Hi my OH had DBS about 3 years ago and is on level 3.75 on both sides and has been on this level for at least 2 years. The consultant set it at this level and we are unable to increase it ourselves but the consultant is reluctant to do it either, but he is still finding walking difficult and falls occasionally. Are any other DBS people on a higher level than this ?? How high can you actually go ??
Hiya, I had DBS 3 years ago also, my settings are 3.5 and 3.0. I too am unable to do any increase myself, not sure what max is but still on meds and still have OFF periods, where tremor and anxiety is bad.
Hello LittleMixWorry, my OH is still on his meds as well, and has usual off periods where he struggles to walk. Thankfully he has not suffered with tremors so far. But I’m struggling to see what benefit the op has actually had for him. The consultant wanted him to cut down on his meds but there’s no way he can cope without them. He is only on 1 Rasagiline and 5 sinemet a day as the consultant wants to save extra meds for when hes older , he’s 72 now so when is “older” ???
At 68 i’m on settings 4.6 and 5.0 and am on my third battery which is rechargeable. My medication is Madopar 5 x 250mg and I have a Dystonic Tremor of which the consultant was told about BEFORE the operation but they know best and did nothing about it. So my DBS only controls the Parky tremor, it could have covered both if they had listened !!
Hello cruisecrontroller. Thank you for letting us know you can go higher, were you able to do this yourself or was it down to your consultant ? It’s shocking that they did not listen to your concerns, it must be very frustrating for you to know they could have done more. How long ago did you have the DBS surgery ? How do you know when your battery needs replacing ?
Hi @Molly_May, My system is St. Jude, my first battery was fitted in 2013 at Addenbrookes, Cambridge. I was told it would be three weeks before they did the settings but my operation went so well that the next day when I woke up my consultant was tapping away on his lap top and putting the settings in. I was told that the battery would last five years and they would give me room to move the settings up or down two settings. The controller was battery operated and was easy to use and i’m sure that the DBS would have lasted more than the five years they said but they had me back in for a change at the four and a half year mark.
My next DBS was controlled by an i-pod which was a pain as I had to charge it every other week, again the consultant set up the device and it was another St Jude. This time it only lasted three and a half years, the i-pod beeped off one day with a message to say that I needed to contact my consultant as my DBS was getting towards the end of it’s life. I had this changed at Southmead Hospital at Bristol. My current DBS is rechargeable and because it is an unknown, they do last a minimum of ten years at the moment. Had it been a Boston Scientific it would have been twenty years !! This time a representative from St Jude was present and put the settings in, I am able to adjust these again by two settings. The controller is like the the first one and i’m happier with it.
Hi Les My O/H has the Boston Scientific so hopefully will be ok for a few more years then. I hope you get a few years to go before you will need to replace again. Are you glad you had it done ? My O/H had brain inflammation after and that was a nightmare for a couple of weeks and we all regretted him having it then. But thankfully after i insisted on them seeing him again it was sorted very quickly with steroids. Just need to sort out his walking now. Could they go back in
( if you was up for it !! ). And adjust the implant thing ? To cover your Dystonic tremor ?
Hi, It would be fair to say that i’m glad I had it done otherwise I would still have been wobbling like a jelly !! LOL My wife couldn’t believe the difference it made to me even if when I came home from the initial operation looking like something from the tomb of the mummy !! They could go back in but on reflection it was scary enough the first time around, we would have to see if anything could be done before taking that step !! Being under Bristol I/we feel we can talk to them anytime about any concerns, they seem well organised and efficient in their responses. Time as they say is a great healer, stay safe and take good care of yourself and the other half.
I had medtronic fitted 10yrs ago, I also had two 5yr batteries each one lasted 3yr mark as I was on higher voltage I’ve got a 15yr rechargeable my segrttings are now 2.90 & 0.90 my walking got reallybe bad as my off time worsened but Dr Alan whone Bristol southmead & team waved there wand changed my meds introduced Azilect & entacapone to give me more on time they have set my scope 3.0 volt which is the max then my off time started to get worse again but my local parkinsons nurse said try amantadine which is a add on as well which really worked. So there might be some medication you could try and if you developed dyskinesa you could adjust settings down don’t know if any of this helps but never been great at text messages
Hi Gus. Thanks for replying. My O/H was put on Azilect as soon as he was diagnosed and later sinemet, which hasn’t changed over the last 10 years. we haven’t seen his PD nurse since before the pandemic. His consultant seems reluctant to change his meds. Are you now taking Azilect with entacapone and amantadine ? Are you on sinemet as well ?. Do you think it was the Amantadine that improved your walking ?. Sorry for all the questions
Yeah I was exactly the same I was taken sinemet and then they introduced Azilect, then entacapone and I was OK for a while then started to develop but dyskinesa again with really good on time so lowed my dbs and my walking got worse so my local pd nurse said try amantadine this worked very well for me at moment 8am Azilect, amantadine, entacapone, and 125mg with 62.5mg 10am Amantadine/2 tablets .5mg 12pm 125mg 2pm 62.5mg 4pm 125mg 6pm 62.5mg 8pm 125mg All the 125mg with Entacapone apart bed time slow release sinemet 125mg. But yes the Amantadine was a game changer .
Hi Gus its good that its working for you :-). Most of the stories ive read nearly all off them are on more than 1 med, when we have asked his consultant if something can be added she says save it for later ?? I have just booked a phone call with a PD nurse for tomorrow and will ask her if she can add Amantadine to his meds and refer him to a movement disorder clinic. Thankfully he is still not to bad, just the walking and occasional falls. I think we might need to be more assertive when we see his consultant maybe….
They say save meds for later but you want to be at your best now, while you still can and enjoy most of your life before pd gets a real grab of you.Hopefully your get somewhere all the best to you & husband
Hi Gus. My thoughts exactly, at 72 there’s still so much he wants to do but cant. I don’t think he will want to do them at 92 !! Take care , wish you all the best too…
Hi I have been reading all the comments regarding DBS and found it very interesting my question is how old is too old to have DBS,? my husband is coming up to 78 in Feb and he has a resting tremor he was told by his Consultant 2 years ago he was too old.He would love to be able again to write ,hold a cup of tea and drive again, he gets very down when he is restricted with the things he now cannot do.
Hi Jenny 1, perhaps think about asking for a second opinion from another consultant, if only to put your mind at rest, otherwise you will always wonder if things could have been different. Should age come into it if it could potentially improve your life ?.
Hi Molly May Thank you we have aTelephone consultation coming up with another Consultant at a different hospital I will ask.
Hi Jenny 1, hope you get good news…
Hi Molly-May just a quick update the PD nurse got back to me regarding age on DBS it was not explained properly by the Consultant it was to do with his heart failure and COPD that was the problem,I feel there is a correct way to tell someone the situation with his health not putting it down to his age and upsetting him and me
Hi Jenny 1. It’s a shame they left you wondering instead of being straightforward with you. It’s the least we deserve ! I hope you will be able to find something that will help, have you researched what medication is good for the resting tremor ?