Has Anyone had a DBS Removal

[MKane]

I had DBS in April and am much worse. I'm thinking of having the rods removed. Has anyone here had a DBS reversal?

[vlhperry]

Dear Dbs reciepient,

The surgery is different for everyone, most successful, so please get on the phone with your neurologist or the surgeon and ask them your question.

I'm sorry you have not had success with your surgery. I had great success with mine. I was happy with my outcome.
Sincerely,
Vicky

[MKane]

Vicky,

I have tried to talk to them. My neuro is out of the country indefinately. I have placed several calls to the surgeon. His office tells me he will call me, but haven't heard from him yet and was told he would call me last Tuesday. I've called Metronic and they gave me two names of doctors. The first was supposed to call me on Wednesday and hasn't yet, the second will not talk to me until he talks to my surgeon. I've placed calls to all of the above again this morning.

Mary

[Jo*mar]

I think if possible, second and third opinions from an "outside" dr/neuro/surgeon might be of help too.

Can you send a FAX or direct email to the dr??
there is a better chance of it being "seen" by the Dr.
I think the small call notes get lost easily...:(

[chasmo]

I had DBS in April and am much worse. I'm thinking of having the rods removed. Has anyone here had a DBS reversal?

Normally the devices are just turned off and left in place, especially the leads, since there is the (remote) possibility of damage from removing them.

You need to get evaluated by an independant program. I recall that you live in TEnnessee. Vanderbuilt has a decent program, but if you want the best, go see Drr. Ali Rezai at Cleveland clinic.
You should be tested for open leads, if any show 2000 ohms resistance, an X-ray would be in order to look for any breakages. Unfortunately, X-rays can't tell if body fluilds have compromised a connection though.

I think you posted in DBS Surgery?? Listen to what "DBS nurse" tells you. Roberta is the BEST!

Don't give up on your DBS, it sounds to me like your program is way off. You might want to just turn it off til you get fixed.

Charlie

[Jim0918]

It definitely sounds as though something is not right here. Albeit leads, the settings or whatever. You have made it through the surgery. Don't give up! In my opinion your surgeon is the one to coordinate with. While they are on the back burner I'd get myself to Vanderbilt or The Cleveland Clinic, this thing needs to be looked at before you "yank" it out so to speak. Then work on getting a new neurologist.

[MKane]

Thanks for the advice. My surgeon finally called me and has arranged for me to see another neurologist/programmer. I am going to ask the new doctor about the possibility of replacing the generator. When ever I've been programmed in the past it fails within a week or two. They have also increased my meds over 100%. I have gained 40 lbs in the past month and the fluid buld up in my legs is horrendous. Something is just not right here.

[CTenaLouise]

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