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thesteelsage
06-08-2012, 01:51 AM
So this was heartbreaking and depressing news my doctor gave me. I'm sick and tired of living with the very visible curve. I've been looking forward to the surgery hoping for some degree of correction. Health benefits are fantastic, but ya know.. I'm just sad. It's hard to look forward to this.

I've been overwhelmed with bouts of depression and I tried to look forward to this. that maybe a positive change would be the inspiration I need...because I need inspiration.. but I'm just stuck. I'm overwhelmed with the thought that "I just can't take the sadness anymore".

Doctor just says there's not lot of flexibility in my main curve and he's afraid trying to correct it would paralyze me.

Jenna.KB
06-08-2012, 04:16 AM
So this was heartbreaking and depressing news my doctor gave me. I'm sick and tired of living with the very visible curve. I've been looking forward to the surgery hoping for some degree of correction. Health benefits are fantastic, but ya know.. I'm just sad. It's hard to look forward to this.

I've been overwhelmed with bouts of depression and I tried to look forward to this. that maybe a positive change would be the inspiration I need...because I need inspiration.. but I'm just stuck. I'm overwhelmed with the thought that "I just can't take the sadness anymore".

Doctor just says there's not lot of flexibility in my main curve and he's afraid trying to correct it would paralyze me.

Hi

Sorry to hear your so upset.

Where are you based? have you sought a second opinion? I read about a girl in America with a double curve similar to mine, they operated and when they slowely undid the curve it trapped a main nerve and she couldn't move her legs they kept slowly moving and playing with the spine until it didn't trap the nerve and she got amazing results. I would definately suggest seing another surgeon.

I don't know how to download pictures onto here yet but my top curve looks like yours it just goes out further.
I had surgery when I was 13yrs old to correct my lower curvature. It didn't correct my top curve but that didn't get worse so they left that one. I then had a costioplast operation to reduce my rib hump and now my top curve has gone from approx 20-30 degress to 104 degrees so I'm awaiting full fusion.

Whilst everyone is different I'm told by my surgeon that he is hoping to reduce my curves to at least 40 degrees. I had some bending and stretching xrays done and they show when I am stretched my curves decrease by approx 20 degrees on there own. Have you had any of these xrays done? Hopefully if you have these it will show there is room for improvement of your spine.

Don't give in, stay positive and keep smiling.

Jenna x

JenniferG
06-08-2012, 04:29 AM
Whilst I don't know enough about it to say positively, I think you should be able to expect some improvement and I believe a second opinion is definitely warranted. I don't know of anybody on this forum who's had the surgery who has had no cosmetic benefit. Most of us have vastly improved appearances and I'm sure you're not the only one with very little flexibility. Don't lose hope. Get at least one more opinion if you possibly can. Perhaps your current doctor doesn't feel confident in trying harder to get you some cosmetic improvement. How many of these surgeries does he do, would be one of my questions. This is a very important question for anybody seeking this surgery.

Wishing you the very best of luck!

Marina63
06-08-2012, 09:26 AM
I'm a little surprised that the surgeon does not want to do the surgery because your spine isn't flexible enough. My surgeon told me mine wasn't flexible at all and I had the surgery with good results.

TwinmomTN
06-08-2012, 10:34 AM
I was also told my spine was not flexible by more than one Dr. You definitely need to seek more opinions.

thesteelsage
06-08-2012, 02:49 PM
Hi

Sorry to hear your so upset.

Where are you based? have you sought a second opinion? I read about a girl in America with a double curve similar to mine, they operated and when they slowely undid the curve it trapped a main nerve and she couldn't move her legs they kept slowly moving and playing with the spine until it didn't trap the nerve and she got amazing results. I would definately suggest seing another surgeon.

Whilst everyone is different I'm told by my surgeon that he is hoping to reduce my curves to at least 40 degrees. I had some bending and stretching xrays done and they show when I am stretched my curves decrease by approx 20 degrees on there own. Have you had any of these xrays done? Hopefully if you have these it will show there is room for improvement of your spine.

Don't give in, stay positive and keep smiling.

Jenna x

Thanks.

It's getting the best of me. I've attached a lot of hope to this and ya know.. it's tough.

I'm in Arkansas US. I'm not sure how tolerable my Medicaid (disability insurance) will be about a second opinion. I'm afraid to make waves. It also took me 7 months to get to this appointment, because of Medicaid approval and from what I can find, noone in Arkansas is really talked about for scoliosis expertise.


Whilst I don't know enough about it to say positively, I think you should be able to expect some improvement and I believe a second opinion is definitely warranted. I don't know of anybody on this forum who's had the surgery who has had no cosmetic benefit. Most of us have vastly improved appearances and I'm sure you're not the only one with very little flexibility. Don't lose hope. Get at least one more opinion if you possibly can. Perhaps your current doctor doesn't feel confident in trying harder to get you some cosmetic improvement. How many of these surgeries does he do, would be one of my questions. This is a very important question for anybody seeking this surgery.

Wishing you the very best of luck!

I believe he's pretty new. Noone talks about him on the internet, and he joined his partnership last year. However, he trained with, and under, Dr. Lenke as well as another prominent spine surgeon.


I'm a little surprised that the surgeon does not want to do the surgery because your spine isn't flexible enough. My surgeon told me mine wasn't flexible at all and I had the surgery with good results.

Oh, he's willing to do the surgery, he wants to preserve my health (which I do as well) he just said he doesn't think there's much at all he can do for the shape of my spine, fearing that he might paralyze me/otherwise damage my spine, if he tries to do too much. I appreciate his position, I'm just disappointed.

--------------------

Thanks to everyone. I've had a rough time. I don't blame my doctor and appreciate his stance, but this was pretty crushing news.

Confusedmom
06-08-2012, 03:13 PM
Steel--
Why don't you see if he'll send your records & xrays to Dr. Lenke and get his opinion? Any good doctor should be more than willing to help you get additional opinions. My local surgeon made me a whole packet with copies of all my records and digital xrays and gave me contact info for three additional surgeons to consult.

What is your degree of curvature? Dr. Lenke said mine was stiff (it appeared that was on bending films), so he told me to expect about 50% correction. He actually got quite a bit more than that. I wouldn't count on perfection, but I would be surprised if you don't get at least some correction. I would definitely consult Lenke and maybe some surgeons in Texas. You might be able to send them files and get an opinion without actually seeing them the first time. Best wishes! Don't give up!!!

jrnyc
06-08-2012, 04:17 PM
Ev, do you know what insurance Dr Lenke accepts...?
does he take Medicaid?
just wondering...
i saw surgeons who did not accept Aetna when
i went to see them, and i paid cash for the consults...

jess

thesteelsage
06-08-2012, 05:45 PM
Steel--
Why don't you see if he'll send your records & xrays to Dr. Lenke and get his opinion? Any good doctor should be more than willing to help you get additional opinions. My local surgeon made me a whole packet with copies of all my records and digital xrays and gave me contact info for three additional surgeons to consult.

What is your degree of curvature? Dr. Lenke said mine was stiff (it appeared that was on bending films), so he told me to expect about 50% correction. He actually got quite a bit more than that. I wouldn't count on perfection, but I would be surprised if you don't get at least some correction. I would definitely consult Lenke and maybe some surgeons in Texas. You might be able to send them files and get an opinion without actually seeing them the first time. Best wishes! Don't give up!!!

He plans to consult with Dr. Lenke and one of his other partners. His decided certainty that my curve was too stiff worried me. It didn't worry me about him, it worried me about me. He seems like a great and informed doctor, but as he's the one that will actually have his hands on me, his opinion of what can be done for me will have the most weight.

Absolutely, I don't expect perfection . It'd be nice but it's unrealistic.

thesteelsage
06-08-2012, 05:46 PM
Ev, do you know what insurance Dr Lenke accepts...?
does he take Medicaid?
just wondering...
i saw surgeons who did not accept Aetna when
i went to see them, and i paid cash for the consults...

jess

Medicaid acceptance is per-state. Dr. Lenke does not accept Arkansas Medicaid, and referred me to Dr. Kelly. I can't say whether Dr. Lenke accepts say Missouri or Illinois Medicaid.

titaniumed
06-08-2012, 07:33 PM
I always knew that some day, somehow, I would have my surgery or surgeries....I had doctors shake their heads years ago saying its too dangerous, but I never lost hope. There is someone out there that can do something for you.

I thought about moving, about insurance, all of it. I was welcome to change.

Dr Pashman did Pilar.....She had no insurance, and she was serious.

Ed

titaniumed
06-09-2012, 08:23 AM
Here it is

Now, I have the PCIP insurance launched by President Obama for people like me with no insurance coverage due to pre-existing conditions. This health plan covers my surgeries, yes, 2, anterior and posterior.

http://www.scoliosis.org/forum/showthread.php?11455-Finally-after-2-years-surgery-scheduled!

Ed

titaniumed
06-09-2012, 08:30 AM
PCIP program for California.
http://www.pcip.ca.gov/Home/default.aspx

PCIP Arkansas
http://www.blueadvantagearkansas.com/members/pcip/default.aspx

Ed

amelot
06-09-2012, 08:34 AM
There is a surgeon in Memphis who trained some with Dr. Lenke named Julius Fernandez with Semmes-Murphy. That may be a closer location for you to try. I have heard good things about him.

titaniumed
06-09-2012, 08:47 AM
I think that Pilarís case is the only one like this here....and of course a really good surgeon will be needed........

Dr Pashman will consult without a visit......just e-mail x-rays to him. He will probably charge something.

http://www.cedars-sinai.edu/Bios---Physician/P-Z/Robert-S-Pashman-MD.aspx

http://www.espine.com/adult-scoliosis-cases.htm

Just trying to find a direction here.....He would be good for a 2nd opinion.

Ed

thesteelsage
06-09-2012, 08:14 PM
THANK YOU EVERYONE! (capslock intended :))

I will see about second opinions. I very much appreciate how helpful his office has been, but I worry a lot about continuing like this. The depression is overwhelming.

Jenna.KB
06-11-2012, 04:06 AM
Thanks.

It's getting the best of me. I've attached a lot of hope to this and ya know.. it's tough.

I'm in Arkansas US. I'm not sure how tolerable my Medicaid (disability insurance) will be about a second opinion. I'm afraid to make waves. It also took me 7 months to get to this appointment, because of Medicaid approval and from what I can find, noone in Arkansas is really talked about for scoliosis expertise.



I believe he's pretty new. Noone talks about him on the internet, and he joined his partnership last year. However, he trained with, and under, Dr. Lenke as well as another prominent spine surgeon.



Oh, he's willing to do the surgery, he wants to preserve my health (which I do as well) he just said he doesn't think there's much at all he can do for the shape of my spine, fearing that he might paralyze me/otherwise damage my spine, if he tries to do too much. I appreciate his position, I'm just disappointed.

--------------------

Thanks to everyone. I've had a rough time. I don't blame my doctor and appreciate his stance, but this was pretty crushing news.

Hi

Don't be worried about 'making waves' this surgery would be happening to you so of course you want to know everything about the surgery and what hopefully can be done. You want the best result and the best people to operate on you.
I didn't ask for a second opinion so slightly different but my surgeon had no problem telling me he would be consulting a number of colleagues to decide how best to do my surgery to try and achieve the best results.
Don't be scared to ask your surgeon to speak with Dr Lenke and as I said, ask for bending and stretching xrays. They really showed how flexible I was so this may mean he changes his opinion about how stiff your spine is.
I can understand he wants to preserve your health and I'm no doctor but I don't understand how he thinks he cannot improve the shape of your spine. So many people on here have had really stiff spines that are older than you and have achieved an amazing correction which has in turn changed the shaope of their spine and their general appearence for the better.
Deep breath and go for it. Get your questions answered and as many opinons from others as you need. Keep us updated. Good Luck

Karen Ocker
06-11-2012, 04:39 PM
Medicaid is supposed to help those with the least financial resources however many doctors, even a particular state's Medicaid plan, do not take Medicaid because the doctor reimbursements are so poor. It often do not cover the administrative costs of the office visit. Many doctors do not even take Medicare for us seniors. This is a problems for those on permanent disability when they go on Medicare after 2 years.

Is there any way you could get treatment via a scoliosis clinic at a nearby university hospital?

I do not believe that you cannot be helped. So many of us, myself included, had severe deformities and previously fused spines. We were very much improved.

Today I was looking at old photos and I could really see how tilted and twisted I was despite creative ways to "dress the curves".

Is there any way you could get affordable insurance? The new Affordable Care Act aka Obamacare allows those with pre-existing conditions to purchase insurance.