Hi all, this is the first time I’ve posted on this forum (I've also posted under new member introductions).

So here goes, I have a Medtronic spinal cord stimulator (implanted 2008) in my left buttock, I have recently lost weight and the battery has migrated to the surface, in particular along the top and side edge where it is only covered by a layer of skin, and may require surgery to replace and relocate. It seems while I have been exercising and eating healthily, I should have been eating chocolate and taking it easy! I have an appointment soon with my Neurosurgeon for an opinion/management. I'm wondering whether others have had similar experiences and if you managed to avoid surgery and how? Unfortunately, putting on weight again doesn't seem to be fixing the problem. Has anyone been through the process of getting a replacement battery? I am thinking, if I do have to have the battery replaced, is it worth exploring possibility of changing from Medtronic to Nevro? Buzzing sensation from Medtronic does tend to set off allodynia. I would be grateful for any sharing of relevant experiences and advice.

Booklover

"It is both relaxing and invigorating to occasionally set aside the worries of life, seek the company of a friendly book...from the reading of " good books" there comes a richness of life that can be obtained in no other way." Gordon B. Hinkley

(Apologies if you find any strange errors. I use Dragon voice software and may not pick up all its' mistakes when editing)

Hi Booklover! Welcome to the forum! I hope you'll pull up a chair and get comfy - this is a great group of people - they are helpful, encouraging, witty, and just an all-around fun bunch!

First, congrats on the weight loss! That is a huge accomplishment, and I applaud you!

I, too, have a Medtronic's unit. My permanent implant surgery was on December 24th of last year, and in mid-January I began a diet and lost almost 30 pounds, which got me to my goal weight. Like you, I also noticed that my battery pack - which had once been well-hidden inside a pocket of "extra me" was now sticking out, was very sensitive, and slightly uncomfortable. Then in April we discovered that my percutaneous leads had migrated, and in June I had revision surgery for the laminectomy and paddle leads. Since I knew my Neurosurgeon was going to have to take the battery out to disconnect the old and connect the new leads, I thought that would be a good opportunity to relocate my little friend so that it would be less conspicuous. Wrong. As it turned out, my NS felt that because of the amount of scar tissue that was already formed in the "pocket," it would be better to leave it where it was.

My advice is to really, really, REALLY let your surgeon know what you would like done and why. I wish I had been more vocal with my NS. I know that he felt like he was taking the least-invasive approach for me, but I would have preferred to have the short-term pain of a new pocket healing, rather than the long-term uncomfortableness of having my battery sticking out. I don't think I emphasized that with him enough.

But as you had mentioned - and as my husband has often joked - I could simply put all of the "extra me" back on and the problem would be solved! Hmmmmm . . . now that I think about it, a month or two of eating all the Mexican food, pizza, ice cream, etc. that I want wouldn't be a bad thing, right? Just kidding! I'm really enjoying being able to wear my jeans that had previously been relegated to the "doesn't fit me anymore closet!"

Best of luck on your journey, and keep us posted!

=Becky

Hi Becky,

I was so pleased to hear from you about your battery issues. Thank you for your wise advice re. being clear about what I want with NS. Sorry you went through the ordeal of surgery and didn’t get exactly what you wanted. Well done to you to for losing so much weight! For me, the losing weight was the easy bit, it was only about 5kg. It happened when my specialist changed my daytime Neurontin to Topamax (topirimate) to address weight gain side-effect. I didn't diet, I just wasn't hungry on the Topamax and gradually lost weight. I too enjoyed getting into my skinny jeans, but I can no longer wear them as the battery rubs and hurts too much. The skin is very tight and hurts with hip flexion and exercises. My P.M., who also inserts scs, thinks it needs to be inserted deeper. I can't imagine how to do that without going into muscle given my size. Ouch!

I've had my SCS for 6 1/2 years and I remember my NS saying people's brains generally tend to adapt and stop receiving benefits around this time. At the moment, my SCS continue to help continue to help with pain and improve function especially sleep, neck/thoracic movement and endurance but not as much as in the early days. I think I would like to leave it alone for the moment especially given surgical risks with CRPS and make a decision when the battery is closer to end of life, except if NS thinks surgery is necessary due to risk of battery eroding skin/and or risk of puncture and future infection. I trust my NS, he is conservative and will give me good advice. Orthotist at hospital has offered to make a patch from neoprene (wetsuit material), foam, elastic and Velcro to protect the skin and spread the pressure, if I decide not to go ahead with surgery. Pretty nifty! Apparently he makes them for footballers who need to protect shoulder repairs when they return to play following injury. I'm wondering how long users in general continue to get worthwhile benefit from their SCS? And if anyone aware of any research on this?

Booklover

Becky,

I know the migrated lead didn't lessen the pain; but was wondering if your paddle lead has lessened the pain you previously had before SCS???

Relocating the battery would leave you with the original scar tissue and then again additional scar tissue in a relocating area. Maybe too much scar tissue.

I envy you for loosing the weight; but hey; you can at least have a good excuse in the future for gaining a little additional weight.


Gerry

Hi
I had my unit implanted in Aug 2008 and since then I too lost weight. My battery is in my left buttock also up near the waistband of my trousers.
In February 2009 I had a new battery inserted as the old battery was faulty. It was unpleasant but necessary.

A couple of months ago I went to my Dr. As like you I had more weight loss and I was concerned that the battery had migrated to the top layer of my skin and was 'working its way out'.

My Dr examined me and then did some X-rays to show me that all was well. Yes the battery was very close to the surface but that it was better there than deeper as the remote might not pick up the signal as well as it was. He told me it was well anchored in and it was going nowhere.

He did ask me if I wanted to have it moved but I said absolutely not I dont want more surgery, another surgical site,more scar tissue etc I have gotten used to it now and I'm just careful when I'm doing things not to bang it off anything. And also in what clothes I'm wearing.

To me the less surgery the better and after 7 ops I don't want any more. Try not to worry and I'm sure it will be fine. Any surgery is a risk and each time you are building up scar tissue which itself is another issue.

Take care

Jackie

[QUOTE=Jackiey;1089881]Hi
I had my unit implanted in Aug 2008 and since then I too lost weight. My battery is in my left buttock also up near the waistband of my trousers.
In February 2009 I had a new battery inserted as the old battery was faulty. It was unpleasant but necessary.

A couple of months ago I went to my Dr. As like you I had more weight loss and I was concerned that the battery had migrated to the top layer of my skin and was 'working its way out'.

My Dr examined me and then did some X-rays to show me that all was well. Yes the battery was very close to the surface but that it was better there than deeper as the remote might not pick up the signal as well as it was. He told me it was well anchored in and it was going nowhere.

He did ask me if I wanted to have it moved but I said absolutely not I dont want more surgery, another surgical site,more scar tissue etc I have gotten used to it now and I'm just careful when I'm doing things not to bang it off anything. And also in what clothes I'm wearing.

To me the less surgery the better and after 7 ops I don't want any more. Try not to worry and I'm sure it will be fine. Any surgery is a risk and each time you are building up scar tissue which itself is another issue.

Take care

Jackie [/QUOTE

Hi Jackiey,

I really appreciated hearing about your experience in choosing the non-surgical option and how it’s worked for you. What bad luck in getting a dud battery and requiring replacement surgery so soon! I would have found that very frustrating. I'm glad that the benefits for you have been worth the effort.

You sound so over surgery like me, I‘ve had a similar number, also a couple with serious complications (nerve root palsy, post op hemorrhaging). No wonder I’m a bit hesitant and look at the fine print now. I see the neurosurgeon this Friday and find out whether not operating is an option.

I also have Irish heritage, with a dad originally from near Cork. I'm not yet used to the idea of getting information and support from people who have dealt with these issues across the globe (to Australia). It's quite amazing.

Thanks,
Booklover

[QUOTE=booklover;1090393]We irish seem to be everywhere lol. I have relatives near Cork but I'm from Dublin myself. It's a small world really.
Yes the internet can be a great advantage at time!!! When used in the right way. I hope all goes well for you.

Jackie

Hey ladies,

I haven't posted here in a while but, this post caught my attention.

I have both a medtronic SCS and a medtronic intrathecal pain pump and because of my small frame both stick out a lot! Something I've found to help with this is - KT tape. It really helps stabilize both implants and thus reducing the friction pain/irritation it can cause.

I apply it by starting the adhesion with no tension a couple of inches higher than the implant and then stretching about 50% tension directly over the top and past the implant, ending with no stretch for the last couple of inches. The tape stays on for about 7 days even when it gets wet from showering/bathing. I remove it when it is wet and haven't yet had problems with skin breakdown.

Give it a try you might be surprised..
Tessa

Hi Tessa,

Glad you dropped by. You’re the first person I've ever met with CRPS 2, like me. My specialist calls us “atypical”. Thanks for explaining how you manage to push your battery and pain pump in with tape. I was interested to hear that having a device in the front also causes the same problem for you, as I have the option of moving battery to the front when I need to replace it. I have also noticed that if I hold the top of the battery in that relieves the pain, but I can't do that all night! Unfortunately, I react to any sport tapes with rashes, welts and skin breakdown, not what's needed over my battery! Nevertheless you’ve made me think, I may be able to achieve the same effect with elastic binding without affecting the skin.

I will look into this further,

Booklover

Hi all,

I visited the neurosurgeon yesterday, he was wise and measured in his approach. He is less interventionist than PM, who has recommended surgery and also implants them. NS understood that I was not keen to have surgery at this point, although we discussed both options. His opinion was that surgery is not urgent and the timing of replacement depended more on how much pain/annoyance it was causing me and amount of remaining battery life.
He guided me towards gathering more information and has organised a visit with:
• my Medtronic Rep. to check the condition of my current battery as it is 6 ½ years old and to find out about their newer smaller battery(didn’t know they could check on this)
• a Nevro Rep.to find out about their battery (25% bigger than Medtronic ), although he indicated it is fairly new here, he had little experience with them and less track record compared to Medtronic.

He also said:
• He is okay with some parts being covered with just skin, would only worry if it was bone underneath, and not that concerned about weight fluctuating if I want to go back on Topiramate
• “Just don't do anything stupid”, (that could be hard!) Or let anyone touch battery site except Medtronic Rep
• Risks of surgery are 2% infection at battery site, didn’t think there was much risk of CRPS spread
• Easy to reposition and replace battery in buttock, but he could also move to abdomen as apparently I have enough fat there!

So, I'm happy with his approach of gathering more information- in case I do something stupid, find the pain too annoying, or am heading for an exhausted battery anyway and need surgery. If I decide to go ahead, I have to make another appointment.

Thanks for your messages of support

Booklover