pinched nerve? moved Lead? Worried I may have screwed up my neurostimulator

I had my surgery on March 6th. I had the paddle form of the Medtronics Neurostim and was really really happy with the results. I had struggled with severe pelvic pain from endometriosis and heavy abdominal adhesions/scarring for the last 9 years, and found that the stimulator really helped me a ton.

I was cruising along in my recovery ---- trying hard not to move too much in orderto prevent pulling anything out. The dr had given me permission to have relations with my hubby when he returned from deployment.( on r and r from iraq ) but only after i hit the two week mark.

That is the only thing i can think of that maybe could have caused a problem, but we were very careful no crazy twisting or turning or lifting....
The only odd thing i didn't mean to do was when i accidently knocked over my bedside table and instincually turned to grab it from falling down. It was just before the 2 week mark. I remember It scared me becuase it hurt the incision area, and that area had been feeling pretty solid, but the pain lasted a second only----and i felt absolutley normal the next mornign.

When i hit the 3 week mark after surgery I had been off the meds for pain for about a week. it was then that i noticed that when i lifted my arms to pull a shirt on----- my left side hurt, where my kidney and back and flank were.

Odd, it felt as though i'd been doing exersizes or something---obviously i hadn't. I had noticed that in the previous week when i used the machine it would cause my left side to cramp tight instead of feel like bubbling or vibrating.

I turned the machine off, and called medtronics. They said that I was probalby having a reaction as my body reduced swelling and it was just a matter of reprogramming. I left it turned off, and made an appt to reprogram for 3 days later.

Meantime, as i had had kidney infections in the past, even oneswith no uti symptoms at first, i felt it prudent to be sure the stiffness in my side and back wernt' the beginings of an infection.

The quick test came back negative. Medtronics reprogrammed my machine and I went on my merry way, no longer cramping up when i'd turn it on. But still tender on my left side I was given valium to use as a muscle relaxant over the next few days to calm the area, and i left town for the weekend.

That was on wed. By Sunday the pain was so intense and severe that i could hardly stand it. My side felt sore and stiff--- a solid strong burning sharp area, and if i lifted my arm a bit, or bowed my head it felt like my side was tearing open.

I got a call saying that the lab had grown outmy urine culture and that it HAD shown a slow growing infection---they said probably cross contamination by me on accident, but put me on macribid anyhow. Monday i returned home and when i bent my head to climb in the passenger side of the car i screamed at the senstation of burning and tearing.

I went to the er, and they checked my urine and found a full blown infection, and when the dr hit my back near the left kidney It made me scream. (i'm not normally such a wuss)

He was sure it was a kidney stone. He had a crying mess of a woman, who couldnt' find a comfortable position, a positive uit test, and a strong reaction to his pounding on me.

He sent me to the ct scan---no stone.

He felt maybe it was asmall one that would pass on it's own. He said that while a ct scan shows most stones it might miss something small enough to fall between the layers the scan cut it's pictures in and then overlapped with.

(later i've gotten vastly differnt oppionions on how ct scans will show all stones, and how they overlap so well that they can't miss a stone large enough to cause pain.)

that was 5 weeks ago.

no stone passed, but i've had little flecks of stuff, when i sent them in to be tested they came back as not normal compistion materials of kidney stones.

I have had 3 more reacurring infections though.


I FINALLY saw a urologist today----he said if there is no image of a stone on a ct scan, there IS no stone. He said that the little flecks i've passed are just debris, and that it must be something else causing all this pain...

So, one other thing i can think of is that My lead may have slipped and is pinching a nerve?




Ironic, i called and postponed my 6 week follow-up becuase i was in too much pain to drive the hour and a half to the neurosurgion's office, or even to get the x-ray on film. At the time i thought i was just putting it off till i passed the stone. I thought no way was anything wrong, I'd pass the stinkin stone, and then go through the motions of double checking all the follow up fromthe neuro-stim.

Today i called backUp to the neurosurgion's office and explained that the stone was likely a missed diagnises---and asked when they could get me in to verifiy i hand't had the lead slip--- therby causing my pain. They can get me in in two weeks. Unfortuanatly no sooner because my dr is on vacation out of the country.



So, how likely is it that my pain in the side matches the sensation caused by a slipped lead landing and pressing on a nerve?

The issue of the reacurrant UTI's is still at play--but i've had uti's in the past that never really died out and just kept coming back after each antibiotic is over

(As I got each infection, my normal provider thought that the STONE was causing the infections and shedding bacteria as it came down.)

Now I dont' know what to think---

I am in too much pain to think----


The pain is solid, strong and sharp----doens't let up for a single second, although it gets worse sometimes. The first three weeks it hurt to lay on the left side, as though I was bruised inside, about 10 days ago i could sleep on my side again.

the pain seems worse with each infection---then gets back to a little less overwhelming as the infection gets under control.

It seems less horriblewhen i first wake up now

(although in the beginning nights were horrid with no sleep---it felt like laying down was breaking me in half)

The lower level of pain in the morning quickly builds up as the day bears on.

The worst things to do are bending over, lifting my left arm, bending my head down toward my chest, or putting pressure (like a padded chair) where it presses into my back where my kidney is, or laying back flat or reclining.

The best things for it are, heat or ice, standing up or sitting straight up, laying on the right side, and lots of percacet and ibuprofen!


ok, i think that is all---i'm sorry this is so long, but i'm at the end of my rope.


for 5 weeks everybody has said to see the urologist, by the time i get in there to see him---he says---no dice.

Hoping somebody here has had this experience or something simular to say yes---this is what a pinched nerve can feel like!!!

Hi Emily,
First off, Welcome to HW. I am so sorry to hear you are in so much pain. First off, I agree with Laurie about getting a second & third opinion. I remember fighting with my PCP once about severe pain in my back. I had to beg & scream & such just to get her to run a urine test. When it came back, the person who ran the test said it was the highest bacterial count she had ever seen. So they send a nurse in with me to make sure I wasn't doing anything to "cross-contaminate" & then ran the test again. It came back with the same results.

It was horribly painful & took weeks on very powerful antibiotics to correct the situation. Then, of course, I got a massive yeast infection. So we treated that & the infection came back. It was just miserable. More antibiotics, plus probiotics, until finally a couple months later it was finally resolved. So I know what a nightmare all of that can be. You definitely don't need kidney stones to be in horrible pain. A rampant infection can be horribly painful, especially if, like in Laurie's (& my) case you have scarring.

Beyond that, it might be a good idea to get a scan of your leads site to see whether or not they moved. Perhaps one of your doctor's partners (if he has any) can order that test so you have the results for him to review as soon as he gets back from vacation. If he doesn't have partners, check with your PCP.

The other possibility is that it could be the battery pack/impulse generator. In my case, there is a nerve caught between my pelvic bone & the device. It hurts like the dickens & became exponentially more painful when I lost weight. The Boston Scientific people ran all kinds of tests which all showed that there wasn't any problem, but sure enough, as soon as my PM zapped that nerve with RF, the pain went away completely.

I know you're in a ton of pain right now, but try to hang in there. Definitely get that infection taken care of right away, but hopefully you can also get a scan of your leads to make sure they haven't migrated. If they're still in place, maybe ask your PM about whether there could be a nerve trapped under the device. I read about it on-line & at first my PM didn't believe it, but then he talked with some of the researchers at Boston Scientific and found that it does sometimes happen & based on my symptoms seemed likely. So my PM looked at it under flouroscopy, did some injections & then the RF and now I am much better.

Wishing you well,
frances

frances

Thank you so much for your insight. It sounds like i need to get my butt in to get the xray read. Unfortunatly My neurosurgion doesn't have a partner, and relies on his PA's to do a lot of the follow up stuff. The Pa's arnt' qualified to read the x ray and decide if it has caused this problem, and so i wait----becuase---just my luck----my dr is out of the country. As soon as he is back they have worked me in, in fact they stuck me where his lunchtime normally is as soon as he is back so that he can see me asap.

At least they seem to be concerned with findint out whether or not that is what has caused the problem.

Where did you feel your pain? Did it ever feel less horrid, and then get worse and worse as the day wore on? My pain is always there, and is always really bad, but as i try to be up it gets worse and worse. I kinda don't understand why if it is a nerve it wouldnt' stay exactly the same all the time.....

Thanks so much. It is great to actually have a couple of replies and ideas so quickly after posting. Out in the real world so few go through the pain that landed us in these situations that no-body really gets or understands what we deal with everyday. I can't believe i didn't know this site was here till now...

Thanks so much~~~Emily

Emily,
I just wanted to say hello and welcome you to our family. I've been slow in greeting a few new members, and you're one of them. Others who have posted here have the knowledge that you need, but I did want to say hello.

PaLady

My first stone I was 18 years old.  Had never felt pain like that in my life.  I was in the hospital of 9 days on a Morphine drip.  Had a stent placed and taken out during this stay.  After about a month the pain went away.  I had a few infection over the next few years after that, pain to one degree (1) then with another infection the pain would be diiferent (10).

I never strain my urine but I see the flakes float to the bottom of the toliet bowl.  They are really dark in color kinda look like a paint chip, sometimes they are smaller and look like coffee grounds.  Yes my toliets are clean so its not dirt  .  I have had the same comments, "they are to small to cause blockages"  but then I find out in researching and googling "They can"

I have never had the flakes show up on scans.  Oh we found out is during surgery my doctor took a scope and when up to the kidney to look around.  Upon entering the kidney he saw all the flakes floating around in a milky kind of fluid. (Infection, which they said I didn't have)

My pain from the beginning has changed it can be calm to me on the floor screaming.  Sometimes its constant dull aching to another time I feel like someone is taking a knife and stabbing me.

My infections were like you they came in clusters.  It was hard to fight the infection.  Now I know I had more.  I don't get fevers and omiting from my infections.  They are almost silent with me.

Yes I have been told by my urologist that infections can start to hurt even before tests pick the infection up.

I will tell you now I went years without pain meds.  All my doctors were at a loss thinking I was just looking for attention.  Until they saw my Polysistic Kidney Disease on a scan.  They went to look and found all problems.  If it wasn't for my genetics with PKD I would still be without pain meds.

All I can tell you with me since the beginning I always knew something was wrong.  I would have nightmares that when I died it would be stomach and back pain.  Now I feel the feeling I got during these nightmares.  I know it sounds strange but it really happened.  I used to tell my hubby all the time.

I will say one more time the pain comes in all different levels with me.

All I can do is cross my fingers for you to seek lots and lots of opinions.  Heck you could of pulled a muscle that is beating the crap outta you....

Laurie

Emily, the feelings you're describing sound a lot like what it feels like when you pull the lead wires and rip the scar tissue loose, without necessarily moving the paddle. It sounds sort of insignificant, but the inflammation and pain is unreal! The first time I did it was about 3 months after my implant and I was sure the protective coating had been eaten off my lead wires by some funky chemical reaction in my body.

I did it again about 6 days ago and I'm still workin' it out. The pain from it is definitely better when I wake up and worse as the day goes on, which I attribute to the fact that I don't move much while I'm asleep, but when I'm awake, I tend to move around in so many ways. The only thing I've found that's useful is ice packs, anti-inflammatories, and trying to avoid the movements that stretch that area out, like bending forward, reaching out/up, etc.

Having it go on for 5 weeks seems a bit long, but it's certainly possible if you're inadvertently pulling it repeatedly and moving in ways that continue irritating the area.

My paddle is implanted at T7/T8 and my lead wire exits at the bottom of T8, goes about 2 inches to the right, then has a double coil of extra wire. From there it runs in an almost straight diagonal line to my IPG, which is on the right side, just above my waist. I have another double coil of extra wire just above my IPG.

Both times I've done it, it started with a jolt of pain across my mid-back, then it faded away and I thought it was fine. The next day, I was stiff and sore under my right shoulder blade, downward, and across my ribs and into the kidney area. The sensation changes during the day, depending on what I'm doing, and ranges from a sore stiffness to burning jabs to a "beat up" sort of feeling, like someone has kicked me really hard in the ribs/lower back.

My doctor told me to go back to the basic restrictions I had after my implant, as far as no bending, lifting, twisting, or reaching out/over my head for a week or two, just to let the area "re-scar" a bit. This time around, he also had me add Voltaren gel 4 times a day, along the tunnel where my lead wire runs, and I think that's helping reduce the inflammation too.

No, there hasn't really been a need for surgical intervention because the paddle still in place and my stimulation hasn't been affected in anyway. The part I've pulled is just the wire that's tunneled between the paddle and the IPG, but it hasn't pulled on the IPG or the paddle at all. Since I knew exactly what I'd done (because I did it before), I didn't even bother to go into the office this time. I just called my doctor, told him what I'd done, asked him to call in the extra meds, and saved myself a $200 office visit fee.

Of course, before my doctor approved the meds, he did take a few minutes to call me personally and tell me I'm an idiot, but our relationship is in a place where that's ok.