Nerve Stimulator surgery (BURST)

Hi there.  Glad to hear we are both on the same path.  I did not have to have bandages changed.  Wore none.  After surgery no shower for two days then I could.  No heavy scrubbing allowed.  They wanted the staples to heal and stay air dried.  No problem there.  The problem for me was wearing a bra. I fixed that by looping a gauze pad over my bra.  Working well.  My original surgery for my back is L2-L5.  But the stimulator is placed much higher but I won't know until tomorrow exactly where the stimulator is placed in my thoracic.  So for me no more MRI's.  I can live with that.  I hate that damn tube.

When I meet with tech again and program it some more.  I will ask if the settings on the trial stim. we're saved.  If so, can we find them and try them.  My only concern is that what was a test stim, is different from the final product.  But I will ask that.  

I knew full well ahead of the surgery, that it was going to be quite painful.  So while in recovery I kept asking for pain.  My pain level was a steady 9.  The IV drugs worked great.  But moving was excruciating.  Trying to get up was tearful for me.  I don't handle pain well.  Good luck when you see your pain Dr.  I see mine on Wed as first follow up.  I will keep you posted on what transpires.  I will ask my surgeon for a copy of my surgery as to what they did.  This might explain whynI have pain where I didn't think I would.  Hope that helps.  Will you posted and likewise.  Hang in there Dianne we are on the same road.  Take care,

Dee

Hi Dee, you give great follow ups, thank you. I met with the St. Jude Rep yesterday, my pain Dr's office is an hours drive away. I live in a small town in Texas so every time I need to go to a specialist I have to go to Fort Worth.

Riding in the car is often painful but especially so since the trial wasn't working and I hadn't taken any pain meds since the trial was put in on last Thursday. By the time I arrived the nurse told me to go ahead and take a pain med (Oxy). When the Rep tried to do some adjustments on my trial I was still crying from the pain, it felt like he was upset with me. I kept telling him that I was in PAIN. He had to stop and wait while I did some breathing to bring down the pain.

I had the machine set at 7 which wasn't helping at all, he brought it up to 10 and then did some adjustments to the settings. He had the non burst on (I forgot what that is called) so he was able to do adjustments to that area to get the pain in the correct area. I actually had several hours with very little pain and it was like Heaven, we went out for lunch and stopped at Costco on the way home.

The Rep wanted me to change the settings today to go down to either a 2 or 3 because he said that sometimes less is more. So, an hour ago I moved it from 10 to 9 and in a few minutes I will change it to 8. I can already tell that the pain is starting to come back so I am not sure if I should do anymore changes down. Once I get down to 2 or 3 then I can move it up to as far as 15 or 20, changing the setting each hour.

I go back again tomorrow for another review with the Rep, so hopefully we will find the right setting for me. I just moved it down to 8, I have a feeling that I am in for a painful day.

Dee when you did the trial, how many days did it take before you had relief during the trial? You mentioned putting gauze behind your bra, I can't put a bra on because of the pain, it just tightens in the back where the bandage is. Fortunately or unfortunately, I had breast cancer last year and after my surgery I couldn't put a bra on for several weeks. I bought several "teddies" so I am using that when I leave the house. But I rarely leave the house anymore do to the pain so I stay in oversized shirts with no bra, when I feel up to it I put on my jeans.

I didn't mean for this to be a book but I wanted to compare what was going on with you and with me. I hope that you are able to make it to the Dr tomorrow, it sounds like you are in the East with that big storm. I know that you are anxious to get the setting correctly but please don't take any chances. Falling in the snow or ice will just send you way back again.

I look forward to hearing how your appointment goes tomorrow, take care

Dianne

Hi Dianne. Glad my posts are helpful.  I always should be cautionary, that everyone's pain is not the same.  Well though blizzard conditions, Mr. And Mrs. 😜 drove in white outs to get the staples out.  I am a chicken when it comes to pain.  I was hanging onto the wall and breathing, as if I were in childbirth.  It hurt.  She went like gangbusters through that little mind field of staples.  So glad they are out.  Am sore now that they are out. 

Follow up again in two weeks.  The surgeon and her staff follow you for 1 year.  Almost fainted with at news.  Reasoning, they want to make sure nothing goes wrong.  I am good with that.  No lifting over 15 lbs.  No  excessive bending and stretching. I am turning a blind eye to housework.  For how long, I am not sure.  I can drive but must turn the stim off.  REASON if the stim might shoot a burst down your driving leg causing you to accelerate.  Did not know that.  But right now I have no desire to drive anyway.  So that's my update.  Tomorrow is follow up with Pain Mgmt. Dr.

Feel better and just rest, that's totally on my agenda.  Be well and hopefully pain free soon.

Dee

Hi Dee, Once again thank you. I had a fairly good day yesterday. I played around with the numbers and I think that I have found the number that seems to give me the most relief and that is 10. Do you have that same St Jude "iPod" thing to change your settings or did you only have that during the trial?

I go back again today to see the Rep, I'm not sure when they will take it out, how many days did you have the trial in? I know that this is short but I need to start getting ready to leave to see the Rep again, I will touch back when I get home.

Hi Dianne......my brain is on vacation.  Is your stim. In permanently???  I live in upstate New York.  I still am having pain and not getting the relief from the stim. yet.  Saw pain mgmt. Doc. the other day.  Just love  ?? this Doc.  One of the most caring and compassionate Drs. around.  She is going to talk to the rep for me.  The original rep. was awesome.  But she had surgery yesterday and will be laid up for awhile.

My Dr. asked me if the trial setting that work was uploaded to the permanent implant.  No but she will discuss that with the rep.  Hopefully they saved it.  I tried sleeeping in my bed.  Yeah that's not happening.  Lasted 3 hrs then down to the recliner.  I just keep writing the issues down and will discuss them with either the surgeons office or the pain mgmt or my rep, if he ever gets back to me.  

You asked me about BURST 2.  That is just the setting that one has no physical feedback from the stim.  Guess you could say it is the quiet/silent mode once calculations of numbers are programmed in.  I will you keep you posted and you do likewise.  Motto for St. Pat's Day.  "Keep Smiling!"

Dee

Hi Dee, I hope that you have been able to get some relief. Did the Rep get a hold of you yet and did they know what the adjustments were so they could set them for you?

I don't have my permanent stimulator in yet, I am still having the trial. I go back in on Monday March 20th, at that time they will either remove it or have it continue for a few extra days. I am certainly taking less pain meds (Oxycodone) but is it enough that I want the permanent stimulator put in, I just don't know.

How much pain were you able to be relieved of during the trial? Today is National Quilt Day and I went to a quilt shop and they were having demos. I left home around 9:30 a.m. And I didn't get home until 4 p.m. I had gone out to lunch with a friend and we actually sat and visited for quite a while. I'm not saying that I wasn't in pain, but I was able to be out of the house by myself. I rarely go anywhere by myself unless it is water therapy or a Dr appointment when my husband isn't able to go with me.

I will let you know how it goes on Monday and I look forward to hearing about what is going for you.

Dianne

Hi Dianne,  I thought you were still in the trial.  On the trial, it was Day 6 when the one rep came to my home and totally reprogrammed the stim.  The following day I started to get relief.  Good relief.  Then in 2 days the trial,was over for me.  My level of discomfort was reduced about 40%.  For me that was good enough.

Right now I am not even anywhere near that.  Have to get back with the rep next week to get some changes made.  My pain level is a constant 9 right now.  Even the 2 mags. of hydromorphone doesn't help.  So I just take plain Tylenol.

I drove for the first time on Fri.  I was exhausted when I got home.  It is uncomfortable.  Don't think I want to make a habit of it.  Sleeping is still an issue for me.  I believe it is because the stim is not being maximized.

So Monday will call rep and try to set something up.  When I talk to the rep., will,ask if they can set the stim to just before it was removed.

Good luck on Monday.  If you are not getting at least 40% reduction in pain, that would be a tough all.  For me, I would still go for it regardless as there were no other options for me.  

Good of luck on Monday.  Keep me posted.

Dee

Hi again.  I would ask the rep and the pain mgmt. Drs.  What % they think you will achieve if you do this permanently.  I will not and cannot take the drug you are on.  The whole purpose of these stimulators is for us to get pain relief with maybe a tylenol or two not the opiods.  I have some, but do not take them.  I do not like them at all,.  Plus the fact they don't touch the pain.  I am calling the rep tomorow and ask for a re programming as the pain is back to where it was before the permanent implant.  Not a happy camper.  I have not slept in a bed since 3/1.  I cannot lie on my side without pain shooting down the opposite side.  So for right now, it seems I have traded one set of pain for another.  Makes me grumpy.  So if he is not going to be helpful, I might blow my top.  Right now sitting here on the computer is agonizing.  So will make this short and get with you on my I pad tomorrow and let you know how I fare out.  Have a good night and less pain.

Oh Dee, I am so sorry that you are in so much pain. I do hope that they will have some answers for you, it just seems so wrong that people like you and me have to suffer so much for so long. I know that I shouldn't be complaining because some people have it so much worse.......but.

Does it hurt you to sleep on your side opposite of your battery? I generally sleep on my back but I know that will not be possible for me if I get the permanent stimulator in. If I do sleep on my side I generally sleep on my right side so that would mean getting the battery on my left side. The problem with that is it is my left lower back, sciatica and down my left leg that I get my pain. I am concerned about having the battery near any of those areas.

Is your Dr making you wear a back brace? My pain Dr wants me to wear one 24/7, I tried to wear it at night but it was excruciating because it was pushing onto my raw back. The first several days after the trial was put in I was in really awful pain. How was your trial compared to your actual surgery in reference to the pain?

I look forward to hearing how your day goes tomorrow and I will let you know what they are going to do about my trial.

Dianne

Hi Dianne.  I did not wear a brace before or after.  I don't know why a brace after.  It will cut right into the power pack.  You will be sore enough there and that pressure upi dp not need.  Mine is on the left side.  You can sleep on your back after surgery.  Cause when you wake up you are certainly on your back.  I spent one night and turning was not a fun job.  I had a great nurse who in the middle of the night with the help of another turned me on my right side, ouch, put a pillow to keep me from rolling back and then gave me two hot watter pouches.  They were the kind that you pound like those cold packs.  It was amazing the relief I had and slept for quite a while.

Now in reference to your second point, the trial pain was cut in half just before the end of the trial as we found the right setting.  After surgery is was pain from the surgery.  Now that staples are out, which you will be glad they come out in one week, if they use stables.  I have much more mobility and being able to roll over.  Still not fun but I try to change positions.  If I sleep on my back, I put a pillow under my knees to aleviate and back pressure from being flat.  I am a right side sleeper.

Just texted with the rep.  We, if he gets back to me soon, wil set something up to re-program this stim.  He said we should have the last setting, which was the successful one on the trial.  Goody.  I just pray that it will works.  If not it is back to the drawing board.  

The rep just texted me we are going, to meet later in the week.  Looks like a muscle reaxer and tylenol day for me.  I did too much this weekend.  No more driving for me.  Too painful.  I keep forgetting I am only two weeks post op and think I can be wonder woman.  Yeah that's not happening.

Good luck in what you have coming up.  Don't forget, "The only dumb question you ask, is the one you don't".  Ask the doc and the rep everything before hand.  Especially why the need for the brace.  Cause after surgery, if they came at me with a brace, I would have laughed through the pain with a resounding, 'NO WAY'.  Have a great day.  D

Hi Dee, How are you doing? Have they adjusted you stimulator yet?

I went to see my Rep yesterday, I was suppose to get my trial out yesterday but I asked for an extension to Thursday. The Rep did some more adjustments and now I am waiting to see if the trial is working. He said that he thought that the paddles have migrated a little bit and that is why I haven't been able to get all of the relief that I need to get. He said that the paddles will need to be put higher during surgery  in order for me to get more relief.

I look forward to hearing how you are doing.

Dianne 

Hi...I am happy they are willing to extend the trial for you.  My personal opinion that, for some people, 7 days may not be long enough.  Sometimes those paddles do move and in the permanent implantation it will be placed to account for that movement.  It sometimes takes up to 24-36 hrs. for the new adjustments to take effect.  For me the pain is not going anywhere until the changes are made.

I just go Day to day and hope the next day will be better.  I personally expect at least 50% pain relief. I got that in the trial and do expect to achieve that again.  For me anything less than 50%, I do not think I would not have put the stim.  To put this in my body and still have to rely on heavy duty drugs, would not be for me.  Hope your new adjustment works for you.  

Good luck.  Dee

 

Hi Dee, I hope all is going well with you. Have they been able to get your settings like you need for relief?

I finished my trial last week and they took it out last Thursday. They were never able to get the amount of relief that I was hoping for but enough to go ahead. Next Tuesday, April 4th I will have the St Jude with Burst will be put in by my Neurosurgeon. I met with the Neurosurgeon yesterday and he said that I won't be staying overnight but done as out patient. I would have preferred to been able to stay at least one night to be sure that it is all well.

Let me know how you are doing and if you have been able to cut back on your meds.

Dianne

Hi Dianne.  To be blunt, I don't know how in God's green earth you can go home the same day.  I had my surgery early afternoon and I can tell you, no way could I have gone home.  You must be a great dealer with pain.  Recovery room is at least 2 hrs.  Every 5 mins., they asked how's your pain. Mine 9, drug in IV back to sleep.  If you don't feel you can go home, don't.  Now my surgery was considered same day but a 23 hr day hence I spent the night.  They do not program the stim until the next morning.  I would double check exactly what same day is.

I am glad that you are going thru with the surgery.  For me, what I am finding out for me,  I am not getting the relief I thought I would.  My reps answer was swelling and the paddle stim, which is implanted, is different from the trial stim which was 2 strands.  Therefore, I am back to square one.  Have been programmed twice and no relief at all.  I increased my number by 1 today.  I will give it two days, then up it again.

So right now am not a happy camper.  Hoping it rights itself around.

Let me wish you good luck.  I will keep you in my thoughts and prayers.  Just remember you must rest, you don't need to stay in bed, but you are going to hurt.  Do not shower for 2 days.  No nail polish that is dark.

So hang in there.  I still take a muscle relaxer along with Tylenol.  That's it.  Nothing else works.  Good luck and keep me posted.  PS in case they forget to tell you....lift nothing more than 1 gallon of milk.  No strenuous activity until they remove your staples or stitches which ever they use.  Just rest and let your family do everything.  I cleaned, did all the laundry, cut my hair short as I knew when I got home, I would not be driving any time soon.

Hangnin there it will be awesome for you.  Dee

Hi Dee, I am so sorry to hear that you are still trying to get to the same setting that you had during the trial. I have never had any luck with muscle relaxers so I doubt that it will work now.

I have a concerned when it comes to the place that I am having my surgery at, it doesn't bother me that it is a surgicenter, the other places are at the same type of surgicenters. It is a HCA which is the largest for profit centers in the US. They do not have a good reputation.and many of thi locations reviews are less than acceptable.

I called the Neurosurgeon's scheduling aide, I left a message that I don't have a good feeling about having my procedure at that location. I told her that I am OK if I have to change the date to a later date in order to have it at a different location. The current place they do not allow family members in the recovery, I want to know what are they hiding? I had one of my procedures at a different location that he also uses. I was very happy with that location and they do allow family members in recovery. I want my husband there when the Dr and nurses come by, he is my note taker and Champion. I hope that they call back soon, I have an appointment with my Oncologist today. It feels like I am always going to Fort Worth for my myriad amount of medical appointments. It takes a little over an hour each way, we try to get our appointments on the same day when possible. We are approximately 65 miles southwest

My husband read what you said about doing the laundry and cleaning, he said look here what she said. I have barely done any house work in the past 6 years, he said look what you can do. LOL When I have had good days I would clean the kitchen counters and put dishes in the top of the dishwasher. I don't think that I have done any of that in the past 6 months. 

When you mentioned no nail polish do you mean on the feet too? I generally don't get a manicure but I always get a pedicure. I am unable to reach my toes because of the metal in my back, my body just doesn't bend like that. I asked my husband to do them after my 3rd back surgery. He said never again and get pedicures every time that I need one. That has always been one of the few perks having all of these back surgeries. So anyway can I have color polish on my toes? I am planning on getting a pedicure in the next day or so.

I will let you know when I talk to the scheduler, I have a feeling that they won't be happy campers. Please keep me informed about how you are doing.

Dianne

Hi Dianne.  I love how you let your husband read my updates.  Does he think I am a nut case yet?????LOL. If you have a gut feeling about the place for the surgery, listen to it.  Mine was in a hospital out patient setting.  That's why it is called 23 hr day.  

Toes fine.   Just remember pretty in pink. LOL  sorry couldn't resist it.  Glad you put a call in to the Dr.  Seems our medical lives seem to parallel each other.  Pretty scary.  LOL.  You sure have a long ride.  My ride to the Hospital less than 15 mins.  Where I lived before, it took about 1/2 hr without traffic.  Let me know how it goes.  If you want to say something that you or I don't want in open forum.  Me I don't care who reads mine.  I hope they are informative.  Yet, we all have to remember our bodies are different.  Do you know which stim you are getting implanted?  

I have decided to adjust the stim myself.  Every two days, I will up the voltage by a +2 and go from there.  I don't go back to the PA at the surgeons 👨???office until the 14th of April.  By that time you will have either had the surgery or are waiting for a new date.

So forget the damn housework, as I sit in my recliner and look at the dust on my furniture.  It is driving me nuts.  Have to wait till no ones home 🏡 to clean.  Poo hubby was doing the laundry and I sit and fold it.  He carries it upstairs and I put it away.  I too have had three back surgeries.

Good luck with the scheduler.   Dee

How are You doing Dee?

I have been having so many appointments with my pain dr, my Neurosurgeon and my Oncologist, they are all in Fort Worth which I think that I mentioned it before is an hour drive each way.

My surgery is scheduled for this Wednesday, April 5th at a surgicenter in Fort Worth. I have to be there at 5 a.m., I thought that I told them that I don't do mornings. This means that we will need to leave home around 3:45 a.m. So I will probably want to wake up around 2 or 2:15 a.m. Once I wake up I have to take a shower with that awful cleanser Hibiclens, it just sucks the oil out of the skin. I have to use it today, tomorrow night before bed and again before we leave home on Wednesday morning I think that I will just stay awake and watch TV until it is time to wake up.

Have they done anymore adjustments to get to the level of pain relief that you had with the trial? I am concerned if you haven't had the relief then I may really be in trouble. I did have pain relief and also a reduction of pain meds, was it 50% reduction? I'm not totally sure. I felt that if I didn't go through with it now then I might not be able to in the future with the possible changes in healthcare in the our Country as it is today. Financially we just would not be able to afford it if there are changes so I feel like I must go forward with it now.

I need to get some relief and get off of these strong pain meds. Please let me know what is happening with you and if you have recovered from the surgery yet.

You mentioned that we could talk without it being public like it is here in this forum. I look forward to hearing from you soon.

Dianne

Hi there.  

Glad to hear that you are a go for your surgery.  It is on my Mom's Birthday.  So I know you will be A-okay.  

I had to bathe the night before or the morning of with dial soap.  My lord it just sucks all the moisture out of you.  I told them when I got there, that I did not use the dial on my face but everywhere else.  They said that was fine.  I was so itchy.  Lordy you might as well say up or will over sleep and then you will be running around like a chicken with your head cut off.  How long will they let you stay there to recover before they boot your butt out?  Will your stim be programmed before you leave?  Are you having staples or stitches?  When can you shower?  Just remember if they don't tell you your limitations, nothing heavier than 1 gal. of milk.  No bending, stretching or twisting.  Trust me that housework of yours, will still be there for a while longer.  LOL

I understand your reasoning for going thru it now and it a valid one.  I am the last one to tell anyone what their pain level is.  

I am still not getting any relief whatsoever.  So I am not a happy camper.  I have uping it on my own but not getting the same results that I had in the trial.  Do a littler bit of a downer for me.  I believe, for me, that the stim used for the trial and the stim that is permanently in my back are different and we just have to find the right combo with the equipment that I now have as a part of my body.  I am afraid it is going to take a lot longer than expected.  I have no pain at the incision sight in the thoracic area at all.  I have some discomfort where they put the darn battery.  If I can give you any adivice, make sure they they mark on your butt much lower than your waist.  I wear my clothes on my waist and, unfortunately, the battery is a little on my waist.  So it is somewhat uncomfortable with certain pants.  Have yet to wear jeans, and that should be not too comfortable.  I stopped the pain meds totally and am using generic Flexeril even though it is still a RX.  That seems to take the edge off along with 2 tylenol.  I am putting on pounds and am not happy about that at all.  I can walk too far because the pain rears it ugly head.  So needless to say, I could use a tape worm to eat my food for me.  LOL    I came to the conclusion here is as good a place to talk, cause maybe between our two stories, we can help others, who are thinking about what I went through and you will be going thru.  Some of the posts here, people are getting good results.  I am happy for anyone who is 50% pain free.  Kudos to them.

I go next week to see the surgical PA and we are going to have a nice long chat.  Poor guy, one I have not met before, is going to get an earful.  I can only up the intensity not the individual programs.  So when I up my number even by 1 when i cough I get a shot of electricity, that's what I call it through my whole right side.  Not so much fun when you sitting and cough.  Hmmm interesting my hubby says.  He's a character to say the least.  When no one is home, I do a little light housework and boy d I pay for it later.  Yeah not doing it any more.  I hope when I go next week and then two weeks later meet with my pain management Dr.  we can have a new direction or some new info.  I even went thru google search looking for answers.  Could not find any.  May try and contact Abbott and ask them the questions.  Bet they might have more answers than my rep

I will give you a shout on here April 4 to wish you good luck.  When you wake up and hurt, take all the drugs they want to give you and don't be a martyr and tell them you are fine.  If you are, Kudos to you.  Good luck my Texas friend.  Hang in there all will be getting better for you.  I know it.  Gee one of has to be the good one.  LOL  Talk soon.

Dee

.

Hi Dianne.  Today is 4/4.  Just wanted to wish you good luck 🍀 tomorrow.  Sending you good positive thoughts. Will talk when you are feeling better.

Dee

 Dianne.....Just checking in to see how you are doing since your implant on 4/5.  Hope all is going well. Dee

Dee, please tell me that you are finally getting some relief. I picture you giving a couple of the Reps what for.It is our bodies and they are being paid very handsomely so they need to get it right.

I can honestly say that this past week since the St Jude Stimulator was put in has been some of the worst pain that I have experienced in my life. I thought that the trial was bad, the actually surgery has been excruciating. On a scale of 1 to 10 with 10 being the worst pain ever it has been a week of 11's. Thankfully most of the week has been in a cloud of extreme pain and I can barely remember anything.

The surgery was done at the place where I could stay overnight if needed, BUT my Neurosurgeon never keeps anyone over night. By the time I started coming out of anesthesia he was long gone and had eaten a big breakfast.The surgery took much longer than he thought that it would be.He had to cut and remove several bones in my spine. Today (actually Sunday) was the first day that I was even able to face anything on line. I had so much swelling and I wasn't waking up from the anesthesia enough so the Rep left and my device hasn't even been turned on. I have no idea who I will be seeing and when. The surgicenter called with a followup to see how I was doing, not a peep from anyone from Abbott. No one prepared me for this type of pain, just getting out of bed takes so much energy and it creates even more pain. I have my walker out, it was one that I generally keep it by the side of the bed, I have been using it to walk around the house, thankfully we only have tile and wood floors so it makes it easier to move around. Sunday afternoon I was able to sit in the family room with my husband. It is hard to do anything for very long. Sitting in a chair starts hurting in a short time, then I take a few laps around the house (inside, I haven't been outside since I came into the house a few hours after my surgery). I barely remember the ride home, how did I lose an hour drive. My husband said that I wanted to go to Starbucks for a Latte and their oatmeal with blueberries. I have no memory of the eating and having a Venti Latte, it should be a law that says it is illegal to not remember an hour drive and a big coffee.

Getting in and out of bed has been the culprit of the worst pain. My bed is a beautiful handmade reproduction of an antique headboard, footboard and rails I have the bed at the highest setting so I have to use a step stool to get in and out of bed. Normally it is wonderful, I love how it is when it is high up. There were a few times this week that neither my husband or I thought that I would make it.

Look at me babbling on, I totally understand when you were so upset about being in so much pain. I feel like my back has been shredded, awful, worst pain ever. Thankfully he didn't use staples, I guess that I am epoxied together. The battery place hurts but nothing like the spine has. I'm not sure if I could ever go through this again, a body can only endure so much pain in a life and I think that you and I and many others have reached our limit.

Please give me some hope and that they found the correct setting for you and you have some relief from this pain. Well it is 3 a.m. And I haven't gotten asleep yet. One of our 4 dogs hasn't been feeling very well lately, so we put a baby gate up in the master bathroom and there is a bed in there and 3 of them are together. The other 2 crawled in the bed and went right asleep but Barnabas gets up every 15 minutes or so and starts crying and crawling on the baby gate. My husband has been so exhausted by doing everything, taking me to my Dr appointments, to the surgery where we had to get up at 2:45 a.m., wait for me to get out of surgery then totally taking care of me. I haven't even been able to change my under garments without his help. He is flat out exhausted, plus we have a sick dog on top of everything. He has had diareaha and Pete has been cleaning up all of the messes. I think that we live in a zoo.

Again, thank you for letting me ramble on.......

Dianne

Glad to see you are back to the land of the living in some manor.  Now you know, with what they did to you getting the stim in, you are never taking that out!!!!!

If you remember, I told you how painful it was going to be.  I was right wasn't I.  LOL.  I am so sorry that you had such a difficult procedure.  I am glad they did not staple, that would only compound the issue. OK I am sorry your poor hubby is dragging is butt around.  So is mine.  Forget the housework or the laundry until your stitches dissolve or they remove.  I mean do ABSOLUTELY NOTHING.  Okay you can eat.  I guess you never went to sleep that night.  Oh my Lord you slept during your surgery but not hubby.  I bet by the time you got home, he crashed and burned.  Are you taking pain  meds. to control the pain.  Try and stay ahead of it.  Me not so much.  No pain pills.  I am on flexeril (generic) and Tylenol.  That's it.

Unfortunately, I am still in mega pain.  I finally figured out why.  The trial stim is not the same as what goes in your back.  So it is back to square one.  I even called the tech center, and told them they need to get my rep more help cause I need it.  I texted him right after I informed the tech dept. that his help was out on a surgery leave, leaving the rep aloe to do all the trials and the surgical patients.  I told them it was not fair to those of us who went throuh hell to get the surgery and now we can't gest this damn stim to work.  Then I dropped the bomb, I said I have seen seriously questioning myself, that I am sorry I had the surgery.  There was silence.  It must have worked.  When we ended our conversation, he told me if I did not hear from the rep by thurs of last week to call him back.  I was getting more help from the technical support instead of hands on from the rep.  Then I texted my rep.  who then tells me in a re t4ext that his other person, is not coming back due tothe health problem from the surgery and must have more.  I was devastated.  So I called the tech back and told him all this.  He started looking around for someone else to help.  Now mind you he is in Dallas and he is asking me for NY different towns.  I said Rochester for me is like for you to go the farthest town in Texax.  So that brought a chuckle.

My tech texted me back and said someone else will see me on Friday at the surgeons office.  To myself, I say, "Thank you Lord".  I am hoping this one takes his time and isn't in a rush to get out of there.  I will block the darn door.  I told the tech the other day it took me 20 mins to get ouut of bed and another 10 before I could walk to the bathroom.  I said I was yelling, I have no pain, and then I said, damn I have pain and you all better your act together and help.  

So we shall see on Friday if they reprogram or tweak the one I have now.  As I sit here the pain in my right hip and leg is telling me that it is in charge not the stim.  So in the bottom of my heart, it will get all sorted out in time.  I am one with no patience.  I haven't slept in my bed but two times in a month.  I sleep in a recliner cause the pain is unbearable.  When I see them on Friday and they ask that stupid question "How is your Pain" Answer, "Your numbers aren't high enough."

So that was my tail of woe.  Remember baby steps.  Hope the dog feels better.I know you are going to feel better a little each day.  Forgetting dressed, I lived in pjs and a bathrobe until I had to go out to the Dr.then home to my comfy clothes. LOL

You are right, this is a one shot deal.  Never again.  I told them the birth of my 3 daughters was a piece of cake to this.  Even my 3 back surgeries comes in second to this.  Now I hae absolutely no pain where the implant is in my thoracic but that damn battery is killing me.  They needed to move it down a little.  Forget rolling over those days are gone for the forseeable future.  LOL

I will end on a happy note, are there any, just kidding.l  We will both get better in time and the stim will get programmed right and we can tweak it our selves.  You hubby and mine, will get good rest when we can take over the day to day stuff  Getting dressed still a little difficult, underwear and socks.  I found sitting on the toilet is easiest way to put pants and socks on.  Not the prettiest but most functional right now. 

Wishing you a Happy Easter and more healing.  Will let you know either Fri or Sat how my visit goes.  

The journey for us is phase 2.  Feel better and take naps.

Dee.  PS think mine is longer than yours in writing.  LOL

Dee, I just love your sense of humor, I really get you and I can visualize you sitting on the toilet putting on your ummm well you know. I have resorted to panties for old people who can't make it to the bathroom, I never thought that I would be using them but it is better that than a puddle on the bed or on the floor for me to slip on and hubby to have to clean up. Even with that I stick my left foot in and I get my trusty "grabber" and I hold them open, careful now, careful I don't want to fall. Oh close one, I better try to make sure they aren't on backwards. Yup they were, one foot out and no problem with the other one because it never made it in my lovely Caucasian colored stretchable disposal panties. This time I check before the first foot goes in, did you know that there is a pinkish circle on the back to tell you that the circle fits on my tush, not far from my lovely battery. Ok, I'm up, now what, ok, brush may hair a little, hey it has only been 5 days since it was washed. Oh, wait it has been 6 days because I did it a day before my surgery. I take a look at my night shirt, I check it for coffee and food stains, hmmm not too bad, I might get another wear out of it. I use to be so particular about myself, I worked in a professional capacity, I wonder what happened to that petite size 3/4. Probably gone forever. When I cry I suspect that I cry for the person that I use to be too. I always thought that it would be me caring for him because he was the one with a bad back, me never a problem except when it wasn't it was a problem. He lost both of his sisters to breast cancer and his father to leukemia and my family die from strokes and heart attacks. I was the one with 3 back surgeries and 2 breast cancer surgeries last year. Now I worry if something happened to him I wouldn't be able to take care of him. We have given thought to moving to a senior living but we love where we live, the people are all wonderful here and we have great neighbors. A lady from church brought a beautiful bouquet of flowers that were on the alter on Sunday. I will now be able to enjoy them for a few more days. Another family brought dinner over and cake for dessert and it was still warm. Well guess who had to eat some right away......, both of us. LOL

I called my pain clinic this morning and said that I needed to get an appointment with the Dr and the Rep. First she was setting it for the 24th, I said that I didn't think I should have to wait 2 more weeks before I get this thing even turned on. Now I have an appointment on Wednesday, so now the next journey begins. I just want them to change the bandages, I want to know what my back looks like. The stuff that they put on the covering it sticky and my nightshirt is sticking to it and that makes it hurt even more.

I told a friend that the pain from this is worst than all 3 back surgeries together, I think that they were just a runner up for the shredding of my back and buttock. The pain, how do you even describe it. I have little men stationed all over my back with megaphones and they are screaming. Pain, PAin, PAIn, PAIN, over and over again. Then they take their steel toed boots and begin kicking it around a bit more. Why am I going through this much pain to have a chance of not having pain not nearly as bad as this. Why, Why, Why, I don't know why. Between my pain, our dog being sick and crying all night and my husband being so worn out that I worry about him.

Hey, when you said that you would leave your post on a happy note, I read and reread that sentence until WELL DUH there just aren't any happy notes right now. Soon, hopefully very soon. I feel like we were in our Freshman and Sohpomore years waiting for and getting the trial done. Now you had your surgery but no pain relief so you are moving from being a Junior to almost a Senior in High School. I just started my Junior year, you are faithfully leading the way and slaying dragons and anyone else who gets in your way to get to the castle on top of the mountain. You are my hope and are letting me know that there is a life somewhere ahead, just don't know where yet. Do you like my analogies? I know I have a weird sense of humor, my husband said that was why he married me, here I thought that it was because of my beauty and charm. Well beauty and charm have left the building, probably the whole state so I must keep my humor going.

Do you know why your aren't having any pain in your thoracic area but loads in the tush? My buttock pain is there but I generally don't give it much thought because those little men with their steel toed shoes and picks and axes are hard at work bringing me another day of pain and misery. The pain almost feels like an aching burning pain where I am not getting any relief no matter if I am standing, sitting or laying down. I use to be able to lay in bed and get a modicum of relief, now no relief no matter what I do.

I think that I will get some ice on my back and see if that helps at all. I look forward to your next posts.

Dianne in Texas

Dianne......you think I'm funny, you're not so bad yourself.  I am sitting in my recliner, blanket in my body, lightweight jacket cause I am freezing.  But then I look left and to my amazement the outdoor thermometer is reading 86.  It might be but when I was out in my chair  the wind was blowing and Inwas looking to the skies to make sure there was no Mary Poppins or that Witch from the Wizard of Oz on her bicycle riding like a crazy person and cackling. nope.  So now I take another chair to block the wind. Now am I going to enjoy the sunshine ??.  Put on sunscreen. Ok bring it on I am ready.  Except now I am freezing.  So put my arms in my shirt.  Ok ready to enjoy the sun.  Crash, now what.  Andy's beer can was blown off the table. Now being a good wife get up and get that rolling can.    Hell no. It took me all that time to get comfy and warm.  Sleep, not too long.  Damn sun ?? is behind a sky full of clouds ??.  I gave up and went inside.  Weather 1 Dee 0.

I am cracking up 😂 with tears reading 📖 your post.  My husband looks at me and says, " shush this news is serious." Of course I kept laughing.  I love your analogies.  You say you have not washed your hair, well girl how about the kitchen sink?  When are you allowed to see and use water?  You got stitches and it is 7 days already.  I still can't submerge so no pool yet.  So you are this tiny peanut and I'm the elephant looking for a good 😊 peanut 🥜.   I think it's a draw on humor.  

Can you see others reading these.  They are probably thinking the loons are at it again.  If I can't laugh 😂 with this pain guess I won't laugh for awhile.  I am not Jr. but the engine chugging through this maize of inept, uncaring staffs.  Maybe we will get through this in spite of the lack of caring.

So rest up my friend and keep telling yourself, this will get better.  Much better than counting sheep.  Rest and get a good nights sleep.  The sunshine ?? will heal us both.

Dee