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Old 05-28-2011, 08:10 PM #1
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Confused Support / Info from others on Experience of Spinal Cord Stimulation Therapy

Thanks For Sharing Your Experience, as I'm faced with what is being presented as A Decision, I must make, however its more that I'm being told as the Only Option. Which is Very Unsettling!

As I came here to NeuroTalk after my second back surgery & Some Real Hairy Post Op Complications! Had gotten better but took a Very Bad Fall, and Problems started Up to were I'm at today.

As I recalled NeuroTalk & Came back to see what I could Find Out! My Hope to get a Balance of Information! Since My Pain had gotten really Bad.

Well Here is what I posted:

Support / Info from others on Experience of Spinal Cord Stimulation Therapy.


Hello;

I had joined this group to look into support at a Time w. back problems and that of Stress from recovery of Back Surgery & problems which I know to be the Worse type of pain, I've come to know personally. And yes Pain is such a Lonely Personal Experience I've come to understand.

No I'm not here looking for others to feel Sorry for me but to Connect with Others that Understand what pain can do to oneself!

But I had 2 Bad Colds and Extreme Bouts of Coughing Spells that Set off what Seemed to Be a BUBBLE that Blow Up In My Back that happened Several Times~

Now I'm here to see if there are others that have experience w/ The BIG PUSH I'm being GIVEN ~ As explained it is "DUE TO CHANGES OF LAW" here IN ARKANSAS & Being PUSHED into & being TOLD ~ I have to HAVE ~ Neuro Spinal Pain Stimulator's.

So I too am Hoping there are others who can give some Input as Well! About their experience with Neuro Spinal Cord Stimulation Therapy!

As I've been experiencing increased Nerve Electrical Shocking Pain, in fact I thought my Hubby was going to have to RUSH me to the Hospital due to the Pain that Catches me off guard, Stops me DEAD in the Tracks, As thou I'm being slammed by Grim Reaper Knife "Scythe" Slamming into my Hip Bone & Ripping down my Leg MUSCLE and Thru My BONES as Well! Not to mention the Muscle that Start Spasming from Such Extreme Amounts of Pain!

But instead of being able to see the Doctor, to get some relief I receive & no return Calls Till I implore PLEASE after Weeks of asking for A Return Call. But Now as its gotten So I need help! Because Pain Level has gotten So I'm getting Bouts of these Electrical Shocks! Not the Norm BUT EXTREAM! EXTREAM As there was Not just RIPPING BUT THE GRIPPING OF WELL INTO A Minute of this INTENSE AMOUNT OF PAIN for 1-2 Min's' It was not the Norm of this Extreme Level of NERVE Pain ~ That usually is A Rippling that Shots thru my Leg but Was GRIPPING NON STOP PAIN!

Still have not been able to see anyone till I see & Have Psych. Evaluation, as there is Nothing else I can receive help from because of Such as its Stated, due to Laws of Pain Medications, even when requesting a Spine Injection to help relieve this Level of Pain, since its as thou I'm experiencing Same Like Spinal Leak Headache as I'm now experiencing Headaches, as well Numbness in Both Legs and Weakness, not to mention Nausa as well!

So Yes I too am Looking for Support of Others! & Anyone who has Experience With Neuro Spinal Cord Stimulation Therapy. As Due to what I'm being Told I have No Other Choice! Which is Distressing unto itself being told I have no other Option! I have called my Back Spine Doc. Even thou I don't wish to have More Surgery, but with what’s going on its Just Not the Norm in Pain, with Activity, as I'm not able to do any Activity, as it Brings Me Pain!

As I'm so Stressed too and Reaching Out for Help as Well!

Please if others could reply as to their Experience

Thx's Cindy
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Old 05-29-2011, 12:47 AM #2
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Heart Dear Cindy

It is difficult for me to read and understand the scenario in which you have been advised by some caregiver that according to the law of the state of Arkansas you must undergo a surgery that MY doctors have told me is the ABSOLUTE LAST ALTERNATIVE IN SURGERY regarding a pain management situation. Firstly, were anyone to speak to me regarding whether state law requires a surgical procedure, I might be inclined to seek at least an initial legal consultation with a lawyer licensed to practice in Arkansas to confirm the reality of what seems to be a very severe statement.

Never in my wildest dreams have I been informed by any medical practitioner who has touched my body the law of the land requires I submit to any particular procedure. I will also disclose I have practiced law, although not in your state, for over 30 years. Thus, if I were faced with such a dilemma, I would ask a lawyer in my home state to tell me the law. For you, that is someone in Arkansas.

Next, I am a patient who has been through a significant number of surgeries suffered during an on the job auto wreck in an interstate highway. A number of years into my treatment, I was faced with the prospect, that is PROSPECT mind you, not legal requirement that the current last resort in pain management was my next step. You must know, however, that my history has been written with a significant number of varying treatments from medicinal, to chiropractic, to physical therapy, to acupuncture, to surgery, to deep tissue massage, among others. You see, the notion of medical practice as I have experienced it is to do the least harm to the human body while attempting to resolve the pain management issue at hand. Surgery of any kind was always a thoroughly questioned alternative to treatments, because invasion of the body by surgery always poses risks; thus, the care givers do their level best to treat without having to cut.

My story does include the final step of ultimately receiving the Boston Scientific Precision Plus Spinal Cord Stimulation therapy through surgical implant. Now, please, do know this is not a decision one takes lightly at all. The implant is ultimately invasive. The risk of infection is of the next consideration, and in my case was why my surgeon REALLY did not want me in hospital for an overnight if at all possible. I arrived at the surgery center appended to the hospital at 6am in the morning and by 6:30pm that evening had been discharged and was sent home with my wife driving the car to sleep in my own bed. It was no more comfortable than a hospital bed, but it was and is an environment in which I felt comfortable about contaminants and no infection resulted from my permanent implant surgery.

The goal one has in mind as they approach the decision for SCS surgery is of paramount importance to any practitioner who ethically seeks to offer it as a treatment alternative to their patient; namely, what do you seek and expect from such a treatment? As for me, I was seeking a means to relieve and manage pain without the mind numbing medications which had disrupted my practice so traumatically and pretty much caused me to sleep most of the time while also having hope that such a surgical intervention would provide a means to resume some of the LIFE I had lost due to the overarching trauma of the wreck and follow on pain.

You are welcome to thumb through the thread I have regarding Boston Scientific's alternative for me by going here for a more complete story of my situation http://neurotalk.psychcentral.com/thread117854.html and if you have any specific questions of me, I will happily do my best to help you with them. Am I happy to have had the surgery done? Absolutely! Without a doubt! I have withdrawn from all pain meds and am actively engaged in efforts to rejoin my profession. This DOES NOT MEAN I NEVER FEEL PAIN, and if anyone TRIES to tell you otherwise I doubt the truth to their statement. I do feel pain, in fact, I feel it right now as I am typing this response to you; however, I know in a few minutes I will be able to shift my position and turn up the energy on my program to overcome the power of pain.

MANY folks are likely to chime in on your question to provide help as best they can, as we have developed into a world wide family of people striving to do our best with the pain that binds us. As for me, I often have friends now tell me in person they can see it in my eyes that my pain no longer has control of my life as it once did. I feel blessed.

I'll be around, and pray for you as well,
Mark56
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Old 03-04-2012, 04:23 PM #3
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Quote:
Originally Posted by Cindy C View Post
Thanks For Sharing Your Experience, as I'm faced with what is being presented as A Decision, I must make, however its more that I'm being told as the Only Option. Which is Very Unsettling!

As I came here to NeuroTalk after my second back surgery & Some Real Hairy Post Op Complications! Had gotten better but took a Very Bad Fall, and Problems started Up to were I'm at today.

As I recalled NeuroTalk & Came back to see what I could Find Out! My Hope to get a Balance of Information! Since My Pain had gotten really Bad.

Well Here is what I posted:

Support / Info from others on Experience of Spinal Cord Stimulation Therapy.


Hello;

I had joined this group to look into support at a Time w. back problems and that of Stress from recovery of Back Surgery & problems which I know to be the Worse type of pain, I've come to know personally. And yes Pain is such a Lonely Personal Experience I've come to understand.

No I'm not here looking for others to feel Sorry for me but to Connect with Others that Understand what pain can do to oneself!

But I had 2 Bad Colds and Extreme Bouts of Coughing Spells that Set off what Seemed to Be a BUBBLE that Blow Up In My Back that happened Several Times~

Now I'm here to see if there are others that have experience w/ The BIG PUSH I'm being GIVEN ~ As explained it is "DUE TO CHANGES OF LAW" here IN ARKANSAS & Being PUSHED into & being TOLD ~ I have to HAVE ~ Neuro Spinal Pain Stimulator's.

So I too am Hoping there are others who can give some Input as Well! About their experience with Neuro Spinal Cord Stimulation Therapy!

As I've been experiencing increased Nerve Electrical Shocking Pain, in fact I thought my Hubby was going to have to RUSH me to the Hospital due to the Pain that Catches me off guard, Stops me DEAD in the Tracks, As thou I'm being slammed by Grim Reaper Knife "Scythe" Slamming into my Hip Bone & Ripping down my Leg MUSCLE and Thru My BONES as Well! Not to mention the Muscle that Start Spasming from Such Extreme Amounts of Pain!

But instead of being able to see the Doctor, to get some relief I receive & no return Calls Till I implore PLEASE after Weeks of asking for A Return Call. But Now as its gotten So I need help! Because Pain Level has gotten So I'm getting Bouts of these Electrical Shocks! Not the Norm BUT EXTREAM! EXTREAM As there was Not just RIPPING BUT THE GRIPPING OF WELL INTO A Minute of this INTENSE AMOUNT OF PAIN for 1-2 Min's' It was not the Norm of this Extreme Level of NERVE Pain ~ That usually is A Rippling that Shots thru my Leg but Was GRIPPING NON STOP PAIN!

Still have not been able to see anyone till I see & Have Psych. Evaluation, as there is Nothing else I can receive help from because of Such as its Stated, due to Laws of Pain Medications, even when requesting a Spine Injection to help relieve this Level of Pain, since its as thou I'm experiencing Same Like Spinal Leak Headache as I'm now experiencing Headaches, as well Numbness in Both Legs and Weakness, not to mention Nausa as well!

So Yes I too am Looking for Support of Others! & Anyone who has Experience With Neuro Spinal Cord Stimulation Therapy. As Due to what I'm being Told I have No Other Choice! Which is Distressing unto itself being told I have no other Option! I have called my Back Spine Doc. Even thou I don't wish to have More Surgery, but with what’s going on its Just Not the Norm in Pain, with Activity, as I'm not able to do any Activity, as it Brings Me Pain!

As I'm so Stressed too and Reaching Out for Help as Well!

Please if others could reply as to their Experience

Thx's Cindy
I've had 7 years of Spinal Cord Stimulator Treatment. Successful,Except I have no relief when the leads or the machine itself needs replacing. Your symptoms are strange-have you tried turning down the level of power with your remote control? This should reduce the electrical shock sensation.
Whether there is a change of law or not in Arkansas,makes no difference to pain treatment. Pain Psych. Evaluation normal before SCS Implantation. But as regards the Law? No-one can operate unless you sign a permit first.
Some deep breathing and relaxation exercises will help you until you see your Pain Consultant. Good luck.
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Old 03-04-2012, 05:30 PM #4
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Originally Posted by Frankie071 View Post
I've had 7 years of Spinal Cord Stimulator Treatment. Successful,Except I have no relief when the leads or the machine itself needs replacing. Your symptoms are strange-have you tried turning down the level of power with your remote control? This should reduce the electrical shock sensation.
Whether there is a change of law or not in Arkansas,makes no difference to pain treatment. Pain Psych. Evaluation normal before SCS Implantation. But as regards the Law? No-one can operate unless you sign a permit first.
Some deep breathing and relaxation exercises will help you until you see your Pain Consultant. Good luck.
I have a spinal cord stimulator sometimes it's my best friend. and my enemie. But for the most I like it
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Old 03-04-2012, 06:05 PM #5
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Smile Hello Frankie!

Quote:
Originally Posted by Frankie071 View Post
I've had 7 years of Spinal Cord Stimulator Treatment. Successful,Except I have no relief when the leads or the machine itself needs replacing. Your symptoms are strange-have you tried turning down the level of power with your remote control? This should reduce the electrical shock sensation.
Whether there is a change of law or not in Arkansas,makes no difference to pain treatment. Pain Psych. Evaluation normal before SCS Implantation. But as regards the Law? No-one can operate unless you sign a permit first.
Some deep breathing and relaxation exercises will help you until you see your Pain Consultant. Good luck.
Welcome to the group

7 years! yay! It's always good to hear of successful outcomes with SCS's. What type of unit do you have?
Is this the first time you are needing to replace your battery/leads?

It's great to have you with us! Please stick around so we can pelt you with questions . I've been wondering how long our batteries will last (on average). I've only had mine a couple of years. I'm lovin it!

Thanks for sharing

Rae
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Old 03-04-2012, 07:57 PM #6
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Heart So Frankie, and Avoice

Welcome to a comfortable and safe place to share. As you witnessed from Cindy's post some extreme stuff was going on, but I never heard back from her.......

Then here you come. Avoice, I understand stim can be both enemy and friend, depending on the manner of programming you received. I was allowed to program my unit myself in 2010 and have never had a complaint or a revision or a tweak [Very much to the pleasure of my doctors] AND on top of all of that I have resumed my profession and am now seeking admission to also practice in New York, so life in some ways has been restored to me. I treat this wondrous device as such a blessing, and I very much hope for you there is a feeling of restoration in your life although at times it seems not to help too much..... maybe a tweak with your program is in order?

Frankie......YOU, YOU are one of the success stories I heard of such as was told to my by my friend Jason at church that although his sister had endured two such stim emplacements in 10 years time, SHE was thrilled to have the benefit of stim and he encouraged and prayed for me that I would consider its possibility. You know from reading above I share your blessing of a stim as does Rae, a stim which has been utterly restorative in my life. Can I still carve a beautiful S down a fresh slope of new fallen snow skiing with my family as was one of my passions..... no, but I can now earn the funds necessary to provide for them once again in my profession, and in my book THAT is success worth SHOUTING OUT LOUD TO THE LORD ABOUT!

Thank you all for sharing,
Blessings,
Mark56
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Old 03-06-2012, 09:26 PM #7
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Originally Posted by avoice View Post
I have a spinal cord stimulator sometimes it's my best friend. and my enemie. But for the most I like it
Welcome to the group!

How long have you had your stim? I'm glad to see that you are doing well with it. I feel the same way you do. Some days good, some not so good, but all in all I'm very thankful for it. That horrible pain was about to do me in, as many here would say the same.

It's great to have you!

Rae


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Old 04-23-2012, 06:09 PM #8
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Welcome to the group!

How long have you had your stim? I'm glad to see that you are doing well with it. I feel the same way you do. Some days good, some not so good, but all in all I'm very thankful for it. That horrible pain was about to do me in, as many here would say the same.

It's great to have you!

Rae

I've had it for about 3 years now. i'm a very shy person i'm around regular psycentral.com mostly.
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Old 04-23-2012, 08:54 PM #9
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Default Avoice!

Thanks for your response back! I'm not too far behind you with the stim. I wonder how long our batteries will last.

No need to be shy here with the buzzing buddies! We're a down to earth bunch of bionic peeps here in our little corner of the world wide web. Hmmmm, maybe WE are the shy ones!
Actually I'm registered over at PsychCentral too, but it seems so overwhelming to me....it is a VERY busy forum! I'm just a small town hick

It's great to have you here!

Rae
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Old 04-23-2012, 10:09 PM #10
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I don't have experience with back problems, but it does seem odd to me that your doctor is saying that this is your only option. Having an implant inside of you is a big deal, and it is a decision that you should make, on your own, after coming to terms with it. I don't think it's something that anyone should be forced into, because they could end up miserable. Additionally, and I don't know if your doctor talked to about this, but while spinal cord stimulation provides great relief for some people, it does not work for others. There is no guarantee that this treatment will work, unfortunately, which is troubling because what will your doctor do for you if it doesn't? Mark's reply is way more detailed and very helpful, but I think getting a second opinion from another doctor would be a good idea. If after finding more information about the SCS you decide that you'd like to go forth with the trial then that is great, but it needs to be a decision you make.
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