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Spinal Cord Disorders Message Board


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Frustrated
Sep 9, 2012
Hi all. I'm sitting here thinking of what I want to say. Yes I'm frustrated with the events in my life and I guess I was just looking for some support. And I know I am not the only one here that has been thru a lot with health issues.

But I go thru days of not knowing how to handle things any more.

First my history:

1. 1988 IVP for kidney stones; discovered that the problem was not kidney stones; but that I was born with one kidney; Turned out that the cause of my pain was bulging discs. Went into traction for 2 weeks and physical therapy;
2. 1994 lumbar surgery for hearniated discs;
3. 1995 cervical stenosis, foramen for stenosis;
4. 1997 lumbar surgery for "flatback syndrome" harrington rods implanted;
5. 2000 cervical surgery for "cervical kyphosis" harrington rods from C3 to T4, 4 months in cervical collar. Turned out to be a 2 day surgery; total surgery time 12 hours;
6. 2003 ended up in ER; then admitted, diagnosis Diabetes blood sugar over 1500; blood clot in left leg; surgery done; they saved the leg but was told amputation was possible; went thru kidney dialysis; the one kidney I have is now affected. No one expected me to walk out of the hospital
7. 2006 SCS implanted
8. 2007 Pancreatic cancer surgery. I was told due to the type of surgery, doctor had to tell me that there was a chance I wouldnt survive the surgery
9. 2011 SCS removed

CURRENT ISSUES/COMPLAINTS:

EMG showed severe nerve damage in the cervical and lumbar spine;
severe arthritis in the cervical and lumbar spine
peripheral neuropathy probably a combination of spine and dieabetic neuropahty

severe numbness in left leg; now the right leg is getting numb on me
neck shows per MRI myelomalacia. Weakening of the spine. I get radiating pain into the shoulders; left more then the right. pain etc.

I know there is sciatica issues but since I have Harrington rods in lumbar area I cant get a good reading; rods obstuct the views.
I CANNOT have contrast for better results due to the kidney issue and failure. The contrast can have negative impact on the kidney.

Yes I have kidney disease and just waiting for the day when the disease progresses.

Currently I am on Hydrocodone and Tizanidine. It may take some of the edge off as to pain. But my legs are real bad as to the neuropathy; numbess. At times my feet really bother me in that it feels like my foot turns to stone. I have balance issues. I have not fallen as of yet but worries me that one day I will and I live alone so it scares me.

My neurologist who gave me RX for pain gave diagnosis of Chronic Intractable Pain. From what I breifly saw it basically means that there are no or very limited treatment options left.

My neurosurgeon is concerned about the Myelomalcia. He doesnt want to touch me surgically for several reasons: 1. risks due to kidney and diabetes to put me thru surgery; but the real big concern is to get to the neck he would have to go thru the Sterum. This he says would be a surgical nightmare to do on me.

So here I am. I survived when I went into the hospital and the DX of diabetes. Lets face it with a blood suger of 1500 plus I am lucky to be alive. I was lucky that they didnt amputate my leg from the blood clot. I risked my life more then the normal risks when I went thru the pancreatic surgery. I walked away when most probably wouldnt have survived.

But I am frustrated in that even with the pain meds I am not functioning. I do a little then find I need to get to bed. I cant go out all day to enjoy the fresh air because I get tired or the pain kicks in. I cant travel far from home for fear of pain etc.

I am in therapy. Initially I went in see someone to deal with the health issues. But we are talking about my entire life. I feel stuck. I feel how can I lead somewhat of a normal life at this point.

I get tired of doctors appointments. I just need some support in dealing with this and knowing that I am not alone. I know a lot on this site are probably suffering the way I do and am.

I am religious in that I feel uplifted in the power of prayer. But it is so hard to do this alone and to try to remain optimistic or hopeful.

Any suggestions or words of wisdom. I just really needed a shoudler to lean on at this point.

Thanks for listening.





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