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

[Terrik]

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]

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]

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]

Thank you both - just having someone say "I know how you feel"

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]

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]

Thanks Doreen

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]

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]

Terri

I did all of my surgeries alone....and can understand your concern. One of the things that’s 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 shouldn’t be a problem, you will learn to squat down without bending to accomplish this.

Keep reading and posting.
Welcome
Ed

[mabeckoff]

I feel for you. You will learn to do things differently. If you need advice, just ask

Melissa

[LindaRacine]

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]

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]

What a group of great human beings - thanks for including me in the "club"

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]

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]

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]

Hi Terri,

I will learn how to dance with a new spirit…

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