Difficulty walking after Implanation of stimulator.

short and sweet rep will call tomorrow.  I have typed this twice and twice it was erased.  So tomorrow when I can think rationally I will try and reconstruct my day.  Right now now happy camper.  Going to take my new meds and go to bed.  Talk in am.  Too angry to try and write it again.  Nite nite.

Good night Dee I am so sorry that you had such a bad day. I will be looking for your comment tomorrow.

I have been making many changes on my unit but I am still getting a lot of pain. The pain is very strange, I have a pressure feeling in my back and leg, my mood seems different too. One of my Reps mentioned that if I was changing my moods then I need to turn the stimulator down. Every 4 hours I have been turning it down with no change. I will continue doing that again tomorrow.

Ladies I hope that both of you get some pain relief.

Dianne

Good luck.  Get a good nights sleep.

Dee

Good morning my fellow triplets.  So yesterday was a day to say the least.  I shall be as thorough as possible and still have the right to stay on here.  Get my drift.  I saw my PM yesterday and had a lengthy discussion about leads vs. paddle.  I was armed with all the new info. supplied by Lynn.  I must say she was impressed and corrected me about the N product.  OKay with that.  The PA did not understand why I could not have continued surgically with the leads as that was where the improvement was done,  Explained not given option and did not know about it until later.  Asked Dr. about using the leads, and here Lynn was correct about their reasoning.  It is all about anchoring the wire as it has a tendency to float.  Explained that I understood that logic, but I knew for a fact that there are patients who have the leads and they are anchored quite securely.  I said I personally know a patient and she is getting boku relief.  There was some small glitches, but they seem to have been rectified.  Not much more conversation on that score 

Then we discussed the difficulty in getting FU care as the rep is basically alone and having to wait a lengthy amount of time between visits for either tweaking or totally reprogramming.  No happy camper.  Gave me some pointers of which will talk about next.  We talked about a new med that costs $700. "What are you crazy?"  She was giving me the huge sample pack called Grasile.  It is the main ingredient in Gabapetin.  Well when I explained my problem with the Gabapetin the packet was gone.  We settled, well she did and I said I would give it a go.  But if I felt strange in reactions to the drug, I would immediately call and we will wean off.  Amitriptyline 10mg for x # of days finally going up to 30.  I know and spoke about the weight it puts on people.  We joked about the little old fat lady a) because of new drug and b) lack of exercise due to intolerable pain.  So there will be tape across my face and lots of water by my side.  LOL

Got home and found my papers to contact the Company that makes the device I have in me.  After having to redial twice and 5 prompts, Alleluia a human, a real honest to goodness live person.  Explained the problem of getting timely after care for the stimulator from my rep as he is working alone with no help.  Totally unacceptable.  Explained that, in my personal opinion, too many implants being done in my area without adequate coverage for FU care.  I said I am sorry that I maybe overly upset but as a patient struggling with chronic pain and no relief, I think waiting upwards of 3 weeks inbetween appintments is totally unacceptable.  I explained my amazement that the product used in the trial (i.e. leads) was not the product implanted (i.e. paddle).  So the reduction in pain gotten in the trial cannot be programmed into the paddle.  This leaves me, the patient with begining anew trying to find the right combination to achieve maximum pain free living.  I the patient was never told by anyone, your rep., the surgeon and my PM that there was a choice between the two.  I would have liked to be given the choice after listening to all parties involved.  I could then have made a more thoughtful decision on which way to go.  She understood and would relay information.   (? hopefully).

I was asked where I lived and gave that info., gave reps. name.  She in turn was able to give me a new clinician for the rep and his RSD manager with phone numbers.  I thanked her for her listening to my tale of woe and hoped that she would impart this conversation to the powers to be telling them that I am one of many who are in this predicament.  Any help in the future would be greatly appreciated.  So being the gutsy one I called the Mgr.  A ittle gruff at first.  Lynn I was a cool cookie.  I explained the amount of pain and lack of FU from the rep. as he lost his first clinician due to medical reasons.  I emphasized the paramount urgency needed in getting this man more help.  I specifically said, as a patient who is struggling to get the most from this stimulator and have to wait lengthy times between sessions with the rep was not acceptable for any reason.  I politely said, "Maybe too many surgeries is hampering the reps ability to help those who have had their surgeries"  We are struggling, with both surgical pain and chronic pain as we have not yet found the right combination for the stimulator.  So where that leaves me is up for grabs.  She asked me to up the intensity twice in 15 minute increments and in 4 hours text her back with the results.  Uping the intensity just 2 has increased the tingling down the right let but has not even touched the pain in the butt.  She texted me back and said I would receive a phone call from the rep tomorrow which is now today.  So that was my day in a nutshell.  Where we go from here, I honestly do not know.  I will be calling the hospital records dept. to get a copy of the or report and the xray they took right after surgery.  Even the PM did not know if I got the original paddle, which is wider or the newer slimmer version.  That should be in the report or the Surgeon's office should have that info.

That's all folks.

Your fellow triplet.

Dee

Replying to my previous post.  Heard from my rep.  Cannot see me till sometime next week.  UGH

Dee, I am sorry that I haven't commented earlier. I think that I mentioned in an earlier post that I has some kind of reaction after being adjusted earlier in this week. I have just been out of it and not doing well either. When I left the Rep my setting was at 12 and all week I have been working the number down to see if that would help. This morning when I got up after a painful night my setting was at 2. I took an Oxy which I do when I get up each morning and I changed the setting to 3, I plan on changing it back up every 4 hours to see if I can get some relief. The good news is that my insision sites are doing better and I'm not having that screaming white pain. The bad news is I am back to the old sciatia pain and with it running down my left leg. No relief what so ever. I have an appointment on Monday with my Breast Cancer Surgeon, I will see if the Reps are around anywhere to get another adjustment. I doubt that I will be able to see anyone. Perhaps I will be better when I keep doing more adjustments.

Have you been able to get any relief at all this weekend Dee? I know that you are like me, we are so tired of hurting. I really, really want a life back outside of the house and Dr appointments. 6 years and 9 surgeries is enough.

Let me know how you are doing.

Dianne

Dianne....RELIEF surely you jest.  What is that word?  I don't think I know what that word means.  If this whole saga we are going thru wasn't to painful, I might be able to laugh.

I did practically zip today.  I did manage to wrap and put away my Easter decorations.  That encompassed bubble wrap, putting them in two drawers and one plastic container.  Two trips to basement and that was all I could manage through the pain.  This is getting real old real fast.

I just love when the medical profession, asks me if I am depressed.  My answer is always, "Well wouldn't you be if you were in my shoes!"  They do get silent.  Then they say you might need a slight antidepressant that has a painkiller in it.  I remind them to look at my file and see all the meds I'm on plus all the vitamins and you want to add more.  ARE YOU KIDDING ME!!!!!  The conversation ends.  I laugh to myself.  Hmmm just give the old one another pill and she be happy.  Not likely,

Do they think we are making this pain up.  I know Monday, when I see my rep, he's going to suggest that there is something else going on and it is not the stim.  Wonder if I lost my cool what would happen.  I called the surgeon on Fri.  Never expected that anyone would call me back.  Explained pain coming from battery site and was new.  This was their reply. "Pharmacy for lidocaine spray,  voltaren gel, Aleeve, NSAIDS., and those should help."  Cannot take those as they gave me an ulcer, thatbI never knew I had....no symptoms.  I have used the voltaren gel.  Need an RX. And it is expensive.  So that was of no help.  I said if you see me on Monday limping, you know it's not working.  

Maybe be on Monday. Morning, I will call Abbott tech dept. and find out how many programs can they use on the patient with the paddle.  Cause Imam pretty sure we have gone through already.  Maybe when I see and talk to everyone and they impart their pearls of wisdom, I will borrow my late daughter's favorite when lack for a better phrase. WHATEVER!  Then maybe they will know I have had enough.

I think your hubby maybe on to something.  When do we finally throw in the towel that we got a dud.  For it is coming soon.  But then what and where do we go for relief.  I am calling PM on Mondaynand ask if she can recommend an acupuncturist and maybe a good hypnotist.  LMAO at where my brain is taking me.  

Well fellow triplet, I hope you nite is better and tomorrow is bright and sunny for us and less pain than today. 💤 😴

Dee

Lynne you are so full of wisdom.  Haha like bet you got the fat one and I am willing to say that you are probably right.  

Thought the day was going to be smooth.  If that happened, I would faint in shock.  Was to meet rep at 11am.  Borrowed daughters car as hubby had jury duty.  Just my luck.  Get 3/4 way there and hear phone screaming text message.  Found gas station, pulled in, it was rep saying he was on a case could I come at 1pm.  Sure. I say.  Now to myself I am saying,  "I just love driving in pain no sweat."  Get all the way home and here comes my daughter and the day care kiddies coming to walk the pooch.  Here she is pulling the two little ones in a train wagon, the next two one with a lawn mower  and the other one pushing a little shopping cart.  It was funny as heck.  She yells "Mom what the he## are you home?"  Explain.  So walk with her and right leg is screaming at me.  She leaves at 11:30am.  Ahhhhh now to sit and have some lunch.  Right.  Wrong.  I faintly hear my cell phone screaming again text message, then phone rings another text.  Look at phone battery on last leg in its life. Rep "can you be here by noon."  If not then I would have too wait until 2:30".  Songet

oops rest of story.  Get in car drive like a lunatic and get there before him.  Phew.  Reprograms it.  Said will let him know in 5 days.  Now driving home and now the program is in tonic mode constant. What fun that was.  I just texted and asked how to stop tonic.  Answer just keep dialing it down.  So already down 2 will keep going.

That was the day.  OH he said he may have to stop meeting one on one as he has no help and go to clinic mode.  Meaning you go sign in an wait.  Oh no I say to myself.  Not going to go and wait in line like going to the DMV. LOL

Have a good night ang have a good laugh.  

Dee

Lynne he did know I was in tonic when he left.  I only noticed it when I got in my car.  He was already gone.  I have lowered it from 12 to 6.  No tonic.

You are a freakin nut at 29 not age but stim.  If I were at 29, I probably would be in a coma or deal from electrocution.  LMAO

Here it is 5 days after reprogramming and there has been no significant decrease in my pain and being able to walk.  I don't know how much more I can take.  I also don't know what options I have.  On 5/23 I see the PA at the surgeon's office.  Then on 5/30 PM.  I will be speaking with both of them.  I have been keeping a journal since the surgery implant on 3/2.  Hope they might have some suggestions.  If only there was another rep in my area to try their hand in it.  

Hope you and dianne are doing better.  One of you must turn the corner as it seems that it will not be me.

wishing you both good health and less pain.

Dee

 

I haven't been on much this week, no I am not any better and not any worse either. I have an appointment coming up this coming Wednesday for a med refill and also an adjustment. I'm not expecting any improvement then either.

It has been a very rough week, a dear friend in our small town was hit by 4 teenagers who were going to school. They pulled out in front of her, they were all life flighted  to a trauma center in Fort Worth 60 miles away. She died shortly after arriving at the hospital all of the teens are still in critical condition. We live in a small town, under 3,000 people. She was a life long resident and taught kindergarden so long that she taught her students children. Today was the funeral, It was at our church but it was standing room only, they live streamed it so we watched it from home. We went to the visitation last night and the lines were way out the door.

Anyway, that is what has been going on with me, it made my problems seem so small compared to losing someone like her.

That's terrible Dianne, she probably taught the teens who hit her. I hope they at least pull through, they have a whole life to live. Yes, it does make our problems seem small. Do let us know how your appointments go.

Lynn

So sorry Dianne to hear of the tragedy.  You are both right about what we are going through and something like this happens, it puts it all in perspective.

Dee

Thank you Dee and Lynn, it has been a very rough week both emotionally and pain wise. We are still emotionally in shock but we will be better in time, so many in our town are feeling the same sense of loss.

I have been adjusting my iPod down from 11 where I was at when I was adjusted a few weeks ago. I had gotten down to 2 and have been working myself back up and I am back up to 11. I plan on moving it up higher and higher to try to get some relief. I can't tell if it is sciatica pain or from the battery pushing on something.that is causing a whole lot of pain.

I am open to any suggestions, today is a totally bad pain day. I am sittin in the family room with a pillow behind me to help a bit. It is time to take another Oxycodone but they are losing their affectiveness and my pain Dr has started lowering the amount that I can get. I use to have enough for 4 times a day, now the prescription is for only 2 times a day. I have to crawl into bed after I have taken my 2 Oxycodone allotment for the day and pray that it will relieve this horrible pain.

I am sorry to dump on you ladies but today is such a bad pain day and I know that you 2 totally understand that.kind of pain. It is a little after 1 p.m. And I will probably have to crawl back into bed in a few minutes to get some pain relief.

Oh Dianne, it sucks that they are cutting back your pain pills when they haven't given you any pain relief, truth be told they have made you worse, plus you are experiencing tolerance to the oxy, so that the two pills a day affect you even less than they did before.  It's just not fair and they know it.  Why were you adjusting your ipod down?  Two is so low?  I have never been below a 12 and I wasn't there for very long LOL.  I have found I do best in the twenties.  And when I have really bad acute pain, like I did when I sat for too long and my hips were killing me, I jacked it up to 29.  It helped the hip pain finally at about 25.  I did have the tingling then, but heck, it helped with the pain.  Sonya, my rep, wasn't happy with me, but it works for me.  Right now I am hanging around 23-25 , when I hit 25 I will sometimes have a barely there tingle.  However, if I have it lower than this, I get SI joint pain or low back pain.  The hip pain and even the aftershock from it is completely gone now.  She has me programmed to run a minute on/a minute off, LOL I will be running out of juice too soon, so I suspect we will be re-programming again soon once she finds out my hips have toned down.  I can tell you now that my battery is in a good spot I now know that the battery pains were all very odd pains besides the definite sciatica.  The battery also gave me bone pain, muscle cramping type pains and SI joint pain.

Thank you Lynn for your comments. The reason that I took my unit down to 2 is because the Reps said that often times "less is more". They said that I should take it down to 2 and then I could slowly take it back up. I was told to only change it every 4 hours either up or down. So I have finally gotten it back up to 12, in 4 hours I will go up another notch and slowly get it up higher. I haven't had any relief from this stimulator at all and the last 2 days I have been crying in pain. I have already had my max of 2 Oxy for the day now I am in bed because that is the only thing that I can possibly do to hel with the pain. I am discouraged and in pain, when you have taken yours up so high Lynn did you wait 4 hours before you changed it again or did you just go like a speed demon to get up there?

The battery is diffinately a problem, I just hope that it hasn't slipped and that they have to reopen the "pocket". My body is so tired and worn out, 9 surgeries in 6 years is just way too much, I don't want it to be 10. Did they reposition your battery Lynn and where is it located at now? I'm pretty sure that you told us, I just don't remember. My brain feels like Swiss cheese, I forget so many things, I probably should carry around a note pad around and  write things down. If I do that how will I remember to carry the note pad around?

I am hoping that I will sleep better tonight, I know that I need to sleep in order to heal. I am open to any suggestions that you have, I don't think that Abbott/St. Jude, pain Drs or Neurosurgeon will be much help for us. I feel like I am on my own. They probably feel like they are being helpful but I feel like I am on an island with a leaky raff to get help.

 Dianne and Lynne I wish I could find the right number for me.  It seems the higher I go the more tonic it becomes.  I feel like little shocks every minute or two.  Couldn't get any rest.  But the pain in my butt dowm the outside of leg to foot has gotten 10x's worse.  I can hardly walk at all.  There is going to be a come to Jesus meeting in two wks with surgeon.  Will text the rep tomorrow and tell him, it is not working at all and leave it at that.  Will see if he offers to meet me and try something else.  I am tired of feeling like he's doing me a favor by meeting me.  So WHATEVER.  My new word for all of them.

I just assume they remove it possible as it isn't doing me any good at all.  Dianne, I feel like my battery moved slightly.  Wouldn't that be awesome if that was the problem.  Need to find out what nerve roots go to where my pain originates from and zap. The heck out of them or Just burn them into oblivion.  Tired of the constant pain.  I am over it.

Lynne wondering if  both Dianne and I had the leads, if we could up the controller and maximize our pain.  Just askin?  Dianne do you have room in that leaky boat.  With two bailing out the water we might just survive. LOL

Got mine up to 8 any higher it's bzzzzzz off bzzzzz off.  Just try and sleep in the off mode.  Like trying to sleep in between your husbands snoring.  Haha.

Hope you two have a good evening and a better day tomorrow.

Dianne