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new here. telling my story

bradadadbbradadad Posts: 6
edited 06/11/2012 - 8:51 AM in Spinal Stenosis
In advance. Sorry for the whiny nature of this but I can't think of another way to illustrate my situation atm.

I'm so tired. I have had this stenosis for roughly 8 years that I am aware of. I'm a US Coast Guard vet and use VA. I spent maybe 3 years going to VA in order to get to this diagnosis. It burns and fells like a nife wound some days and like a broken bone and icey other times. The MRIs came up empty handed for a while. Eventually they saw minor stenosis. Now some 8 years later I think they call it moderate. The pain however is not mild or rarely moderate without pain medication. I am surprised that the barely recognizable SS could hurt so bad. The pain is nearly 24/7. Was that way from the start, 8 years ago when they could not see anything. I have gone through a horrible time with the VA and pain management. They struggle to give me meds then they finally do. When they do they flip-flop and don't renew on time. I go through morphine or oxycodone withdrawals several times a year waiting for medication due to their indecision of whether I am worthy or whether they can just get it filled in time. This is taking a great toll on me psychologically.

I know that there are many people in more pain than myself. What I do know is that the pain stopped me from being able to do most of what I value in life including, relationships, simple errands, exercise. Exercise makes it hurt more so I stop. The VA says that they are considering surgery yet I wait and wait. My life is on hold. Anxiety adds to the physical pain so as I write it gets worse. I dream about suicide but really I don't want to. I'm going to try but ...how?

What can I do? Any advice? I can fill in details if anyone needs to know something I'm an open book. I tried to download my health records with their new download service and it was oh so VA. I only got some meager 2 years worth of what meds I take. I'm going to try and get all my data some day when I have the energy to look into it.


  • First let me say welcome to spine-health. The one thing we understand is how patients get very frustrated with the medical system and getting the pain under control. If you are suicidal you need to seek immediate medical help. Please call a suicide help line and ask for help. Here is a number you can use 1-800-784-2433. Please call them.

    As far as your spine issues? What level and what area of the spine are you having issues with? Is it lumbar, cervical or thoracic? There are plenty of members here dealing with anyone of those areas and can help out. We also have other military members whom who know a lot about dealing with the VA and can help out with that as well. But please seek some help for the suicide.

    Once again I just thought I would stop by and welcome you to spine-health.
  • Low lumbar. Feels like a burning knife. Mostly on right. The pain moves around.I have been going to seek help for 8 years so I would not call that new. I feel like i am new every time I see a physician they act like I don't have any documents describing my constant search for help. I can look for my mri and scan and post it but that might take a while. I want surgery bad.

    Thanks for the welcoming though.

  • What kind of surgery do you want? What types of treatments have you tried so far? Surgery should always be used as a last resort, when all other treatments have failed. I think you need to do some research and learn about your condition and what is wrong, and what all is available. There are many members here whom have had surgery and as with all surgery, there are risk. I don't want to ever scare someone out of surgery, but you need to research a procedure, understand what is wrong, and what the odds are that surgery will fix it? When was your last MRI? Of course what was the diagnoses on the MRI, as to what was wrong?

    I think it is important for someone to understand what is wrong with them. When you see different doctors you need to be able to discuss with them what test procedures and diagnoses you have been told to date. Also you need to be able to describe the pain, such as, burning, stabbing, aching, pain that travels to your legs or some place else? Do you keep a journal documenting the pain and what you were doing when the pain came on and what type of pain it is? Also what makes it worse and what makes it better? Those are all questions that doctors will need the answer to.
  • hi, brad. i think most of us have been in your shoes with frustration from various sources, and many of us have suffered from depression as a result of it. tamtam has a very good suggestion...calling the help line will at least get you in touch with someone to whom you can vent, and it sounds like you really need that. counselling has been very helpful to me over the years.

    i would also suggest that you start your own health history with everything you can remember. add all the meds you've been on and note whether you had relief or not, as well as any treatments you've had, when your mri or other tests were, etc..

    i've had stenosis issues for several years, and have felt many kinds of pain; some of the worst is actually muscle pain and spasms....when i can get that to settle down, things can feel much better. i am on flurbiprofen, a prescription nsaid; while it doesn't fix everything, it definitely reduces the pain and inflammation somewhat. i go to physiotherapy twice a week, just to keep everything moving and have myofascial work done, along with acupuncture and trigger point injections when i can. i also have meds for the bad breakthrough pain, but i can't say that any of them are very helpful.

    take care and try to be as proactive as possible; is there a complaint department for va issues? might be time to have somebody help you draft a good letter to them outlining your concerns.

    take care, and good luck.

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