I had an appointment with my neurologist this week. She is a movement disorder specialist and is a big proponent of DBS. I've known this about her since I began seeing her almost 2 years ago. However, we hadn't really discussed DBS prior to this most recent visit. At my appointment she told me that I was a prime candidate for the surgery and that she would like to do it within the next year. Any advice? Is there anyone out there who has had the procedure done who would be willing to share their experience?
Thanks,
Joel
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IamJoel56
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Mine is saying the same. But he wants to see the "specialist" at KC Med. But lately I have not seen or heard that much that is a plus to convince me. I see him this afternoon. I keep holding out that eventually they will release something new that is better than what we have now.
We live in Australia , and my husband ( aged 67years ) underwent DBS 1 years ago after diagnosis with Parkinson 12 years previously. His main Parkinsonian symptoms were tremor+++ dyskenesia ,bad fine motor skills,(unable to dress and sometime feed himself ) and anxiety attacks.
He has had others issues with "fractured bones" since, following a fall during rehabilitation however the DBS has been the best thing he has undertaken, since diagnosis. You need to be patient as I felt our expectation were high probably due to media coverage ,it does take time. but well worth it. Surgery for him was over two days. the first day ( Insertion of the probes ) despite natural anxiety, was long but went without incident, he was awake during the whole procedure and was positive, "hungry" and happy on return to his room. Day two the Surgeon inserted the stimulator in the chest and required some anaesthesia, so a bit groggy on completion. He was discharged the following day with no ill effects, and remained on his previous medication. Two weeks after surgery meds were stopped and his stimulator turned on in the Neurologist's room. Tremor stopped, could do up his small buttons etc walking well - very exciting, however as the swelling reduced in the brain the stimulator needs to be adjusted numerous times (this is where the patience comes in!!! ) it has taken some time and if his fall (from overstimulation ) had not caused fractures in the pelvis and ribs DBS would have been perfect. He his now rehabilitating and practicing walking not because of Parkinson's but due to the other health issues. we have just returned form 17 days holidaying in the islands , go for it , life is too short . Best of luck . Faye
Remember, I am unqualified and uninformed about the specifics of your case. In addition I cannot speak of my own experiences with DBS because that lies ahead of me.
In spite of the fact that you have Parkinson's you certainly are entitled to a second opinion by a professional if you are uncomfortable with the advice you receive. In my case my MDS from Mayo Clinic told me straight out that DBS is a consideration only after the meds have proven ineffective. From some of your descriptions in other posts, you are either under medicated or the meds have proven ineffective. I remind you of your statement from your PIGD post:
"I am currently seeing a new doctor who is a movement disorder specialist. After six years and five neurologists I finally feel like I'm with someone who understands this disease."
Still feel that way? Obviously it is a big decision. Good Luck!
Im in Las Cruces and had DBS surgery June 2012 in Albuquerque. In fact I'm in the Docs waiting area to have my DBS tweaked. I'd be for the worse if I never had it. My theme song is "break on through to the other side"!
My experience has been positive. Be patient. The current thought is to have DBS sooner than later. It takes time to get adjusted and programmed correctly, but the result is an improved quality of life. Presently, I am not taking any Parkinson's meds. The DBS controls my tremors and my gait has returned to "normal". My speech is somewhat soft and even slurred sometimes when I am tired, but I can eat our in public, dress normally and be more engaged in social situations. Get several opinions. There are different ways to perform this surgery and there are different medical centers that perform it. What is most important is the programmer and how accessible they are to you. Good Luck
Joel: I've had PD since 1995 (age 31) I had bilateral DBS surgery in Jan 2007. My main symptoms were tremors and stiffness. It was the best thing I ever did. I still take medication but very minor doses.It's important to have a great programmer. I had my surgery at Univ. of Maryland Medical Center in Baltimore. They know there stuff there. My support team of Dr.'s and nurse are great. I am still able to drive. My voice was affected. I sometimes slur my words when I'm tired. It takes a while to get the settings right also remember that it is not a cure. Good luck!
My original neurologist wanted me to see a DBS surgeon but my latest neurologist said the surgery will not help with my specific problem which is FOG (freezing of gait). I suggest you listen carefully to those who have had successful surgeries and what symptoms were treated.
I had DBS surgery June 2012. It has improved quality of life. I was in car accident in January that set me back as wires were jarred. Physical therapy, daily exercise, and reprogramming every. 2 months has helped my overall improvement. I am going to Albuquerque today with Dr. Jill for tweaking the DBS.
My consultation appt is this Wed. I've had PD for 17 years and my Dr feels its time to take the plunge. I am going to UCSF a 2.5 hour drive one way....this better be good!
I had DBS in 2011 with good results. At the time my main symptom was tremors so the probe was placed for that.. Recently, I developed other symptoms( dyskinesia and gait issues and plan on having another probe inserted next month.
There are 3 different sites where the probe can be placed which effect different symptoms.
It might be helpful to discuss which site would be used and why.
Medtronichas an excellent web site and will sent you information on DBS including a DVD.
The National Parkinson Foundation also has a booklet called Guide to Deep Brain Stimulation Therapy
I had excellent results . The stimulator was not turned on for 4 weeks ( to let the edema , etc of the brain to heal) and it took about 6 months to get the best reults with the programming.
i was so against it until i was so miserable and not so independent because i was afraid. now since i have had it all i can say is do it .do it. do it.!!!!!!!!!
I am guessing that you are 56. I am nearly 56 (2 weeks away) I was diagnosed 6 years ago and would have DBS in the morning if my symptoms gave me more trouble. DBS is a life changing experience. I should know, since I meet patients every day and then have the opportunity to "scrubb up" and follow them into surgery. I have never met anyone who wasn't thrilled with the outcome. Usually their only comment is the wish that they would have done it sooner. I have just come back from the World Parkinson Congress, where they talked about DBS as "the" therapy for DBS. Problem is that people leave it until its too late....don't wait until you have exhausted all other options including meds. The sooner its done the better the outcome...you are buying yourself time...less drugs, maybe none and its reverseable if they ever find a cure A couple of questions you need to consider....how many DBS proceedures does the clinic do per week? How many years is the surgeon performing DBS? Is it his speciality? Infection rate? etc What imaging do they use for targeting? If you need anymore help, just let me know...this is my speciality!.
Just read your reply to Joel am very interested in your advice re question s to ask your surgeon doing the DBS is it ok to ask about infections and how many procedures he has done the Dr I'm going to see is a Professor so ill probably feel a little intimidated appreciate your time thanks Sunnysky
hello - MY old doc of 7 years just retired. This might prove opportunistic in the fact that i stumbled across a new neuro(of 4 years) who is very Pro-DBS. Have to wait 2 mos to see the N-surgeon. Lets keep in touch.
I am not sure if I can help without using names but I, too, have a neurologist who was anxious to try it on me. I have had 7 years of trouble programming what my doc says is "a nasty mix of dystonia and parkinsonism" I found a programmer that was better for me but I have to take a plane ride to see her. I would rather not share names and hospitals right now out of courtesy, but at one point my doc said they were "relieved" that I had found her. I had STN and GPi surgery and am told I am one of about 50 with this set up.
Dottie... did you have 2 different surgeries or just one? Was the stn done on one side and the gpi on the other? What was the reasoning behind all this?
I did. When I had the DBS-STN, the docs didn't know that I would have increasing dystonia. After 1.5 years of unsuccessful programming, my doc suggested DBS of the GPi, the primary site for dystonia. You are correct; I have two stimulation systems. The reasoning was that the STN is not as effective as the GPi for my emerging dystonia. The critical step was finding a programmer. I have to take a plane to see her but she is a genius. Just dumb luck on my part!
I had DBS in 2011 in Wisconsin at UW Madison Hospital, my doctor is also from the movement and disorder clinic. While yes it was a hard surgery, it was the one thing that gave me back my life!! I never knew how bad I was until I watch tapes taken before and after. The all has went well, so far but I credit this to knowledge, I did my research and I have a host of qualified doctors and nurses........however my family support was the best A PERSON COULD ASK FOR!! however I did go down this road 2 yrs earlier with a different health systems and I had a bad feel about it all, 20 mins before my head shaving party 5 doctors came and cancelled the surgery, I was devastated. I had made peace with my decision. So when God closes a door( Or slams it hard) another door opened and it was the right path. This one thing was huge to me, at my first appointment with new doctors I was asked "HOW DO YOU TAKE YOUR MEDS?" I took my pill box, laid the medicine out in order, they snapped a photo with a cell phone camera!!! then I was told we need to know this so we can write your scrips to match your use!! The other place was on my butt about meds saying I didn't need this or that, The new doctors TRUSTED ME and TRUST HOW I TOOK MY MEDICINE!!! I felt Like I was in Heaven!! My advice is trust your gut feeling, and don't let anyone talk you into something you don't want. Take Care and God bless. Please let us know what you decided this is the best place for talking, you may not always agree but this a great group for support and info!! Kadie
I've read where researchers are experimenting with accomplishing the very same brain stimulation OUTSIDE the brain with TDCS and CES therapy without surgery
I had DBS just over a year ago in Sydney Australia, my symptoms included very mild tremors stiffness together with dyskinesia, restless legs at night and slowness, and I was at a stage where I didn't think life was worth living. I asked my neurologist for a referral to a Movement Specialist and sought his advice as to whether I would be suitable for DBS, he said that he thought I should be ok with an altered medication program, it turned out worse. After further tests I got the OK & saw the surgeon. The surgery was scheduled and completed in one day and the stimulator was turned on the next day. I can now dress myself again quickly instead of taking 30 minutes. My fine motor skills are a lot lot better, you just don't know how good it is to do the little things until you can again. I think that you shouldn't have really high expectations in my case I have other problems which are not PD related , my advice is just do it your life will be so much better. My favourite DBS story is about a lady in Sydney who asked the Nurse the day after surgery if she could walk to the bathroom & clean her teeth "of course" was the reply, ten minutes later she asked if she could do it again "why" asked the nurse "because I bloody well can" she said. Good luck with this life changing decision.
I'M LOOKING AT DBS AS 'GETTNG BACK' MY OLD LIFE. NOW I KNOW IM BEING OVER OPTIMISTIC BUT WHY NOT? PARKINSONS TOOK AWAY A BIG PART OF WHAT I USED TO BE. MAYBE WE HAVE IT ON THE RUN.
.2001 andby 2006 I was pretty messed up from a well knowed dr. and his asst. I was over medicated 2 the point I as hallucinating, lost 60lb.'s in 4 mos.my teeth started dropping out of my mouth,litterley!!!! on my birthday May, 24th. dr.fredric junn. did my surgery at Beaumont hosp. in Royal Oak mi.This was he Best decision I ever made.H
e saved my life, and i am doing pretty darn well, except 4 a fratured lead wire. but that didn't put a hinderence on my goals. my 1st symptoms started when I was 8yrs. old, 1965. I had never even heard of pd.Either did my p arents. i alway shuffled myfeet ahnd was a clutz, always bumpping into thing my mom was ways telling me to pick up my feet no one that knew me wood allow e 2 eat or drink any
where but the kichen or the back yard. i was 44 when dx. And i thank god every day i had the surgery. this is just my opinon. you can do w/it what u may.Good luck,God speed and Peace out! P.S. After surgery !yr. later my x-husband walked out on me and left me to fend 4 my self on 15 acres. life is ruff,but I did survive, met my last love of my life,theodore. we hadn"t talked since school. 37 yrs.He is my hero.We r now married and he is my protector, my best friend, and we both love each other and wood walk out on each other, because he is a man, not a mouse!! And we lived happlied ever after. . God bless DS>
I had my DBS on July 23rd of this year, I am really impressed with the results. I can feed myself . Dress and put on my makeup with one hand! I am very excited about this procedure. Go for it and good luck to you.
It stands to reason that nutrition and exercise are needed to be the second and third arm of the battle with meds, and DBS possibly, being the first and the fourth. We will see as the decisions get made.
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