Hi, I'm new and I need help.

[melsnapp]

Hi, Camille!

Thanks for replying, I appreciate hearing everything you have to say. I know what you mean about being long-winded....but we have a lot to say about these matters, because it's such a part of every minute of our lives!

After reading your posts, I have another question for you. I know what you mean about minimizing the pain....it's totally a coping mechanism. The other thing that I'm nervous about is....hmmm....how can I explain this succinctly? I have good days, and I have bad days. On the "good" days I still experience pain, but it's bearable. Some days are better than others, I'm sure you experience the same thing, right? But I'm afraid if I tell them I have good days, then they'll think I'm fine. Do you know what I mean? But I also don't want to be dishonest. I'm probably just stressing over this too much. It's a stressful undertaking!!! I'm not sure if what I'm saying makes sense. But, let me know what you think! Thanks again!

[Danite]

Hi Melsnapp,
I read your posting about pain and telling it like it is, I understand how you feel and very much appreciate your honesty. Frankly speaking they (Insurance, Government, Benefits) providers of coverage or financial benefits could actually care less about it. All they would and want to do is cut cost, prevent increase in their bottom line. As for us, I sincerely and respectfully say be honest to yourself, if you are truthful, honest and upfront, the truth will prevail in the long run. I'm in the same boat, and feel that if I would just not tell them the full story, I would be better off. I too, have good days and bad days, mostly bad days now. Unless they ask, I will tell them about the bad days only, pain is a personal thing, each one of us handle it slightly different and can tolerate a different degree of pain, it is subjective but they look at it as black and white on a scale.
Good luck, keep in touch, and fight for your rights....

[Camille]

LPC

Hi William. Thanx for your response. I received my MEd in Rehabilitaton Counseling back in '89, became liscensed in '96. I worked full time in a variety of settings up until Feb. '02.
It sounds like you may very well get the SSDI this time. I hope so. It has taken its toll on my self-esteem/self-confidence, the part that was tied into my "work"....ya know, the kind that shouldn't matter! The positive side is it feels good to finally be taking care of myself, however difficult it may be.
I'm still learning that my value as a person has nothing to do with my job or how much $ I make. All of these things are so easy to say to others! It's holding up that mirror that's the challenge.

Just curious....since you have the fusion with no hardware, how did it take? did you wear a brace? what was your recovery process like?

Camille

[Camille]

good days, bad days

Hi Melissa. Yes, I definitely know what you mean about the good days and bad days. I struggled with that as well. I agree with what William said about just talking about the bad days, unless they specifically ask. I had to remind myself that if the SSDI Decision Makers were in our shoes, would they give it to themselves? I'll speak for myself, hell yes, absolutely, no question.

I think it's only normal that we worry about these things, because so much is at stake (in the one little evaluation).

I'll tell ya what happened with me. My original surgeon has probably kicked the bucket by now. I went w/o a Dr. visit for many many years, b/c I was managing it myself. However, when I sought help 2 years ago, I had not yet even considered the SSDI route. The doc I chose is supposively the best in GA and I had to jump through hoops to get an appt. Anyway, I was still actively minimizing the reality of my situation. Then when I later decided to apply for SSDI, he began treating me differently. He had an attitude about the whole thing. He actually said to me, "are you gonna have the surgery and go back to work, or get Disability and do nothing?" Can you believe it?!! At the time, I was alone with him in the office, and had just "questioned" (how dare me question The Godly Dr.!!) some of his contradictory comments on an evaluation for SSDI. So, I think I insulted him. And unfortunately, I allowed him to intimidate me and was in tears by the time I left. Regardless, his comment was COMPLETELY inappropriate in a huge way. My psychiatrist wants me to report him.
So, after stating all of my limitations (which were significant), he adds, "this young lady should still be able to maintain some kind of a job."
I'd like to cram my approval letter, well I won't say!

All of this blabbing, is to say......don't minimize, during your evaluation!!

okay, so I got carried away again!

Camille

[LindaRacine]

Hi Camille...

The doctor was obviously a bufoon. I'm sure it must have been awful to be treated like that. With that said, however, there are a bunch of studies that show that people who apply for long-term disability make very poor surgical candidates. I'm sure that much of that is because that population is made up of people who have the most wrong with them. But, it's also been found that people who apply for long-term disability report poor outcomes, because there is a benefit for doing so. Therefore, since spine surgeons (especially those in the academic community) are always concerned about their outcomes, they're often reluctant to take on patients who are on long-term disability, and especially those those who are just in the process of applying for long-term disability.

Please know that I'm not judging you, or anyone else who is getting long-term disability. I believe that it's a relatively small percentage of people on SSDI, who don't actually deserve it, who give everyone who applies for SSDI a bad rep. If anyone who reads this message falls into that category, then shame on you!

Regards,
Linda

[Danite]

Hi Camille,
The surgery lasted for over ten hours, I was in the hospital for 5 months. I wore a plaster cast for over a year, followed by a special design milwaulkee (s) brace for three years. I actually went thru two or three of them, and remember wearing them to school. University of Michigan Hospital is an Education Institution so I was treated like an experiment or item. For the first ten to thirty years it took darn well, I had yearly checkups with the specialists in Ann Arbor, Michigan until I was about twenty-seven years old. Of course they saw no changes, but I could feel something going on.
Right now the curvature is rotating and becoming more severe, with breathing becoming more of an issue, also being tired all the time isn't fun either but I really think that most of our brothers and sisters with scoliosis are the strong and independent type. Being a Rehabilitation Counselor you understand the disability culture and I totally respect your feelings toward SSDI. SAME HERE.

[Camille]

Hi Linda. thanx for the feedback. It didn't feel judging to me. I had never considered the outcome thing. It's very unfortunate that some of the doctors have no compassion. That's very interesting, so thanx.
I agree with your comment about the percentage of people who don't need it, giving the rest of us a bad rep. I am steadily fighting my own stereotypes/stigma attached to "those people on Disability". Even though I truly believe I deserve it, I still struggle with shame. Some people tend to treat you differently when they hear you're on SSDI. In the past I have worked with some people who I believed to be abusing the SSDI funds, so now I guess I'm just judging myself the way I judged them. So, shame on me!

Camille

[Camille]

Hi William, bless you for being in a cast and brace for 4 years. Holy Cow.
I wore a plaster one for a week, the week between my 2 surgeries, then I wore a regular (fiberglass, I guess) cast for a year. My first surgery took 8 hours (posterior-Harrington Rod) and the 2nd took 9 hours (anterior-Dwyer Instrumentation). I was in the hospital for only 3 weeks. They sent me home in an ambulance and I'll never forget them rolling me through the bumpy yard to the front door. It was excruciating.

I too, was in college when I was wearing the cast and yes, ya do get treated like you're a freak of nature. I was so shy back then. I know I would cope a lot better with it now. I only took one class a quarter for that year and I had to stand in class. My dad built me my own private podium! to use during class. I could only sit for like 15 mins. at a time that year.

Did they cut a big hole outta the cast for your stomach? I remember my stomach poking out of it! It was so attractive!

I grew 2 1/2 inches during surgery. How bout you? Of course now I'm shorter than I was before the surgery!

So, William, if you'd like to talk more about your/our counseling experience, you could email me @ camille14@alltel.net


Camille

[melsnapp]

Wow, can I relate to what everyone saying!

Linda-I definitely understand your point about SSDI. I'm sure there are a lot of people who take advantage of the system....which is really sad. I thought you said it very diplomatically.

Camille- Boy, do I relate to what you're saying about the shame. I get so mixed up with guilt, shame, and question myself. It's really crazy. In fact, when I read Linda's post, it made my stomach cringe and I felt guilty!! However, I know that I am deserving,as well. It's unfortunate that there's such a stigma about SSDI. I'm also curious to hear your story...what's going on with the pain right now and do they know what is causing it?

Danite-do you ever feel that way? I mean, feel shame or guilt about the SSDI thing?

Good luck to all!
Melissa

[SkiAnn]

Hi there,
I'd just like to share my experience with meditation. I guess Irmb jogged my mind abit, perhaps I didn't think it would be well received. But for whatever reason......:>).... I had a friend of mine, very well versed in different types of meditation give me instructions and guide me through the first few experiences. In my case it was well worth the time. It doesn't completely eliminate the pain, but helps greatly. I still take pain medications on occasion but since I started meditating I've cut the meds in half. It's not a cure all and not everyone is successful with it; however, I strongly recommend giving it a try. Also, on some occasions it doesn't help the pain directly but it really helps me deal with the psychological effects of chronic pain.
Good Luck,
Fondly,
SkiAnn

[spincon58]

Hi,
I don't know if this helps but I was approved for SSDI maybe 10 years ago..It was because of my scoliosis and pain related problems..I was easlily approved when I had depression b/c of this..they sent me to dr.s and I recived payments..since I did not work so much when i was young I get very little...but anything helps .....

[Camille]

Hi Melissa. Thanx for validating the whole shame thing. I appreciate your honesty. Wonder if we'll always struggle with it. It'll probably get better....I hope.

And thanx for asking about my current situation. I'll try to put it in a nutshell. Despite the fact that I have a lot of dislodged and broken hardware in my back, (due to years of minute movement from an incomplete fusion at the top and bottom), the doc says it's the 3 discs/vertebrae (in my lower back that are basically worn out), that are causing the pain. I am fused to L-3. Just below the fusion, the disc has completely collapsed and looks like bone overlapping bone. The other two have partially collapsed. Another problem is that the base of my spine starts out curved and rotated, which has only aided in the progression of deterioration. So, they want to fuse down, most likely to my sacrum to prevent further nerve damage. The doc did admit that it should be put off for as long as I can stand it.

My leg pain and weakness responded well to weight loss and physical therapy. Not to say, it never bothers me. If I stand or sit too long, it gets activated. My lower back has always been the primary site for my pain. However, now, I'm having pain above the top of my fusion, which extends into my neck, shoulders/shoulder blades. I feel sure that regular massage would be very helpful. However, I financially can't pull that off right now. That's a dream for the future. Think I oughta marry a massage therapist??!!

Thank goodness for our ability to laugh at ourselves!!

Camille

[LauraH]

Your Pregnancy Question

Before I got pregnant, every doctor told me that there was no reason I shouldn't. They all said the rods/scoliosis would have NO impact on the pregnancy. The OB, Surgeon and PCP all said I would be fine.

I had terrible pain starting at about 4 months. I went to a high risk OB, who put me on pain meds that would not hurt the baby ( I can't remember for sure, but I think Tylonol/Codine). They have done studies on all kinds of pain meds that are safe for preganancy. I also went to physical therapy 3 times a week.

They physical therapist explained it like this - when you get pregnant, your body releases a "loosening hormone" so that your spine moves a bit to make room for the baby. Since my spine couldn't go anywhere, I was all belly very fast. Also, because of the hormone, it didn't have anywhere to go, but to the parts of my spine that weren't fused. The top of my neck and my pelvis were getting all the hormone. My pelvis kept twisting and there is nothing to do to stop it. They can fix it during physical therapy with massage, but it doens't last. It feels good temporarily, but kept twisting back. My worst pain came from sitting, so I had to say laying down to have back comfort, but that isn't always comfortable when you are pregnant. While my OB and the therapist agreed it was from the fusion, the surgeon emphatically denied any correlation. They said I should have an easier time. I don't know why they "lie" like that, but it was very tough on me and my husband. Luckily, we didn't have other kids, because there was no way I could care for another child during that time. Because of these problems, I will not have another baby.

I ended up having a c-section 2 weeks early, because the baby was pretty big. There was NO WAY I could have pushed. I have to say that I never felt better in the 10 years since my surgery when the baby came out. My pelvis went back to normal and I felt GREAT. So, for about 6 months, it sucked and then it was wonderful and so worth it. There were no side effects from the pain medicine as they are classifed by risk to the baby. Any OB or pain specialist can look up the classifications. However, once I started having to carry the baby around, it all went downhill again. That is something to really think about. I don't know if I am the only one, but I have a hard time carrying a gallon of milk, so the baby/ the car seat and now as a toddler, it is really painful. The little day to day things that people take for granted really take a toll on me. I am the primary care giver for my son and only work two days/week. There are days when I have had to call someone over because I can't pick him up for diaper changes and can't put him in the car seat, etc. The only thing that keeps me going is that it is all temporary. He is walking everywhere now, up and down steps, etc. I taught him to use a step stool to climb where I would normally have to pick him up. I guess with any parent with a disability, you just figure out a way to get through the hard times. They don't stay babies forever, so it really is a short period of time in the scheme of things.

I am made to feel like I am the only one who has had these problems by my surgeon, so maybe it won't be as bad. They say they have never had a complaint from a pregant woman. (I will never know if that is true, do they want to make me feel crazy on purpose???) I will say though, I wouldn't change it for anything. It is all worth it, because there is nothing better than being a mom. Expect the best, but prepare for the worst. And, I would recommend going to a high risk OB/GYN because mine said he got alot of patients with rods/scoliosis and pain issues.

Hope this helps and doesn't scare you off. If you have a supportive husband and family, you can get through it. Is is blessedly temporary!!

[LindaRacine]

Hi Laura...

As far as I can remember, you're the first person with a long fusion, whom I've heard had significant pain during pregnancy. I'm sure you're not crazy. There's probably just something about your fusion that makes things different for you. You're just special! :-) (I often tell people that I have a SPECIAL back when I get tired of explaining why I sometimes walk like I'm in pain.)

Regards,
Linda

P.S. By the way, I've communicated with LOTS of people who had children after their fusions.

[LauraH]

I have Cotrel-Dubouseey rods fused from T4-L3 if that means anything to you. I don't really know what that means, but I think the CD rods are better than harrington??