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Jo 71-09
03-13-2009, 08:57 PM
I've been reading posts here for the last couple of months, but I've been too nervous to write my own. ...I don't know, maybe it's because that makes my decision to have surgery too real. My surgery, with Dr Rand in Boston, is scheduled for April 28.

I was diagnosed when I was 12 with a 46 degree lumbar and a 26 degree thorasic curve with rotation between. Surgery was suggested at the time, but we chose the other option which was traction and casting for six weeks to stretch me, followed by six years in a Milwalkee brace which I wore faithfully for 23 hours a day.

Doctors informed us that surgery was probably in my future, and here I am thirty something years later. My pain has gradually increased over the years and last summer it became very intense. My lumbar curve is now 55 degrees (not too drastic an increase over all those years), but I slipped two discs and the rotation is worse as well. Physical therapy, acupuncture, and cortizone shots have given me little relief. I still can't do much yoga or walking or even hanging on my bar, which I have always used to control my scoli pain. I'm missing more days at work this year than ever before and my general quality of life is pretty compromised.

Still, every day I wonder if I've made the right decision. This surgery is just so invasive, and the recovery so long. I worry about how I'll feel months and years after surgery with such limited flexibiliy since most of my damage in in the lumbar region. Dr Rand feels that surgery will help with the pain and I trust his judgement. He comes highly recommended and I've heard so many great things about him, so I'm going with it.

I'm introducing myself to you today because this surgery is all I think about and pretty much all I talk about. My family and especially my husband is very supportive, but all of you know what it feels like first hand. It's both helpful and frightening to read your posts, and best of all, it's honest. That's what I need right now. Thanks for listening.

Jo

Doodles
03-13-2009, 10:44 PM
Jo--
Welcome to the forum! I understand exactly where you're coming from. Mine is 2 weeks from Monday and all you have said is true for me too. Your last paragraph states it perfectly: reading the posts is helpful, frightening, and honest. What we need to get us ready. I know there are many who have been there who will continue to encourage us who are still on our way. Very best luck to you. Janet

doodie
03-13-2009, 10:54 PM
Let me be the first to welcome you to the forum Jo! It sounds like from your post that you have decided surgery is in your future, just not when. I was really freaked out about the prospect of surgery - it IS scary...I knew I probably would have it some time in the future but didn't know when that time would be. When that time comes for you, you'll know. In the meantime just keep doing what you're doing - getting all the information you can about scoliosis and the types of surgeries there are. Obsessing about it is probably just part of the process. The hardest part for me was deciding this is the time to do it. Once I made that decision everything has seemed to fall into place and I feel good about everything so far. Ask me again next week and I'm sure I'll give you a different opinion but generally I feel really confident and mentally ready.
I'm glad you posted and hope you feel free to ask any questions you might have. This forum is just the best place to get support and answers or suggestions for about anything. (even non-scoli topics!)
Take care of yourself now!

titaniumed
03-14-2009, 12:00 AM
Hi Jo

Welcome. Yes, scoliosis surgery can be over consuming especially in the last few weeks leading into surgery. Its scary stuff, after its all done and over, you think to yourself, "I did it". Its a major accomplishment.

Do you know which levels Dr Rand intends to fuse? Will it be a posterior only procedure?

Ed

Nancy Joy
03-14-2009, 12:04 AM
Hi Jo~~
I am glad you have posted and sorry you had a need too. I just always feel that way but you have come to a great place for empathy and support. Decision making can be so difficult. Ask any questions you want- we are all here for the same reasons!

Louisse
03-14-2009, 05:23 AM
Hi Jo
and Welcome to the forum - like Ed said, it can be 'all consuming' this Scoliosis thing - but you have come to a good place to get info and support - people who post here on the whole, I think, are very honest and sympathetic.
Wishing you all the best...
Louisse

JoAnn5
03-14-2009, 09:16 AM
Welcome, Jo! I agree with what the others have said. This is one of the best places you can come to voice your concerns and be certain that they will be met with compassion and understanding.

I'm sorry that you have been in pain and are facing surgery. Dr. Rand is one of the best in the country, I've heard. Many satisified customers :). This is a big deal and a scary one, so it's very normal to be anxious about it. We will be here to listen, lend our shoulders and our prayers.

JoAnn...... p.s. Like your name ;)

Jo 71-09
03-14-2009, 09:57 AM
Thanks everyone for welcoming me. I do plan to keep the surgery date of April 28. It's just hard to talk about it.

Ed, I do not know the exact start and stop levels yet, but Dr Rand said it will be "all the way" (to the sacrum i'm assuming) because most of my pain is very low in the lumbar area and the slipped discs are at L2 and L3, with degeneratiion to L5. He is planning to go "only as high in the thorasic area as he needs to", in order to correct my rib hump and rotation issues. I will get the specifics on the surgery on April 10 when he sees the latest bend xrays. Dr Rand did say that it will be posterior and if all goes according to plan it should be just one surgery.

Maybe that's why I sound unsure. I need the specifics, which I won't have until very near the surgery date. The unknowns leave me feeling pretty anxious.

The biggest thing that makes me anxious and hesitant, (besides the obvious) may sound silly to some, but it's huge to me. I am worried about the affect all of this will have on my relationship with my adorable little granddaughter. She's just under two years old and to date I've been a very hands-on grandmother, even though it mean lots of extra pain in the days following our visits. She's down at a level that isn't, and will not be easy for me to reach for some time and I know she won't understand my limitations. Dr Rand said that what causes me pain now in our interactions could cause damage to the fusion later.

I don't feel I should put surgery off for this reason because life as it is right now is not acceptable long term and there is never a perfect time to do something like this. How do any of you who have been through surgery interact with younger children. I'm sure I'm not alone in this.

Also, as suggested by some of you, I am continuing to educate myself on scoli and spinal fusion. I've visited web sites, read the book by David Walpert a couple of times, as well as the Prepare for surgery book and cd by Peggy Huddleston.

Thanks again for your support.
Jo

loves to skate
03-14-2009, 11:31 AM
Hi Jo,

You definitely have come to the right place and we welcome you. I didn't find this forum until I was three months post-op. You already sound more prepared that I was. You have a great surgeon. Dr. Rand is also a great person. I only found out about the Peggy Huddleston CD a week before my surgery and it did help a lot with the anxiety. I basically put my faith and trust in God that He had found the right Doctor for me and that I would come through the surgery OK. And I did!:)

Your granddaughter is two years old. She will understand more than you think. You won't be able to pick her up, but once you are recovered enough that you won't have to be on strong pain meds, you can sit on a firm couch and she will be able to crawl up on your lap. That alone will help you heal faster than anything.

Takes care, Sally

Singer
03-14-2009, 11:44 AM
Jo,

My daughter was 11 when I had the surgery but I totally understand what you're saying about your granddaughter. Remember, kids live in the present, and they are endlessly forgiving, accepting and adaptable. They get used to changes much more quickly than we do, and I think even a two-year old will "get" the fact that you can't pick her up or get down on the floor or run around with her for a long while. You will still be YOU -- and that was the thing that most worried my own daughter before the surgery, and was the biggest relief to her after the surgery. At this point she is much more accpeting of my limitations than I am.

debbei
03-14-2009, 11:51 AM
Jo,

I think it's all I though or talked about for months prior to my surgery. It's perfectly natural to be worried. I'm glad you finally posted. I'm one of those people who might have shared a little too much info sometimes ;) but when something worries me I have to get it out.

Ask any questions you have and I'm sure someone here will be able to give you answers. These folks have seen it all and ar the most amazing group ever. They have helped me so much. I was a basket-case when I came on the scene here, and they helped me pull myself together before surgery. I wasn't going in blind, and that really helped.

Have you read the 2 books that are mentioned here frequently? I read through them in no time, and the info there was great. I'd recommend reading both books before your pre-op appointment so that you can ask your Dr. any questions that you think of after reading them.

http://www.amazon.com/Scoliosis-Sourcebook-Michael-Neuwirth/dp/0737303212/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1237049261&sr=8-1

http://www.amazon.com/s/ref=nb_ss_b_0_17?url=search-alias%3Dstripbooks&field-keywords=scoliosis+surgery+the+definitive+patient% 27s+reference+3rd+edition&sprefix=scoliosis+surgery

titaniumed
03-15-2009, 12:52 PM
Jo

You mention that its hard to talk about your scoliosis surgery, and yes there are people that have troubles with releasing. Its something that is necessary for ones "sanity" being able to talk about these things. These things that nobody knows about, or cares about, that only someone with scoliosis would be able to fully understand. Its been great stumbling across this forum after all the grey dark years of the past, where it just seemed that there was no one else with the same afflictions.Well, guess what? were here! You will also need to build your inner support team with the people that surround you, as you go through with this.

Having a positive attitude and realizing that soon you will turn the page and enter the next "chapter of the book" of life is crucial to your success. I like to use this analogy since we go through so many chapters in life. You will enter the chapter that covers your new and difficult change of healing and recovery. Finally!! a resolution to the matter, this thing you have been dealing with all these years.

Its a difficult mountain climb, with the very top going straight up that sheer wall of rock, and after you are operated on, you have to climb back down that mountain.

So mountain climber, are you prepared and ready to climb the wall of rock? Don't climb that mountain unprepared.

You are beyond the brace wearers that are in the foothills now. Its time to start climbing. Don't worry about falling, I guess some of us fall sometimes, were in the revision section of the forum, but we all keep climbing that mountain of hope.

Ed

LynnMarie74
03-15-2009, 03:51 PM
Hi Jo....we're all happy you posted & we were all once in your shoes as well. I, like Debbe, have posted a bunch of stuff...anything from worries prior to my surgery, questions, what if's, my post op questions, worries, etc. If youre looking for real, open & honest answers, you've come to the right place! :)

Im 2 months post op and I STILL obsess about "it", my health, this web site, my continuing recovery & of course my overall future. Im fused from t5 to l4...so, thats a big chunk of spine if you ask me! Hopefully your bending Xrays will prove you wont need to go to high into your Thorasic area! And yeah for you for only having posterior! :)

As far as your grandchild....2....ahhhh I recall that age! Soo sweet,yet so sassy! lol My youngest just turned 4 in January & it wasnt until a few weeks before my surgery, that I began to try to explain what was happening to me and what mommy would be like after. He is a pretty smart kid....just like someone else said in a previous posting, that children know & understand more than we think. He still calls me "fragile", I think its cute! He also knows I cant pick him up & that I cant bend down to get stuff myself yet. When Im lucky, he lets me cuddle him on the couch & read to him at night, which I love. It was hard to be so disconnected from him at 1st, but as time went on & I began to feel more like myself, he came around. Now...again, 2 months post op, Im doing more than I would have ever imagined! I had it in my head, that I wouldnt be able to have a "normal life" after...but that just isnt so! I can even get him in and out of his car seat!

I hope reading our posts have given you some comfort knowing that ultimatly, there is more good than bad that can become of fusion surgery & most importantly, knowing that youre not alone in your journey. Please feel free to post as often as you'd like! Take care & have a good day!!!

Lynn :D

JoAnn5
03-15-2009, 05:36 PM
Jo, I have 3 young grandbabies, aged 1, 2, & 3. The 3 yr old was just about 2 months old when i had my first surgeries. I took a pic of her to the hospital with me. My friend would hold it as we would walk the halls and encourage me to "walk for Gracy". She and the other ones know that they can climb into my lap, but i can't lift them. Sometimes, esp. after my last surgery, Gracy would ask if my back hurt. I'd say "yes"... and she'd say "let me see." I'd show her the scar, and she'd say "oh, your back DOES hurt!!" And she'd kiss the boo-boo.... It really does make boo-boos feel better to get a sweet kiss from your grandchild! Now i can baby sit them and do just fine, although i'm usually worn out afterwards...lol. Even the 1 yr old will take me by the finger and lead me where she wants me to go. She doesn't have to be carried. :)... Life is great after surgery, especially if you have grandbabies !!

Linda W
03-15-2009, 10:24 PM
Hello Jo,

I echo the welcome notices you have received so far. I am also one of Dr. Rand's patients. He has quite a following of people who are forever grateful for the skill and talent God placed in his hands -- and I certainly am one of them as well! No one enters this type of surgery lightly and without having weighed as many pros and cons as possible. As others have indicated, making the decision to have the surgery is one of the biggest steps. Next comes talking about it and having the reality sink in. You are on a well traveled path and will be on the "other side" before you know it. I found both David Wolpert and Peggy Huddleston's books (and cd) to be very helpful. Following Peggy's suggestion, I wrote up "healing statements" to be read during my surgeries. The staff at New England Baptist was very supportive, and I am certain they read them to me.

I'm not a grandmother. My son was 12 when I had my surgeries. Don't worry, your grand daughter will find a way to be close to you and play with you after surgery. Don't forget that she will also be growing while you are recovering and her understanding will increase as well.

Please feel free to PM me if you want to chat off line.

Good Luck!
Linda W.

dolores a
03-16-2009, 07:38 AM
Hi Jo,

Had to say hello because I am pretty much at the same stage you are, fears and all. I read everyone's reply to you, it's comforting to read their experiences and to see how they are doing post surgery. I don't have grandchildren yet, but the fear of not being able to continue with my regular activities of daily living for a good while is scary. Thank God that I have a supportive husband and family, also my boss is great and will work with me through all, he even said that if need be I would be able to work from home until I am able to get to work. Looking foward to seeing your progress, as I am tentatively scheduled for surgery in the first part of June. This forum is a great place to get comfort and much needed advice and suggestions!

hobbit_str8ter
03-16-2009, 02:37 PM
Hi Jo,

I know that you're worried about the outcome and recovery from your surgery but want to assure you, like all other posters, that you are doing the right thing and are in the best care with Dr. Rand. He recently (Feb. 16, 2009) replaced my 3 degenerated disks and fused my L1-S1 with an anterior and posterior procedure that lasted about 11 hrs. The surgery immediately aleviated left leg pain, numbness and tingling that had been plauging me for nearly 8 years and made me realize that I should have done it sooner.

After one month I'm virtually pain free in the back but still have some discomfort in my left leg where some hip bone was taken for grafting purposes. This should diminish over the next couple months.

My history includes scoliosis surgery at Boston Children's Hospital when I was 20 in 1977 with fusion and Harrington rods from T1-T12. This was after spending about 4 years in a Milwaukee brace that failed to correct my scoliosis. I spent 6 months in a body cast after surgery but was running on the beach playing frisbee about 3 months after surgery and was able to continue with college while in the body cast. Fortunately, the body cast is a thing of the past and your post-op care should be much less intrusive.

The reason I chose Dr. Rand was because his medical history indicated that he worked at Children's Hospital and mentored under my original surgeon, Dr. John Hall, in 1986, whom he remembers fondly. He was meant for me and hopefully will be great for you.

I wish you the best in your recovery and future play with your grandchildren.

Roy

asccbodypro
03-16-2009, 06:26 PM
Welcome Jo!!

Your situation sounds just like mine! I am scheduled for Surgery April 15...the count down is on. I have been working with a chiropractor this past year faithfully 3-4 days per which has helped a lot but the reality is eventually my curve will probably progress. It has progressed 10* in the past 4 years. I would rather go through surgery now rather than when I am older, I am 36 right now. I am as active as I can tolerate and getting back in shape after having a baby last February. I use to be a bodybuilder so to have this start up again was the last thing on my mind! Such is life:O) It took me a while to come to terms with surgery....putting so much stress on the family but I know in the end it will be worth it. There are so many positive stories and people behind them on this website, I know I have made the right choice. Good luck and hope you find the support that you need here! Take care of you!