Intro... curved and wondering

[Donna M]

My name is Donna M; I am a 54 year old who was diagnosed with Scoliosis as a teen. No bracing was done, and it was felt that I would be just fine with a ¼ in lift in my left shoe to correct of my leg being short.

Jump ahead a few years… I am experiencing more pain than in the past, and now am visibly titling. I now have a 76 degree thoracic curve and a 67 degree lumbar curve.

I feel I’m facing surgery and must admit that for the 1st time in my life…this scares me.
I am worried if I don’t do surgery, I am going to be in trouble. My lung function is down to 65% at this time. I have only had 1 meeting with the doctors and am scheduled for my next visit in a few weeks. The doctor at Dartmouth mentioned that they were not the premier place for this type of surgery. If they are not…who is?

I was laid of last year and really need to get a job, but surgery would put a stop to that. Can one collect disability while recouping from a surgery like this?

I am also an active person who loves to ski, along with breeding and showing Irish Wolfhounds. My fear is that I will no longer be able to bend.

Thank you for listening to my rant. I’ve gone on long enough.

Donna M

[rohrer01]

Welcome, Donna.

There are many, many people on this forum that can relate to your situation. My curve isn't as bad as yours, but I need a job and one is available within walking distance from my house. However, having surgery will put a stop to that at least temporarily. I'm hoping that if I have a quick recovery, that I will be able to do my job with little threat to my healing process. Best wishes to you. And yes, I would at least check into disability with curves like that, especially if you are in pain.

[jrnyc]

welcome Donna
welcome to the forum...there are many kind people here who share their experiences, surgical and non surgical...and there is much that can be learned...and support can be exchanged..:)

Irish wolfhounds..wow...must be beautiful! where do you live?

jess

[LindaRacine]

Hi Donna...

Prior to my surgery at the age of 42, I thought I would be much less flexible than I turned out to be after surgery. The length and location of your fusion will dictate the amount of flexibility you'll lose.

You're not far from New York, where there are a lot of scoliosis specialists who treat adults. You might want to investigate Barron Lonner, Oheneba Boachie, Michael Neuwirth, Thomas Errico, and Jean-Pierre Farcy. I'm sure I've missed a few, but that should be a good start.

By the way, I love Irish Wolfhounds. They are such sweet, gentle dogs.

Regards,
Linda

[Donna M]

welcome Donna
welcome to the forum...there are many kind people here who share their experiences, surgical and non surgical...and there is much that can be learned...and support can be exchanged..:)

Irish wolfhounds..wow...must be beautiful! where do you live?

jess

I live in Chester, Vermont.

[jrnyc]

i noticed two names on the SRS list (available here on the NSF site) of scoli specialists in Vermont......
there are several good scoli surgeons in Manhattan...and each has their own preference as to hospitals they use...i guess you might want to check out the surgeons in MA as well, as far as what's close...? i am not sure how far you could/would consider travel for a doctor...

with the large curves that you describe, i dont know whether you have other problems going on with your spine besides the scoliosis (degenerative discs, stenosis, etc...)...the loss of lung function you have, at age 54, would be of great concern...i could see that as an important reason to consider the surgery now...

i hope you find the medical professionals right for you...finding a surgeon you can trust and feel comfortable with is so important..besides the experience with scoliosis that you want that doctor to have...
of the 5 or 6 surgeons i've consulted, most on east coast and one on west, i like Dr Lonner (Manhattan) the most...and he takes my insurance...others on this forum can share lots of info on other surgeons...
i also have a pain management doctor in Manhattan that i see once a month...

welcome again...
jess

[Lorraine 1966]

Hi Donna, and welcome to the forum from myself as well. The reason I had the operation when I did was because of decreased lung function. I have found that I can still bend slightly from the waist even though I am fused and honestly have not had any problem at all, except in the last 13 years but that has been because of the length of time since my fusion and the type of instrumentation used.

I wish you all the best and am so glad you have found us. The people on this forum are just wonderful and will help you as they have helped me and many, many others.

Lorraine.

[debbei]

Hi Donna,

when I first came to this forum a little over 2 years ago, I thought my life woud be over with a surgery as scary sounding as this. Of course not all cases turn out so well, but I couldn't be happier with my results. I don't have any pain, and most of the time I don't even THINK of my back, or notice that I'm fused.

See some multiple good doctors and educate yourself--that's the best advice I can give you.

[debbei]

Yes, you can collect disability due to this surgery. I am in NJ and I was on disability from October 15th till the second week in March.

[cathydrew]

Yes, you can collect disability due to this surgery. I am in NJ and I was on disability from October 15th till the second week in March.

Really? from any type of job? Or is it only if you don't have enough sick time?
Interesting....

[debbei]

Really? from any type of job? Or is it only if you don't have enough sick time?
Interesting....

Well you'd have to check with your employer. I was a consultant with no benefits, no sick days, but I was working there long enough that I was eligible for the state disability. I just checked my state website, you have to have worked 20 calendar weeks and earned above a certain level to be eligible.

But I think I read above that you don't have a job? Are you on unemployement? Because I know in NJ if you are unemployed and then become disabled, you still get paid but it's called 'Disablity During Unemployment'. If you don't have a job and are not on unemployment when you have your surgery you can't collect anything, obviously.

[JenM]

Hi Donna-

Welcome to the forum! Just wanted to tell you that I feel that no one was more scared of the surgery as I was. I am 31 years old now. I wanted to do the surgery at 20 years old but was way too freaked out about it. I worried about it for 10 years. Now that I look back, I wished I did it at 20 years old. I wasted 10 years worrying about it, really for nothing. I just took the plunge and had the surgery 2 months ago. I am now 8 weeks post-op. If I could do it, then you can too. I'm still shocked I went through with it, but the support on this forum is GREAT! I feel without the forum, I may not have went through with it. Best of luck to you with your decision. Just wanted to say I feel sooo much better standing straight up as opposed to being hunched over. It is life changing. Feels great to be able to wear form fitting clothes!

Take care and welcome,

JenM

[gmw]

Welcome to the forum, Donna. I have no answers to your disability question, but I have had the surgery in the past three months and am already so glad I did it! I was very scared and wanted to back out so many times, but happy I didn't!

Do hope the disability issue works out for you and you're able to have the surgery sooner rather than later.

Glenda

[Karen Ocker]

Not every state has a disability plan like NJ. Some states have none at all. I used my State(NJ) plan for 6 months.