Gradually moving towards to DBS


#21

Hi Tractorman

I had DBS surgery in October and unlike betty blue and others I have not had the excellent, immediate results they have experienced.   Although, off meds , I can see there have been some improvements once my meds have kicked in my mobility and length of on time is far worse than pre-op.

My consultant has assured me that it can take up to 18 months to adjust the DBS system to the most appropriate levels but I don't feel this point was made clearly enough before I had the surgery. Consequently I feel disappointed that having tolerated the surgery I am feeling no benefit from it as yet.

I'm not trying to put you off having the op, just be aware that it isn't always an instant fix, don't have unrealistic expectations or think it's going to be an overnight miracle. I know that other people have had more spectacular results than me and I do still live in hope that my situation will improve over the coming months. I just think if hadn't expected so much I wouldn't have come down to earth with such a bump!

Best of luck and  I hope you have the best possible outcome for you.

mrtoad


#22

Hi mrtoad,

I have to say that from the start of looking into the DBS process all of the Professionals involved have all said about its potential to do great things, but counter balanced those great things with the realities of little or no improvement and even removal of the hardware if it calls for it! 

Right back at the very start my PD nurse made it very clear it is only a symptoms management tool not a cure! As a human being yes I will be disappointed if it doesn't yield at least some benefits, but thanks to wise words like yours and the Pro's I'm going forward with both eyes open so to speak. Thus if it isn't the wished for outcome I hope  I can land with a bump rather than a full on splat! Who can tell?

PD really does test the patience with just about everything! I'm certain I won't be alone hoping that DBS will come good for you.

How soon after the operations to "install" the hardware did they switch you on?

Regards, tractorman.

 

 


#23

Hi BB, 

Many thanks for message.

Can I ask you how soon after the installation of the hardware did they switch you on?

Thanks again & best wishes,

tractorman.xx.

 

 

 


#24

Hi

My wife had DBS surgery last May operation Tuesday, switched on Wednesday, home Thursday. you haven't to be in a hurry to find the correct settings now on have the amount of tablets.


#25

I was switched on 2 days after battery was fitted as my op was preformed over two stints. Simply not enough time to do in one op.

My Distonia  had kicked in as i had to allow and was corrected within 2 seconds xx


#26

Hello TM BB ML GT, I have never considered the future as to be honest a bit scared due to 2nd hand stories that always seemed to bad. Amazing how eager some people are willing to tell you the worst of something they don't have.

The forum and this thread have helped me give the future consideration and glad I have done so as it has not took over my life as it was not the unknown after reading here. I don' live for it but more prepared for it so thanks for your posts they have really helped by reading your experiences on your journeys.

JP


#27

Hi,

Many thanks for the replies. When the time comes, the switch on for me will be 6 weeks after installation. My understanding is that this is to allow the brain time to recover after being "invaded".

TM.

 


#28

Good luck tractor man xx


#29

Hi All,

A little update on my progress towards DBS.

Had a day at the JRH in Oxford yesterday, had the MRI head scan whilst under general anaesthetic, SORTED! No dyskinesia induced fidgeting this time. In fact I didn't even see or hear the scanner! Got a routine pre-op check later this month. Then all things being equal the "main event" should be within 3 months of that.

I must say that all of the staff we've encountered at the JRH are marvellous, straight talking, caring, good humoured and everything else you need in these circumstances.

Best regards to you all,

Tractorman.


#30

Good to hear this TM i was there myself on Fri June 2nd re trial post DBS op that I volunteered to do had to be switched off but I knew that anyway as that is the only way for a proper assessment see it in the raw was not impressed to hear my PD is already classed as advanced but in my heart of hearts knew that myself. However me and my old man ( I call my DBS system that ) are very much in love as it is bloody brilliant I hope for you a result such as mine. If you want to talk about this or just compare experiences let me know and I will PM you my mobile number.

Otherwise Good luck and best wishes to you,

BB xx


#31

Hi BB,

Many thanks for the message and very kind offer, greatly appreciated.

Was the STN the target for your DBS?

TM.xx.


#32

Yes it was the symptoms targeted for me was tremor and painful stiff joints and Distonia.

 

Best decision i ever made (i know it does not always work like this for all) that is the chance we take. No tremor or painful stiff joints now. And best of all not one Distonia attack whatsoever, whoop whoop Parkinson's  picked on wrong woman.

 

best wishes BB x


#33

Hi All another DBS update,

Routine Pre op assessment completed, I now have a date for the op, it'll be just under 3 weeks time.....

Regards,

TM.


#34

Very best of luck TM let me know how you get on.

BB xx  


#35

Many thanks BB. Very pleased to read how you are getting on with DBS. Loved your comment about Parkinsons picking on the wrong woman! That's the way to tackle PD! I will indeed update as things trundle along. Thanks again.

TM xx.


#36

Please do will be willing it to work for you as well as it has for me lots of love xx


#37

Here we are then, bed availability confirmed, so off to hospital later then if all runs to plan DBS surgery tomorrow using Boston Scientific current steering electrodes I think they're called.

To borrow the posting style of jules77 and Johnny P, "OK "men" I'm going in, under cover, deep under cover, behind enemy lines".

Regards to you all, thanks for the messages, I'll update on my return.

Tractorman.


#38

Thinking off you mate you're system is the same model as mine xx


#39

Well  what can I say, In on Wednesday evening, both parts done , on both sides, done in one one sitting yesterday, and back home this evening. They are telling me they've got the electrodes positioned just where they wanted them.

Its now sit back and wait for the big switch on in approx 6 weeks.

Thanks BB.

Regards, Tractorman.

 


#40

Hi Tractorman, hope you have a very speedy recovery.

BTW, do you have a son whose first name begins with M, is at uni and works for Waitrose?

If so, then it is a very small world!