Success stories, anyone??

[brynnski]

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]

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]

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!

[spincon58]

Hi,
Just a question...Why did u mention that if your fused to L5 there will be revision surgery???

[Heathmoose]

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]

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]

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]

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]

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]

Extreme sports?

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]

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]

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]

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]

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]

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.