We have a question about DBS. Hi all! My husband is considering getting DBS. We are concerened with a situation that Export had yesterday.

[lmbanni]

First we didn't know some DBS didn't come without a control for the person it is in. We didn't know that the issue of the battery going dead was that complitated. We thought it would give advance notice somehow.

1.) How old is your DBS Export?

We were told they are using a differant model now.

2.) We are in the US and if I'm correct I thought we were all using the same type. Please let me know if the UK and other places are using differant ones. I don't remember the name of the one the doctor said he would use on my husband.

3.) Do any of you know the name of your unit? Our doctor also said that the old units were still working great after 20 years in paients. Has anyone had theirs that long?

4.) Does the DBS with the control always let the user know when the battery is going low?

5.) How long wil it last after it lets you know it is low? Days? Hours?

6.) Do any of you have problems with the DBS other than battery?

7.) What are they?

8.) Do you feel the benifits of it out way the problems?

Thank you for helping us out with our worrys about this! Yours, Mary

[compucure]

Mary DBS stimulators do come with a remote control unit. I have been told that my battery will last for 5 years. The DBS system I have is from Meditronics.

Speaking from my own journey with PD & DBS the benefits far outweigh any problems - not least of all I halved my medication and got rid of diskynesias. I hope this information is useful. Tony

[mcbsid23 in reply to compucure]

Thanks for the input. I am considering DBS as well. My doctor said they usually like to tinker around with meds for up to five years before considering DBS. But the tremor in my right hand has been fairly immune to the meds so far, and my neurologist commented that he would start me in the DBS process. He seemed confident the procedure would wipe out the tremor.

[compucure in reply to mcbsid23]

Yes it certainly improved my tremor. In fact I inadvertently switched off my stimulator some time ago and I was "all shook up"!! Best wishes with the DBS process. Tony x

[tmhiggs]

i am considering dbs also. do es anyone know if it works for the other symptoms, not just

tremors? i dont have tremors, but mine are more of the balance issues, unsteady gait, rigidity...etc.thanks. tina

[goose63058 in reply to tmhiggs]

I don't have tremors,butsince the instalation of my medtronic I've had terrible muscle rigidty and an unsteadty gait, my voice is whispy.but diskynesia is a problem of the past

[debbie66]

Hi ,my husband had his DBS done 8 years ago.

The pros for DBS.

Diskynesias stopped.

Meds gone from 15 tablets a day to 6 a day(in the last couple of months he has had medopar added to help through the night,so he is now on 7-8 tablets per day)

We have a friend who has the rigidity,and they had it done and it worked for them.

Cons for DBS

Balance and speech can be affected ,this happened with my husband.

He says that the pros have definitely outweighed the cons.

My husband has had 2 battery changes in the 8 years and he says you can tell when it is starting to run low as he doesn't get as much "on" time between his meds,he becomes more tired and he gets some diskynesias in his head and neck about tea-time.I can also tell as he gets slouched shoulders and his hand and arm become rigid and he becomes slower in everything he does.

The remote has to be placed over the box, which my husband has in his chest just under his right shoulder ,then you just press one of the buttons and check the lights on the back.

In the UK we have PDNS(Parkinsons Disease Specialist Nurses),we can contact them at any time and they keep a check on not just the batteries but the meds and our well being .If the battery needs changing they make all the arrangements .

My husband has a remote which he can use to help with his settings,there is a set of lights on the back of it and they flash amber if the battery is very low,it also lets you know if the battery in your remote is low and needs changing.

We know there are newer models as they are making the DBS better and better all the time and the next time my husband needs a battery change they are also going to change the box in his chest and his remote.

There are specialist speech and physiotherapy designed especially for Parkinsons so if there are any of these issues after the DBS you can have these and they do help,it's hard work but well worth it.

Everyone is different,the choice at the end of the day has to be yours and yours alone.

[FifteenyearsPD]

I had DBS abut 6 months ago and my stimulator is on initial setting, I had a rechargable Medtronics stimulator inserted under my left collarbone. The neurosurgeon went with the rechargeable for several reasons- smaller than traditional stimulator and he was concerned about where it would go in my small frame; usually lasts 10 + years (about 2 x's the traditional and I was very technologically comfortable with the concept and recharging the implanted device. It takes about 1/2 hour every 3 or 4 days. I have an "antenna" that gives me a reading on charge remaining and a plug in charger that "recharges the charger" It took a little while to get used to the implant - same would have been true with traditional one.

I had immediate and incredible improvement in my gait, and body movements. i did have some negatives side effects on speech and my handwriting is awful (but always has been) and I still can't sing or do extreme suduko but then I could not do either prior to surgery-- we can always hope for something even more miraculous.

Go for it - DBS is well worth the surgery

[lanep-since03]

GO FOR IT!!!! Had mine done in march cut my 2 prescriptions in half. No regrets!

[lmbanni]

Thank you all for your answers!!!