Hi, I'm new and I need help.

[melsnapp]

I had my original surgery in 1989, with CD instrumentation. In 1997, I had all instrumentation removed....due to pain. I am now 27, and my pain continues to increase and increase. I have 5 bad discs, a few above and a few below the fusion, have facet joint syndrome, as well as various soft tissue damage. I have pain going down my right arm and my right leg, and pain of course in my neck and back. My ortho doesn't want me undergoing any more surgery right now on the discs, because they'd have to replace all 5/6 of them, and I'd still be in pain because of the other stuff.
I am currently not on any meds right now because I am trying to get pregnant, and of course am fearful of engangering my child with the medications in utero. However, the pain is just awful, and my mobility is terribly limited. I really want a child. I've tried chiro, PT, acupuncture. My questions are 1) can anyone tell me about their experience being pregnant with all of our complications, and 2) does anyone have any other advice on how to deal with the pain without meds?

Thank you so much for helping out!

[Danite]

Boy do I hear you loud and clear, I received the first experimental fusion in the State of Michigan in 1954. My spine was 80% fused with no hardware of any kind, at my age of 54 I am no longer able to work full time or sit or stand for any length of time. Without adjustment or a combination of the above. I have also started with Vicodin that sometimes limit the leg stimulation or leg jerks.
I wish I could tell you how to manage your pain, but over the years I have adjusted to the pain myself. Now I have just recently applied for SSDI and presently on medical leave from my sedantary position.
Of course the specialist and surgeons are eager for surgery and hardware but I have had enough of the medical model. Besides at my age and physical abilities right now, I will handle it in my own way.
I sleep only six hours per night if I'm lucky, and again just keep changing positions all the time. It is very frustrating, but I did have a daughter with a deformed back, called Klipel Fiel sysndrom (sp). I sometimes wonder if I was the caused of it, but I love her so much and she has given me so much in return. She is now twenty-two years old and working. She does have a rod in her back and has a very noticable curve. But my other daughter was born without any birth defect, I'am not resentful nor do I wish she was not born. In fact, because of her, I must continue to fight and be strong, I will not have further surgery and I will not give up. God Bless
Bill

[melsnapp]

Thanks for your reply, Bill. I'm in the process of applying for SSDI, as well. I am so nervous about getting it....I hear that they often reject people. I can't hold a job....it's just too hard. I keep telling my husband, "if I could just find a job where I don't have to sit, stand, walk, or use my arms very much, that would be perfect! =) But really, there is no such thing. I'm sorry to hear about your daughter. I hadn't even thought about the genetics of it...I was just worried about birth defects because of medication while I'm pregnant.
Wow. Well, good luck with your situation!

Anyone else out there who has been through pregnancy with a back like ours? Most of my doctors have scoffed at me and think I'm crazy for even trying.

[Danite]

Never say never and keep fighting for your rights, I know applying for SSDI is scary. It seems that many individuals do get it that shouldn't and the ones that need it the most, of well.
Please keep in touch and let me know when you hear about SSDI, it would be interesting to find out how many individuals with our type of disability do get it.
Like I said, I did go back to school and got a degree for a sedentary position but the sit, stand and of course walking is history now.
It does take longer for SSDI and it depends on your state program, in Michigan it is usually between 4-6 months. I hope it does not take that long for you or me. I was working and now receiving Short Term Disability Benefits that I'm fighting the insurance company for, they seem too think that I'm not disabled. What a joke, wish I wasn't but I can not let that get me down and I won't give in. Besides the medication, MRI, and surgery it obvious something isn't normal. Besides my curvature sticks out like a sore thumb, I will keep you in my thoughts and look forward of hearing more about your fight.

[lrmb]

Hi there,

I'm so sorry to hear about all your pain.

I've had one year of almost constant pain due to disc injury, and one thing that helped me (with and without drugs) was learning meditation. I went to a class run by my health system, which did a gentle kind of meditation that involved lying down and doing "body scans" and also sitting and walking. There were always specific directions for people dealing with pain, and although it was hard at first, it really helped me relax and almost get some distance from the pain.

I know it sounds like a long shot, but it really helped me out, and I know there were others in the class dealing with pain who thought so too. You might try and find out if there are any classes in your area. Otherwise, if you email me at lrmb24@hotmail.com, I will try and send you copies of my tapes to listen to while you try meditating.

Good luck, and keep us updated on your progress.
Laura

[melsnapp]

Bill,
I will definitely keep you posted about the SSDI progress, and I hope that you'll do the same. We just have to keep our fingers crossed and hope for the best, right?

Laura,
Thanks for writing, and for your support! I haven't tried meditation, although I do pray a lot, which is a little similar, right? I've also done a lot of stress management and breathing exercises. I'd be interested to hear more about the meditation. I just got a new dr appointment for next Tuesday to try to get a referral to a pain clinic. I don't know why I've been so stubborn about going there so far, however I think I'm finally humble enough and in enough pain that I'll go and see what they have to offer. Maybe they'll have a meditation class there! I'll keep you posted! I'm just kinda at my wits end.
Thanks, again!

[suejeryl]

you are so young to be in so much pain all the time! it doesn't sound like my back problems are nearly as severe as yours, but i do want to let you know that i managed to have a healthy pregnancy and delivery despite a severe and progressing lumbar curve plus continual back, leg, and arm pain. walking was difficult starting at 12 wks; lying down kind of paralyzed my legs and made my hands go to sleep! i managed the pain with weekly chiropractic; i was in good shape before i was pregnant; i don't suffer respiratory problems from my scoliosis; and i didn't gain too much weight while i was expecting; i think all that helped. my pregnancy definitely increased my pain long term; i haven't had a "break" in 9 years! what does your dr. say?

[melsnapp]

Hi, Sue! Thanks for your reply. Yes, it's hard to be in so much pain all the time, but I'm sure you understand! As fas as pregnancy, my PT and my physical medicine doc thing I'm nuts. They think I should wait a while. However, my primary care physician is awesome, and totally supportive. He knows that it will be hard, but he totally wants to help me every step of the way. I guess the way I figure it....I've gone downhill so much the past 2 years that it's probably only going to get worse. So I think I'm better off doing it now while I am at my "best". Plus, it feels right, do you know what I mean? =) Thank you so much for your input, as far as how your pregnancy went. I'll keep you posted if/when I do begin that road!

Wow, I noticed on your signature that you are preparing to have surgery! Good luck! Are you having instrumentation placed?

Melissa

[suejeryl]

hi, melissa! yes, in just a month (wow!) i'm having a fusion from t1 or t3 through s1 and they'll put in whatever instrumentation is required. our family life revolves around my back pain and i need to try to fix that. good luck with your family plans...at least your doctors have opinions on the subject. no one i consulted on the subject 15 years ago would give a yea or nay; they all just shrugged their shoulders! i think much more is known about adult scoliosis these days; i remember being told 20 years ago that despite the pronounced "s" curve in my spine i couldn't possibly still have scoliosis because it's a pediatric condition!

[melsnapp]

Wow....surgery next month! Is this your first? Hopefully it will improve your state of living...that's really exciting! They've come MILES since they did my original surgery in 1989, so I'm sure they've got some great new instrumentation/procedures! Please keep us posted, I'm anxious to hear how things go. That's stinky about your docs just shrugging their shoulders. I had a similar experience, for about 10 years after my original surgery the docs told me that it was "phantom pain" and that they couldn't find any problem. Then I finally found a good doc, who found about 8 differetn things going on that were causing me pain. Duh!!! =)

[Camille]

I'm new to this site and wanted to share my experience with SSDI. I had my surgeries to correct scoliosis back in 1984 via Harrington Rod and Dwyer Instrumentation. I've had pain every day since then. However, I was able to manage it up until about 2 1/2 years ago. Due to the pain and Depression, I ended up having to quit my job (Bill, I'm an LPC too). I applied for SSDI back in Sept. of 2002. Here in Georgia, it takes a lawyer and a lot of patience. I just got approved! Yeah, haven't seen the $$ yet, should be this week sometime. I just wanted to give ya'll encouragement to hang in there and keep trying even if they deny you a few times. Bless us all.

[melsnapp]

Wow, thanks for your post! That's amazing that you have to get a lawyer to even attempt to get SSDI. This weekend I have two SSDI physical examinations to go to. Any advice? I'm so nervous.....I guess it's frustrating because it's totally out of my power. But.....I just need to have faith, right? Congratulations on yours finally going through...that's just awesome! Please keep me posted!

Melissa

[Camille]

Hi Melissa, thanx for responding. Let me correct something I may have implied. Here in GA, ya don't Have to get a lawyer to apply, it was just Highly recommended. It sux that cha have to give 'em 25% of your back-pay, but I think I would've gotten too discouraged and given up if I didn't have the lawyer explaining things to me. The whole process for me was very discouraging; the things they write back and say to you, telling you that you can still work, that you're not That disabled. Like they have a clue, ya know. Anyway, it was worth the wait. Hoping to get my check today.
Also, it may seem odd, but I didn't have to have a physical examination. The lawyer told me they may request it, if the documentation wasn't enough, but they never requested one. I wanted to have one, so they could look at my beautiful x-rays!...they are so descriptive in and of themselves. However, I did have to have a Psychiatric Evaluation, I guess because my Depression has been very disabling as well. I have a long history of clinical depression, been hospitalized, been on every medication known to mankind! It has been so much better since I quit my job. Between the stressful job and my constant back pain, I just couldn't function well.
My SSDI approval letter implied that it was what my psychiatrist wrote that made the final decision. Makes no sense to me. It's all about what the doctors write, cause they didn't even see my x-rays. I mean, my back is the reason I can't sit or stand long enough to keep a job. Actually, I guess it's hard to seperate the two problems (Depression vs. Back), they're both intertwined.
Anyway, didn't mean to get so long-winded.
I'm not a big talker, but turn me loose on a letter, and there's no stopping me!
Hope your evaluations go well. Hang in there.
Keep me posted,
Camille

[Camille]

Hi Melissa, one thing I wanted to suggest, (that was suggested to me, as well). I don't know if you're like me, but I have the strong tendency to minimize my pain. If you have that tendency too, let me remind you that it serves no purpose where SSDI is concerned. Minimizing helps me deal with my pain, but SSDI needs to know just how bad it is and how bad it is on your worst days, with NO minimizing. I'm not sure why, but it's really hard for me to be really honest about the extent of the pain, especially talking to someone face to face.
I grew up in the "no pain, no gain, be tough" kind of family, so it's really hard for me to surrender to the reality of the pain. It has served as a coping mechanism, but it has also kept me in denial to the extent that I have sabotaged my well-being for way too long.
I hope this makes some kinda sense.
Camille

[Danite]

Hi Carmille,
In 1990 I lost my original job of over seventeen years because of my congenital disability (Scoliosis, Fusion 1954) no long could do the essential function of the job. After graduating from College I returned to a sedentary position for ten years and worked full time until this year. My fusion is so old and I have no metal or support rod of any kind, it is now just a ugly collection of scares, arthritic joints, spinal stenosis and other wonderful deseases of the spine that I can no longer sit or stand for any length of time. So I have applied for SSDI and expect a fight again, because I did apply back in 1992 but of course I did not have a MRI and my work restrictions did not limit standing or walking...etc. Like it does now. I would like to know more about your LPC.

[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]

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]

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]

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??

[melsnapp]

Good morning!

I had my SSDI physical exam this weekend. It was ludicrous! Seriously, I was absolutely amazed....I just have to vent. The doctor who saw me, bless her heart, didn't have a clue! She didn't know about scoliosis surgery...in fact she needed me to explain what happens. She didnt' know about arthritis!!!! or anything like that. She wasn't playing dumb, she just truly didn't know. I think she must just be a very inexperienced doctor. She felt embarrassed, and said, "I'm not an orthopedist, you'll have to explain these things to me." She even did the diagnostic tests wrong! I was just so shocked that the government is spending their money (and OUR money) to send me to an exam to see if I qualify for disability, with a doctor who truly was clueless as to my condition, or anything remotely similar. Wow. Very frustrating!!!!

As to the pregnancy topic, it's been very interesting to read your posts. What surprises me, is that although there isn't much in the literature that supports the idea that pregnancy may cause increased pain, two of my current docs (my physical medicine doc, and my physical therapist) were VERY concerned about me getting pregnant at this time. I'm certainly not in recovery anymore....it's been 7 years since my last surgery. My regular MD, however, is concerned, but optimistic. He's willing to take every step to ensure that things will be as comfortable as possible.

Laura, I have CD rods, too! =)

[melsnapp]

Sue,

Best wishes on your surgery tomorrow! We'll be thinking of you! :)

[luvteddybears]

Yea someone let me know some hints about SSD? I had Harrington Rods put in back in 1989. Just this March I had to have a piece removed because it was grinding inside. Now I have right hip and leg pain that is so severe that on some days I can barely walk. The pain management doctor says I hve 2 bulging discs as well. I hurt in my neck and shoulder area, lower back, right hip, and right leg. I applied for SSD some time ago but I let the application lapse so I refiled again a 3 months ago. I turned in all the paperwork and haven't heard anything yet. They sent me some more papers to fill out and I did that too. The pain management dr. has been doing numerous spinal injections but nothing seems to ease the pain. I use percocet and morphine cream in the spots that hurt. Any suggestions welcome! Oh by the way I have a lawyer from California too.

[melsnapp]

I'm sorry to hear about your pain. I'm amazed at how similar many of the pain complaints among us are........usually neck and shoulder pain, and right hip and right leg pain. Is that because they usually do the bone graft from the right hip? I don't know....I'm just guessing. I'm glad you mentioned morphine cream, because I've never heard of that...nor have I tried it. Definitely worth a shot!

Take care...and hang in there. :)

[LauraH]

I don't know, after reading the article that Linda posted, now I feel like maybe there was something else wrong all along, and that is what caused my pain during pregnancy. I am going to my Orhto. surgeon tomorrow and am really expecting them to find something. It is possible that something else was wrong (disc problem, scar tissue, loose screws, or whatever else causes pain) and that is what was wrong in pregnancy as well. If you can figure out what is causing the pain before pregnancy (which I didn't), you will probably have a better picture of how yours will go. Again, the pain meds were safe, but that did leave me unable to work/drive, etc. That's a whole other reason for SSDI. If you are loopy from pain meds, you can't get yourself to work and function once you are there. Also, you won't want to be on them once the baby comes. Believe me, you will be foggy enough without drugs, when I have to take a muscle relaxer, my husband is in charge. I have been on medicine for 3 weeks now, and have to get rides everywhere, because I won't drive with my son in the car. Anyway, it sounds like the majority of people don't have a hard pregnancy. I think you'll find it worth it no matter what!!

[Danite]

Hi luvteddybears,
SSDI is a particular long game to play, count on at least three months and possibly longer then five months before you hear anything. Be prepaired to do an appeal, SSDI will usually denie at least 60% of first claims or applications. As the process proceed the percentages improve, so don't be surprise or frustrated by the proceedure. Most attorneys will become more interested in your application as time goes by, it increases their fee or charges. You can surely apply yourself either online or by finding your local or nearest Social Security Administration Office and just wait...I have applied recently again, ten years after my first application because I too let it lap. But I did return to school and a full time position for ten years. Sure won't this time, my back will not let me forget.
Live long and prosper and fight for your rights.

[janiL]

Hello Melissa,
I've just found this forum and have been following this thread with great interest. Wow, we are all in this boat together.
My fusion and harrington rod surgery was done in 1968. I had my daughter in 1976 without any problems. She's now 28 and no scoliosis, yeah. I did yoga every day through my pregnancy and swam and floated as often as possible. No meds, no dental x-rays, super healthy. I did have intense "back labor" that was relieved with a dear friend spooning against my back.
I believe if it feels right for you and you trust your instincts that all will be well.
As for SSD....I think I've had the longest wait in history and they have done just about everything to humiliate and shame me to shatter self esteem.
Every SS evaluator I've seen was completely clueless about scoliosis, and/or acted like God who should not be questioned. They choose docs like that.
Now I'm going to focus on the mental health side of my disability because they seem to respond faster to that. Afraid we'll suicide, maybe?
sorry this is kinda long winded. Just happy to find you all!!
jan

[Camille]

Dear Jan, once again, I can relate to your writings so much....as do we all.
I can truly empathize with the shame, humiliation, and shattered self-esteem that you referred to. And clueless evaluators seem to be very common in many states, from all I've heard.
The psychologist that did my psychiatric eval. for SSD looked like he had been on a week long drug kick with no sleep, so he looked very tired and wired. And was trying to be buddies, ya know, to be cool and talked about things that were totally unrelated and inappropriate. Now I can see humor in the obsurdity of it all, but at the time, I felt de-valued and dismissed.

I will add that I am truly grateful that I just got approved (after a 2 yr. wait). And my lawyer did tell me that having a long history of severe, recurring Depression played a major role in the decision to approve me. For whatever that's worth.

Camille

[melsnapp]

Hi, Jan!

Yes, we certainly all are a very similar boat, aren't we? It's amazing. I'm so glad that I found this site, though. It helps me to remember that I'm not crazy! We're NOT crazy! =)

I'm glad to hear that your pregnancy went well. I'm going forward with it, and having faith that it will work. Not pregnant, yet, though! The waiting for that stinks almost as bad as waiting for SSDI! ;) But it will happen when the timing is right, I know.

Good luck with your SSDI wait. We should even start a new thread entitled "SSDI waiters"...or something to that effect. I'm sure there is a lot to say on the subject!

Take care, all!