Hi all,

As you all know, I've had problems with my battery location since I had it implanted this past Nov. I saw my dr a couple of weeks ago, and he said he didn't want to move it as he couldn't see any reason why it has hurt so bad. In fact, he said it looks great. he did agree that it has started to turn, so I do have a corner sticking out more then the rest. He said it might get worse it he moves it, but I figure it can't hurt that much more. He did say that he felt that the rsd has moved into my butt. (i know there is a joke there ). I'm willing to take the chance of it getting worse, but as the whole butt cheek hurts, both sides sometimes, right side always, I figure that moving it might help it and that rsd hasn't really spread. He said that he was touching areas not even close to the battery and I was complaining how bad it hurt. It felt like it was on fire and was stinging something fierce. Maybe I just don't want to acknowledge it could be spreading.

surgery will be July 15th, and I'm sure I will be good for my daughters wedding in September.

Hugs
Mary

Good luck to you, Mary. Please let us know the "end" results. (There's that joke you were looking for!)

Mine has hurt since it was installed, and I have always felt it poking through. I kept complaining to the doctor, and I kept getting a run-around. Finally, I saw a different neorosurgeon, who said he would have never selected that location, since I don't have a lot of space, or padding, there. The insurance wants to wait until the battery needs replacing, when it will have to be looked at anyway.

Hope it all works out for you.

Mike

Hey Mary!
I've had a "bionic butt" for years now, and it works out just fine. I couldn't imagine having it anywhere else. The only thing you have to careful of is not losing too much weight because then it can get pokey. And honestly, the recovery time for this procedure is just a couple of weeks. You won't even remember you had the surgery by September! I just had a new one put in in January. Just make sure that they put it far enough away from your hip bone (illiac crest) so that it can't migrate toward it and bump it. Not fun! Extra revision surgeries! Good luck! And by the way, the new batteries these days are like, 1/3 the size of the older ones. Yipee!
Linnie

Hi Mary,
I too HAD a bionic butt.
Now, I don't think they understand but (sorry) I could not sit straight for three years and the pain from the IPG was excruciating.

I could not comfortably sit, lie, and wear a belt or just the weight of light shorts. When the IPG was removed that was complicated but I kept bruising severely with the shallow implantation for three years of carrying around a non-functional IPG over my R hip.

The insurance Co may end up having to treat your back (scoliosis) it will curve) on top of the pain if they were to decline moving it.

I don't think the doctors understand just how much of a burning sensation the IPG shape creates. It becomes major as the contact surfaces with the titanium jacket need to be shaved (scar and fibrous tissue formations) to allow healing & this will take a while but it is well worth it.

THIS BURNING SENSATION IS DIFFERENT TO CRPS!

Your experience is very parallel to mine - it just hurts and aren't we in enough pain already with this darned CRPS?

As an additional bit of information, my pain in my buttock/hip is diminishing as two months have nearly passed since the IPG was removed. I can sit straight and that, at least is more confortable - quite significantly so.

You have done the right thing in being persistent. The areas he was touching would be bruising - I had an extremeley large area that was bruised around the IPG but as it was being pushed around in its little pocket (which they cut under local and I could feel the scalpel cuts) - I ever calmly asked for some more anaesthetic as I could feel the blade cutting into my buttock.

But after this, the healing process was so slow and it always bruised severely.
Good luck - it is highly likely that it is not a case of ....the patient failed to respond. It is much more likely they put it in the wrong place. Your descriptor of "on fire" is exactly what it felt like.

Best regards
Auberon

Wow, it's good to know it's not just me. My poor doc has been saying that he can't see any reason for the pain. There is no fluid buildup, swelling, (ok...how can you tell if your butt is swollen.....if that is the case, my WHOLE body is swollen ).

bassman...loved the end joke. that had me cracking up.

lynn my battery is so far away from the bone, that it is almost on the other side. (don't want to give tmi, but you get my point). I've only lost about 15 lbs, and I have another 40 to go to get back down to my pre rsd weight.

Auberon,

You are right, what I have sounds just like what you did. When I sit, I have to fold my right leg up to the cushion area, and turn my leg from the knee down to face away from my body. it is really weird. Most of the weight has to be on my left cheek. I wish the surgery was sooner, but I guess I can hold on till mid July.

Hugs
Mary

Mary, I am so happy that your having your scs battery moved, as you have been in pain far to long to let it go any longer. I wish you all the best my friend. ~Love you! Desi

Mary My Dear! Can I ever appreciate what you are going through. It has been since 04 that I had my implant put in. Of course Dr Quacko put the battery in my right hip right at my belt line. The dang thing has never worked since day one and I cannot get a Dr. willing to remove it due to a huge liability (different story all together) so I am stuck with it. It has moved so much and now you can see a perfect outline of the battery just under my skin. I keep telling folks that if you give it another 6 months you'll be able to read the serial numbers on it since it is protruding so much more now.

Being that I am over 6'5" tall the Doc didn't have a long enough lead to insert it from my hip to my neck area and so now the wires tug constantly when I bend over or lay wrong in bed. The jerk sewed the leads into a nerve of my neck so that is why no doc will touch it yet. They tell me that it's safe removal cannot be guaranteed. Oh how nice!!!! Since the surgery the Doc has moved to somewhere in Northern Canada. Run to the border. Run As Fast As You Can!

Last Tuesday I ended up in the ER with extreme chest pain shooting down my left arm. Since the SCS is completely turned off it turned out to be a heart attack. It was bought on my extreme stress and something or other to do with the Sympathetic Nerve System.

My God I am rambling. So sorry. Bottom line, I feel your pain. In my butt not yours that is! Chin Up as I always say and I will keep my fingers crossed for you. Best Regards as always. Mark

Mark,
How are you feeling? everything getting back to normal?

things here are crazy. Here it is Aug 11th, and still no surgery. The day before surgery, my drs. nurse called and said that the insurance hadn't made a determination on the surgery. Well, it was approved the following week. Then my dr went on vacation, he came back and said that he wanted it moved to my belly, so another dr. would do it. He would get back to me with a week a two, and if the other dr couldn't do it for a few weeks, he would find someone else. Well, then my dr. came back from vacation, then his surgical nurse went out for 2 weeks. she cam back last Thur. and still nothing. Of course, DH has to go out of town next week, and my daughter is getting married on the 25th of Sept. So, it makes it almost impossible to get the surgery done before the end of Sept. Also, I'm going to have a house full of people for the wedding, plus all my animals, dogs, cats horses. Plus all the bridal showers etc. I'm about ready to just live with the pain. Not that I want to, but I can't keep living my life waiting for the next phone call. Actually, I'm about ready to find a new dr that will move it, but I figure by the time I find someone, my dr. will have scheduled it anyway. Oh well....It's got to get better.

Hugs
Mary

Just "NOT FAIR, MARY"!! These doctor's are so darn disrespectful of your pain, needs!! I would get the doctor who put it in, to take it and move it where it is susposed to be!! Keep after him! Tell him about the wedding, your hubby going out of town and that your just sick and tired of "The run around"!! He is rude to be doing this to you!! Your plate is over flowing and enough is enough!! Call him every day and whine, cry, ***** slap the man!! LOL sorry, but this makes me so angry!! Now, you have to be in pain for your daughter's wedding! I am so sorry that all this crap is happening to you!! You don't deserve this treatment!! Please keep us posted on what the rotten doc is gonna do! I'll be praying, keeping you in my thoughts, sweetie! Love ya!~Desi

Desi,
I agree with you. This is getting to be a bit much. I called today, and the lady is spoke with said they are waiting for the call from the dr. that is going to do it. She is hoping this week. I told her that I was going to give up and learn to live with it. She said not to. I told her that I know I have a big pain in the butt, but I didn't want to be one to her. (she only give the messages, she works the front desk). Jeff went in to pick up my meds Fri. and he told her ""Tell the doc that I'm not happy". If you could see Jeff, you would know how scary that is. People used to think he was a state trooper, because he looks so stern and scary. that's what happens when you were a Marine. People who know him just laugh at that look. we know he's a ***** cat. So...I'm hoping maybe Wed. They know that if it can't be done before the 17th (when Jeff leave), then it will be the end of Sept.

How are you feeling? How is DH? is the nurse still coming out? Have you been able to rest? Hope so.

Hugs
Mary