what to do next?

[aingram18]

hello, my name is ashley and i am a 23 year old chronic pain sufferer.  i have been having problems with lower back/rt hip and leg pain.  i have done PT, ultrasound, epidural injections, countless medications, and have had 3 surgeries, the most recent of which was to have a dorsal column stimulatoe implanted.  now i feel i am in a worse spot then when i started. i have pain all the time in my low back and rt hip and intermittently down my right leg. the stimulator has long since been non functioning because after falling a couple of times, it gives me no relief, so right now i am on a long acting and a short acting medication schedule for pain. i cant work, it is hard for me to do things with my 3 yr old son and i feel like i have no life other than attempting to manage my constant severe pain. something needs to change, but no one knows what to do next. due to the stimulator, i cannot have an MRI and a CT cannot see the soft tissue like it needs to be seen. what should i do? i cant live like this anymore!

[Tuckamore]

Apparently it has been in for sometime in order to cause significant scar tissue?  I certainly cannot make a decision for you but I personally beleive I would have try to have it surgical removal. I would make sure that I had a surgeon that I trusted and one that was considered the best.

Rather you decide to have this procedure done or not please discuss your medications with your prescribing physician. There are narcotics and other meds that can reduce your pain and make you life more bearable. Sometimes it take a heart to heart talk with your physician to aid him/her in understanding what you are experiencing. Don't ever be intimidated by a physician. Remember that you hire them, they are either a great service provider or they are not. So talk to him/her like you would a friend.

[aingram18]

Hello,

Thank you for taking the time to read and respond to my problem.  This the first time I have ever turned to the online community, I just feel like I am running out of options.  Well to answer both of your questions, there has been discussion about removing the stimulator, however I am very worried about it.  Apparently it is a very invasive procedure, you see I have leads that run up either side of my spinal column inside the vertebrae and due to the passing time, scar tissue has developed making it somewhat difficult to just remove it all.  I was told that they would try their best to remove everything but there are no guaruntees and what if they go in there and can't remove all the metal pieces? Then i feel like it was a total waste and just one more surgery under my belt, and of course the level of danger working that close to my spinal cord is fairly great and is always in the back of my mind.  I feel the need to mention that the option of taking this out was discussed before i had this put in and I was led to believe that is was no big deal to remove it, should need be.

[Tuckamore]

Hi Aingram,

Welcome to the Pain Management Forum. I am sorry about your chronic pain and the issues it has brought you.

You said you have low back, hip and leg pain. What is your diagnosis? Is it a spinal structure issues?

I agree with Sandee. I cannot understand why they do not remove the stimulator if it is not functioning. Last time I checked it's our body and we should have 100% say over it, at least in your situation. Why will they not remove the SCS? Insist upon it. If your current physician will not do it than find another one.  

Things will get better but you must be assertive with your care. If the current medications you are being prescribed do not work than you may need some trial and error until you find something that does offer better pain management.

We are here for you, to offer support or just to chat if that helps. Please let us know how you are doing. We will look forward to your updates.

Take Care,
Tuck

[sandee1818]

Hi,
I question why they are leaving the stimulator in when it is not providing you with no relief and in fact hindering them to see what is really going on.
I would have it removed and get the test done to find out if this is something new or an existing problem that has just gotten worse.
if the doctors are not willing to see what it is that is causing your pain and just "trying" to treat it then your not going to get anywhere as far as answers.
Does the doctors think further surgery will help or hinder the problem? I would think they would want to know the current situation before making that call.
If they feel surgery is not an option then your left with simply trying to control your pain and to do that they need the MRI done.
I am sorry your in such a situation. Are you seeing a pain management doctor?