your concerns and that is about your other joints and fusion. I have been told many times that the full spinal fusion leads to other joints being impacted. In my case that has proved to be true. But so far the areas are managed with exercise heat and injections. I don't know how to compare between fused patients and non fused patients as far as impact on joints.
As Ed said you can just do your best.

[titaniumed]

Before I forget, UW has videos. Scoliosis videos. You might find these interesting since you will be operated on there.
https://www.youtube.com/user/UWTV/se...uery=scoliosis

Funny, in one of the videos, the camerman pans around and my surgeon is sitting in the audience.

Glad you appreciate the posts. I do this because many years ago when I was a kid, there was nothing. No internet. Just 2 cans and a wire. Ha ha I thought I was the only one with scoliosis 45 years ago. To face major deformity surgery is alone is daunting.

I do try to blow out a lot of information as fast as possible and its usually when I am tired. In the mornings I trade online so pretty busy when things are running. Like right now the markets are on fire.

When it comes to wearing out joints, I think I have made a good attempt in skiing and doing hundreds of thousands of jumps off high cliffs. But I still have my hips and knees and ankles. They can hurt pretty bad sometimes, but I have not required any replacements. (Yet)

There is ASD Adjacent level disease or Adjacement segment disease which can happen....do a google search for info. Having trouble with translating to English from Spanish and all tecnical literature is mostly done in English. I have to translate just about everything down here.

Full fusion can affect ones gate. Sometimes, when I have a soft tissue problem and in pain, I can walk like a bulldozer on large rocks. In other words, not smooth. When things are good, you cant tell I am fused. If your gate is affected severly on a permanent basis, I would imagine that other joints will take a beating.

But this doesnt necessarily mean replacement.....As usual, there is no specific answer.

Ed