Help with Using HealingWell

Hello everyone, and especially to PAlady who responded to my post.  I attempted to respond to her, but it appears I have responed to myself!!!!!!  Can someone please tell me how to use this?  I hope PAlady reads this.  Did I start a new conversation with myself?  Oh well, at least I am laughing.

Thanks for any help,

Ric

Thanks so much. I already feel I have a friend through this. Have a wonderful day.

Ric

Hi, Riccardo, just wanted to pop in to say welcome. I too have had lumbar & cervical fusions done. They were both successful in the doctors eyes because I fused but they never took all the pain away. Has your pain management doctor ever tried any injections? I am in the process of diagnostic injections for the facet joints pinching on the nerves. I've had great success so far with these and will have radio frequency abalation completed soon. Didn't know if this may be an option for you.

I do wish you luck with your trials!!

Thanks to all who responded to me. I got great news from my pain management doctor today: the trial implant of the neuro-stimulator really worked wonders for me, and two weeks from Friday, I am having one permanently implanted. Does anyone out there have one? It really did manage to turn the sharp pain into a mild tingling sensation, kind of like when you sit in one of those massage machines at the big box stores.

I am SO happy to know of this group and that so many people seem to be managing their pain so well.

Love to all

Ric

Dear Lorie:

Thanks so much for your reply. What can you tell me about the stimulator? I did the trial for 4 days and loved the stimulation and the freedom from pain. Of course, I hated all the nasty tape on my back and how cumbersome the wires were. But I can actually say I was pain free for those days, and as well, I didn't take as much oxycontin.

Saw the pain doctor today, and he advised that I continue taking the higher dose of oxy until further notice.

Do you think this is good advice?

Anything you can tell me about the stimulator would be appreciated. Such as, do you leave it on all the time or do you just use it for specific bouts of pain?

Can't wait to hear your thoughts.

Love

Ric

Hi Ric:

Well, first of all, I can promise you that the permanent implant is tape free other than a few steri-strips on your incisions, and no awkward wires and bulky device to carry around, lol.

I was in a very bad car accident in 1995, and have had a total of 23 back surgeries and I am left with severe nerve damage to the nerves that control my ability to walk. Early on I was told that they could sever the nerve and my pain would be relieved, but I would never walk again. As a mother of 3, that was not an option, and now I am told that because it has been several years and the surrounding nerves have a "memory", if they sever the nerve now, I would likely be in more pain, and never be able to walk again. I am a very complex case as in addition I have several other issues with my spine that all contribute to my very high pain levels.

So, my only other option in addition to pain medications, is to try and "desensatize" the nerve or interrupt the nerve messages to the brain which is what the SCS is designed to do.

For the first several years, I ran the SCS with all settings as high as they could go 24/7. The problem with that was I was going through what should have been a 5 - 7 year battery in as little as 2 months, and the battery change requires another surgery. They do now have the battery that is rechargeable from a device you where like a belt for so many hours every couple of weeks. I tried it, but because my battery usage is so high, I felt like I was connected to a wall plug like a lamp. I chose to go back to the non-rechargeable battery.

My neurosurgeon and I felt that changing the battery every 2 months was just not realistic, so I now try to use it only on my really bad days, which is still a couple of days a week, and as a result, I have stretched the battery life to about 6 - 8 months.

I am one of those people that if anything can go wrong, it will, & I have had issues over the years with leads slipping out of place, a build up of scar tissue between the lead and the dura which caused me to loose the "tingling" sensation completely, as well as a bad bout with MRSA (anti-biotic resistant staph) which necessitated revision of the device, or with the MRSA the SCS had to be taken out altogether until I was infection free for 6 months and then it was reimplanted.

I am not telling you this to scare you away from the SCS, in fact, what I am trying to say is that despite the problems I have had (none of which were because of the device malfunctioning), I would never want to be without it. For me, the SCS along with the intrathecal pain pump and my children are the only reason I'm still here today.

I don't know if I answered your questions well or not, but please feel free to ask away if you have anything else you would like to know. There are a few others on this forum that have them as well, or have gone through the trial and are awaiting the permanent implant and some who have decided against it, and I'm sure they will be around to give you their thoughts as well. I sincerely hope that I have not scared you in any way - I just believe in being totally honest about my experience so that you have an accurate description to go on.

What fabulous advice from all you dear people. The best is Lorie's telling me not to worry so much about what others think about me. All my life that has been a problem, and only now, at a (VERY YOUNG!!!!) 63, do I finally believe that. in fact, it is my best friend, who doesn't take as much as an aspirin, who is so worried that I will become a full-fledged addict like you see in the movies. He is a dear, but doesn't have a clue as to what kind of pain I am in on a daily basis. I don't say that to malign him, however, because he is a wonderful person who brings much joy to my life.

I can't tell you how much all of your good support means to me. You know, I come to the computer in pain, read your posts, start typing, and before I know it, no pain!!!!

One of you recently said that there is a lot to the attitude angle of all of this, and I am sure you are correct. Pain is pain, but how we handle it is the answer.

I would like to share a poem with you written by the founder of the 4-Seasons Hotel Chain:

The longer you live
the more you wil realize
the impact of attitude on life.
Attitude is more important than facts.
It is more important than the past
than education
than money
than circumstances
than failures
than successes
than what other people think or say or do.

...

The remarkable thing is we have a choice
each and every day
regarding the attitude we will embrance for that day.

Food for thought.

Love to you all.

Ric

Dear Anniedaze:

I really, honestly feel for you and hope that your pain can subside quickly. I certainly know how something like "attitude" can just seem like so much bullcrap when you are in pain and when you just can't seem to focus on anything else.

Love to you and feel better. Is this something new or something which is ongoing??

Love

Ric

I just wanted to stop by and say hello to Riccardo.
Seems like you'll be a nice asset around here to help out with your experiences, I hope the neuro stim will give you relief.
keep us posted as to when your surgery is for the neuro stim...
((((((((((((((((((((((((((((((((((((((((riccardo))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
hugz