Is DBS the miracle they say it is?

[4809cats]

I've seen so many videos of people that have had DBS and it doesn't look like the cure-all they claim it to be. Most of the patients look like they've had a stroke or a slowness of reaction in mind and body. Why is there not more information on what can go wrong? OR am I expecting too much?There has not been much on the cons of DPS, what have you heard?

[debbie66]

My husband had DBS in 2004 ,like all things there are pros and cons.

The pros,my husband had dyskinesias 24/7 and was on about 20 tablets a day.After DBS the dyskinesias stopped and he was on 6 tablets a day.

As time goes on the cons start to appear,his balance is a lot worse ,he falls a lot more and his speech is quite bad.There is physio and speech therapy to help with both.

Everyone is different and I asked my husband if he thought the DBS was worth it and he said it was as by now he would be totally dependent on others,in a wheelchair and not able to do much for himself.

If you are considering DBS then at the end of the day the decision can be yours and yours alone.Find out as much as you can,when my husband had his done he was part of a trial in the UK and there wasn't a lot of info out there.

DBS is not a cure ,it holds the symptoms at bay for a bit longer well a lot longer really.

Hope this has been of some help to you.

[moonswife in reply to debbie66]

Debbie, your story is my story as well. The difference for us was my husband shook so badly five years ago that he lost 100 lbs in one year. DBS, no shaking at all today. Is the disease progressing, dammit, yes. But his activities of daily living are restored. He is enamored with ice cream. The pounds are back. DBS made life not so bleak, and he would do over in a heartbeat.

[debbie66 in reply to moonswife]

Hi Moonswife my hubbie had the same problem wiyh weight loss and no matter how much he ate ,as he says he just shook it off.After the DBS he gained over the last few years 42lbs and he is now a healthy weight of 142lbs (13 st for us in the UK).

My husbands falls are about 5-8 per day and if its not a fall its a run off to the right til he crashes into something or a backwards run to the right til he crashes into something.

he can laugh at it sometimes depending on where he is but he does have a few bruises and scrapes.

[moonswife in reply to debbie66]

Debbie,

The biggest challenge Mike has is the stutter step. He cannot lift his feet at certain times of the day. I worry every day as I leave for my job. He is a big guy, 6'5" and when he is down it is hard to get him up. He has fallen while I was at work, and how he finally got himself up is a mystery to me. Going through this with a positive attitude makes him a hero to me.

[srarndt]

Hello Cats,

For me my DBS has indeed been tantamount to a miracle. Wiith it, quality of my life has has improved dramatically. Things were looking so bleak and I was having to deal with all kinds of symptoms, that even though I knew there were some possible down sides to the procedure, I was determined to have it done.

As far as cons go for me personally, they have been few and far between. I've become something of a compulsive sweet eater, gaining about 30 unwanted lbs in the two years since my surgery. Another issue is the fact that I am walking and in general functioning I am doing so much better and feeling so much better that some people assume that I am cured and fully capable. Erroneous conclusion, for example, I still fall about 2 times per week, etc.

If you google DBS pros and cons you will find tons of sites which adress this subject. I would recommend reading all you can locate, as well as having conversations with your neurologist, and your neurosurgeon.

Finally, contact the Medtronic corporation (they manufacture the DBS hardware) for they have lots of info to provide as well as people who've gone through the procedure themselves that volunteer to answer questions for anyone considering the procedure.

Best wishes

Steve

Bisbee, AZ

[tlongmire in reply to srarndt]

Steve, where did you have your surgery? Barrow?

Hugs, Terri

[srarndt in reply to tlongmire]

Hi Terri,

No, I got mine done in Tucson. At the time, my neurosurgeon had done over 500 of the procedures - this was a bit over 2 years ago. Also, at that time he never lost a patient during surgery, nor had any other serious side effects

[WayneP]

As for me, I have done much reading on the subject and am I personally am not ready to have holes drilled in my head, wires attached and electric current "adjust" me. There has got to be a better way. For those that did it, I am happy for you success.

Wayne

[FifteenyearsPD]

do it.... pros far outweigh the cons

[Bpetie6]

DBS has not been a miracle for me, but has been fantastic for my life as a father of two.

I've had the surgery done twice, first time I got an infection so they had to take everything out.

Second has done well, My meds have been very reliable and my off times are much better. I still struggle at times and my speech has been frustrating but I'm glad I did it.

[littleoldasianlady]

I'd waited fifteen years before I've decided to go through it. After asking myself over & over [the questions were: what scare me the most on the PD] again and the answers still came out the same [the answers are: the stiffness and the trembling]. I realised I've got nothing to loose. I had the 1st DBS done on Monday 8/13/12 and the 2nd one on Friday 8/17/12. I'm on physical therapy for 2months and just about to start my speech this week. For my adjustments, I'm my 3months return. It's a lot of work and I'm glad I've done it. Now it's up to you whether you want it or not.

[hairnet]

I have been offered DBs assessment and need to give the go ahead for this to begin at the end of January. I am 42 with a young family and need to be more balanced throughout the day. My meds seem to have lost some power and dont seem to last as long. I am trying to gather as much info as possible as frankly, the thought terrifies me.

[Crbee3]

I was so excited to have the DBS 14 months ago, anything that could have gone wrong did, but I am here walking and talking not because of my surgeon, but because GOD wasn't ready for me yet. Would I do it over again knowing what I know now.... I hate to say it but YES, cause I couldn't live like I was. I developed Dystonia BAD, and the thought of living and dying, I begged God to take me everyday, but I know now, I am here to tell others that living with 2 diseases and going what I have gone through, YES it was worth it.