St. Jude SCS

[peppermintpatty]

Since the old thread was closed, I thought I would start a new one.

I am scheduled to get the St. Jude SCS this coming Wednesday. After much research, second and third opinions, and prayer, I finally feel at peace with my decision. I'm still apprehensive, don't get me wrong, but I do feel that I'm doing the right thing.

The trial was a rousing success for me. As fate would have it, it was put in the day before we had to evacuate due to hurricane Irene. To be honest, I'm not sure how I'd have survived that evacuation otherwise. It didn't block all of the pain, but I'd say a good 75% of it. My levels were down to a 3-4, which is acceptable to me. For those who are curious, I have peripheral neuropathy and CRPS-Type II in my left leg, as a result of a nerve that was severely damaged.

One thing I would like to remind others who might be considering a SCS is the reality: the SCS likely will NOT resolve your pain entirely, but it will hopefully get it to a more manageable level, improving your quality of life.

I'll be happy to answer any questions I can about my decision, the trial, etc. And of course, after my surgery, I'll be happy to share those details as well.

[ron h]

Since the old thread was closed, I thought I would start a new one.

I am scheduled to get the St. Jude SCS this coming Wednesday. After much research, second and third opinions, and prayer, I finally feel at peace with my decision. I'm still apprehensive, don't get me wrong, but I do feel that I'm doing the right thing.

The trial was a rousing success for me. As fate would have it, it was put in the day before we had to evacuate due to hurricane Irene. To be honest, I'm not sure how I'd have survived that evacuation otherwise. It didn't block all of the pain, but I'd say a good 75% of it. My levels were down to a 3-4, which is acceptable to me. For those who are curious, I have peripheral neuropathy and CRPS-Type II in my left leg, as a result of a nerve that was severely damaged.

One thing I would like to remind others who might be considering a SCS is the reality: the SCS likely will NOT resolve your pain entirely, but it will hopefully get it to a more manageable level, improving your quality of life.

I'll be happy to answer any questions I can about my decision, the trial, etc. And of course, after my surgery, I'll be happy to share those details as well.

good luck and prayers with you
ron h:grouphug:

[PatriciaB]

Hi All,
I have not logged in a few days. My uncle died late last night-a truly happly release. I got a call this morning form my consultant's secretary to say that my trial was not happening for another 2 weeks. I am so disappointed. She also said that the trial itself was being replaced by a different producure for all prospective patients. I can't follow whats going on. She referred to some form of lesioning. Any help folks??

[Mark56]

Hi All,
I have not logged in a few days. My uncle died late last night-a truly happly release. I got a call this morning form my consultant's secretary to say that my trial was not happening for another 2 weeks. I am so disappointed. She also said that the trial itself was being replaced by a different producure for all prospective patients. I can't follow whats going on. She referred to some form of lesioning. Any help folks??

Sorry on both accounts. Death is easier to accept when it is viewed as a release to the next horizon and a passing from life which is painful and difficult. One of my friends in his 90s seems to be nearing that moment....
As to your delay for Trial... I am doubly sorry!!! Then the switch out for some other undisclosed procedure.... now THAT would rile me up big time. Disclosure is the mandate isn't it?

Prayin for ya,
Mark56:hug:z

[Mark56]

Prayin all goes extremely well for you in this implant!!! St Judes all the way!!

Healing Prayers,
Mark56:hug:zz

[peppermintpatty]

Hi All,
I have not logged in a few days. My uncle died late last night-a truly happly release. I got a call this morning form my consultant's secretary to say that my trial was not happening for another 2 weeks. I am so disappointed. She also said that the trial itself was being replaced by a different producure for all prospective patients. I can't follow whats going on. She referred to some form of lesioning. Any help folks??

I'm sorry to hear that but glad that it was a happy release for him.

I don't know what they were referring to regarding the different trial method. I just had my trial (St. Jude) last month and it was as everyone else has described.

[peppermintpatty]

Prayin all goes extremely well for you in this implant!!! St Judes all the way!!

Healing Prayers,
Mark56:hug:zz

Thank you, Mark! I'm so very hopeful and ready to move on. Two years is about one year and 51 weeks too long!

[Rrae]

How are you doing Peppermintpatty!

Did you have your surgery on Wed? Anxious to hear an update

Still standing on Jeremiah 29:11 :hug:

Rae

[Mark56]

And I heartily Agree with Rae in Jeremiah 21:11..... oh Yeah!

Prayin too,
Mark56:grouphug:

[alt1268]

I am scheduled for a st. jude trial on February 21. For RSD of the right foot and ankle. This is my second trial and the first one which was a boston scientific didn't give me much relief. (I was down 3 days with extreme back pain from the insertion). Any insight is greatly appreciated.

[Rrae]

I am scheduled for a st. jude trial on February 21. For RSD of the right foot and ankle. This is my second trial and the first one which was a boston scientific didn't give me much relief. (I was down 3 days with extreme back pain from the insertion). Any insight is greatly appreciated.

Well, I can tell you one thing - you're sure to get plenty of support from our SCSers! :hug: I'm sorry to hear your 1st trial didn't go well. Were you able to get any stimulation at all to your rt foot/ankle? Are you going with a different manufacturer this time? I have a Medtronic unit for my RSD in both legs. It does a great job of covering about 70% of the pain.
There are others here with Boston Sci's and are doing real well. There are also others who do have some problems. As you read thru some of the posts, you'll see quite an array of testimonies.

Will the same Dr be doing this implant? I wonder what went wrong the first time that caused so much pain in your back.
Just ask anything and the input will come. Meanwhile, read thru the threads that catch your eye and you can get a pretty good glimpse at what you might expect.

I sure hope this will work for you this time so you can have some control over your pain. Course, the pain is always there, but the SCS will cover over it so hopefully you can have a better quality of life and be able to do the things you've been missing out on.


Rae
:grouphug:

[alt1268]

Rae,

Thank you for the reply. My first trial was a Boston Scientific, after my back pain subsided, I had to have a readjustment. I would say I only got about 20% coverage in the foot and ankle. The pulse just was never right. I have been reading many threads and responses on this site and have been on the rsd forum for awhile. I appreciate all your help and it is nice to know I have support here as well.

[Mark56]

So So Sorry to learn your Boston Sci Trial was a poor result. So then, we pray that your St. Judes will be the better fix this time and that the result will bring you real relief and not the partial you knew from the previous trial. 20% is not a win in any scenario.

Prayin,
Mark56:grouphug:

[alt1268]

mark,

I spent 3 out of 7 days down with excuriating back pain. on the 5th day they did a readjustment. So I only had 2 good days.
Thanks for the prayers. I hope this will work, I want to get back to some kind of life.

[Mark56]

God is faithful to care for those who seek His intervention in their life. I like your motto, for in recognizing surrender is a long way toward God's embrace, each can come to the point of being carried in times when pain is so great.

During my darkest moments and days of pain, friends would comment they had no understanding how I could bear up under it all..... my retort was universally "but wait a minute, are you not one who has said you are praying for me? It is precisely such care which has helped me keep presence of mind when pain has been at its worst." They took comfort in such realization, as I took away the blessing of their renewed expressoin prayer was on the way.

As for you, my friend, prayer is on the way,
May you feel blessed,
Mark56:hug:

[alt1268]

March,

I love your trust and faith in God. The first thing I noted on the SCS forum was the faith and believe that was found. I must admit, one of the reasons I changed my saying was with all the medications, I am feeling distance between my relationship with the Lord and myself. Something I desire to have back in my life. The peace of it all.

[alt1268]

ok. sorry to be gone so long but here is the deal. I was scheduled for my scs in February got postponed wc had not made a descision has to go before quality review. Rescheduled for April, same thing happened. Rescheduled for June 4. Same thing. I am now rescheduled for August.

Workers comp. will not return my phone calls and my attorney has not done a thing either. Thank God! we had a mild winter and I am actually doing well.

[Sandy Kay]

In this world there will be troubles. Be brave!
I'm sorry to hear about all the troubles you are dealing with with WC.
Nothing goes smoothly between the WC boards and Atty. Hoping the new St Jude trial helps give you more relief from pain.

Sandy

[Mark56]

I, too, was WC and a LONG time was taken to follow my continuing body struggles. It was not so much the delay of the WC folks for me as that my body continued a long slide in decline and surgeries kept happening. We finally reached peace with them after the SCS was perceived greatly successful and a lapse in surgeries had occurred. Settlement was agreed without having to go to trial, a huge managed medical savings account was established and a significant settlement for the work related loss helped immensely when we were able once again to purchase a home.

My thirtieth surgery occurred last Thursday, dipping into the WC medical savings to diagnose and aid my woefully agonizing nerve condition in the arm. Next week, we learn the results and suggested plan of action. I look forward to the consult.

NOW regarding your attorney....... Personally I take extremely seriously my ethical obligations in practicing law as I have been able to resume practice. Among the greatest obligations counsel OWES clients, and the MOST FREQUENTLY found basis for Supreme Court censure or worse for an attorney in any state is THE FAILURE TO REMAIN IN CLOSE CLIENT CONTACT, followed very naturally by the failure to diligently prosecute the client's case. I urge you to be in touch with your attorney asking for update of the status of your case. There are very likely arguments occurring in the background of which you are not aware....... BUT the attorney is ethically obligated to keep you informed. I am deadly serious about this. If you cannot obtain communication from your lawyer, the Supreme Court of your state will listen if you contact them and let them know you have fallen away from knowledge what is going on and your attorney will not inform you. There is a very serious attorney regulation process in every state to urge and help attorneys to live up to their ethical obligations, which are many, including client contact.

I take ethics extremely seriously. All attorneys should.

I pray for you without ceasing ALT, hoping your journey will be made easier,
Agape,
Mark56:hug:zzzzzzzzzzzzz

[alt1268]

I received a letter this weekend from WC requesting another IME. This time it is with a pysiatrist. (physical medicine, rehabilation and pain) scheduled for the same day as my rescheduled stim. trial. I politely wrote a letter to my atty. stating that I could not attend because wc had already requested I reschedule my stim. trial to august and that they need to obtain my records from the last IME I had.

All this because we filled to make them pay the hospital for my lsb in November. (they paid the dr. not the hospital)

You know I really believe GOD has a plan for me and that is why my trial keeps getting postponed. Only he knows the reason for the delay.

[Mark56]

Dear Alt-

It is so incredible how revelation comes to each of us. The notion of being fully healed is not the grand quest it was for me in the early days after the wreck. So much has become apparent, and as a consequence of yielding to whatever God had for me. Amazing how much impact one can have on another when from a wheelchair, looking up and responding to an inquiry how I feel today, responding regarding my feeling of blessing and inquiring how the other feels. Or if not in the chair, leaning on my cane, and still sharing with another who seems quite fit after all, and they BEAM gratitude for someone opening the door to a discussion regarding blessings and it is not someone who used to be fairly athletic, but a person who truly appears to be hobbled.

So cool how in all of the grand plan, we each come to our point of reaching out to another to help one in need. Truly, having to go for another IME is a hassle, and it will work for the good in your case, while the Trial must be allowed to proceed...... THEN, when you think it is all settled down to a slow simmer..... you find yourself propelled into a place of sharing with someone who really needs it. This is how it has worked for me, even today, as I was so in pain on the way home from work.... had a difficulty and delay at a hardware store trying to exchange something, then realized our daughter had all but drained my car of fuel, so I stopped at the nearest gas station, ONLY to run alongside a longtime dear work friend [former company] and we had moments to share with one another and I was able to remind her I felt blessed. Maybe she needed those words this evening. Perhaps THIS is why I was delayed, though I just wanted to get home to my bed and lie down.

What a blessing indeed. May your purpose in all of this be openly and readily revealed to you so you have not one doubt....... not one. AND, may you feel a great deep warmth in your heart because you were placed at exactly the correct spot and precisely the right time.

Prayin,
Mark56:hug:zzzzzzzzzzzzzzzzzzzzz

[alt1268]

Welll wc is denying my stim. trial. I now have rsd in left foot and dr. says that my internal issues are more then likely rsd related. Yah! What Now?

[Spiney95]

Welll wc is denying my stim. trial. I now have rsd in left foot and dr. says that my internal issues are more then likely rsd related. Yah! What Now?

I trust that your doctor is advocating strongly for you. It takes up quite a bit of time but is part of his job. Dealing with W/C is a pain in the tush. My last job was with a psychiatrist and he wouldn't even take W/C patients due to no pay/slow pay/and certification problems. Don't throw in the towel yet. Best wishes.

[tkayewade]

I have a st Jude eon stim. I love it. It is hard enough to get these approved through regular insurance. I can't imagine workers comp. I hope you get it worked out soon. It sounds like you need relief!!

[Rrae]

Welll wc is denying my stim. trial. I now have rsd in left foot and dr. says that my internal issues are more then likely rsd related. Yah! What Now?

I'm so sorry to hear this. I know you've been waiting a long time on this.
Please hang in there and don't give up. It may take more time and paperwork, but with the right people backing you up, somehow this could come thru for you.
Stupid work comp. I know how they drag things on. They shouldn't have the final say. It's just not right.

Caring,
Rae
:hug:

[Mark56]

So SO hard to wait for work comp responses and they take a lot of pushing from both DOC and the LAWYER, so much hard work goes into the persuasion then patience in the waiting. I am a Work Comp result, and now that I am officially DISABLED imagine this, the Work Comp set aside Medical Savings Account administered under Medicare guidelines and Medicare itself [now my primary provider of medical coverage] receive claims from a lab for blood work and each point the finger at the other saying this is covered by the other side under Medicare guidelines....... Is this a GO FIGURE moment????

So Alt, I PRAY for you and the decision making by those in control that you be approved, then ultimately provided best possible care for your pain regardless of the causation issue relevant to the commencement of the injury. If Work Comp can be proven to be responsible because but for the injury which produced the RSD, you may be able to help lawyer with the idea of finding law on such a point..... one never knows. But if origin/causation lays within the scope of the injury, Fight As Though You Are Inspired by Patrick Henry!!!!

Prayin,
Mark56:hug:

[jenlin]

Be careful and cautious when getting the scs... I'm 22 (18 when had the device implanted) and just received a letter saying my device has been recalled. I have been in remission with flare ups from crps, and now have to get an explant. The scary part is not knowing if the surgery will cause the disease to come back in full force! If i would of known that the scs was going to cause so many problems, i would of never considered it.

[Nanc]

alt, I sure hope things move along for you soon so you can get relief from your pain. As you all know, I had 2 St Jude stims implanted in me a year ago (cervical & thoracic). I would not have been able to continue working this last year without them. Although I still have a great deal of pain (areas the SCS don't reach and other issues), it has been reduced tremendously and for this I am grateful.

I am fortunate that I have my husband's good insurance to cover me and do not have to deal with WC. They are ridiculous to think they know what is best for the patient.

I truly hope you get resolution VERY soon!
Nanc
:hug:

[Rrae]

Be careful and cautious when getting the scs... I'm 22 (18 when had the device implanted) and just received a letter saying my device has been recalled. I have been in remission with flare ups from crps, and now have to get an explant. The scary part is not knowing if the surgery will cause the disease to come back in full force! If i would of known that the scs was going to cause so many problems, i would of never considered it.

Welcome! And thanks for sharing! I'm so sorry to hear this. Did they say why they were mandating these recalls? I can imagine how you must be feeling about this. What brand do you have?

Please stick around and let us know how this unfolds. How very frustrating to get this letter after having your unit these past few years and everything seems to be going well with your remission. Just plain stinks :(

Caring,
Rae
:grouphug:

[eva5667faliure]

Be careful and cautious when getting the scs... I'm 22 (18 when had the device implanted) and just received a letter saying my device has been recalled. I have been in remission with flare ups from crps, and now have to get an explant. The scary part is not knowing if the surgery will cause the disease to come back in full force! If i would of known that the scs was going to cause so many problems, i would of never considered it.

stay close to the doctor you trust
if you don't have one i hope you
can find one ASAP
educate yourself
the best you can
God guide you to
the help we all need
trust in yourself

someone who cares

[eva5667faliure]

Welcome! And thanks for sharing! I'm so sorry to hear this. Did they say why they were mandating these recalls? I can imagine how you must be feeling about this. What brand do you have?

Please stick around and let us know how this unfolds. How very frustrating to get this letter after having your unit these past few years and everything seems to be going well with your remission. Just plain stinks :(

Caring,
Rae
:grouphug:
i concur
wishing you well
in the end
and loved ones
AMEN!

[stormcloudfire]

I broke my meck in 2003 not one but all 7 Vertebra I had previously broke C 67 and had it fused . NOW I had a Critical problem in 2005 Finaly convincing my doctors to send me to a Neurosurgeon who Decided to FUSE my neck solid from C2 to T1 VERY Barbaric YES very much so . I personally reviewed my MRI and with some mechanical analysis I decided to Pressure the Doctors for no less than 2 Artificial Disks and Arthroplasty to Glue the transverse fractures in place NO fusion and I would retain my natural Disks in the remaining segments . The Prodisk approved at the time was to be only used in 1 disk section in any spinal section IE C spine L spine T spine as it places too much pressure on the adjacent Vertebra as it has a solid polyethylene ball and titanium endplates . MY wish list for 2 was obvious to any Mechanic to stablize the train wreck of my C spine . MY own plan was promoted to a Surgeon who did such implants and he carefully decided that I was 100% corrrect and 2 were nescessary. OR continue with the total Fusion. I had pointed out that one at C23 where the spine was forced forward and almost severing my spine in a Bone on bone sisor action. and C 56 in the reverse direction version. I do not know how he requested this as the FDA does not allow 2 Failing the application of 2 I would have to end my active lifestyle. NOt in my life plans.
ON Dec 6 2006 I had my wish come true. 2 Prodisk Prosthetic Disk implants. and small dots of Bone and isocyanate paste alograft held al the other fractures together Exactly as I planned and proposed to the Neurosurgeon . Today Aug 15 2012 I have not had one twinge of pain from my C spine. No numbness to pains in my wrists No lower limb responses anything that can be attributed to my C spine.
IVe heard of people having 2 and 3 Fusions done but not a total neck or lumbar spine section.
My own initiative prevented a Draconian surgery from destroying my life. Doctors dont listen to Patients when they begin to discuss such matters as I presented. We the patient do not have dr. in front of our names. This is very sad As I am a very prominant scientist in Envvironmental Chemistry and heavy industry Chemical Engineering. I still encounter such arrogance but I am able to break this barrier . But many people are just as able as I am and we are just ignorred a problem that must be resolved, once that Dr. had the same knowledge as we do no more mo less .
I ws able to become the Planning authority of my surgery. My doctor listened and Did what I wanted not what he wanted . Its time we all looked researched and made innovative recommendations for our own health . We are the real object of invasion we are simply wasting the doctors time if we opt for OLD and Tired Proceedures. ONes that have been replaced with new technology, that provide a lifestyle that encroaches on normalcy. patty I am not saying what you had done was wrong or old that you had an option that was better . I am sayign we face an issue with our spines and the descision is to traumatic If the wrong one is made we destroy our own life For ever . If we do not have the ability to be as pushy as I am And the ability to research the entire planet of medicine. comprehend the technology it is our surgeons task to be in the know and not perform outmoded surgery promote the use of new . COST is of no concern . I heard one person say the Texas Back institute proposed he have an L5 S1 prodisk and his insurer said NO because of COST. Being canadian Cost is something we dont bear we pay for insurance taht doe snot considder Cost or Doctors Desires its whats best for YOU and I. COST I did see the invoiuce for my 2 Prodisks 2 C spine Prodisks $1894 2 thats under $900 each. In Canada we pay 20% more for the same vehicle as in the USA Dollar conversion at par. A probable $20,000 surgery what is $900 the cost to make the Alograft is probably half that . at that difference WHY FUSE?

I am waiting now to tel the same Doctor to send me to Germany for a total T10 down to S1 Same train Wreck only worse. Although this problem had to take 2nd place to my C spine issue as My C23 was so severe.

Paty I wish you days as I have with my C spine "no pain ." and every one the same . there are alternates to What we see from our North American Doctors they are not now the best in the world as we boast.!




Since the old thread was closed, I thought I would start a new one.

I am scheduled to get the St. Jude SCS this coming Wednesday. After much research, second and third opinions, and prayer, I finally feel at peace with my decision. I'm still apprehensive, don't get me wrong, but I do feel that I'm doing the right thing.

The trial was a rousing success for me. As fate would have it, it was put in the day before we had to evacuate due to hurricane Irene. To be honest, I'm not sure how I'd have survived that evacuation otherwise. It didn't block all of the pain, but I'd say a good 75% of it. My levels were down to a 3-4, which is acceptable to me. For those who are curious, I have peripheral neuropathy and CRPS-Type II in my left leg, as a result of a nerve that was severely damaged.

One thing I would like to remind others who might be considering a SCS is the reality: the SCS likely will NOT resolve your pain entirely, but it will hopefully get it to a more manageable level, improving your quality of life.

I'll be happy to answer any questions I can about my decision, the trial, etc. And of course, after my surgery, I'll be happy to share those details as well.

[alt1268]

Thanks everyone for your reply. I have to believe that GOD has a reason behind this.