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DBS

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bettyblue

I can concur with what Branwell has said DBS can be beneficial to pd or essential Tremor or dystonia sufferers it can actually make you feel like you've not got your condition anymore.

It was lovely to meet up with Branwell as she said and with a bit of collusion we might manage to do the same thing again.

What I would say to anyone considering DBS is go into this very carefully ask all the questions you want to ask and research as much as you can be after all we're talking major brain surgery not on minor op. Good luck to anyone considering this option.

BB XX

PD carepartner NYC

I have seen many patients here in New York City which has many Parkinson's "centers' of excellence hospitals", benefit from DBS  during the last 17 years ,however it is not a cure  but relief of symptoms and the diminuation of brain cells continues , my wife who has PD for 20 years is not a candidate  for DBS as she suffers no excessive movement nor dystonia.

I once was more hopeful for treatment that effects a real cure in my own lifetime ,but now feeling little hope. My wife is so very sick  from PD but not even a bit depressed from it and lives truly in the moment.

Our PD physician said to us a "good news bad news" situation some 17 years ago.

"The bad news is that it is Parkinson's ,the good news is that it is Parkinson's" this meant  that of all the  brain diseases PD was the better of the lot and will in time have a cure.

I pray for better treatment and less fear for all of us.

Mike from NY

P.S.

I am also a past moderator of PD caregiver's support groups and wonder why Drs & Staff and drug designers never seek our input ,

 

 

Pebble

Before I go any further with my post please forgive any typos etc. My tremor has taken over my life. This is the main reasons for going down the DBS route.

The subject was first mentioned by my consultant 2 years ago at one of my regular appointments.  We discussed the pros and cons (I had already been researching) and my consultant pointed out that DBS was rarely if at all, carried out on patients over 70.  I was 69 at this time.  However the decision was that he would refer me to the next level, an appointment with Professor Grosset.

After some months (during which time I had my 70th birthday) my appointment letter arrived.  Professor Grosset explained in detail how the procedure was carried out and the benefits that could be obtained. He also mentioned my age but I think the sight of me on my knees begging was too much for him and he agreed to refer me on to Mr Burns the eminent Neurosurgeon.

Once again I was put on ‘hold’ but eventually my appointment came through.  By this time I was now 71! Mr Burns explained that before any decisions could be made a series of tests were necessary to determine whether I would be a suitable candidate for the op.  Promising start thought I, no mention of my age.  We had a lengthy discussion about my expectations, my life style, shoe size etc I was beginning to feel hopeful when he said that the first assessment would be an MRI under anaesthetic because ‘as you know the brain deteriorates with age’.  Teach me to feel complacent.  Anyway he agreed to put me forward for the MRI and it would be the result of this that would determine whether I would go any further.

Once again several months went by when out of the blue came an appointment for the next assessment in the series (5 in all).  How the months do fly as at this point I am 72.  I can now say though that all assessments have been done, the last of which was a couple of weeks ago, a 3 hour session with a neuropsychologist, and I am awaiting the final decision from Mr Burns as to whether he will do the op.

I am hoping with every spilt cup of tea/glass of wine/G&T that the answer will be yes but terrified in case it is!

 

 

 

 

PD carepartner NYC

Good wishes Pebble,

I don't think Neuro surgeons in the States have any age cut off rules when evaluating PD patients for DBS. The criteria may be  one is   unable hold  a glass of water and drink from it ,or not being able to brush teeth andas well  suffer dystonia along with cramping and twisting of  toes .etc.

I might add that 17 years ago I knew several patients that had DBS  back then each surgery was on one side of the brain and months apart the other side was performed ,really quite primitive.

We also attended lectures at hospital  by an American surgeon who was one of the founders of DBS surgery, Today the surgery can almost be said to be routine and much better in gaining positive results for both patient and Doctor, I say this  to you as should you become a candidate for DBS not to fear.

In our hospital based PD support groups DBS has been positive though not for my wife as a possible  DBS candidate because she has no tremor nor dystonia. The immense relief of the shaking and enormous pain from over active extremities  for those who have benefited from DBS was worth it  for each  and every patient in our group.

May you have much luck and I hope you are to be a DBS helped patient ,for me writing from a city that has 9 hospitals that do DBS ,I find the  long wait times you mention between testing and selection a bit sad.

Mike

 

gus

Bristol south mead have no age limit there was a nun 80 yrs old having dbs

cruisecontroller

Having moved from Cambridgeshire to Devon at the beginning of the year my particulars were transferred from Addenbrookes to Southmead Hospital, Bristol(this being my nearest centre).  I had my DBS fitted in September 2013 and was told that the battery would last five years, I have a St. Jude system.  Because other peoples batteries were running out at three and a half years I was asked to check my battery every month, I  check it every two weeks with the remote control I was given.  Just under two weeks ago i received an info letter from Bristol saying that they had a meeting to say that they were referring me back to Addenbrookes because they only do the Medtronic and Boston Scientific sytems there.  In other words they don't want to deal with my battery when it expires and so I will be sent back to Cambridge to have this done.  I have contacted my former consultant there to ask if he can fit a battery of the Medtronic or Boston type so that in another five years when it comes up for renewal Bristol will be able to deal with it.  The journey round trip to Bristol is 4 hours whereas to Cambridge is 12 hours, had considered Oxford but it is not much difference to go to Cambridge !!

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