Matter Over Mind

[farokie]

I was diagnosed with Scoliosis/Digenerative Disc Disease at the age of 48 yrs. The four following years, I've experience a steady increase in pain. I've was lucky enough to go relatively pain free until about a year before the diagnosis. Always very active in my job as Methods for a large mfg. company as well as exercise. Since Methods involves a lot of walking, I found myself struggling to make it thru the day/week, and started to devote more time to office projects. As the DDD has progressed, sitting/standing/walking have become so uncomfortable I was somewhat relieved to be laid off recently as our work was sent out of the US. All that said, I'm anxious to hear.....

How do you deal with a mind that is still very active, and a body that refuses to participate?

[CHRIS WBS]

From one Illinoisan to another, have you been examined by an adult scoliosis specialist? I've pretty much been told that I can expect what your experiencing if I don't have surgery. The most recent surgeon I saw told me that one day in the not too distant future, I'm just not going to be able to stand up. It's dreadful, isn't it?

Chris

[farokie]

So far, I've only seen Orthos and Back Specialist. Have an appointment in April with a specialist in Chicago (DeWald). Hopefully the specialist will offer more encouragement than the previous doctors. Do you have trouble sitting as well?

[CHRIS WBS]

For the most part, I can sit comfortably. But that wasn't the case a couple of years ago when supposedly my spine was shifting and left me with the sensation that it was collapsing. I could not sit, stand or function. Then I rebounded and have been pretty much okay. I can't stand for too long however without having to lean against something. This week my whole body aches with this cold snap we're experiencing here in the midwest.

Good luck with your upcoming appointment with Dr. DeWald. I have seen his associate, Dr. Hammerberg.

Chris

[farokie]

So glad to hear that you are having a relatively good stretch of time since the collapse phase. Cross your fingers on my DeWald visit. How was Hammerberg?

[CHRIS WBS]

I've seen several surgeons in Chicago who have recommended surgery and then go on to tell me that Dr. Hammerberg is excellent. Dr. Hammerberg however has never recommended surgery for me. I think his position is that, given the magnitude of the surgery I would require, unless I'm in excruciating pain and cannot function, it's best to put surgery on the back burner.

Chris

[farokie]

Thanks for the info! All doctors to date, have told me to avoid surgery. As one told me, disc repair would start a "domino effect" that couldn't be stopped. Explaining that the correction would place additional stress on adjoining areas. Since they weren't scoliosis specialist, I'm really anxious (and dreading) DeWald's thoughts.

Thanks for the chat......sometimes, I think we all just need to know that we're not alone in all this mess.

[Karen Ocker]

Waiting for things to get terrible before considering surgery??

My humble opinion after what I went through: A surgeon who says wait until the pain gets terrible to have surgery is a nut case.

Why? because help is available to avoid such a situation. Why lose jobs, go on disability and become poor when it can be avoided?

When someone waits until they are crawling on the floor into the surgeon's office before getting help, that person goes into surgery deconditioned, with a larger curve, needing a more extensive fusion and gets less correction.

In my case pain was not the predominent sympton; progression and deformity were. My surgeon said: "it will get worse". I thought it was bad enough.

Was I scared? Of course. I prayed every day for courage the 3 month before the surgery day. That fear was tempered with the hope and gratitude that help was on the way for me.

[CHRIS WBS]

Karen,

I don’t necessarily believe this surgeon is a nut case. My humble opinion is that he just does not want to do my surgery. I recently spoke to a woman who consulted with this same surgeon and was recommended surgery on her first visit. But while her curvature is as severe as mine, she is ten years younger. And this brings me to an earlier thread I posted wherein I ask, “when does it become necessary to go out of state for surgery?” I think it can indeed become necessary once you are over 50. I believe there are only a select few surgeons in the country who feel comfortable performing surgeries on people over 50, and my guess is most of them are located on the east and west coasts where surgeons seem to take a more progressive stance. Because of the heightened risk for complications after age 50, most surgeons do not want us older folks for patients. I’ve been in touch with the woman who heads the Chicago Scoliosis Support Group chapter who is scheduled to have surgery in April. She is going out of state because she could not find a doctor in Chicago. She is 60 years old. And quite honestly, after being told that I am at a higher risk for paralysis going into this surgery and then hearing about the tragic loss of Trudy, I’m not sure I can even proceed with this surgery, and especially since going out of state would just be too problematic for me.

Chris

[debigolebiwski]

Chris, I agree!

I am 49 and I have also been told to avoid surgery. I was told that I faced a serious chance of paralysis worse than I will have without surgery. I was also told that I would eventually be unable to walk. I have days now when it is very difficult. I suppose we are all here for the same reason...just to see what others have been told...to find out that we are not alone with this crzy twisted disease. I wear a body jacket now to try to prevent the curve from worsening but there are days when this thing hurts severely because I can feel my body twisted more and not fitting in the body jacket like it should.