DBS. The story continues


#1

I had DBS installed in March 2015.  So far it has been a disappointment.  A few weeks ago, I did some experimentation and switched it off for a day and felt no different.  Then, over a few days, I gradually increased the voltages on either side.  Again, I felt nothing.

I have an appointment next week to be reprogrammed.  I shall report what happens.

Peter.


#2

Hi Peter,

I am sorry that DBS has been disappointing for you.  I hope the reprogramming has been successful.  I had DBS in January 2015.   For the first 6 months I was pleased as my walking had improved and dyskenesias had decreased, but since September walking is back to the way it was before stimulation and the dyskenesias have increased.  I have been reprogrammed twice.  

Jane


#3

Hi Peter and Jane

I am sorry to hear you have had dissappointing experiences with dbs.. I am on the waiting list at Fazakerly hospital to have this done. Do you think it i just a matter of contnuing to tinker with settings over time or do you think it has all been a waste of effort?

Regards

 


#4

I am told the electrodes are in the correct place - I was asleep when they were installed.  However, the programming is trial and error.  I will keep trying.  There may come a point when I ask for DBS to be removed, but that will not happen for a long time yet.  DBS is a long term affair.

Peter.


#5

hi every one i had dbs 4 yrs now ,i tried to carry on working this is what i had dbs for but sadly this did not happen i every time i went back to work the tremor came back ,so every time i went back to get returned this happen 7 times then we decided to finish work,it took me nearly 15 months to get the dbs & meds right , i think the big difference was when you go back for a overnight stay on your 1yr assessment where they turn off dbs & also take you off meds & start again .also finish ing work was a big thing taking the stress out of your life is a big factor aswell , i was a heating engineer so this job was very demanding , all i would say is hang on in there its not a overnight cure & you will see the difference in good time & all ways keep trying tweaking meds and dbs also do not be afraid to phone dbs team for reprogramming  .good luck all


#6

Hi mrtoad,

i am pleased I had the DBS surgery.  Since having the surgery I no longer freeze and dystonia occurs a lot less. I am disappointed about my walking but I am still optimistic. I just have to be patient which I am not very good at!

Hi gus,

It has helped me a lot knowing that it took nearly 15 months to get the DBS right for you.

 

Jane


#7

Yesterday, I visited the hospital to be reprogrammed.  I took just enough medication to get me to the waiting room at 8.00 am.  I then sat and gradually decayed until my appointment at 9.30am.  I could just about shuffle into the consultation room using a walking stick and door-frames.

After taking lots of notes, the nurse tweaked my programming and we spent about two hours experimenting with different settings.  At 10.30am I took my medication, 125mg Sastravi - the Happy Shopper equivalent of Stalevo.  It took 40 minutes to take effect.

Without medication, there was only so much that could be done.  Stiffness was improved, fidgeting was reduced.  Also, at one point my mood was raised. Very strange, the green door looked greener.  I felt more optimistic.

Once the medication took effect, the nurse improved my walking.

Peter.


#8

Thats great news ,have they tried entacapone to keep your ON ! periods to longer if not maybe its worth a mention ! glad your seeing some improvements gus


#9

Hi Gus,

Stalevo contains levodopa, carbidopa and entacapone.

Peter.

 


#10

never new that cheers, hope you move forward every day peter.


#11

Today is Friday.  I was reprogrammed on Tuesday.  I have slept better the last two nights, I no longer wake up in the middle of the night with pain in my lower back, and I can walk a bit better when unmedicated.  I used to take a tablet in the middle of the night to allow me to get back to sleep.

During the day, my off periods are reduced and I can walk while medication is at a low point.

I feel better.

I think the message is that DBS can be a miracle for some people - you can see videos on YouTube of some fantastic results - however the outcome varies from patient to patient.  Also, programming needs to be tweaked periodically to deal with the progress of PD and the body's reaction to DBS.

By the looks of things, I need to take stock of my condition every three to four months and make an appointment as necessary.

Peter.


#12
glad your starting to benefit from it now .don't give up it will get better and better results try tweaking every day with tablets or dbs settings to get best results

#13

My last programming session has given me an unexpected benefit.  My outlook on life has improved.  I have stopped taking anti-depressants and no longer slouch in my tatty armchair waiting for my next pill to kick in.

I have even bought a nice pair of walking boots and intend to work up to doing 10,000 steps per day.

Peter.


#14

I would have thought that specific exercise/physio would help as walking is a learned skill. Think of the lurching uncertain gait of a toddler as they learn.  Any kind of forced pace activity - Nordic walking, cross trainer or cycling helps regain and/or maintain the automatic apect of walking


#15

So pleased to hear things are improving for you. I'm going for my baseline assessment without medication on 21st March.

Having waited for several months to get to this initial stage it all seems a bit unreal. Reading positive results always helps.

Regards

mrtoad


#16

That's great news, Martini.  Information like this is invaluable and helps me to manage my expectations of DBS. 

Cheers,

Ian


#17

Hi all,
I had DBS in August 2015 and I can say that recovery from the op was not pleasant. After nearly 3 years, seeing the consultant every six months, I was in doubt whether or not the DBS was doing any good. My voice is very slurred and it’s a strain talking. I have a lot of freezing moments, and pain in my ankles, legs, back and neck. The operation sites in my head can be very sore, especially combing my hair. I struggle walking round the shops with a feeling that I’m going to fall and my eyesight is deteriorating.

I had breast screening a few weeks ago and it was so painful where the battery was positioned, I declined after three attempts. I was so frightened the battery or the wires had been damaged I made an appointment with the PD consultant, not the DBS specialist nurse, for the following day. After retrieving the DBS programmer from the nearest hospital, he proceeded, unwittingly, to reset my DBS to manufacture’s settings. I was wiped clean!!
I soon found out what it was like without the DBS. Initially it was quite good with my right hand tremor the only thing that returned. The evening wasn’t too bad, then night time came! Every atom in my body was screaming out. As it was an emergency, I got an appointment with my specialist nurse the next day and she finally switched me back on around 11 am. Whew! What a relief. I realise now that the DBS is a work in progress. It’s trial and error with the settings and the drugs. I just hope they find a cure very soon.
Jackie