http://health.groups.yahoo.com/group/DBSsurgery/ Try this yahoo group Firelady ! I do believe that DBS is covered by medicare , but the people in this room will know for sure ! Make sure you research the facility you have in mind for doing the surgery ! Ask people about the experiences they have had there ! Look closely into the incedence of staph infections! That is one of the main concerns ! There are facilities that are better than others, so ask in DBS group !

Your friend in PD!
Michael

I just saw an operation on T.V. for DBS. tenmike1957, were you born in 1957? If so, which month? I was born in December 1, 1957.

I better go post about my husband.

Yes munchkin , I was born in 1957, 12/31/57 ! I would gladly send you some imformational Urls if you need more information concerning , PD and the possible meds ! and their side effects ! I hate we;ve met tis way , but It\'s great that we have !

Your friend in PD!

Michael

i have done a lot of research. also talked with a surgeon.i cannot come to a decission for myself. a lot of people have had sucess. i have more issues than just parkinson diease. there is more involved. i have low blood preasure, which makes me pass out. if the surgery does not help that. i\'m in the same position,i started in.

i have been told deep brain stimulation surgery would cost about 30,000 dollars. it is covered by insurance and medicare. if anyone know anything else about this surgery please let me know. thanks

http://www.georgetownuniversityhospital.org/body.cfm?id=1236

http://www.georgetownuniversityhospital.org/VideoPlayer_V2.cfm?Video=farkas


http://health.groups.yahoo.com/group/DBSsurgery

Hi everyone I have PD for 5 years. Was stable for 2 years and then it got bad fast. Doctors gave me 2 choices. DBS or Levodopa pump.I choose DBS. It worked great ,but my head infected , because little bit of wire got trough the skin, it had to be taken out. Am on antibiotic ,cannot wait to get the DBS put back. Rite now I feel horrible. Pray to Got I do not have to wait to long. I hope this helps, Z

RE DBS,

FIRST LET ME QUALIFY AND SAY I LIVE IN AUSTRALIA AND I WILL EXPLAIN WHAT HAPPENED TO ME AND THE PROCEDURE FROM THAT ANGLE.

MUCH OF THIS YOU MAY ALREADY KNOW.

DBS IS USED TO DEAL WITH DYSKINESIA, THAT IS TREMORS AS OPPOSED TO SHAKING. THERE IS A MARKED DIFFERENCE BETWEEN THE TWO.

DYSKINESIA IS BROUGHT ON BY THE PROLONGED USE OF ANTI- PARKINSON DRUGS LEVODOPA, THE PRECURSOR OF DOPAMINE IN THE BRAIN, AND/OR BY BEING OVER MEDICATED. THE INTENSITY OF DYSKINESIA IS MADE WORSE IF THERE IS ANXIETY OR STRESS PRESENT.

DYSKINESIA DEVELOPS AFTER AROUND 7 YEARS OF TAKING THE DOPAMINE REPLACEMENT DRUG.

RE HEALTH CARE.

I HAVE TO SAY I AM A VERY FORTUNATE MAN INDEED. THE WHOLE PROCEDURE, WITH PRE DBS TESTS AND POST DBS TESTS COST $A I40,000, WITH DBS COSTING $AI00,000.
I AM ON A DISABILITY SUPPORT PENSION,
I PAID A BIG FAT ZERO. LIKE I SAID, I AM A FORTUNATE MAN.

DBS WAS DONE BY
THE AUSTRALIAN NEUROMUSCULAR RESEARCH INSTITUTE,
IN PERTH,WESTERN AUSTRALIA.

THIS IS WHERE I LIVE.

TOGETHER WITH BRISTOL UNIVERSITY IN ENGLAND, THE NEURO-SURGEON HERE HAS PIONEERED A WAY, TO DO THE SURGERY WHILE THE PATIENT IS UNDER ANESTHETIC, ASLEEP THE WHOLE TIME.

ALL I CAN SAY IS THANK GOODNESS FOR THAT.

I HAD THE PROCEDURE IN OCTOBER 2009, WITH SUCCESSFUL OUTCOMES.
INITIALLY I WAS REFERRED FOR DBS BECAUSE OF RAMPANT, HYPER DYSKINESIA - TREMORS.

DURING THE LEAD IN PERIOD, BRADYKINESIA (SLOWNESS OF MOVEMENT) BECOME ANOTHER ISSUE AND BY FAR THE WORST, LET ME TELL YOU.

I WAS SPENDING MORE AND MORE TIME ON THE FLOOR.

ONE - AS A SAFETY MEASURE, LEAST I FALL,
TWO. BECAUSE ONCE DOWN THERE, IT WAS SO HARD TO GET BACK UP.
I CRAWLED AROUND A FAIR BIT IN THOSE DAYS.

BEFORE DBS MY MINDSET WAS -

IF THEY CAN REDUCE THE TREMORS BY 50%,
THEN THAT WOULD BE NO MEAN ACHIEVEMENT.
I WAS NOT EXPECTING MIRACLES.

IN FACT THE TREMORS HAVE BEEN REDUCED BY 95- 98 %. I AM WELL PLEASED, AS INDEED ARE MY TREATING CLINICIANS,

MY STIMULATOR HAS BEEN ADJUSTED, AS IN FINE TUNED, A FEW TIMES SINCE DBS AND MY MEDICATIONS AND DOSAGE TIMES CHANGED ACCORDINGLY.



DBS - THE PROCEDURE.

I. DAY ONE - MRI AND FRAME FITTED.

2. DAY TWO - ELECTRODES FITTED, 8 HOURS PLUS.
I WAS UNCONSCIOUS THE WHOLE TIME.

ABOUT A WEEK LATER - STIMULATOR UNIT AND LEADS FITTED.

NO PAIN AT ANY TIME, ONLY SLIGHT SORENESS AROUND HEAD WOUND.

IF YOU NEED ANY OTHER INFO OR SUPPORT FROM ME, JUST SAY THE WORD, I'M HAPPY TO OBLIGE AND SHARE.

I LEAVE YOU WITH MY PERSONAL MANTRA,

MAINTAIN A WINNING POSITION.

Aliveo that was a great post. Detailed information that is very helpful to everyone to understand the procedure better. Its information like that that makes this site so valuable. You deserve a big ATTABOY!

If you are concerned about medicare covering the cost, then contact the facility that is doing the procedure they would be able to tell you. Ask for the billing department. Also, Social Security would know if it is covered or not. Some insurance policies do not cover DBS because they consider it an "experimental procedure".

Just curious though, if a person can hold off on the meds for awhile then they will last longer in their life span as a whole. I have now had 4 doctors tell me that same thing----to hold off if at all possible as long as you can. They said over-dosing of the meds causes the symptoms to return with a vengence. Wonder how anyone would ever know if they were "over-dosing" on meds when the dr is the one prescribing it---kind of confusing there.

My husband is 44 yrs old, diagnosed at 39. The bradkynesia is so bad he can't take it anymore. He is in the pre-testing stage for dbs. We are BOTH so very excited. We found a wonderful neurosurgeon in Washington DC. The total cost is $280,000.00 and luckily our insurance is covering at 100%. I don't know about medicare, that is an 80/20 plan usually but maybe under the circumstances it is different. The problem is, most people have medicare AND a secondary insurance.

I have had DBS done twice. The first op was done about 11 years ago and it didn't work. The second DBS was done 3 years ago and guess what? didn't work. i was awake both times The second op I was awake 8 hours, but luckily these days they can do it while the person is asleep. Unfortunately the surgion placed one of the electrodes to close to the part of my brain that triggers depression and when they turned the dbs on I was so depressed that I had to go back into hospital . So I personally , am not a big fan of DBS, but others have had great success with theirs and when you are in advanced Parkinsons it certainly is worth a go. . But make sure you have read all the information and talked to other Parkinsons people who have had a DBS. I also have some trouble with the wires in my neck . They sometimes get tight and I have a lot of discomfort. Now I know some will say that I should only put positive comments up, but I beleive that you should have the benifit of my experience with DBS so you can decide if this is for you

Cherie-----That is terrible that you had to go through all that twice. I feel so bad for you.

I agree with you, whenever people are going into a brain surgery they sure do need all the pros and cons of it as well as experiences from others who went down that road. That is true alot of times people only want to hear the "positive" of anything. It is important to be a realist----then make a decision like you did.

Hugs to you honey, sure hope you are feeling better.

Hi Cherie,
Thanks for posting your experience. That is what we are here for, to share our experience, intake all the info, pray and then make decisions. I know I read Michael J. Fox's book and he stated something to the effect that he didn't have DBS but had another type brain surgery for Parkinson's and he was not going to have the other side done right now until more research has been completed. It has been at least 6 months since I read the book so cannot quote him verbatim.