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DBS

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Martinfish
DBS

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.

Eck

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

 

 

 

Selfbuilder

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

PD carepartner NYC

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.

 

 

 

mally

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

 

PD carepartner NYC

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

mally

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

PD carepartner NYC

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

bettyblue

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.

bettyblue

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

Selfbuilder

Who are you seeing in London BettyBlue? 

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