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skoshi314
03-05-2008, 10:52 AM
My CT myelogram is scheduled for next Monday March 10 at 9am and a bone density scan Tuesday morning. By the way, when I called the docs office yesterday, the insurance lady was quite polite. Maybe I just caught her on a bad day Monday. God knows I have my fair share of them!

I'm nervous and excited at the same time about the tests. I feel like I'm finally taking the first big step toward doing something about my scoliosis. I just started this proactive journey last August, but it seems like a looong time. I'm not much of a 'wait and watch' kind of person, more of a 'if I can't ignore it any more, let's do something about this problem' kind of person. I don't know how those of you that have waited several years have done it.

I'm a little nervous about the procedure itself but more nervous about the results. If the outcome shows no problems, I'm going to think I'm just imagining all this and must be crazy. If something indicates surgery is necessary in the near future, I'll have to start the preparation process. Like I said, I'm not a good waiter and probably a little bi-polar. LOL I'm just so ready for a plan of action.

I truly appreciate everyone on this forum. Thanks for always being supportive!

CHRIS WBS
03-05-2008, 04:33 PM
I don't know how those of you that have waited several years have done it.

Itís not easy, but sometimes oneís circumstances in life prevent one from moving forward. If I had a spouse, parent or adult child who I could rely on for help, believe me I would have done something about this by now. At 58 I face a BIG surgery to treat my 80ļ curve. And itís very scary facing this alone. Even though my sister from out of state has offered to come and stay with me for a while, I feel apprehensive. Will I panic when she leaves? When Iím in my house, all sorts of thoughts cross my mind. Will I be able to go up and down stairs? How will I take out my garbage? What if the toilet overflows? Who would I call if I have an emergency situation since my closest family members are out of state? I worry about finances. What if I canít return to work? All of this keeps me up at night. I wonder how many of you who have had surgery can look back and honestly say that you could have managed without your spouse, significant other, parents or children. Iíll bet there arenít too many. Count yourself lucky if you have strong family support; and take advantage of that support to get the treatment you need sooner rather than later because it surely will not get any easier.

Chris

txmarinemom
03-05-2008, 04:52 PM
Chris, having just gone through what you describe (with a completely different outlook), I'm going to share my thoughts:

Instead of lamenting what you *don't* have, you make a conscious choice to move forward and take the options you DO have (your sister, etc). You either decide to put on your big girl face and do it - or not.

That part is pretty simple.

Sorry to be so blunt, but NOTHING gets accomplished by sitting and dwelling on what-if's, negativity and fear.

Not EVERYONE has round the clock support, hence the two MONTHS of planning I did pre-op. I've spent every single night in this house solo since a friend dropped me off (and had to leave 2 minutes later) the day I left the hospital for the last 30 days.

You can pretty much order/have delivered *anything* you need after surgery (food, groceries, even meds!).

It *can* be done. But it starts 100% with your attitude. What's yours going to be?

CHRIS WBS
03-05-2008, 05:02 PM
Pam,

I had a much more "get up and go attitude" too at age 39.

Chris

txmarinemom
03-05-2008, 05:27 PM
That's quite possibly the most simplistic thing I've heard, Chris.

I realize I'm younger than you, but the issues are NO different.

How much planning have you actually sat down and tried to do? If you want to do it, make a PLAN. Are you waiting for someone to come pluck you out of your situation? Trust me, girlfriend, the calvary is NOT coming.

I happen to have a pretty thorough list that I've mentioned several times: If you'd like to see HOW you can make it solo, I'll be glad to send you a copy.

Again, do it or don't. It's your call.

But at some point, the statute is up on lamenting your situation if you don't either take action or make friends with status quo.

Pam

trulyaries
03-05-2008, 05:53 PM
Becky - Good on 'ya for starting your journey. You know we will be here for all of the support and information you need.

Chris: I live alone, have no significant other, or children. My four back surgeries were at ages 57, 62, 63, and 64. Pam's right - it's not the age it's the attitude. Make a plan. You can do it.

scooter950
03-05-2008, 07:07 PM
Hi again! I'm writing to speak about "the other side"-- the procrastinators who get stalled at the thought of surgery!

I really respect all of you who have already had surgical correction, but there's others of us who are still mulling the idea about. I've been thinking about it for almost 3 yrs. now! and not to get too personal, (as if posting a fat naked photo isn't personal enough!!) - well, I suffer from depression too. And I KNOW that affects my ability to think clearly and/or make decisions. Yes, I've had counselling, and yes, I'm on meds - I take Cymbalta religiously! Cymbalta also really helps with my pain. But the reason I'm telling you this- well, there are many other reasons why some of us are not as organized/ positive/ "take-charge" sort of person - as some others really seem to be. I think that's why I admire people who can plan, who take action and are able to pull themselves up by their bootstraps (so to speak).

And even with the cymbalta, I still have pain. So my social life has dwindled to .. nonexistant? Yes, pretty much non-existant. Thank God for the internet and this forum, where I am able to learn so much while seated back in my recliner, pelvic tilt, using a laptop! Just to sit at the desktop PC hurts.

So I can understand how Chris feels, as she thinks about all the barriers to her surgery and recovery. And in her past posts, she said she didn't have a lot of pain. (is that true Chris?). Well the pain is my motivation - this is why I began searching, and once I learned about the advances in surgical correction for adults!!! I became cautiously hopeful. That's a good adjective for me- cautiously hopeful. My mom says I move at two speeds: slow and stop! But - like Chris, I do think about things, probably way too much (me, not Chris). I'm still working on getting a second opinion ( may go with Von reuder (sp) in Austin). Yes TXMM and Truly, attitude is important, and we all face similar physical challenges, but other circumstances in our lives are different. We must be more tolerant of each other- and that's what I love about this forum- there's adolecsents, adults, surgical, non-surgical, - we scoli patients come in allshapes and sizes, with varying degrees of internal fortitude, AND (in my case at least!) varying ability to cope and diminshed resources to help us cope.

As for Skoski - I am happy you have your myelogram appt! And I hope it will not give you a headache. As for your comments about the outcome- I don't understand? I thought the myelogram was done to help identify the internal landmarks of your spinal column, what outcome were you referring to? I can't imagine the myelogram results revealing that surgery wouldn't help your pain! And you sound so positive and ready to take action! God bless you! I will check back to see how you did next week!

and Pam, I wish I could follow your example! I love reading about your recovery because you give me hope that I can do this too. With goals of returning to work. But when... ah! when? Even I can't answer that yet. But sharing here, in this forum, is so nice. Please accept me with my limitations-

OK ok I'll sign off. My procrastinating, slow poke, worrywart self,
Jamie

Singer
03-06-2008, 08:52 AM
I think Jamie makes an excellent point. Not all of us are blessed with Pam (and others') feisty, up-and-at-em attitude, but still we are slogging through the best we can. I am not in any way begrudging Pam her relatively quick recovery (which of course is not always so easy); I'm genuinely happy for her. I know it took me two full years to screw up the nerve to have the surgery, and even then it came down to a leap of faith. Eventually you really do get to a point where you have to s***t or get off the pot.

I would not have made it through the first 3 months without my husband -- the temporary nerve damage in my left leg left me almost helpless. I was in excellent physical condition before the surgery -- I did pilates and fast-walked 3 miles a day for months. I did really well with the systemic part of the surgery -- I bounced back from anesthesia and my appetite came back quickly -- but nothing could have prepared me for the excruciating pain and extreme weakness that I had in my leg for 3 full months. I think my circustances were unusual and according to Dr. B, a direct result of the anterior incision (even with the best of surgeons, s***t happens). So Chris, if you're having posterior-only surgery, chances are really good that you will have a better time of it than us A/P patients.

And don't forget that when you do live alone, insurance will pay for the extra help you need post-op, including visiting nurses, OTs and social workers. Something like this needs to be taken day by day -- you make all the plans you can, and deal with each issue as it comes up.

I have spoken. :cool:

skoshi314
03-06-2008, 09:37 AM
Becky - Good on 'ya for starting your journey. You know we will be here for all of the support and information you need.
Thank you so much! And yes, I do know you will all be here. I feel so blessed to have a place to come and be able to get that support and to gain a wealth of information from others that have experienced these things first hand. Bravo to everyone!

skoshi314
03-06-2008, 10:04 AM
As for Skoski - I am happy you have your myelogram appt! And I hope it will not give you a headache. As for your comments about the outcome- I don't understand? I thought the myelogram was done to help identify the internal landmarks of your spinal column, what outcome were you referring to? I can't imagine the myelogram results revealing that surgery wouldn't help your pain! And you sound so positive and ready to take action! God bless you! I will check back to see how you did next week!
Hi Jamie!
You know, it just me being my paranoid self. It's my understanding also the test is done to 'map' the nerves and help identify problems. When I was growing up, I was told I was wrong so much I believed I was ALWAYS wrong and never trusted my own instincts, and unfortunately I've not completely overcome that. I tend to look to others to validate my decisions or to make them for me, so without concrete evidence that there's a problem, I assume I'm wrong. I am learning to trust myself but you'd think by 45 years of age I'd have moved on completely. Maybe my scoliosis is a vehicle given to me to learn these lessons. Wow, maybe a little too deep for a Thursday morning, huh? Sorry for the verbal diarrhea, but that's the explaination for my concern.

Thank you for the nice words! I am soooooooo ready to take action, it's just a matter of when. I'll definately post next week. I'm assuming I won't know the results until I go back to the surgeon on March 27, but maybe I can get something preliminary from the docs next week.

trulyaries
03-06-2008, 10:28 AM
I am not quite the strong positive charge-forward person that Pam is. Close, but not quite. I'm a little more deliberative and spend a lot of time thinking things through (please, Pam, don't take that wrong - we all have evidence of how you thought things through for your surgery!). So I understand a little better what Jamie has said, in that she knows she has other mitigating medical factors that have to be dealt with and she is thinking them through. That's the right approach. Chris WSB seems (sorry if I'm being unfair) to be focusing on too many things that MIGHT happen and then throwing her hands up in despair that they can't be solved. Perhaps a good exercise might be to write down each time she thinks of an "insurmountable" problem then find quiet time to think of possible solutions to what seems to be insurmountable. For instance, "take out the garbage" - that will too heavy. Who can I get to take out my garbage for me?

As my family and friends get older and face medical or other challenges, I find myself more and more impatient with "there's nothing I can do." I believe there's ALWAYS something you can do. It may not be perfect, it may not solve the entire problem, it may turn out to have not been such a good idea, but at least you DID something. Ironically, to decide NOT to do something is in itself doing something - however, if that's the decision that is made, then I'm not crazy about listening to complaints about the problem afterwards. I have occasionally had dear friends be just that harsh with me - "quit whining and do something. And if you're not going to do something, I don't want to hear about it anymore." Am I getting too philosophical here?

We can all be supportive of each other on this forum, and I think we can be helpful to everyone working through their challenges. But it has to start with you. And if you don't take advantage of all of the practical information and the hundreds of excellent suggestions contained in the threads on this forum to try to work through your own problems, then ... I don't know what more the forum can do.

I hope I'm not fanning flames here; that's not my intention and I hate when threads deteriorate that way. I'm just trying to bring some reasoned analysis (I hope) to the discussion.

txmarinemom
03-06-2008, 01:20 PM
Maybe my scoliosis is a vehicle given to me to learn these lessons. Wow, maybe a little too deep for a Thursday morning, huh?

FFF, no worries, babe. I understood exactly how you intended that. And thanks for knowing my weak spot and making sure I "got you" - LOL.

As far as scoliosis/deciding on treatment/surgery, I agree 100% this can REALLY be a life-changing experience. I know I've said it before, but it changed me, my thinking on a lot of things, raised my social consciousness (which I *thought* was decent before), and even made me reevaluate what I want to do with my life career-wise ...

Not too deep at all, Becky.

Yeah, surgery is a big decision - and no walk in the park. That said, I'll never regret it because of all the positive mental alterations.

Regards,
Pam

Suzy
03-07-2008, 10:36 AM
Hey Becky good luck next week! I will keep you in my thoughts. I had the same feeling heading into my discogram that I was finally taking my first steps toward doing something, getting closer to my new life. Attitude is EVERYTHING!! It is empowering to begin this journey

Those of you who have been on this site since I joined might know me for my pro active outlook toward surgery. I knew my scoliosis wasn't going to get better and my pain wasn't going to go away all by itself. From the time I found out I needed surgery to help me, till I had my surgery it was about 5 1/2 months. My PAIN was the motivator. (As well as all the research I did.) It really gets me, the complainers who have been on the forum (Some on and off for the past 2 1/2 yrs.) going on and on about their pain, and not doing anything about it. EVERYONE can find a way IF there is a will. Your glass NEEDS to be 1/2 full not 1/2 empty. Everyone is scared at one point or another facing this surgery. I can't help but wonder if this type of person just needs attention and the "woe is me" attitude works the best for them.

Well said Chris! "S**t or get off the pot." I remember you being nervous about heading toward surgery but I don't remember you looking for roadblocks. I have always been the type of person who has told others if something is wrong don't just complain about it, DO SOMETHING. Congrats on your milestone, I think! LOL! Kidding, getting back to normal duties is a good feeling. Even if it is laundry....

skoshi314
03-07-2008, 10:46 AM
Thanks everyone for the good wishes! I'm so ready for this move forward.

I did find out I'll be given 'conscious' sedation. YIPPEE!!!!! Man, I'll do anything for a day off work!

Suzy, empowering is a FANTASTIC word! Yes, it is empowering to take a big step forward.

Thanks, ya'll!

Susie*Bee
03-07-2008, 03:29 PM
I'm so glad you feel good about this step in your journey, Becky. Hooray for you! I think you'll find each hurdle is hard at the time, but brings a lot of relief as it's passed. And you're well on your way! :D I'll be thinking of you too next week.

Now a comment on some prior posts... everyone needs support on this forum. Some have an easier time of accepting their situation and moving forward than others. That doesn't mean they are better people than those who drag their feet. Fears, no matter what type, and whether they are grounded or not, can be terrifying. As far as a single person with very little support system (as far as they know) looking at the possibilities of this surgery, it is understandable how that could be quite frightening. That is when we need to bolster that person and be supportive-- and let them take as much time as they may want/need in their decision making. This forum is for all scoli people, whether we see eye to eye with them or not. Or at least that is what I'd like to say at this point. I for one would rather show patience than intimidate someone into not posting when they need to express their fears or are searching for encouragement. "Nuff said.

txmarinemom
03-08-2008, 12:51 AM
I'm unclear how anything above could be interpreted any as "intimidating someone not to post".

I didn't intuit that at all.

Pam

Susie*Bee
03-08-2008, 07:16 AM
Pam-- most of the comments regarding Chris were constructive criticism with suggestions on how to overcome her fears. Those were supportive. However there were a couple of comments that weren't in that same mode. If they were directed at me, I would have felt "intimidated" not to post any further about my problems. That is all I meant. Maybe I looked at them in a different way from you. And it's quite possible I misinterpreted what was being said.

txmarinemom
03-08-2008, 08:17 AM
Susie, sometimes "support" isn't just patting someone on the head and saying "there, there". I'm an extremely poor enabler.

In this case, the *support* was encouragement post surgery issues *can* be managed, but you have to examine your options positively, make a plan, and not what-if yourself into throwing your hands up it's ALL impossible without even an attempt to solve the issues individually.

(BTW, if your toilet backs up post-op, you call a plumber - just like always. If you are worried about caring for yourself after your round the clock care giver leaves, arrange for home health care.)

Jamie, you're new to this game ... and face a completely different set of challenges. You're cautiously, but positively trying to move into decision mode - or at least thinking about trying to move into decision mode. The best thing you have going for you is a great outlook (scared is fine ... we all were ;-).

Regards,
Pam

Susie*Bee
03-10-2008, 12:59 PM
Becky-- I've been thinking about you today and wondering how it went this morning. Let us know when you get a chance.

skoshi314
03-11-2008, 02:22 PM
Becky-- I've been thinking about you today and wondering how it went this morning. Let us know when you get a chance.
Thanks so much, Susie*Bee for checking on me. It makes me feel so good to have friends that care so much!
I was treated to a bone density test, myelogram and a CT. What a morning! The bone density and CT were quite uneventful, but the myelogram, well, I'm glad it's over. It wasn't horrible, but pretty uncomfortable. The radiologist that I saw and who did the test was really great. He talked to me and my husband for quite some time, taking a history and asking very specific questions about type and location of my pain. I did learn I have vertebral compression fractures in my thoracic spine. News to me! I'm going to start a thread asking for any info anyone would like to share. I've called the radiologists office asking for more info from them, so I guess I'll have to wait and see what they say.

Susie*Bee
03-11-2008, 02:36 PM
My, you've really been through a lot! I don't mean just the tests-- but getting that news too. I don't know what all that means, so I'll look forward to reading about it also when you start that thread. At least you got a nice radiologist. :) I'm so glad that this part is behind you and you are ready to tackle the next step. Keep us posted!