Pain at generator PLEASE HELP

[Torman1]

I had my interstim put in on July 17. My generator site felt fine in 1 week however my leads must had moved during surgery and I could never get the same sensation so I elected to go back in on Sept 11 and have the lead revised well as my luck goes the generation must have gotten wet or something during surgery and it had to be completely replaced.

It has only been 1 week post op. I am having numbness on the outside of my hip and upper thigh not the whole area just parts. It feels like when the dentist gives you a shot and your cheek in numb. I had the same numbness around my incision with the 1st surgery but not down my outter thigh

When I put pressure on the incision and aprox 1 inch all the way around it it feels like pins and needles. Like when your foots asleep but the most AWFUL part is when I sit and move a certian way I have this horriable hot, seering, burning pain that runs into my hip. It brings tears to my eyes and takes my breath away. I quickly change positions and it feels better. I am so scared because I never know when it will come.

Has any one eles had this. I do not know if maybe they nicked a nerve during surgery or if here was just more trauma and swelling this time due to the 1st generator having to be removed or if the new generator is sitting on a nerve.

I am at my wits end!!! I will just die if I have to have another surgery. Thanks for yoru imput.Oh my interstim is off so I know that is not the problem.


Kelly

[Teri]

Kelly~you need to get into your dr's office for an adjustment asap. I had my original surgery 4 years ago. Surgery and revision 2 years ago. I ended up having the device removed a couple of months ago because I was having nerve problems in other places and the device just wouldn't work. It was very depressing having it removed but I'd run out of options.

For me, it did take a long time for things to stop hurting. The fact that when you move a certain way and have horrific pain tells me that it's not where it should be, that's why you should get ahold of your dr asap. What most of us interstimers have had to learn is to stand firm while describing the problems to our drs and refuse to be brushed off.

What happens when you turn the device off? Do you still have that spinal pain? Turn it off for a few days and see what happens with your symptoms.

I am so sorry this is happening to you. I know the emotional pain that you are in right now. Stay close to your dr and if he's got a nurse who is dealing with his/her interstim patients, get close with her. IT's so important to feel comfortable with the people involved with your surgery and recovery.

Sending tons of hugs and please, let us know what's happening. We need you to tell your story. There may be someone out there going thru the same thing you are going thru but doesn't feel comfortable posting so you could be helping another interstim patient without even knowing lmao

[Maureen]

Kelly,
Please call your doctor as soon as possible. I would think this is unusual. Best wishes
Maureen

[icnmgrjill]

Kelly,

Please please please call your doctor ASAP. This is not normal. I hope that you will also file this with the FDA as a complication. This is exactly the type of event that should be reported. See the link at the top of this category for more info on how to file the complaint with Medwatch.

Please let us know what the doctor says.

Jill

[Torman1]

I have the device off the lead wires are on one side the side tha does not hurt and the generator on the other side the side that does hurt. I do not really feel it is a problem with the device itself but maybe the doctor place it over a nerve by accident. The device has been off since surgery. I hate to file a complaint since I really do not think it is from the electrical stimulation but rather by the placement by my doctor. I see him tomorrow and I will let you know what he says.

Kelly

[auntiedeb]

grouphug grouphug grouphug Kelly, I am not instermier but just wanted to let you know that you will be in my prayers and thoughts. I hope you feel better soon and let us know what the dr says.

[Teri]

Kelly~you can file the complaint without you dr knowing you filed. After I filed mine I got a letter asking if they could use my name and I said "NO".......I thought it was important for the FDA to have the info in hopes we will be seeing some numbers anytime soon.