What are bending limitations post-op?

[jChris]

Jess, I have no experience in counseling , but I am facing a t-2 to pelvis fusion on 10/25. I will be happy to share my experiences with you post op. I just went through a 3 level fusion in the neck which has limited my ability to turn my neck, but should make my scoli surgery safer because of my significant stenosis.

The restrictions on the neck are far less than what I will face with the scoli surgery. Like Susie B, I have used a cup to brush my teeth and that works great.

I'll try to post asap after my scoli surgery.

[jChris]

Steph, you will be included as well!!

[jrnyc]

hi Chris
that would be great! i can't tell you how much i appreciate your offer...
and all on forum who have offered before...

i suspect that in this particular case, there isn't anything a professional counselor could offer that a peer couldn't do...because it is often hard to counsel those with medical experiences that one has not experienced oneself...i know some social workers who specialize in cancer patients and their families...
but with scoliosis surgery, a counselor could do little besides listen, reflect back, and discuss future fears/limitations and their expected impact on the patient's life...
all of which a patient who had the surgery could do for a peer...

thanks again...i will take you up on it, after you have healed and are up to talking!
i hope you are doing well after your first round of surgery....

best wishes for the next round...a smooth procedure and uneventful recovery!
jess

[Ballet Mom]

I guess I should just make clear that I didn't mean that a specific counselor was counseling those patients. I had assumed that it was the surgeon who had counseled the patient significantly as to what to expect after the surgery.

I'm sure if you can find patients with the same fusion surgery, they could give you a very good idea of what to expect in terms of flexibility or what they are able to do.

[jrnyc]

OK...that makes more sense...

it has been my personal experience that surgeons tend to gloss over the future limitations...or at the very least to minimize them....maybe because they do such a large number of these surgeries...
but it does not help me at all...does not reassure me...does not make me feel any better or clear about my post surgery future...
general statements of "well, you'll find ways to do things differently," or "you will discover new ways," or "you will bend from the hips,"...etc...are a little too general for me...
a demonstration of some kind would be a lot more helpful!

jess

[Confusedmom]

Jess,

I agree--some surgeons do seem to gloss things over a bit. My main doctor has made it seem like 3 months and you're back to yourself again. Sure, that does seem to happen for a lucky few. But it seems like more often than not there are other complications that make recovery, true recovery, a lot longer than that.

Also, I'm not sure who wrote this, but I have the impression it's not uncommon to fuse from the high Ts to the pelvis. Dr. Bridwell called it "routine," but maybe that's just routine for him.

Evelyn

[jrnyc]

hi Ev
mmmm...i dont know...i was supposed to have T4 to pelvis, but once one surgeon i consulted with agreed to change it to T11-pelvis, all the others after that agreed with him......(whenever i am ready, it is a "go")

i really think the point is to fuse as little as possible while getting the best stability possible...if that means a longer fusion, then it does...but i do think surgeons dont "routinely" do long fusions if avoidabl

best regards...this is a tough decision, i know!
jess

[Mojo's Mom]

Having some experience in short term counseling, I agree that "counseling" is not likely to be much help prior to surgery (although it might be needed after!), but nothing could be better than talking to patients who have already been where we are going.

Some surgeons may gloss over the ramifications of a fused spine; my surgeon (who is not experienced enough to do THE surgery) commented that he imagined you couldn't do very much at all with the whole spine fused. "I imagine you probably can't put on shoes, things like that," was about what he said. very negative. I was so depressed at the time, hearing that my curves were progressing, that I didn't stop to think that I already did know a lot about what it's like to have little spine movement, because of my years in the Milwaukee brace. I already knew more than he did!

I will welcome everyone's input as I move forward.

Jennifer, I nearly cried at your comment about the grandchildren. My biggest issue with the surgery I need is that I am Child Care Central for my darling 3 year old granddaughter, the light of my life, who lives with us and will for the foreseeable (along with her mother). I am hoping that if I wait until she is 4, she will be able to understand the limits that "Nan" will have -- she is just too young now, and always insisting on being picked up. I am so very sad that this surgery will come between me and my granddaughter for an extended period, and it will be terribly hard to lose that special relationship we have now, even if only for a few months. I know I won't really "lose" her, but the minute to minute care and playtime that is my life with her now will be dramatically changed when the time comes for my surgery.

[Back-out]

Stephanie, it sounds like a heartbreaking loss (temporary or not) - of your physical relationship with your little granddaughter. I do think you are right, though = that the extra year will make a dramatic difference in her ability to understand your limitations. Might even be worth talking to a child psychologist about the best time and way to approach her - not just re her age but her as an individual.

I remember reading about a tragically disabled mother here in town. She became a quadruple amputee after developing a widely disseminated e-coli infection and her life was only saved by the amputations. Naturally, even with prostheses she is permanently dependent on her family - thank God, loving and supportive.

She has three young children and it was amazing to see how well they adjusted to their mother's losses - naturally, they were enormously affected. Having stories read to them, sharing their school day, having their mother present at all their important events, and so on - this all seems to be more important to them than the rough and tumble and even the lighter side of her physical care (Braiding their hair etc.). It seems the older they get, the more they understand and the more they themselves initiate physical contact to help them feel close.

Perhaps one of the disadvantages we have, is that our disability is much more invisible. Once children are old enough to imagine the hidden handicap, I think they are NOT emotionally harmed. Sure, they miss the same kind of snuggling and play, but the worse loss - feeling rejected - does not even begin to cross their minds and does NOT hurt them! It's very important to know that the children are NOT damaged in the most important ways!

Best of luck to you crossing this major hurdle. Try to comfort yourself realizing at least. how much will remain between you and your little girl....Everything truly important! (Remembering too Christopher Reeve's whose Still Me I also read.)

[jrnyc]

heySteph
don't know that i ever met a child who couldn't understand when someone "has a boo boo"...and yours will keep you from lifting her for a while...
it will, therefore, be a BIG boo boo!

i do believe that she will be fine...that playing with her from whatever position is manageable in the beginning will be enough for her, once she gets it that grandma has to stay still to help her injury heal...it will then be extra special when you can take walks with her...and read to her...and play with her in a more active way! maybe a special grandma doll is in order....to practice with...?

i worked with kids all my adult life...they never fail to amaze me...they can be very understanding, and gentle, when they understand what is required...

jess

[JenniferG]

Stephanie, you will be amazed at how well your grandaughter will handle the situation. My bet is, she'll be understanding, kind and caring.

We'd always had a very affectionate relationship, lots of cuddles, piggy-back rides, etc. but they visited me in hospital and they were told what had happened and how it will be different for their Nanna for a while. They were so understanding and caring and wanted to help. If I was lying down, they'd lie beside me and rub my arm! Funny but so sweet. I still got my cuddles. They were 4, 3 and 9 months at that stage. It was the youngest who missed out. I was unable to care for her due to the lifting, but it's made no difference, she's just as loving as her sisters now, at age 2.5.

I remember when they first saw my xrays and they were explained to them, they then wanted to take them to daycare for show and tell. We printed them out and my new rods were proudly displayed to a class full of 3 and 4 year olds!

It's been a long time since I needed anyone to save me from bending, but the kids are not taking any chances.

[debbei]

This forum and my close friends were my therapy/counceling. I spend many nights awake scanning the forum and asking questions.

Stephanie,
as long as you're not solely responsible for your granddaughter's care for a while (I would say at least 2-3 months), I bet she'll understand. My kids were all older as my youngest was 9 at the time, but I do remember spending time with her watching TV or movies n my bed. Of course lots of times I'd fall asleep during the watching due to the narcotics, but it was time she could spend with me--awake or not.