twisting limitations with full fusion.

[titaniumed]

Hi Connie

Welcome to the forum!

The huge dilemma, feeling comfortable.......That is one of those things that we need to be, but deep down a very hard thing to stomach.....I don’t think that you should have any worries about your surgeon, it doesn’t get much better. Now, the procedure might have us on edge, that’s for sure.

When I was waiting in the staging area minutes before my anterior, my vascular surgeon came in and asked me if I was nervous. I asked him “who isn’t?'” “I think I should be”....He then said that he had a lot of work to do and inserted the IV into the top of my wrist (in 1.1 seconds) and knocked me out. That installed confidence..... I have a huge scar in the front. (and the back)

I had no choice. There are times that we have no choice. I think that when it gets to this, that worrying doesn’t make sense and we have to be very brave. Maybe the “I think I should be nervous” attitude isn’t the best thing.....switch to the “I think I should be brave” attitude. We are the bravest people on the planet. You know that.

There have been a few here that have had surgeries with really huge curves like you.....and its great to see them posting a great story.

Medical technology has come a LONG, LONG, LONG way since you had your surgery in the early 70’s. I think that the improvements you will have will be substantial, and you should look forward to this.

Always reach for the prize. Never look back.

Ed

[titaniumed]

Me too! I have never met someone that had scoliosis

Well, your just going to have to come up to Lake Tahoe then and meet a scoli. How about mountain biking? The flume trail at Spooner summit is probably the most scenic ride in the world, its about 1500 feet above the lake with outstanding views. 19 miles long. Rent a suspension bike....there is no snow pack right now.

http://www.youtube.com/watch?v=j-aorvWqiq8&feature=fvsr

If you want harder, we can do that. The Downieville downhill is a good one, and longer. Again, extremely scenic.

I know, my scoli meetings are a little different......(smiley face)

Ed

[jrnyc]

someone suggested a video be made, maybe by a surgeon, to show
a patient moving before and after full fusion to sacrum surgery...
i think it is a fantastic idea...
i have yet to meet a full fused scoli in person....
it would help immensely to see someone close up moving, bending, doing ordinary tasks after surgery.....
all my imagining can't help...and having people tell me it is not as bad as i imagine doesn't help either....
need to see it....

don't know why no surgeon has thought of this....

jess...& Sparky

[Confusedmom]

Watch the videos of TiEd skiing or Golfnut playing golf. That should help. I found Naptown78 and LisaB and met them in person before my surgery. And guess what? They both look awesome, and you would never know they were fused! (Oh, and I met Golfnut at Dr Lenke's -- another elegant lady!!!)

[JenniferG]

I "met" a fellow scoli patient on the Australian forum (she's a little younger than me, but same surgeon and similar fusion.) We arranged a meet up and I immediately noticed the familiar way she stood, and sat. I sat opposite her at a table and saw that we sit the same way, straight, and not bothering much with the chair back. We stood up from the table the same way, reaching for our bags the same way. It was so interesting to see someone do things the same way as me!

[Jenna.KB]

I "met" a fellow scoli patient on the Australian forum (she's a little younger than me, but same surgeon and similar fusion.) We arranged a meet up and I immediately noticed the familiar way she stood, and sat. I sat opposite her at a table and saw that we sit the same way, straight, and not bothering much with the chair back. We stood up from the table the same way, reaching for our bags the same way. It was so interesting to see someone do things the same way as me!

Hi Jennifer,

I'm thinking of asking my surgeon to put me in touch with someone who has had surgery that I am waiting for so I can see how they move and look. I keep thinking of new things that I might find difficult on a day to day basis. How quick were you able to shower yourself, shave yourself and moisturise?

Your surgery results are amazing, I hope I'm as lucky.

[jrnyc]

yes, i have watched Ed's videos....
but i havent seen him clean the kitchen or bathtub, or do laundry....hah...
it would help to see someone do ordinary things....
i am very surprised that no surgeon has thought to make such a video....
i think it would go a long way to helping future patients and reducing their fears...

jess

[Confusedmom]

Okay, if no one does it before then, I will make a video of house cleaning next year when I am fused!

[Irina]

Wohoo! I am looking forward to that house cleaning video!

[mabeckoff]

yes, i have watched Ed's videos....
but i havent seen him clean the kitchen or bathtub, or do laundry....hah...
it would help to see someone do ordinary things....
i am very surprised that no surgeon has thought to make such a video....
i think it would go a long way to helping future patients and reducing their fears...

jess

The only thing with a surgeon showing their patients a video might make it look like he was guaranteeing that they would be able to do those activities. No surgeon would do that

[JenniferG]

Hi Jennifer,

I'm thinking of asking my surgeon to put me in touch with someone who has had surgery that I am waiting for so I can see how they move and look. I keep thinking of new things that I might find difficult on a day to day basis. How quick were you able to shower yourself, shave yourself and moisturise?

Your surgery results are amazing, I hope I'm as lucky.

Hi Jenna,

I showered and shampood on the day they removed the various lines. I am not 100% sure, but I think it was the Saturday after my Tuesday surgery. They removed the coverings from my incision really early and left it open, day 3 or 4. Everyone who saw it was amazed. I had no stitches at all, at least on the outside. My surgeon used glue. Shaving was more difficult so I taped a long handled wooden spoon to a razor. I sat on a chair to do it. I don't generally moisturise but if I did, I would probably have found that difficult, if not impossible at least in those early months.

[Jenna.KB]

Hi Jenna,

I showered and shampood on the day they removed the various lines. I am not 100% sure, but I think it was the Saturday after my Tuesday surgery. They removed the coverings from my incision really early and left it open, day 3 or 4. Everyone who saw it was amazed. I had no stitches at all, at least on the outside. My surgeon used glue. Shaving was more difficult so I taped a long handled wooden spoon to a razor. I sat on a chair to do it. I don't generally moisturise but if I did, I would probably have found that difficult, if not impossible at least in those early months.

Thanks.
I remember from previous surgery that I could shower myself pretty quickly after surgery but I'm thinking with a full fusion it might take me a while and I don't think I'm going to be able to do my own bikini and leg waxing anymore :-) The razor taped to a long handles spoon sounds like a plan for legs though.
I have psoriosis, a skin condition so find I need to moisturise daily. I think my mum or boyfriend may have to assist for a while with that then.
Can you still bend at the knees to sit on the floor? some people on the forum say they don't think they will ever be able to sit on the floor again. I know my spine will move as one full piece but I thought after 3 months or so I'd be ok with this. I also tend to sit on the sofa/couch and bend my knees and put them up so my feet sort of sit to the side of my bottom then lean to the left against the arm rest. Do you have problems sitting like this?
I'm thinking a video showing normal house activity would be a good idea. Hope I can get my surgeon to put me in touch with someone who has had a similar fusion so I can maybe meet with them.

[Confusedmom]

Everyone has a different amount of flexibility. I am fused T4-sacrum/pelvis, and I sat on the floor at about 8 weeks post-op. So, I know I will be able to. However, I'm not going to do it again for a while, because after I did it, I was sore and thought it was probably unwise (in terms of helping the fusion process). I regularly lay down flat with my knees up, though. I think that's a pretty normal position, which reduces stress on your back. I suspect that as a 27-year-old, you'll be fairly flexible when all is said and done. Best wishes!

[JenniferG]

[QUOTE=Jenna.KB;139390]
Can you still bend at the knees to sit on the floor? some people on the forum say they don't think they will ever be able to sit on the floor again. I know my spine will move as one full piece but I thought after 3 months or so I'd be ok with this. I also tend to sit on the sofa/couch and bend my knees and put them up so my feet sort of sit to the side of my bottom then lean to the left against the arm rest. Do you have problems sitting like this?
QUOTE]

Yes, I can sit on the floor but it's not comfortable. At first kayaking was uncomfortable for that reason but we were able to purchase a small back rest, just for the lumbar area and it made a world of difference. We used to kayak for 4-5 hours pre-op but these days, my tailbone aches after maybe 1.5-2 hours so it has shortened our kayaking trips somewhat.

I haven't tried sitting the way you describe but I think if you have something to lean on, left, right or back, this is definitely doable.

[naptown78]

yes, i have watched Ed's videos....
but i havent seen him clean the kitchen or bathtub, or do laundry....hah...
it would help to see someone do ordinary things....
i am very surprised that no surgeon has thought to make such a video....
i think it would go a long way to helping future patients and reducing their fears...

jess

Jess,

Hah!

I did all of these things over the weekend...cleaned the kitchen, got down on my knees and scrubbed the shower pan, and did laundry with my top loading washing machine...plus vaccumed the baseboards, swept the front porch, went bike-riding with my grandson, and also went grocery shopping! All with fusion from T4 to sacrum and pelvic bolts, and 2 revisions tossed in. You can do anything you put your mind to...Really!