Oldest person here with congenital scoliosis?

[Pooka1]

Given the state of the science/art when Gerry was young, I think her mother made the correct decision to remove her from the hospital and basically ignore it. History bears that out.

But I'm wondering if most scoli surgeons would agree that surgery is contraindicated for her now, though.

[laurieg6]

I've been wondering that too.

[Neener]

I am currently going through a formal diagnosis of my scoliosis. I was born with a congenital hip dysplasia (left hip), that required 4 major surgeries. Over the past few years, I am finding out that my hip was not the only thing affected. My entire left side did not form at the same rate as my right. I am missing a rib, and have several hemi-vertebrae in my cervical and thoracic spine. Until reading the posts on this forum, I really wasn't sure how many people suffered from similar conditions. It's nice to know that I'm not the only one.

I'm 29 years old and the chronic pain is getting to a point where I can't work. I feel like no one believes me, and I don't know how or where to find good help. I want to apply for SSDI, but I'm on unemployment right now and can't lose that! This really sucks! I don't even know any details yet on my back, and my dr. seems to think that I'm fine to work.

Sorry, I just get so frustrated with all of this.

[pathvet]

surgery as a last resort

My story is similar to Gerry's but I am 32 years old. I have a greater than 90 degree lumbar curve with a similar thoracic curve that tries to compensate. My scoliosis is congenital- hemivertebra. I can tell you I was monitored as a child but once my growth plates closed, the doctor washed his hands of me. I was a complicated case that was functional. As an adult, I decided to investigate the surgery thing. I've been to some of the top specialists- orthopedic and neuro. They feel that surgery is a salvage procedure and because I am in minimal pain and I am still very functional- it would be inappropriate to perform surgery at this time. The surgery is a massive undertaking and cannot correct the curve and could only prevent further progression. I am on monitored every two years for significant progression. At the time of significant progression or major limitations in my function due to pain- we can revisit the surgical options.

While I love this site, I notice that everyone jumps on those of us that have not had surgery. If we find a doctor/doctors that can explain all of our options and help us understand the pros and cons of surgery where is the problem in that? The doctors are familiar with our unique cases. We are not your average surgical cases- so please don't assume we can have surgery and we are lazy or ignorant in our decision not to have surgery.

[CHRIS WBS]

While I love this site, I notice that everyone jumps on those of us that have not had surgery. If we find a doctor/doctors that can explain all of our options and help us understand the pros and cons of surgery where is the problem in that? The doctors are familiar with our unique cases. We are not your average surgical cases- so please don't assume we can have surgery and we are lazy or ignorant in our decision not to have surgery.

Let me be the first to say that I would never “jump on someone” who does not have surgery. Everyone’s situation is unique and what may be the right decision for one person may not necessarily be the right decision for the next person. It took me nearly three years after much research, surgeon consultations and prayer to proceed with surgery. I was fortunate though that I did not have any prevailing health conditions that would have made me a poor surgical candidate. But at my age I realized too that I wasn’t going to get any healthier and timing was critical. After following the posts in this forum for over three years, I will admit there have been certain individuals who have trivialized the seriousness of this surgery almost to the point of glamorizing it. There’s nothing glamorous about it. It was the most emotionally and physically painful challenge of my life. And it was only by the grace of God that I got through this without any complications. If surgery will ever be the right decision for you, trust me, you will know. I wish you all the best. Chris

[pathvet]

sorry

Sorry- I didn't mean to be all encompassing. Everyone was not the right word.

[txmarinemom]

Sorry- I didn't mean to be all encompassing. Everyone was not the right word.

Pathvet, what you wrote wasn't taken as "everyone" (I hope I clarified what I wrote, as well).

Bear in mind, the "everyone" interpretation of your post flowed from the fingers of someone who claimed surgery was 2nd only to amputation.

Pfffbbbbt.

The same person who wrote THAT kicked those of us who HAD surgery for several years - until she assumedly did. She also scared the CRAP out of too many newbies to count with claims she no longer hawks.

To each his/her own, but ChrisWBS ... *maybe* you should re-read/revise/delete all your pre-op negativity. Do those who follow(ed) you a favor, and tell the truth about it "not being glamorous".

None of us took it lightly. You just enjoyed kicking us while we wrestled with the decision. Is that how your faith ... your "grace of God" works?

You're a hypocritcal witness if you throw that card.

[Singer]

Lay off her, Pam.

Chris WBS's and Pathvet's posts had nothing to do with you.

[Susie*Bee]

I'll second that, Singer.

I'll also add that I found ChrisWBS's intense struggle with the whole topic of surgery as she slowly explored and processed its pros and cons and shared her fears and concerns, to be a "down to earth" approach that many need to work through. To denigrate that process is to deny the needs of many who also stand in those shoes. Not everyone can make quick, clear-cut decisions on whether to go ahead with surgery or not. And this is a serious surgery that not everyone bounces back from without any complications. I appreciate hearing from both sides of the spectrum and would hate to limit that.

Pathvet-- I think you may have misunderstood some posts-- or maybe it's me that has, because I haven't felt that people were negative with those who cannot or do not choose to have surgery. You have so much to deal with as it is, and this should be a place where you can come for support and understanding regardless on which side of surgery you stand. I have a dear friend who cannot have surgery and is quite crippled with her scoliosis. I understand that it's not a possibility for some. We care. OK? Keep us posted on how you're doing and what struggles you have. There will always be someone who understands and provides encouragement and care. Take care.

[pathvet]

overly sensitive

I am overly sensitive about surgery- sorry to stir the pot. For years, my parents faced being considered neglectful by their friends because I did not have surgery or wear a brace. Even now- and I work in an environment filled with people with a medical education- I hear "so, why didn't you have surgery as a child? Did you ever wear a brace?" The story is usually "I had a friend (fill in the blank) who had scoliosis that was discovered in gym class, she had surgery and she is fine now." Makes me want to SCREAM. If only my case were simple or typical. My parents took me to the orthopedic surgeon beginning at the age of five. I went every six months into my teens and I am still monitored. Braces will not fix hemivertebrae and surgery was considered, but the complexity of it outweighed the benefits (and still does). Sorry to vent- but I would love to have a straight back and would've welcomed the opportunity to wear a brace and have the potential to have some level of improvement. Instead I face a world that feels that I am ignorant and neglectful and I have zero chance of a straight back. 99% of the time its absolutely OK with me- its the 1% of the time that makes me crazy. I suppose I am also jealous that other people have options or opportunities to improve physically. I would if I could.

[Wishing]

Hi Gerry,

How are you feeling lately? Has your pulmonologist every considered trying you on a Bi-Pap machine at night to help your lungs? It helps give the lungs a rest at night, and pushes air into your lungs. It can reverse or significantly improve one's pulmonary status and blood gases. I use one and find it a great help and noted my blood gases improved considerably. I read a Swedish study which followed scoliosis patients who required oxygen and those who were put on a breathing machine like a Bi-pap at night and the latter group fared better. I have a Bi-pap mask that has a port that can accomodate oxygen if needed. I used it in the hospital recently with oxygen which I only needed for a few days. I use the Bi-Pap every night without fail or when I take a nap in the day and it helps greatly. I wish you the best. Let us know how you are doing.