Great that the back pain is subsiding! I can't believe you are getting up and down off the floor. I can't do that! And making food for your husband? (Forgive me here) Shouldn't he cook when he's home??? (sorry.).
Amazing, though, how well your leg pain is going!

Is your hypersensitivity effected by your pain level? Mine is.

I think I maybe mentioned this before, but I have a much easier time showering since I switched out my showerhead to a Delta In2ition.

Glad to hear you're doing so well.

I would say it's definitely worse when my pain level is higher...like if I'm flaring I really can't handle ANYTHING touching me. I would actually try a shower if it was just my leg...but my upper body is still a baseline 8 and even a rain drop hits my skin and I feel like I've been shot...it's pretty severe. Even light fizzy jets in tubs send me reeling...so no showers for me at the moment. It's a real bummer...so ready to be done with sponge baths.

Gah...don't get me started with my husband and how much he does or does not help. In some ways he's great...in other ways I seriously want to wring his neck. I'm sure most relationships have those moments. I am super frustrated by how little he's been helping the last 6 months or so and especially now when it's like I NEED him to do some of these things. But if I don't do them they just don't get done...and that's fine to a point when it comes to SOME things but others have to get done (like the toys NEED to get cleaned up in the living room so I don't kill myself trying to walk through the room...but the other day he slid them over so that's just as good as picking them up, right??). He's a wonderful man...but I think he's just...tired. He's hit a wall I think after 2 years since my accident that made it impossible to use my left arm without severe pain (on top of everything else). The man naps SO MUCH...but he legit looks exhausted and I feel bad that he has to do so much and is so tired all the time. But...doesn't change the fact that right now I NEED his help and I NEED him to recognize what I need after I've told him once because to keep having to tell him the same thing over and over that I can't do something really just is getting to me. He's not an idiot...has an almost photographic memory, so when he claims he forgot something or can't remember it REALLY gets to me...especially when it's important he remember so I don't hurt myself. He's the first one to give others a hard time when they forget themselves and hug me, bump into me, make me sit in a spot where I will get bumped, etc...but lately he seems to be forgetting more than anyone. Ah well...hopefully better (less frustrating) times are ahead. :)

Just a quick update today. I had my 2 week follow up today (because actual 2 weeks is Christmas Day). Everything is healing up well. They cleaned the dressings and put new ones on. My next appointment is January 10th. Basically it's just more of the same restrictions. They said I could try to drive if I want to, but to just be careful not to twist too much (which...backing up I don't know how you don't twist too much unless you have a rear camera? So I think any driving will be extremely limited and if it hurts at all I will just wait.

That's got to be super frustrating. I'm so sorry. I'm sure he is having a hard time. As a spousal caregiver myself it is a difficult place to be. If he is the type who would use online support in a forum, I found Well Spouse Association to be a lifesaver. There is a small fee ($30) to join, but it is worth every cent. IF it is a hardship he can contact them it can be waived. Perhaps getting some support for how he feels will help him manage better.

Anyway, maybe if you try to have an honest talk where you acknowledge the additional pressure he is under, and clarify the most important needs, and then the things that you think you can be ok if he lets them slide sometimes, and then the things you can handle, he will feel more like a "team" ? I don't know your situation and how you have handled things, but I know what it is like to be married to someone with a disability.

Thanks. I don't think there's a chance my husband would be interested in something like that. We keep having talks about what I need from him...and I really think he does try...but I know he's frustrated by all of it. Not at me...just with the situation.

Thank Catra121
 

A heartfelt thank you Catra. Your very concise description of your DRG stimulator trial experience has been very helpful to me. I am a very weeks behind what you have gone through and have followed your posts. They have comforted me in realizing that what I am going through is normal.

I had my permanent drg stimulator put in yesterday. I was rather surprised in that the trial was so easy. I thought "nothing to this". Even to the point of telling the fellow prior to the permanent implant that I probably wouldn't need paid meds- just Advil. Didn't need anything much for the trial so why would I need anything for the implant?

Boy was I wrong. Yesterday I looked at your posts and saw that what I was experiencing was pretty much what you had gone through. Much thanks for that. The permanent implant surgery was pretty uncomfortable.

As a side note, I think we go to the same group of drs. Based on your timeline, I think we have been missing each other by about a day. Maybe one of these times our visits will coincide and we can meet.

I'm glad things are going well for you and I am sorry that you have had to got through the back pain. It definitely does get better...took about 10 days but then there was a definite decrease in the back pain. I'm now at 17 days after the procedure and for the most part the back main is minimal (though it does itch and is driving me a bit crazy for that..lol...but that's just the healing). I can sit and lay down pretty normally now...so it will get better. :)

Well...the Christmas holiday (24th and 25th) was a bit rough for me. Probably overdid it helping my daughter with gift opening...extra bending and reaching. Around noon on the 25th I started feeling...weird. Not more pain and not sick...but super exhausted and my back felt...weak?? I guess that's the best word for it. Thinking maybe it was just muscle fatigue or something...was having almost free fall sensations. Didn't really get to rest much the 26th either since family came over to help but...well...that's never as restful as it should be for me. But yesterday and today I have just been sitting in the recliner and resting all day and I am starting to feel better. So I think it was just overdoing it and my muscles just aren't ready for things.

Otherwise everything is going great. Leg still feels great despite the below zero temperatures (which my upper body isn't liking at all and I'm not in full blown flare up but the pain is a 9 and I'm having a hard time with the hyper sensitivity on my upper body. I haven't left the house in several days because of the cold but will need to soon (running out of food).

Another small update at the end of day 17. All my steristrips except one have fallen off leaving my wounds exposed. They are closed up and look healthy I guess (for what I can see...lol...not an easy angle to see when you're not allowed to twist). I don't really like my clothes rubbing on them so I have my pants pulled down low and an oversized t shirt on. Glad the strips have come all the way off though...the slightly off and catching on everything was very uncomfortable and this is better.

So...my last steristrip fell off today and I don't like it at all. I feel like this incision isn't closed all the way yet and I don't see the Dr again until January 10th. I'm going to have my husband take a look when he gets home to see what he thinks but I really don't like the look of it, plus it's been hurting a lot today since the strip fell off...like it feels like it's pulling apart or something (that may be totally psychological...lol...but that's what it feels like to ne). Probably just paranoid...lol...but really don't want to move right now (but I'm alone with my 3 yr old so good luck with that).

Could you have your husband take a picture of it when he gets home? Then forward it to your St. Jude rep? I have found that the reps are very responsive and would likely know what it's supposed to look like.

That's a good idea. He said it looks good to him but darn it hurts. Doesn't help that I am so itchy I feel like I am losing my mind. Scratching hurts so bad but not scratching and I'm losing it. Grrrrr! Thanks for the suggestion though. I'll do that today.

Hydrocolloid bandages work well to help heal incisions. I like this brand: Amazon.com: Dynarex Dynaderm Hydrocolloid Dressing, Thin ,2 x 2 Inch/2 Count: Health & Personal Care

I also used Surfer's Salve and Anti Chafing Sports Salve to help with the healing process.

I will have to look into these. Thank you!

There is definitely something that hasn't healed over all the way...I think it's a very small area but when I took my ever so fun sponge bath yesterday a small bit of soapy water ran over the incision and man did it sting/burn! The pain right now that it feels like it's tugging and pulling apart where it's not healed all the way yet. I'm calling Tuesday morning and will send pictures. I'm a bit worried about infection just because it's so red around this incision (not the other one) and there are itchy red bumps around the area (but those could be a reaction to the tape I guess).

I will definitely look into those bandages and things LitLove and I have taken pictures of it to send to my st judes rep if needed.

Right now the only comfortable position is laying on my stomach. Had a small flare up in the pain in my leg after laying on the floor because of my back hurting ...but it maxed out at a 6/10 and is now back to its normal 2.

Catra- itching
 

I am experiencing lots of itching too. A couple of things that I pulled from my brain’s cobwebs that have helped decrease the itching- drink lots of fluids. Being dehydrated increases the itching. Also, temperature affects itching. Being hot or even warm can increase itching. I just gave up my electric blanket and the itching has eased. Lastly, it seems that my whole body went into itching overdrive. I can’t bathe or scratch the areas on my back but I did sponge off the rest of my body and applied moisturizer. That seemed to quiet the itching down a lot- including my back and incisional areas.

My drg experience hit a wall
 

Over this holiday weekend, my drg stimulator experience hit a wall. 2 of my 3 leads stopped working. I have those 2 leads up to the max and I am not getting any tingling that I am supposed to feel. I will be calling the rep in the morning. I don’t know if my leads have migrated or what... any one have experience with this?

That sounds kind of like what happened during my trial. It happened one day before I was to have it removes so they didn't do anything...but it just stopped working. In my case I just noticed the pain slowly increasing and beat guess is that while i was sleeping I stretched funny or something and pulled the wires just slightly and they disconnected. I hope that whatever it is that it's an easy fix/adjustment for you.

I am literally losing my mind at this point with the itching. It's definitely not too warm...its frigging cold in my house due to below zero temps and a 150 yr old house. Because of my itching though I've been not wearing any pants and pulling shirt up across my back because anything touching is causing me to lose it. I have red bumps all over the incision area plus on both legs and up to about middle of my back. I am hurting myself so bad with the scratching but I'm seriously losing it. Heading in to see my primary care for walk ins this morning. No lotions or moisturizers are helping. I had something similar years ago and it was caused by inflammation. With the incision i want to make sure it's not infection since that's where the bumps and itching started but I have a feeling that big it's just inflammation then there's not much they'll be able to do.

Saw my PVP today. He thinks the incision is infected...or at least the skin around it definitely is. He's not sure if the rash on my legs is related or not, but he gave me antibiotics and a prescription strength hydrocortisone cream. He seemed most concerned with the red bumps on my back around the incision because those are bigger and "angrier looking" than the bumps and welts on my legs. Can't tell if any of it is helping yet but am glad I went. Haven't heard back from my pain Dr yet.

I was worried that it might be infected by your description. If you have the same dr. As I do (which I think you do) I have never had a return call from him with any of my concerns. I know that if I felt it was important I would call the hospital and have them page the pain fellow. That is what my take home instructions said to do as well. Additionally, I would call the St. Jude rep. I have found mine to be very responsive and mine told me that my dr. Wants a daily update from her on all his patients. So your rep could certainly pass the info on to him. Did you have your implant at Rush? I don’t want to alarm you but I would be worried that you have a staph infection.

I did have my implant at Rush. I am waiting to hear back from my rep too. I'm actually kind of surprised how little follow up I've had from everyone...but then again everything has been going really well for me so I guess it makes sense. I don't think I got a follow up call from my St. Judes rep after the permanent implant (I did get one from the Surgi Center)...I know I got a couple calls during the trial but not every day like she said it would be (but again...everything was going great so I guess it makes sense that I wouldn't be getting a ton of follow up).

The hydrocortisone doesn't seem to be helping much at all with the itching. I am at the point of almost scratching myself bloody...and you can imagine the RSD pain I am experiencing because of the itching...but if I don't scratch I am literally losing it. I finally managed to fall asleep last night and woke up less than an hour later scratching and the pain that resulted from that.

I hope it's not a staph infection...that would really stink. They said everything looked good on the 22nd when I went in for my follow up...but all this redness and stuff started after that (after they took off the dressings and put new steri strips on). Hopefully I get an answer soon or the antibiotics that my PCP gave me take care of it.

How are you doing?

I wish I could say I was doing great but I can't. My trial went so well and my hope was off the charts that the permanent device would be as successful but that's not the case.

I am itchy too - still have all my original dressings on so at least that prevents me from trying to scratch the wounds themselves. Two of my 3 leads were not giving any pain or sensation relief at their highest settings. I am going to Rush tomorrow (Thurs.) to meet with the St. Jude's rep to try to figure out what's going one. And now my remaining lead has completely shut down.

So I am somewhat depressed. My equipment isn't working and consequently all of my pain has returned.

I hurried to have the surgery before the end of the year b/c my out-of-pocket costs with insurance had been met. I am worried I will need to have this all re-done.

I came down with a nasty cough after surgery and I am worried that my extreme coughing may have dislodged something.

2018 has to be better.

My follow-up experience has been like yours. The only call I received after my permanent implant was from the surgicenter. What I have found is that texting the reps has worked pretty well. During my trial surgery, I noticed her texting so I figured texting would allow her to respond quicker just in case she was in surgery since she can' t really talk during the surgery.

I am worried about you with a possible infection. I really think some one who was involved in the procedure needs to respond to you. Keep pushing them.

Yes, itching will drive you crazy ! A few things that we've used in the past:

– Basil: This popular herb contains a substance called eugenol, which numbs the nerve endings that cause itching. Place a tablespoon of dried basil leaves in 16 ounces of boiling water, keeping the pan covered. Allow it to cool before applying to itchy skin. Reserve the rest in a mason jar to use later.

– Thyme: Like basil and mint, thyme also has anti-inflammatory properties, and is also a numbing agent. Place a tablespoon of dried thyme leaves in a 16 ounces of boiling water. Allow it to cool before applying to itchy skin. Reserve the rest in a mason jar to use later.

We apply these with a cotton ball.

Natural Itch Relief - Farmers' Almanac

I REALLY hope you find some relief soon !

I am so sorry to hear this. I hope it's something they can resolve easily. Will be praying for you that they are able to figure it out tomorrow. I have been so worried about messing up my leads but in my opinion there are just so many things out of your control. Even the way I had a hard time sitting or laying down because of the back pain i was so worried that would cause problems.

The pain clinic finally did follow up after the st judes rep talked to them. I had to email pictures and then one of the fellows called me back. He said it might be an allergic reaction to the tape but that it also could be an infection. They called in more antibiotics and want me to increase the dose from 2x per day for 7 days to 3x per day for 10 days. He said better safe than sorry so better to treat with antibiotics just to make sure. Said to take more pics and call back if it gets any worse.

Well things seem to be getting better with the antibiotics. Other than flare up pain from all the scratching...the treatment is still working great for me. If I didn't have the DRG I would probably have been bed ridden with the pain from scratching. Instead my pain is a 6-7 right now...elevated but bearable.

My incisions didn't get infected but did itch terribly and this really did help: Amazon.com: Anti-Chafing Sports Salve, all natural anti-fungal, best remedy for chafing, rash, and skin fungus: Health & Personal Care

BTW, I'm not sure you use them, but 4% Lidocaine Patches are available over the counter by Salonpas and Aspercreme for less than $2 a patch. Insurance companies seem to be regularly refusing even generic 5% patches and out of pocket from Costco they're $150 for a box of 30.

I do use Lidocaine patches. So far I haven't had any issues with getting them approved by insurance and my last ones had a $0 copay. The itching I expected with my incisions...but not the red bumps and welts that surrounded the incisions and THAT was what was driving me totally batty. Like...there was itching prior to the removal of the bandages and replacement of the steristrips and that seemed like normal healing itchiness. But then I developed the red bumps and welts surrounding the incision and about 6 inches around it about a week after the bandage removal. That has improved since I started taking the antibiotics.

The itchiness on my legs and those bumps and welts are still pretty bad though...so maybe that is just from dryness and is unrelated to what was happening on my back. I will look into that salve though for sure. Thanks.

Fell asleep on the couch this morning and was awakened by a 3 year old climbing on my back. OUCH! Hurting quite a bit now but thankfully it doesn't seem to have affected the treatment. Good job watching the kid this morning daddy. He of course demands to know why I am tired...sigh...

For the itching I would recommend making a paste of baking soda and applying that to the area. OR good old Calamine lotion. If you can get your hands on it, Benadryl makes a topical ointment. It helps a lot!
This really sounds like an infection and possibly an alllergic reaction as well to something (welts sound like hives? and spreading down away from the site is more than just contact dermatitis from tape). Have you tried just taking some Benadryl or Zyrtec to help with the itching? My boys get hives sometimes, just randomly, and Zyrtec can really help that constant itch. Also aquafor on top of whatever cream or ointment you use, my son told me when I put that on it really calmed down the itch.
I'm so sorry you are going thru this, but I'm really glad you saw your doc, cause infections from surgery are nothing to mess with!

Thanks for the ideas. The antibiotics seem to have made w huge difference in the itching so I feel like it was related to the infection since nothing else has really changed.

Saw the dr Wednesday morning and they said everything looked good. They agreed that it was probably either an infection or possibly an allergic reaction to a vindomyacin powder they put in there (never heard of that but I guess it's come up a few times that people have had a reaction to that powder...I'd be skeptical that was it though because 1) I didn't have a reaction until almost 3 weeks after the procedure and 2) the antibiotics cleared it up). They sent me to get some bloodwork to just to make sure all of that looks good.

The doctor wants me to start physical therapy in a week and a half or so (when I'm at 6 weeks post procedure) and then I see my dr again February 21st and we will discuss the possibility of me returned to work (which I am really optimistic about). Obviously I will still have some restrictions because of my arms but will be able to perform my primary job functions once I am able to be mobile and have rebuilt my strength.

I am SO ready to be done with this recovery period...I am just done with it.

Small side note...now that swelling and stuff is gone...I can noticeably feel the battery in my back when I touch there. It's still pretty tender...but that's so weird. This only started the last few days...before then there was still so much swelling I couldn't feel it. It doesn't hurt...it's just weird...and I can't see it or anything just can feel it.

Hi Catra121. I missed you at the clinic by a day. I was there on Thurs. My pm is out of town so I saw his associate. Dressings and sutures were removed. My incisions are red and have drainage. The doctor told me to keep them open to air, shower daily with an anti-microbial soap and then pat the incisions with peroxide on a sterile gauze pad. Not to worry me any (haha) but... He told me if I start running a fever, get a headache, or stiff neck to come to the emergency room right away. On the positive side, he thinks the redness is a reaction to the dressing and the drainage is from sweating. (We hope.) But to be on the safe side, I am going back in a week- he said standard was 4 weeks. The St. Jude's rep. increased the limits on my generator so I went up on that foot and it has been better. I am still amazed at what they can do. My second lead just started working somehow. The drg representative I met with has a degree in biomedical engineering. Never met someone with that degree before. I had wondered what sort of education they had.

Glad to hear they were able to get your unit working and that it didn't require new surgery...I was worried about that for you. Glad they will keep an eye on your incisions and that you are going back next week. Hopefully it all clears up quickly. One of these days we might cross paths at the clinic finally. Thanks for the update.

Hi Catra,

Sorry I am so late to the conversation! I have thought of you often, sent prayers and monitored your progress. I am so glad to read that you are healing and making improvements.

May you continue to make gains and find relief as you get further out from your procedure.

Sending many soft hugs, LP :hug::hug::hug:

Catra,

How's your recovery going ? I hope you're doing well and that you're pain free.

Thanks. It's going very well actually. The infection seems to be gone. Back pain is down to just being very tender and occasional burning at the incisions themselves. I'm moving around well and building up strength in my legs. I feel very excited to start physical therapy next Monday and take my recovery to the next level. My no lifting, bending, etc restrictions are almost over and I am looking forward to a little more normalcy in terms of being able to take my daughter to daycare and pick her up from daycare. The DRG is still working very well. Just the one small flare up a couple weeks ago and it was still better than my baseline used to be before the DRG. This morning my legs are feeling a little sore from all the laps I've been doing in my dining room...lol...but that's a good soreness as far as I'm concerned. I'm still not sleeping very well because of my upper body pain...but that's just par for the course i guess. Overall I feel like I am doing great. :)

I saw my pm and the stimulator reps yesterday. Just like you experienced, my pm believes my redness and swelling are related to the vancomycin powder that they put into my incisions during surgery. I think you are having better results that I have been having. Hard to find a good setting for the relief. I'm all over the place on the numbers. Yesterday's rep believed that the surgical rep mislabeled my leads and so I was really putting one lead way up to get the pain relief I was needing b/c it was a lead in a different spot. (If that makes sense.) I had to turn my stimulator off yesterday while driving home b/c I felt I was getting shocks from it with every bump I hit. Going back in 2 weeks so hope to get the programming looked at again.