My Pending Surgery

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LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/5/2010 7:26 AM (GMT -7)   
Ok I remember in the past we have helped a few on the boards through the SCS Spinal Cord Stimulator.  Well I have the option now of going through the trial.
 
My pain doctor sat me down last week and we had a heart to heart.  Very blunt if you ask me.  He told me my condition will only get worse until it takes me to whatever is out there.  Duh we all know that.  She believes it wouldn't hurt to try this trial to see if it could give me some relief.  I get pain procedures done two or three times a year.  You know the series of three well I get the series of 6.  For both kidneys.
 
We are putting a goal forward to see if we can decrease meds by 1/4 and with pain levels down to be able to decrease at least one or two of the BP meds.
 
So all of you that went through the trial please help me with this.  I believe Fatherjohn had the trial done.  I just need to know a few things regarding working during it and what kind of support I need.
 
Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 4/5/2010 7:42 AM (GMT -7)   
Laurie
I can't help you on the stimulator, But I did want, to just wish you luck with making your decision, and to let you know we have missed you! I know that you and your husband both are having some very difficult health problems!

I do keep you and your husband in my prayers!

White Beard

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 4/5/2010 10:31 AM (GMT -7)   
 Dear Laurie,
 
     Good morning *soft hugg* I am so glad you stopped by. I had often wondered how you are doing latly. Though I am glad to hear from you, I am sorry you have to face such hard decisions.
 
     I am afraid I know nothing about implanted SCS. All I have is one of the little external devices. Though I cannot offer any advise I did want to stop by and say hello. I hope that the trial goes well for you, if that is what you decide you would like to do.
 
*hugg*
  dani
 
~~>From Chutz's info page~~>
 

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2080496/

 

http://www.medtronic.com/your-health/chronic-back-and-leg-pain/device/index.htm

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1032552/

 

~~>HW Discussion topics~~~>

 

http://www.healingwell.com/community/default.aspx?f=16&m=1724475

 

 

http://www.healingwell.com/community/default.aspx?f=16&m=1453835

 

 


 

 

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Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 4/5/2010 11:24 AM (GMT -7)   
Hiya LL. I do hope today is a lowered pain day for you and if not then I give you soft hugs. As you know I too am waiting to hear from my ins as to weather I get the SCS or not. I have been at this for 6 years now and I've gotten really down about results. I now have my psych doc saying its a go and the psych eval that I did last week.....that psych said he thought it would happen as well. But, for me its not a real answer until I hear from Wyoming WC saying YES go for it!! Until then....I am in limbo with too much pain and tooo many medications. My goal with the SCS is to at least get 40% reduction in pain....that's all I want. If I get more then that....its a wash, but....40% is a real goal for me.

Okay having said that........I have found a site that might help you. www.raceagainstpain.com Great site all about SCS!

hugsss

Scarred
I live to "Tame My Pain!" 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/5/2010 2:46 PM (GMT -7)   
Hi, Laurie,
I have missed you! I'm glad to see you post, but sad that there are more problems than I know of (as per White Beard's post). I'm sorry you're having more challenges.

I wish I could add more to the SCS info, but there are a lot of old threads here with some pretty good detail. Have you tried searching for them? I think that's a good start because it seems a lot of members who used to post a lot have been MIA on the CP forum in recent times. (you being one! :-)) I haven't seen fatherjohn post in a long time but maybe he's reading and will see this. He was having so many troubles when he last posted, I'm not sure how he now feels about his SCS. But off the top of my head I would think if you believe it might help you, and a doctor you trust recommends it, a trial couldn't hurt. Or could it? Is there any downside to having the trial - there's always risks, as we all know to procedures. But I don't know how much of a risk the trial is.

I'll follow your thread and offer my support, even though I don't have much more specific info.

Hugs to you my vamp friend! smilewinkgrin

PaLady

BethW
Regular Member


Date Joined Mar 2010
Total Posts : 132
   Posted 4/5/2010 4:53 PM (GMT -7)   
Laurie,

I just completed a trial for a SCS for DDD. I'm not sure how much I can help, but I'll do the best I can.
DDD (4 levels- L2-3 thru L5-S1)


Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 4/5/2010 4:58 PM (GMT -7)   
Hi Laurie,

I can't add anything about the SCS as I've never dealt with it for my cervical issues...but wanted to say that you and your hubby are in my prayers for all the issues you are facing...

I have a great friend who comes to visit for a few weeks every couple of months so she can see her Nephrologist...and I know that it is a very difficult disease to live with...

Thank you for posting and updating us...

Take care
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Dec 2006
 
 


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/5/2010 7:18 PM (GMT -7)   
One good thing is I don't have to jump through hoops to get this trial.  My insurance says all they need is a clean bill of mental health so I don't pull the thing out when its inserted.
 
I'm worried about going off my pain meds to do the pain diary then off the meds during the trial.  I don't want to be in bed crying.  I can still work, thats another reason they want me to try this is to keep me working.
 
PALady you are right I will research the threads.
 
Scarred I will look at that website.
 
Beth how was your trial????
 
Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........


fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 4/5/2010 7:48 PM (GMT -7)   
Laurie, I know seeing a post from me is strange. I took a sabatical for personal reasons. Yes I did the trial and went ahead with the SCS. I did not have a good PMS dr but was able to work things out with my PCP after the implant. My SCS unit is on 24 hours a day. I increase the intensity as pain levels rise instead of taking break through meds. I am managing much better than I was. At first my meds were cut way down with the hopes that the SCS would replace most of the meds. Withouy going into detail about what has been going on in my life, my PCP has increased my meds to a point that is higher than before the implant. His feeling were I was undermedicated for a long time. Now by following a strict med schedule (keeping on top of the pain) I am managing so much better.
 
The trial was not real a real strong help and my surgeon almost decided against the implant. I get much better help with the SCS then the in the trial period. (not uncommon). Even though the idea originally was to reduce the meds, my quality of life was beyond desperate and my stress level was out of control. The increase in meds was needed along with the SCS.
 
If the dr thinks that there is a possibility of the SCS helping, I would recommend the trial and then see what the results are. Even during the trial, you can have adjustments made to see if a greater degree of relief can be possible. If for some reason it does not help and is uncomfprtable, it can be removed early. Since the procedure for the implant and the trial are not connected, you can wait after the trial to weigh the options. Please let me know if there is anything specific that I can help with. Hope all goes well.  

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/5/2010 8:18 PM (GMT -7)   
Fatherjohn so nice to hear from you. When this was brought up at the office you were the first person I thought of. (remembering back when you went through the trial) I'm glad you came out of the woodwork to give me a your insight.

I am also undermedicated thats part of the reason they want to try this trial. (before they start to bring out the bigdog meds) If I start stronger meds I could be out of a job. I need to really think while I am working.

One thing you can help me with is...... what was it like being med free through the trial? I heard some doctors will let you take some of your pain meds. I haven't gotten that far with my questions yet.

I never thought I would be a candidate for this implant. Never brought it up I thought it was used for limbs and so on. But to use it for kidneys is kinda strange the doc says but its worth the try.

Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........


fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 4/5/2010 9:05 PM (GMT -7)   
Laurie, During the trial I was still able to use some meds but very limited. The tingling sensation takes a bit to get used to and even a week is not long enough. I played with the intensity as I wanted to know what limits I could stand. I would turn it up to the point that I could barely walk. That certainly masks the pain but you cannot sleep like that. Thats is when they tried different sleeping aids with me that I did not respond to. Now, there are times even at night I turn my unit up as far as I can stand it when the meds are not taking care of the pain. I leave it that way just to escape the pain even if just for a short time. That is one of the benefits is you get to control the level it works at. i have even been taught how to reprogram my unit without having to see the rep. Since I no longer have a PMS, my PCP is learning along with me.
 
I was able to handle the break from the pain meds during the day as I worked 12 to 14 hours a day and denied the pain. (which caught up to me). The biggest problem was tring to sleep at night with the pain and experimenting with the trial stimulator. As I said earlier, even if you go for the trial and it does not seem to work, you should be able to stop the trail immediately, at least I had that option. As PAlady stated, make sure you have a good trusting relationship with your dr. 

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 4/6/2010 4:01 AM (GMT -7)   
FJ and Laurie I was told by my PCP that I would not be decreasing the pain meds until after the permenant. Now if I decided to decrease some of the pain meds while doing the trial I am sure my doctor would be okay with that. But, the one thing Worker's Comp wanted was to have me completely off all my pain meds before the trial. My doctor thought this was ludicerous and told them just that.

Anyway....I am hoping by the 13th I will know what we are doing.

Hugsssss

Scarred
I live to "Tame My Pain!" 


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 4/6/2010 6:07 AM (GMT -7)   
Laurie,
I just wanted to pop in and says hope the SCS works good for you.
Lots of soft hugz and keep us posted when you can...
((((((((((((((((((((((((((((((((((((((Laurie)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/6/2010 7:58 AM (GMT -7)   
Thanks Charts!!!
 
Scarred it has to be heck in dealing with WC.  One good thing is I'm dealing with Blue Cross they arent as much of a pain.  This morning I am calling for the mental eval, my doctor laughed and said if you were crazy we would of already caught on. yeah
 
Fatherjohn...  I do the same thing with working long hours and pushing the pain aside.  As you stated it does cause terrible concequences.  When I get out of the car it seems my body locks up and everything goes on fire.  Just to sit hurts.  But then an hour before I was on an adreniline high at work I didn't even notice.  Its strange how the mind works.  I get so wrapped up in the high pace of push push push at work that even if I notice I just go onto the next detail I need to push or fix.  There are times at work that when I can breath and slow down I start to get sick to my stomach.  Thats when I know its time to take my meds.  I also take meds to sleep but when they wear off... oh man does it lead to a long morning.sad
I just had a weeks vacation of doing nothing but sitting at home and I hurt the most then I have in a few months.  Thats telling me I better not slow down..lol smhair
 
Hopefully with the SCS it won't be such a crash when I get home at night.
 
I better get ready for work, sometimes I think I like work so much is for right now I hurt sitting here but when I get to work and sit at the computer it seems to melt away.  Can't we bottle that up and give it away to everyone????
 
Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........


Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 4/6/2010 9:40 AM (GMT -7)   
Laurie; Yep it is horrible working with WC! Good news that BC&BS will pay for yours though. I envy ya hun! You still have to do the eval right? So your probably looking at a month before you will see the trial. Gosh do I envy you LOL!! I do hope it works for you hun.

Hugsss

Scarred
I live to "Tame My Pain!" 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/6/2010 12:56 PM (GMT -7)   
Laurie,
Best not to talk about the vamp thing during the mental health eval. ;-)

Couldn't resist....:-)

PaLady

BethW
Regular Member


Date Joined Mar 2010
Total Posts : 132
   Posted 4/6/2010 6:06 PM (GMT -7)   
Laurie,

I wasn't required to go off my meds before the trial began. I did get some relief, but we decided not to do the permanent implant at this time. I'm in pain, but it's well controlled with medication and the TENS unit.

I'm iffy on whether or not a week is long enough as well, but I can the reasoning behind not doing it longer (chance of moving the leads or infection). The day the leads were placed and the next day really stunk. You really need a couple of days just to get over them messing around before you can gauge if the SCS is helping at all. You need to try to do as much normal stuff as you can, or you'll never know how much it's actually working.
DDD (4 levels- L2-3 thru L5-S1)


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/7/2010 5:57 AM (GMT -7)   
PALady you make me laugh and thats such a good thing wish you lived closer yeah yeah
 
Beth I was also wondering about that, if it was enough time to get a good reading.  Both you and fatherjohn answered that one for me.  Work has already decided I can just sit.  If I do what I usually do I would be breaking all restrictions. smhair
 
Another question.....  The day you have the leads put in place is there discomfort?
 
Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........


rusty3770
New Member


Date Joined Apr 2010
Total Posts : 2
   Posted 4/8/2010 3:27 PM (GMT -7)   
Thanks LLPLUV thanks for inviting me to this forum. Will I need to post the description I gave in the other forum in here? I am new to this forum and am having trouble getting around in it. How do I find this forum with new replies without going through the e-mail?

I am considering the medtronics implant, have not done the trial but my pm doc is suggesting it. I am scheduled for another fusion in June or July, they are not sure when the opening will come yet, and I am trying to avoid another surgery which will be my 6th one.

Just trying to find information about the implants. Most people in here seem to not have such good luck with them, some do, but maybe the good impressions are not being posted.

I have been on vicodin, because I cant take the other stronger meds like oxycotin because im allergic to morphine so im running out of options. I have had fusions in my back and neck and more are going bad. Any information would be greatly appreciated.

fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 4/8/2010 7:35 PM (GMT -7)   
Laurie, The day that the trial leads were placed in, there was some discomfort but not too much. The next day I was working as we wanted to do the trial while I was active at work since I worked so much. The implant itself was another issue. You might remember my quackologist refused to allow me to be on pain meds after the implant and before I went home. With thr trial, I was not allowed to shower for the week since there is the possibility of infection even though they use more tape than you think possible to tape the leads down. Another horor story. When my pms removed the tape off my back, he ripped it fast to get the pain over with but ripped the leads out at the same time tearing the skin where the leads were inserted. Enough of the war stories, just ask plenty of questions of you Dr and don't assume they will tell you everything.  

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13461
   Posted 4/8/2010 10:03 PM (GMT -7)   
Laurie I don't have one, I have the pump. So very glad to see you post, although I know you & hubby have really had a time of things. I hope Frances will see this and pop on, she has the SCS. She has done very well and she can give you some good input about it as well. Take care gal.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/7/2011 12:16 AM (GMT -7)   
Laurie,
 
I had a successful SCS trial just back in February. I haven't read all the discussions between you and FatherJohn, but I can tell you that because my pain is located in my right arm the leads had to be put up into my neck near C2. With needing leads implanted that far up in the cervical space there is a whole bunch of issues that I can discuss at length if you're interested.
 
My PM doctor, who did my trial, did not require me to cease taking my meds. He merely requested that I go without as often as possible knowing how horrid my pain is on a day to day basis.
 
I had a Bostcom Scientific PP model installed and my rep was fantastic and very supportive; I heard from her every day, and the one time I needed a readjustment for better coverage she was out the next day to do it.
 
There are some minor nuances that come with the trial; tape and padding on your back at the insertion site. No baths or showers! If you have long hair, have someone help you wash it in the sink.
 
Because you ahve to be awake for the insertion they kept me lightly sedated, but I was in discomfort for the rest of the day, mainly my neck because of having the wires shoved up into that region.
 
As many horror stories as I've heard about Medtronics I have a neighbor across the street who has had her Medtronics unit for a couple years now, and she loves it! It doesn't give her any problems and has actually restored a good portion of her life back to her.
 
For me the SCS implant is really the only option to help manage my increaseing/spreading pain, but that's the nature of the beast I deal with.
 
Any questions, ask, and I'll do my best to get back to them. Tonight I need to keep this short as I'm tired and my hand is to swollen and painful to keep typing.
 
Where, physically, is the pain your doctor is trying to mask with the SCS?
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled, on Percoset.
February 2011 successful SCSU trial
No surgeon willing to do my SCSU Implant

Post Edited (Rhaevin) : 4/7/2011 1:19:34 AM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13461
   Posted 4/7/2011 10:25 AM (GMT -7)   
This is another older thread folks. We had some problems yesterday here at the forum and I think somehow with the problems that were going on it brought this old post up. It you will look the dates are out of order, so with this in mind let's not post anymore on this one. If someone wants to continue on with this subject please start a new thread. Thanks.
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