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View Full Version : Surgery recommended - waiting a year - but so nervous about it all and how to prepare



Terrik
08-26-2011, 09:43 AM
Thank you for this Forum. Reading these posts have helped me in understanding this daunting decision regarding surgery. I had scoliosis all my life without any problems. In 1998 I had a pinched nerve in my neck and the xrays showed a progression of a 40 degree cobb and I spent 2 years in p/t and then stopped going. The past two years I have had pain in lower back. I saw Dr. B at HSS (great man) and he definitely recommends surgery - fusing most of my spine (leaving the lower portion (If I can remember correctly). I said, no - I want to wait a year. I was so freaked I couldn't breathe. I live alone, have no family living and have 2 beloved cats (14 and 15 years old) to take care. And yes, I have friends but how much can you depend?

I have read so much on the web, and I think it has made me more fearful than ever. I would appreciate any feedback from those of you who have had the surgery regarding the recovery and your mobility. Is it true you can't bend for six months post op? How does one function in daily living without being able to pick something up or feed my cats? Is it also true that lifting is very limited? How long, and how much weight? Can you lift a container of milk? I would like to believe I can return to work after 3 months, but I fear that will not be the case. Any thoughts on recovery time, etc. I know it is different for each person.

Also, I have osteopenia and Dr. B feels I shouldn't wait until my bones are too thin. At present I am 53 years old, the curves are 50 degrees right scoliosis bet. T-5 & T-12, & 49 degree of left scoliosis between T12-L4. There are 55 degrees of thoracic kyphosis & 58 degrees of lumbar lordosis. Am I kidding myself to wait? Thank you for any insight you can give me. Bless you all.

Doreen1
08-26-2011, 09:52 AM
Hi Terri,

I understand your fear. As you continue to educate yourself by reading and asking questions, you will develop a comfort level. This forum has been especially helpful for me too. I recently had a surgery cancelled because of having osteoponia (T score -2.4, Z score -2.0). I spent a day in shock absorbing this info and moved to my next decision which was to schedule a second opinion with another top scoliosis surgeon, Dr. Lenke (Dr. Boachie is top notch too!). Do you happen to know what your bone density scores are for your osteopenia?

For me, fear comes out of not knowing which is why I always press with questions, what are my options, etc. You'll receive some great advice from forum friends here. Do not hesitate to ask for help from friends. They will completely understand your need when the time comes for surgery. In the past, I didn't want to bother friends/family, but now I'm reaching out for help and it is such a relief. You are certainly not alone in your journey.

Warmly,
Doreen

patty22
08-26-2011, 10:57 AM
I have read so much on the web, and I think it has made me more fearful than ever. I would appreciate any feedback from those of you who have had the surgery regarding the recovery and your mobility. I would like to believe I can return to work after 3 months, but I fear that will not be the case. Any thoughts on recovery time, etc. I know it is different for each person.

Hi terrik,

You sound just like me. I'm very recent to this forum and I started posting questions because I was so scared about everything that I read on the internet. Information on the internet can be a blessing and a curse. I've read everything from you'll be permanently disabled after this surgery to other things saying that some "institute" can reduce your curves without surgery. But then I talk to people who've actually had the surgery and the vast majority of them are fine. I think too that the people who usually post on the internet have an ongoing problem which does not accurately represent all the people who've had this surgery (who are probably too busy getting on with their lives!). Then there are people on this forum who are kind enough to share their experiences to help others.

My husband has recently given me a "no internet research" rule about scoliosis (since I've already done so much!!) until I talk to the first doctor again and then talk our second opinion doctor. You can literally worry yourself so much about something that would probably never happen to you.

That said, I just wanted to say you are not alone and many of the people on this forum are very knowledgable and helpful in giving you their opinions of what they went through. We all have to take it one day at a time. I always try to remind myself that things could be worse - scoliosis, though a very crappy condition, is not brain cancer, and most can still live normal lives pre and post surgery.

Take care and good luck with your decisions.

Terrik
08-26-2011, 11:51 AM
I agree - there is alot of info on the web, and not all good as reliable sources. I look forward to hearing from others who have had the surgery and can address some of my fears on mobility afterward, bending - how long not to, lifting things, etc. I do see this as a time when learning to "ask" and be gracious "to receive" will be big lessons. I am the caregiver type, so being in a position of needed care is something new.

I realize no matter how much I am afraid of the surgery, my curves are not good and the osteopenia will only get worse with time.

My last bone density - 12/2010 was not great. Lumbar Spine - T score is -2.0. And L1 - L3 were excluded from the analysis due to the scoli. I am due for another bone density in December and if it is worse, will definitely speak to Dr. B about maybe consulting with a bone specialist to build the bone somehow prior to surgery (since I am thinking of end of 2012 for the surgery).

What happens if your bones are not strong enough for the surgery? You just can't have it? And what happens if you get osteoporosis later in life, do you know if it affects the fused spine?

Thank you both for your thoughts and words. I am so happy to be part of this Forum.

Doreen1
08-26-2011, 12:50 PM
If you do a search for "chart" in the box located at the upper right side of your screen and click on the first post that pops up by Golfnut, there is a link with a lot of great information about resuming activities and estimated timelines. Did Boachie indicate how long your fusion will be?

Warmly,
Doreen

Terrik
08-26-2011, 12:54 PM
Actually, he said so much, I am amazed I remembered half of it...:) He wants to do most of the spine, but feels he will not need to go to the sacrum at this time. He said, that might be needed later on down the road, and at that point if would be a relatively easy surgery.

I will check out the recommendation you just posted for info.

Thanks again.

Karen Ocker
08-26-2011, 04:28 PM
Dr. B did my surgery and I got my life back. My surgery was much more complicated than the one prescribed for you. I was fused to the sacrum.

I can: hike the Alps, clean ovens, shampoo carpets, tie my shoes, shave my legs and worked for 8 years-after this major surgery- as a nurse-anesthetist- standing all day. Just retired last year. I am 69 and pain free.

titaniumed
08-26-2011, 09:21 PM
Terri

I did all of my surgeries alone....and can understand your concern. One of the things thatís pretty important is the training that you should do, the education about the logistics of scoliosis surgery and recovery to your inner circle. After you have them trained, you will be surprised how many people will show up to help....have faith, they will come.

One of the things we go in our recoveries is learning to adapt. There are many examples. Feeding your cats for example shouldnít be a problem, you will learn to squat down without bending to accomplish this.

Keep reading and posting.
Welcome
Ed

mabeckoff
08-26-2011, 09:31 PM
I feel for you. You will learn to do things differently. If you need advice, just ask

Melissa

LindaRacine
08-26-2011, 10:37 PM
Hi...

I agree with everyone. You will adapt. I took care of myself after my revision surgery in January, and didn't have a problem. A grabber tool will be your closest friend for awhile. As far as feeding the cats, I remember reading about someone modifying her pet food dishes by drilling holes in the lips and attaching strings that allowed her to pick up dishes without having to bend down. And, another friend got a giant litter box, and now uses a popper scooper to clean it.

It seems that every doctor has a different set of recovery rules. My doctor is very liberal about recovery, and after 6 weeks, he essentially set me free to do almost anything I wanted.

While I'm definitely stiffer than "normal" people, it's not as bad as you'd imagine.

Regards,
Linda

mabeckoff
08-26-2011, 10:51 PM
About feeding the cats, I now use a dustpan that has a handle. I lift the dustpan with the cat bowl on it and clean it out and then fill it. It works great

Melissa

Terrik
08-27-2011, 09:28 AM
Just a big huge Thank You for some of your advice and encouragement. I will continue to read and learn and hopefully one day be able to give back my advice and suggestions post-surgery.

Blessings to you all,

Terri

golfnut
08-27-2011, 09:21 PM
Terri,
Melissa's suggestion about the long handled dust pan for feeding your cats is great. I have two dogs and tried to use two grabbers to raise and lower their food and water dishes, but I think the dustpan would work better. I taped a disposable razor to a long handle from a back scratcher and it worked great for shaving my legs. I remember being mortified about the no bend rule for 4 months, but it was not as bad as I had expected. After the first month or so, life started gradually returning to normal. You will find out who your best friends are, as well. I was surprised at some people who came through for me by bringing food, walking the dogs, taking me to lunch, etc., because I sure didn't expect it.

judyat60
08-29-2011, 11:44 AM
Hi Terri,
As one still on 'this side' of surgery (I'm scheduled with Dr. B for mid-October) I freshly understand the shock we undergo upon hearing just how bad our scoliosis is and the need for this type of surgery. I only found out in January how serious my scoliosis was--and now understand what much of what I've been feeling is attributed to.

For me, hearing I needed this extensive surgery was almost like grieving: shock, denial, lots of crying, fear and then acceptance. I was lucky to have friend/family who kept a reality check on me for the need for surgery. I had to finally stop thinking of what it will do TO me and focus on what it will do FOR me. I need to remind myself of that at times even now.

I am surprised at how much I am trusting Boachie, I generally don't trust drs and hate hospitals to almost an unreasonable degree. But at 60 yrs old (the magic number it seems when age begins to matter), I need to get my life in control to move forward. For me, waiting with pain (not huge amounts all the time, but it does hinder activities) to do it in 2-3 yrs while getting older, risking that other health issues might pop up impeding healing, didn't make sense and I am forging forward…although still nervous/fearful I am resolved.

I will learn how to dance with a new spirit…

welcome to this wonderful forum and good luck in your research and reconciliations for whatever direction you choose,
Judy

jeneemohler
08-29-2011, 01:06 PM
Hi Terri,

I will learn how to dance with a new spiritÖ



I LOVE IT! This alone tells me that you will do great.

Terrik
08-29-2011, 02:42 PM
What a powerful line that one is! I definitely need to change the focus. I am spending way too much time thinking of all the ways my life will change post surgery (and not looking at the cup half full) and the what ifs that can happen. e.g. - Will I only need one surgery? Will it work?, etc., etc.

You sure have the right attitude and it will help you in your healing in every way.

jeneemohler
08-29-2011, 07:12 PM
Another quick tip...keep your legs in shape for the upcoming surgery!

You will do lots of squatting since you are unable to bend over for awhile. Once you are stronger, it is much easier to squat and have your hands free to grab. You may not be able to bend to pick up that cat dish at first, but you can eventually squat. I was amazed at how hard that was to do after surgery... And going into it, I had really strong quads from lifting freight every day with my legs instead of my back. After surgery, I had to pull myself up with the counter for quite awhile.... Until then, you and your grabber will become very good friends!

And my life hasn't changed so much...except for the better! I still do pretty much what I want to do, minus the pre-surgery pain!

ADMoul
08-29-2011, 08:05 PM
"I will learn how to dance with a new spirit" should be on a poster. Could be the mission statement for this forum! Anyway, I just wanted to give you some more words of hope and encouragement. I am fused to the sacrum and I truly feel as though as I have been given a new lease on life. To me, this last year and a half of living without pain has more than made up for those rough early weeks. It was the scariest thing I have ever done, but I am so glad I had the courage to do it (and that I had people on this forum supporting me the whole time.) Yes, I am having a "screw removed" next week so there is a little bit of that "deja vu surgery" thing going on, but even that has not been a major issue. I am a changed person in a lot of ways because of this surgery and it's all been for the good.
When you're in recovery, you learn to ask people for help, you find new ways to do things and you slow down and see life from a whole new perspective. (One suggestion--don't try to carry a pet's full water bowl with grabbers!:) )
Try to learn as much as you can, do your research, talk to people on the forum, get opinions from the best Dr.'s you can find and try not to let some of the scary internet stuff get to you.
Wishing you the best in your journey!

titaniumed
08-29-2011, 08:05 PM
Terri
Even though squatting seems to be something we master after our surgeries, and all this talk about dealing with cats, I remember someone who fed her cats on top of the fridge. She did this due to her dog who was scarfing the cat food. The cats will adapt and jump up and down, you would be surprised what they do and where they go when you are not home.(Bad kitties!)

Judy
Yes, having a good attitude about this is mandatory. Knowing what could happen is also important....
With all the pain, you always think about the future, a positive future, looking forward and never looking backwards. There are hills to climb, the hills of recovery, but you get over them and become quite a seasoned climber. After you do your surgery, you will understand what Iím saying.

Like Jenee said, the grabberís are valuable. Donít buy them, your insurance company will do that. BBQ tongs and long salad tongs work well also.

Ed

Doreen1
08-30-2011, 06:04 AM
(One suggestion--don't try to carry a pet's full water bowl with grabbers!:) )


A small watering can works great for filling water bowls.

Warmly,
Doreen