Hi lm martin, have just come back from seeing my consultant who has suggested that i should have DBS. I have read up on the subject but would like to hear from someone who has had this procedure and the pros and cons.I must amit it's not something i like the sound of.
It does sound bad, but so does golf/football/etc when you break it down. Hitting a ball with a stick for several miles.
its also a very personal thing. How can you recommend something with the list of side effects and complications that DBS has.
I was well 'drilled' in the procedure, the possibility of complications and how I should set my expectation level and i weighed them all up against seeing someone who had went through it, with where I was with my meds and future drug regimes and quality of life.
So I went ahead ( no more puns, I promise ). With fantastic results. I'm not perfect, my walking and talking are poor, it's not a cure, if something else arrives on the horizon, it can be removed.
Soz about the speed of response, youve probably had your DBS surgery by now, but feel free to pm me or reply, as you see fit.
Take care
Eck
It's always good to hear such positivity, especially now I have a date for my DBS (April 19th). Where did you have yours done, Eck?
Cheers,
Ian
At our hospital DBS is used for those patients that no longer can do simple things such as drinking water without spilling it from a glass or brushing ones teeth ,the criteria for DBS is best for patients with dyskinesia and less for patients such as my wife who have no tremor or dyskinesia but have freezing & falling problems.
A careful evaluation is also made by a Psychiatrist to rule out any latent or overt mental issues that may interfere with DBS treatment post surgery ,this being said, having friends who have had DBS over the last 16 years , we in most instances have heard that once the procedure was performed and the implant is adjusted no one has regretted it.
A careful trust must be established between your DBS team that will clearly advise you as to where they think your expectations should lie post DBS ,usually one of the happy immediate aspects of DBS is taking fewer pills with a wider window of time before the next dosage ,that alone for many in our PD support group is quite welcome as some are on liquid meds that they take every 20 minutes with advanced PD.
I had DBS in March 2015 mainly due to Dystonia but was on the highest dose of Stalevo too which was becoming less effective after 9 years, now just over one year on I am so pleased that I went ahead with the operation.
all the best Selfbuilder and PD carepartner NYC
mally
Thanks for your report Mally,
I am glad that DBS worked well for you ,DR's in our clinic prescribe Lyrica which may have another name in the UK? for PD related Dsytonia, we used to be given quinine tablets for cramping but our government health agencies stopped it as quinine had in a very few instances serious side effects.
I am betting your first nights good sleep was welcome when your DBS was adjusted!
Good wishes,
Mike
Thank you Mike
I was on a Apomorphine pump 24/7 continuous subcutaneous injection for the Dystonia and yes a big felief tt be rid of the pump and inserting a new needle every day and of course the very painful muscle spasms in my back and neck.
Andrew
Hi Andrew,
Some of us in our PD group do use Apomorphine pumps or portable injections, I have heard of Botox injections to relax throat muscles, etc & etc.
I am happy DBS has served you well ,remembering 15 years ago that DBS consisted of 2 separate surgeries each a month apart ,one for each side of the brain and then months of fine tuning the implant. We have better sirgical methods now.
Greetings from a pleasant spring day in New York.
Mike
Hi martinfish I too have been offere DBS due to my aggressive Distonia. Check out my post DBS surgery and off state. some very interesting replys.
Well I am going for it I put my foot down and insisted I be refered to UCL Queens Sq and I see lead nuro surgeon on July 1St.
So hears hoping I can get it done this year. I f Lincolnshire health authority refuse funding I will creat merry Hell for them. BB
Who are you seeing in London BettyBlue?
Dr Fontinie I have met him on one previous occasion xx
Hi Mike,
The op is usually (Royal Hallamshire Hospital Sheffield) done a week apart but due to the severity of my Dystonia the surgeon did it all in one go and under general anaesthetic 6 hours surgery and 7 hours in recovery ! All good now and my driving licence back.
mally
Hello Mally,
I am happy to hear of your good news regarding your DBS surgery ,many friends in our PD supports have been relieved of their intense Dystonia & tremors.
Must have felt quite good to drive again.
Good wishes,
Mike
@BettyBlue
Yes, I have met Dr Foltynie but I was originally evaluated by Professor Limousin. My neurosurgeon was Ludvic Zrinzo, and if you haven't seen it before you will find a BBC documentary of him performing the "awake" operation on YouTube. I watched this video a number of times prior to being admitted, and found it hugely reassuring - not just for me, but my wife and children, too.
Hello all i finally have been allocated a date for my DBS OP its is on March 7th 2017.
Thankfully i can now see the light at the end of the tunnel......
BB
It will be preformed by Ludvic Zrinzo the same gentleman who done selfbuliders DBS.
I go into queens sq hospital in london on the 5th of March the op being two days later cant say i excited or scared yet but know it will all of sudden be around the corner.
I so hope it deals with this horrible distonia it is definitely getting worse boxinh day was hell 8 attacks i dont know how much more i can deal with.
BB
Bettyblue,
I am hoping that you have the same good results that several in our PD support group here have in relief of dystonia ,especially in the feet, the non stop curling toes .
We have had several PD friends that used botox injections as a last resort, discontinue you them after their DBS implant was fined tuned,. Good luck!
Mike
Hi PD carepartner NYC
I was never offered the botox injections I had enough to deal with the Apo-Go injections especially out and about in public, people can be so ignorant I have had them pointing at me in the street those whom actually speak English as a first language and they could clearly see I was very distressed not one of them showed me any kindness and asked me if they could help.
On this occasion a Polish woman and her husband whom did not speak much English came to my aid I manage to explain I needed to do my injection into my fatty areas like my tummy or thighs and as it was in summer I was wearing a long fitted dress so did not want to expose myself in public. Her husband took his coat off and wrapped it around me and his wife in the locked church doorway so i had support and some privacy and they insisted on staying with me until they could see i was ok.
The others at the bus stop were lucky I could not walk as I swear I would have punched all 4 of them in the face for the comments and pointing at me. So that is one incident that lead me to DBS when my PD dr suggested it I thought he had gone crackers but after a really hellish day a couple of weeks later I decided to go for it. So I done what I do and put my foot down and demanded a referral to the hospital in London where I was on a clinical trial it is the Neuro surgery centre of in the UK and my Neurologist is the top guy in the UK.
Already having that contact where else was I going to go? My brain I decide whom where and when ( within reason ) the Neuro Surgeon when we met him filled me with trust and confidence just because he treated me with respect and acknowledge the fact that I have a very good understanding into Parkinson's to the point of telling me how impressed he was. Most dr's don't seem to like it when their patient is better informed than they are..
So here's hoping it all run's to plan.
Regards BB.
Hi Bettyblue,
Glad the couple helped you out with your apomorphine injection or as my UK friends say a " jab".
People have thought me and my wife were drunk and had a load on ,when she is in a public location with a freeze.
It seems your surgeon is one of the best in your country .
We are awaiting our New Years Eve midnight festivities as I write from New York City not far from Times Square.with that I shall say Happy New Year ,may 2017 bring us good and better health.
Mike aka PD carepartner NY