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View Full Version : Success stories, anyone??



brynnski
03-10-2007, 03:46 PM
I've been getting very anxious about my upcoming surgeries again. Finding out that there is a chance that a fusion to L5 will mean I'll need a revision surgery in the future really did me in. If I knew my progression would stop I'd cancel surgery altogether, but this is apparently not the case. I have started going to a medical hypnotherapist who will be helping me to control my anxiety, decrease pain, etc. She suggested that I look for spinal fusion success stories, since so much of what I read is about fear, pain, need for revisions, etc.etc. So I Googled "Adult scoliosis surgery success stories." I only found one, but it was a good one. I know there have been people on this Forum who have posted about theirs but I'm having trouble finding them.

Will adults who have had successful spinal fusions that have made a positive difference in their lives please answer this post and tell us about their experiences? I know this will help those of us who are waiting for our surgeries right now.

Thanks!
Brynn

lelc2002@yahoo
03-10-2007, 07:05 PM
Brynn- I am fused T-11 to L-5 which could have been T-2 to sacrum but all worked out that my surgeon could fuse less. I had my surgery last August and I am so happy I did this. Yes, there are ups & downs thru recovery but the pluses(to me) far outweigh the negatives. I still have some slow days here & there but I know I'm still recovering so I try & be patient. I go in for my check up Monday & I feel at 61/2 mths I may cry tears of happiness since it seems like a big hurdle I've jumped...& made it! I did it!!!! good luck & think you'll be a better 'you' for the future! Lynne
http://lynnebackattack.blogspot.com
:)

rainbow2010
03-10-2007, 07:35 PM
I was fused from T12 - L5 32 years ago. I had no problems carrying two children to full term and they both weighed around 9 pounds. I stayed very active for many years. I had problems develop because my fusion decided to grow on its own and fuse down to S1. Once part of that was removed, I had relief. Now old age is setting in and causing problems. I just have to slow down and do things different. My daughter had her surgery almost three years ago, and has had no problems. She dances (ballet, modern, and jazz) everyday and twice on Fridays (including pointe). A lot of healing is mental and deciding not to let surgery slow you down. You may have to alter the way you do some things, but surgery is worth it! :p

spincon58
03-10-2007, 09:10 PM
Hi,
Just a question...Why did u mention that if your fused to L5 there will be revision surgery???

Heathmoose
03-11-2007, 11:55 AM
Hi Brynn. I know how anxious you must be feeling about your upcoming surgery. I was in a lot of pain before my surgery and being that my curves were progressing quickly, I really felt there was no other alternative to surgery, even though I wished there was.

However, I have to say, it was really worth it. I am virtually pain free (which is not a guarantee with surgery). Once in a while I have muscle related discomfort due to excessive lifting (my 20lb baby daughter). I am fused from T-11 to L-5 and like you, was concerned about not being fused to the sacrum. I did question my surgeon about it. My surgeon said there is always a chance they'd have to extend the fusion at a later point, but he wanted to give me more mobility and only fused to L-5. It's a gamble, but I went with his advice.

My quality of life is so much better now, plus I got 2 inches taller too! I had a great pregnancy and no difficulty delivering my daughter. The surgery made such a difference for me.

Good luck and hang in there!
Heather

bbest
03-11-2007, 03:30 PM
I am fused L1 to sacrum. I will be one yr. post op on May 22. I have my bad days every now and again, but I would definitely consider myself a living success story. I was in dire pain for years and years and the first thing I noticed when I woke up from surgery was that my pain was gone. Believe me, we are out there. It's just that most folks who are doing well after surgery don't report back here. You can read all about my story in my May and July/August archives on my blog. To summarize, if I had to do it again, I would. I am a new person living a new life. ;)

Take care,

Linda G
03-11-2007, 04:05 PM
I just had my surgery on the 5th of Dec so I am still new to the game. However, I am so happy that I did this. It was not an easy decision for me at age 63 but it has turned out to be the right one. I have little to no pain---most of it is just surgery related such as nerves waking up etc. My only draw back has been the fact that I fell 3 weeks ago and broke my hip. That really threw me a curve. It has been much more painful and depressing than my back. My fusion was a long one--I had 6 disc replaced, bone spurs removed around S1 and fused from T9 to S1. No surgery is fun, wanted or easy but once you are on the road to recovery I think you will be glad you did it.
Linda G.

brynnski
03-11-2007, 10:16 PM
Thanks so much, Heather, Brandi and Linda. Your success stories have helped me greatly. I am the kind of person who likes to find out as much as possible about something I'm about to undergo. This definitely has it's pros and cons. After a rough stretch of worrying I've come to realize that it's very important for me to start focusing on the positive. I have two months to go before my surgeries, and I think I've found out enough about the possible complications. I need to look at the very likely fact that these surgeries will give me a "new lease on life" that means freedom from the chronic pain I'd come to accept as just part of my existence. How amazing would that be?

I spent the day with a friend who had hip-replacement surgery just under a year ago. She was as scared before her surgery (it took only 2 hours) as many of us are about our spinal fusions. It's all just a matter of perspective, I guess. She lent me a DVD that she played before her surgery that helped her a lot. It's called "Pre-surgical Guided Imagery Program", put out by Blue Shield. I plan to start listening to it tonight. She is doing great.

To Connie: There are a couple of studies I read recently that suggest that a percentage of patients fused to L5 experience the degeneration of that vertebra over time. But there are so many variables to consider. Each of us is an individual, and good surgeons do their best to prevent us from needing future revisions. I am going to ask my surgeon about this when I see him on April 2 though.

I really appreciate the support everyone is giving me and all of us who are waiting for surgery!

Brynn

spincon58
03-11-2007, 11:19 PM
Hi Brynn,
I figured that may have been the reason. When I went to my surgerical consult the fellow in the room(not the surgeon)) expressed his concern that I may in the future have revisin surgery because of that reason...but now I'm facing a different kind of revision surgery....my rods are causing percing pain..I did GREAT ...after surgery the pain was hard but after 6 months I was rock climbing and I continued to excercise and do extreme sports...and I think because of that I have problems...My doctor said because I lost weight and built muscles in my back that i lost the coushioning on the rods....what ever the reason I wish I could give u a sucess story...but I am glad that I had surgery...I stand upright all day with crying in pain....Lifes a gamble and that a decision u have to take..imagine yourself in 10 years what your health will be like if u didnt have the surgery......goood luck!!

Singer
03-12-2007, 06:22 AM
Brynn, thanks for starting this thread -- it helped me a lot too. As you know, I also like to know "everything" -- but it's possible at this point that I know too much. I really suspect that positive outcomes are more the norm than not.....

Connie, based on your experience, I know I won't attempt any weight lifting after surgery!! I'm actually surprised that this activity wouldn't be on most surgeons' "things to avoid" list.....

abhbarry
03-12-2007, 08:49 AM
I'd also like to thank Brynn for starting this thread. I think you and I are having surgery around the same time (mine is in early June). I've actually been quite calm lately until last night when I started having a mini-panic attack. I have to go get my echocardigram today, so maybe it is the realization that things are starting already.

Anyway, I'm also reading a book called "Prepare for Surgery, Heal Faster," by Huddleston. (I don't remember the first name right now). It may also help others.

Best,
Anya

Pips
03-13-2007, 01:54 PM
Just to add in my success story....I too am fused to L5. My surgeon told me that with only one mobile joint at the base of my spine, it would take a lot of battering over the years to come and in time my fusion may need extending to S1. On the other hand, who knows how well it will hold up so it may never need doing (fingers crossed!).

I would always tell people to get their own information and make up their own minds, but for me the surgery was worth it ten times over. My pain levels have reduced and in addition I know I will never have to worry about the continuing stresses on my body caused by a worsening curve.

Good luck with your decision!

brynnski
03-13-2007, 03:52 PM
I'm glad that this has become a popular thread and that it's helping others who are getting ready for surgery, or considering it.

My fusion will be from T10 to L5, very similar to several who replied. I have decided to focus on now instead of an unknown later, as much as possible anyway. Who knows, by the time I need a revision (if I do) there may be new surgical methods that are less intrusive. I may be an old lady by then so I'll probably need any further surgery to be as simple as possible. I appreciate the post by Connie too, since she is describing her experience after continuing to do extreme sports. I will research what kind of exercise is helpful after I recover and what kinds I should avoid. After all, the way my spine is curving I imagine it's putting at least as much stress on L5 as my fusion will. It's already wrecked L3 and L4. So avoiding surgery definitely isn't the answer.

A couple of days ago I found my that my perspective had changed from worrying about the negatives to being glad about the potential positives that can come from having these surgeries. Your success stories have really helped to shift my perspective.

Thanks!
Brynn

Singer
03-13-2007, 04:28 PM
Brynn, here's another mental "trick" that helped me. I asked myself this question: if I were to be declared unfit for surgery because of some medical reason, would I be relieved or disappointed? I thought about it and had to honestly say that I would ultimately be disappointed -- as nervous as I am about it, the bottom line is I really DO want a shot at helping my back.

I spent most of the day yesterday helping my in-laws get settled in their new apartment -- unpacking, washing, tidying, etc. I ignored the pain and by the end of the day my back was so sore I felt nauseous. If I'm like this now, I can't imagine what life would be like in ten years.

ashleym8118
03-13-2007, 10:08 PM
I am fused T10-L5...my surgeon told me at my pre-op that doing yoga/pilates after the surgery and staying in good shape in general from now on would GREATLY decrease the chance that I would need revision surgery later on. I haven't started doing any exercise yet but will talk to him about what I can do tomorrow at my 3-month post-op appointment.

sai
03-15-2007, 05:56 PM
hi everyone

i just wanted to know there are lots of success stories out there-but i think sometimes people dont want to brag too much about how well things are going just incase they jinx it, i know this sounds silly but i think it is true.

personally i ant stop telling anyone that will listen he he

i am now nearly 8 months post op and feeling on top of the world-if you look at my history you can read lots of positive comments as iv had nothing but good to say and truely feel this way. btw-i am planning on doing a sponsored walk for cancer research in june so that just shows you how well it is all going.

Sai

Suzy
03-17-2007, 09:23 PM
Hi Brynn,

I sent you a pm Regarding how successful my outcome was but thought I should post here as well for those who need to hear about ALL the successful scoliosis surgeries that are happening.

I had my T10 to L4 fusion 2/22/06 at age 43. I am back doing everything except water skiing (Per my Dr.) and touching my toes (I don't need to). I am pretty much pain free and think the only reason I have a little bit on some days is because I am living my life at full speed again. This includes wearing my favorite high heels even while out shopping. I just noticed a few weeks back that I even have my normal walk back. I am not walking stiff, my hips move side to side again. I had to grin and laugh when I realised it (I was walking down the mall) I must have looked psycho laughing to myself! There are quite a few success stories on here now. I noticed with a lot of good outcomes the people drift away. It is too bad because there are way more then just those of us who have posted so far. Best wishes.

SusanGP
03-18-2007, 12:39 AM
I just had my surgery on the 5th of Dec so I am still new to the game. However, I am so happy that I did this. It was not an easy decision for me at age 63 but it has turned out to be the right one. I have little to no pain---most of it is just surgery related such as nerves waking up etc. My only draw back has been the fact that I fell 3 weeks ago and broke my hip. That really threw me a curve. It has been much more painful and depressing than my back. My fusion was a long one--I had 6 disc replaced, bone spurs removed around S1 and fused from T9 to S1. No surgery is fun, wanted or easy but once you are on the road to recovery I think you will be glad you did it.
Linda G.
Hi Linda G and everyone else. I feel computer illiterate tonight. I haven't replied to any posts before and am not sure if I am puttiing this in the right place. I am so glad to hear some success stories, especially from someone my age. I will be 60 in October and am so scared as I know I am going to have to have surgery. I can't live like this any longer. I have a 63 degree C curve in the thoracic and lumbar area and it is moving up. The pain is so bad my quality of life is practically non-existent. My current ortho surgeon in recommending anterior/posterior surgery with fusion of T9 or 10 to L3 or 4. I have lots of arthritis spurs, stenosis, degenerative disc disease, neck problems too and more but it's late and I can't spend too much time here. I was scheduled for surgery last August and chickened out. Now in May I will be getting one more opinion from a surgeon at Oregon Health Science University in Portland. I will go from there. Anyway I am so glad I found this forum, now I need to learn how to use it and talk to all of you because I feel so lonely and so tired of the pain.

Theresa
03-18-2007, 01:37 AM
Susan,

Let me be the first to welcome you to our little world! I think you did pretty good. You found this site and even posted your first message, that was the hard part. Now the easy part, just writing down whatever is on your mind. There is usually someone on here that can help in one way or another. And if we can't answer a question, at least we can listen when you just need to vent sometimes. If you what to search the archives for something, just click on the word search in the blue bar just above and type something in the box and hit enter. Also, if you scroll down on the first page, you can select how far back you want you pages to go. If you just want the past two weeks to show all the time, then click on two weeks. If you want longer, click on one of the other selections. You can also click on someone's name and it will ask if you want to see all posts by that person or all the threads that were started by that person. You can also go on user CP (upper left side), click on edit signature, and enter what you want to print at the end of your message each time that you post.

Once again, Welcome!

dawney
03-18-2007, 08:59 AM
I am a little over 6 monthes post op and having the surgery was the best thing for me. I was fused to the iliac crest and have not lost as much mobility as you would think. I am still recovering but I did pilates and walking. I am still stiff and I still take a tylenol with codeine once in a while if I over do it. I too am back in the swing of things and forget that I still need to watch
I definitely feel like a success story. A lot of people tell me my face looks different. I think that is because before the surgery I had pain stamped on my face every day.
Good luck to you.

brynnski
03-18-2007, 02:13 PM
Hello again, everyone:

I'm so pleased that people are still posting on this thread. It's really helping me to hear from you all, and I can see there are others who are being helped too. Thanks!!

Linda: How are you now? Are you healing from your broken hip? I'm so sorry this happened to you, and just when your recovery was going so well. I hope you're better!
Suzy: Thanks for letting us know about your successful surgery. I hope to hear more (didn't get a pm yet. Did you send one to me?) The idea of living life at full speed again is exciting, to say the least. You sound like you're really enjoying it!
SusanGP: You and I have a lot in common. I, too, will be 60 in October. My largest curve (mine is lumbar) is around 60 degrees. My fusion will be much like yours. I have pain, spurs,DDD, etc. too. Reading about the successful surgeries of others like us is helping to calm my fears about surgery. Welcome to this Forum. It is a great place to connect with others who are in the same boat. And the people here are supportive and quite knowledgeable. I'm looking forward to hearing more about you....
Sai: You're able to be so active now! Wow!
Ashley: It helps me just to know that you're already asking about exercise at your 3 month check up. Yoga and Pilates are my two favorites, and I'm so glad that your doctor says they will be good for those who are fused at T10 to L5! I was afraid I'd have to give up yoga, especially forward bending poses. Have you heard if you'll be able to do those?
Chris: I've been doing the same thing lately, asking myself how I'd be feeling if I was told I couldn't have this surgery. My pain has been less recently. It tends to flare up and then decrease again (over and over according to how active I am.) But I have not forgotten how bad I was feeling just a few weeks ago!

Brynn

tommyo
03-18-2007, 09:36 PM
I know four people personally who have had this surgery and have no after recovery pains or problems, they just don't post on the internet. Two are middle aged women, one middle aged guy and one 18 year old guy. They don't seem to think it was such a big deal??!! They can't understand my worrying whether to have it or not.

spincon58
03-18-2007, 11:09 PM
Hi Brynn,
I am a born worrier!!..but I'd like to tell you this was my downfall before I had my surgery...I was so absorbed with fear that I would not listen intentively when the doctor would give instructions...I really made myself emotional sick from worry..and what did it get me>???? nothing!/...worring does nothing....its an human response that helps and does nothing!!!!but make u crazy!!!If I could give advice before surgery would be to have total trust in your doctors and just leave everything to a higher devine....because onces your under anesth...your out and nothings in your control..What helped me ..I kept thinking this is something i have to do and it will be over soon...like going to a dentist...but to be honest and not scare you with worry...this surgery was very very painful to me...maybe i didnt have enough pain meds and i know everyone is different..but for me...my pain could not be controled...I also brought in a hospital bed...this was helpful and it made getting in and out of bed easy....or bring an recliner in the home....anyway I know u didnt ask for this advice ..just talking!!if u need me just email me!!

Shari
03-19-2007, 01:58 AM
Everyone here has given such good advice and valuable insight. I just want to add, that a caring and concerned Dr. will always give you all the information you may need to make this life changing decision!!! And I think if you have a Dr. that tells you that you may need additional surgery down the road if you are fused to L-5, that shows they are a very caring and knowlegable person.

My Dr. explained to me from the begining that being fused to L-5, that there was a risk that there "MAY" be a need for additional surgery down the road, because of the stress that area will be under. He never said it was an absolute, but that it could happen. He also mentioned that if it would be neccessary, that it would be an easy surgery compared to what I was about to go through.

I also think that if we adapt and adjust to our new backs in a safe way, it may not be necessary, but there's no guarantee. But is there ever a guarantee with anything in life???

Shari

SusanGP
03-20-2007, 12:19 AM
Thanks brynnnski and Theresa!!! for your reply and welcoming me to this forum. It was so wonderful to get on here and see a welcome.
Thanks brynnski for the info, I will use it hopefully tomorrow - put info at the bottom of my message, etc. It is again late and I must get some rest. For some reason I start feeling a little better late at night, don't know if it is all the pain meds building up and finally helping or what.
Theresa, guess I will remember your birthday. Guess we do have more than one thing in common.
I have to start gathering up all my mri's, CT's, myelograms, x-rays, etc. for my appointment with new doc in May. I get so tired of filling out all the forms etc. to see a new doc. I have been searching for some time now.
Thanks again to all who welcomed me and I will get back on soon to talk and see if I can help anyone along with the help I get.
I am just sooooo glad I found this forum. I don't feel so alone now. It is wonderful to hear success stories. It gives me hope where all I have had is fear.
Susan

Frosty
03-20-2007, 09:40 AM
Most surgeries are a success. Of course you shouldn't expect miracles. Scoliosis is incurable but the great majority have a good outcome from surgery.