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Old 09-09-2012, 09:38 PM   #1
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Frustrated

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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Old 09-10-2012, 12:11 AM   #2
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Re: Frustrated

Hello Pebblebeach3 -

So very sorry for all the surgery and other serious health conditions you have endured Although my neck problems are nothing in comparison, I do understand how you are feeling. It can all be so overwhelming. Know that you are not alone - this board is a great place for support from others who can relate to what you are dealing with.

I also started seeing a therapist because I didn't know how to be "sick". Being an over-achiever my whole life and suddenly having to learn to accept my new physical situation ( limitations, fears, lack of adequate pain management etc. ) hasn't been easy.

Have you found therapy helpful in dealing with your health issues? (I have not) You said you are limited with activity, not able to get out much and you live alone. I'm sorry, that must leave you feeling isolated and lonely at times. Do you have family or friends for a support system? Someone who checks in with you regularly? I am considering looking for a support group for CP sufferers. Would that be something you might consider? It surely would be less expensive than therapy and connecting with others in similar situations could lead to new ideas for treatments, doctors, ways to deal with our challenges ...

I'm sick of doctors appointments and inadequate pain management too. Today's PM is expensive (injections, RF ablations) - it's just an added stress for me as I have no health insurance.

While I'm certainly no expert, have your doctors tried other adjunct meds that might help with the neuropathy? What about something for the anxiety that goes with this lot in life? I take Klonopin in very small dose, but it has helped with my pain, anxiety and helps me sleep a little better. Are you able to sleep good with all this going on? A good nights sleep can make such a difference in pain as well as overall ability to deal.

With just all the spine issues you have , it sounds like your pain isn't being controlled enough to allow you to "live" more. Have you discussed this with your PM doctor? Isn't is called Pain Management not Suffering Management!?! (sorry for the rant...).

Even though you are feeling frustrated and down right now, give yourself some credit for being such a strong person to have come through all that you have. . Sorry, I don't think I have been much help, but wanted you to know you're not alone! Post here any time you feel the need to vent or need support ... or someone to just listen that "gets it".

((Hugs)) & Prayers

 
Old 09-10-2012, 12:59 AM   #3
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Re: Frustrated

Thanks for the response.

As to the pain I am looking for yet another doctor that help me deal with the pain issue. since my medical issues are so complex I find a lot of doctors not qualified to really deal with me and what needs to be done.

As to therapy I initially started to help me deal with the health issues. But like most of us we all have issues other then health to deal with. I feel right now a great deal of lonliness and have been keeping to myself. I dont have the family support. No one to check in on me daily etc. So not having a support group is an issue for me.

A support group sounds like a great idea. My therapist suggested a support group but it is not specifically for chronic pain sufferers. Sometimes just being in a group, even though different issues, you can sit and talk about what is bothering you and getting the support you need.

I've found that I've isolated myself because I just cant do things anymore, thus I am not dealing with anything anymore.

I really feel as though there isn't much they can do for me medically. they cant cure me. It seems as though the only answer for me is to drug me up enough so that I dont feel the pain.

So much I can say but the words arent there. Part of me thinks that ive survived so much; beat the odds, but outside of sitting here I get frustrated that I cant do for myself anymore. But part of me says dont ever give up hope. It's a matter of hanging in there till I find an adequate answer.

For now I think I will take yoru suggestion and see if there is a support group for chronic pain thru maybe one of the local hospitals.

thanks for listening will keep you posted.

 
Old 09-10-2012, 05:43 AM   #4
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Re: Frustrated

Pebble, what hurts most, your neck or your back?
Were you in a car accident? and are you able to sleep at night with this neck pain you have

 
Old 09-10-2012, 07:18 AM   #5
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Re: Frustrated

My whole spine is affected. And dont forget I have neuropathy in both legs so my legs give me a great deal of trouble as well.

As to cause, it is all degenrative in nature. Not involved in any type of accident that caused any of my spine issues.

 
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