DBS should I or should I not??

[MARC1]

I'm sure everyone goes through this question over & over again!! Ten times, or more like 100 times in our heads when trying to make a decision and be happy with the choice made. I went for my assessment for dbs this week in Southmead Hospital,Bristol. I went through the test and just kept on thinking to myself is my condition severe enough to have brain surgery!! Don't get me wrong I've been suffering a lot with on/off times, dyskinesia, fatigue,ridgety and im definitely tremor dominant. My balance is good, my walking is OK but I do shuffle when meds are wearing off,also my mobility is OK. The bottom line is: what if having the operation brings on more problems? I'm thinking balance and gait issues....I'd love to hear about everyone's experiences with dbs and did you manage to solve the issues with going back to hospital and being re-tuned. Tia Marcus

[buzbyc]

Hi Marc. Your thoughts sound uncannily similar to my own. My new neurologist wanted to refer me up to London for DBS assessment when I saw her a couple of weeks ago. I tend to think I'm not that bad, am tremor dominant with not many non-motor symptoms apart from fatigue, on/off and very frustrating biphasic dyskinesia mainly when I'm wearing off which pretty much stops me standing up and moving anywhere.

Same as you, am I going to end up with potentially more but different problems than I have now? I watched a Davis phinney YouTube video yesterday talking to a number of people who had had DBS and pretty much all of them were very positive. After watching that I was thinking perhaps it would be a good thing.

Sorry, no easy answers, just emphathising with your conundrum

Nick

[MARC1 in reply to buzbyc]

Hi NickYes my wife and myself did watch that video. We came away with a somewhat positive outlook to dbs feeling that yes this could work for me But after chatting with the dbs Neurologist I've been left with more doubt than before I went in!. Thanks for your post.

Regards Marcus

[buzbyc in reply to MARC1]

Two additional observations from the video was that I think it was sponsored by the dbs device manafacturer, and also that there were no patients who had had the device more than 3 years.

I'd be interested you hear what the neurologist said that made you feel more negative?

[limcheeese22]

what about dopa pump?

[MARC1 in reply to limcheeese22]

Hi limecheese. I must admit I've not looked in to this, maybe I should but my bodies not great coping with the medication. Thanks for your suggestion. I wish you well.

[LagLag37 in reply to limcheeese22]

My neurologist recommended the pump about a year ago and I declined it at the time but a guy at the gym was having horrible dyskinesia and he went on the pump and is doing great. His dyskinesia went down to nothing within a week. There’s a new pump coming out soon, maybe this year that is more like the diabetic pump. I’m not sure what it’s called. 🥊

[spyridoula in reply to LagLag37]

i had a duodopa pamp 4 years ago Not helpful at all Iwas feelling so bad Was workng fo a couple of hours AND then nothing Icouldn t move Thety were telling mev more and more but i was feeling so bad and i had a smell all the time

I had it for 4 months before removing it The worst experience of my life And it caused me a bad scoliosis in my spine

[LagLag37 in reply to spyridoula]

I’m sorry to hear the experience (nightmare ) you went through. Take care and keep fighting. One of the things so frustrating about PD is everyone is so different no matter if it’s symptoms and/or remedies.

🥊🙏

[jeffmayer]

I am waiting to see the neuro on Tues it's like waiting to be shot or do I go on as I am or let someone drill holes in my brain?

[MARC1 in reply to jeffmayer]

Exactly Jeff!!! What's the best of both evils. I wish I was more definite about my decision. As the saying goes" I need it like a hole in the head"🤔. Good luck for Tuesday Jeff. , Hope you come to the right decision.

[jeffmayer in reply to MARC1]

Thing is I've had it 10 years I work hard trying to bepositive and enjoy life although I struggle to walk.i do cycle ,6 days a week I have started to wonder if I will be worse off at the moment if I feel like shit I can go for a rife

[mach262 in reply to jeffmayer]

Hi Jeff et al, I go this morning to Oxford but I have fewer symptoms that are unresponsive to drugs. Trying apomorphine first, then DBS. Niggling doubt over whether MRIfus is safer and better than DBS but only really available in Switzerland, good luck!

[Ramuu]

Hi Marc1, For tremor dominant PD , which I am also suffering . I have been recomended to go for HIGH FREQUENCY MRI GUIDED ULTRASOUND. it is 100 % effective . It is non-invasive technique, the result can be see on the table itself . THERE IS NO BATTERY, DRILLING OF THE SKULL , WIRE . IN INDIA THE PROCEDURE COST ABOUT RS 25,00,000/- EQUIVALENT OF PDS : 24300. YOU CAN GO TRHU THSI VIEDO WHICH IS LIVE DEMO : youtube.com/watch?v=o9V2s_z...(Not working as expected?)

youtube.com/watch?v=szeBlQl...(Not working as expected?) , facebook.com/ami.shachar/vi...,

[MARC1 in reply to Ramuu]

Hi Ramuu

Thankyou for your videos. This is something that interests me, because as you've said it's none invasive. I'm not sure ultrasound is available for PWP on the NHS in Englnd at this time. I will definitely dig deeper into this procedure.

Kind regards Marcus

[mach262 in reply to MARC1]

Marcus, only available on the NHS to essential tremor patients not Parkinsons. It's FDA approved for most countries, Switzerland beeing the world leader

[Racerk]

Have u try vibration glove yet? Search youtube on pdbuzzboard, Pat Riddle and life with parkinson. Is not that difficult to make the glove and most of us do benefit from using it.

[MARC1 in reply to Racerk]

Hi RacerkThis is probably going to sound stupid!! but does the glove only help with a tremor ? What about ridgety, fatigue or shuffle?

Thanks for the reply

Regards Marcus

[Racerk in reply to MARC1]

Am yopd w/o tremor, I do sleep better, have better balance, better bowel movement and have more energy. So far, it doesn't help much on my gait issue, but I only used it for 7 weeks, still early to tell.

[Tunasalad in reply to Racerk]

Hi Racerk, Is it REALLY possible to make the gloves, even if you don’t have a mechanical bone in your body? No, seriously, I am a lady, could I make them? How would I even begin to try? Thanks!

[cgreg in reply to Tunasalad]

Hello. There are a number of ways towards the DIY gloves. The easiest approach is to buy a pair of readily-available gloves for gaming and use an iPhone to operate them. Please read the following discussion on this thread and DanTeoh will be able to provide guidance on how to proceed. healthunlocked.com/cure-par...

[Tunasalad in reply to cgreg]

Hi cgreg, So I buy a pair of gaming gloves from like a Best Buy store and then how do I use my iPhone to operate them? See I am worse than you thought, huh? But I am determined to do this, please help me on this? Is what I said right? Thanks SO much for this help cgreg!

[cgreg in reply to Tunasalad]

Hi Tunasalad. The procedure is explained in detail on the other topic discussion. Please reply to DanTeoh on this thread: healthunlocked.com/cure-par.... DanTeoh is the one who developed this technique and is kind enough to explain to anyone how to do it properly. Good luck!

[Tunasalad in reply to cgreg]

Thank you, I reached out to Dan, fingers crossed 🤞

[Racerk in reply to Tunasalad]

Look up pdbuzzboard on YouTube, do you have any friend can help you build one? Anyone w basic mechanical skill should able to do it.

[Tunasalad in reply to Racerk]

Thank you, I will check that out! Thank You!

[healthabc]

with MRI guided ultrasound, I believe that its approved here in the US for 1 side only. Look into it more if you want both sides of the body addressed.

[MARC1 in reply to healthabc]

Hi HealthabcThat's what I thought. Maybe I only need one side done. Fingers crossed.

Regards Marcus

[LagLag37 in reply to healthabc]

Also, I don’t believe you can have DBS if you’ve had MRI guided ultrasound. 🥊

[Alphasyn]

I think the real question is: 'Have I tried everything to avoid it?' At the end of the day DBS seems to me to be the end phase of PD-treatment. If it works for a few extra years of well-being than that's great, if it doesn't, well as everybody knows, there is no way back. In any case there is a lot of positive publicity going on with PwP being very enthusiastic. On the other hand, do we see anything of those PwP for which it didn't work? Anyway, all the best whatever the choice is going to be.

[pdpatient in reply to Alphasyn]

Continuing with your thought process, I am also wondering what happens when and if DBS stops working? In the extremely unlikely possibility that DBS stops working towards the end, it does appear that long term DBS use erodes the ability for the body to respond and Levodopa. That is truly frightening.

[limcheeese22 in reply to Alphasyn]

it's is reversable, but need to undergo surgical procedure to take out. i believe this is one of the advantages over ultrasound

[gingerj]

Hi MarcLike you I've had my assessments for DBS. I'm now waiting for the hospital to contact me for the next step. I'm attending Salford Royal.

I'm also a bit hesitant given that I am managing to keep working atm, but am taking lots of meds to do so. Dyskinesia is becoming my main problem in addition to dystonia.

Amantadine has helped but its still there.

I'm hoping that DBS will give me more time at work, but if it causes me problems with balance or walking then it could be that it ends my working life.

It's a risk but I'm willing to take the chance.

Are you still working?

One thing that the levadopa challenge test showed me was how bad I am off medication.

This helped me to realise that DBS is the next step for me.

Cheers

John

[limcheeese22 in reply to gingerj]

higher frequency (one of the parameter) tend to worsen my balance and speech fyi

[gingerj in reply to limcheeese22]

Thanks. These seem to be the most experienced side affects of STN DBS. That concerns me.

[MARC1 in reply to gingerj]

Hi gingerj. I've got to say that's my worse nightmare, having to give up work. I'm only p/t but I do enjoy talking to people as im doing my job. I also completed the levadopa test, but was amazed when off my meds that my tremor was no worse and felt pretty good... Perhaps someone could enlighten me why this was the case????

Good luck and wish you well with your Parkinson's journey.

Marcus

[gingerj in reply to MARC1]

How long where you off medication. I took my last one at 7pm. At 5am I was able to shuffle into the shower and get dressed. By 9am I was shaking all over. By 10am i was in a right state. Perhaps you needed to be off meds a bit longer?

[Phusson]

Hi Marc1, I'm scheduled for DBS November 13. My on time is full of Dyskinesia and it's very uncomfortable especially when I'm having a conversation. I'm on year 12 and have been doing very well and my doctor recommended DBS when she noticed my symptoms. I guess it's normal to question it but I trust the staff and of course I have my fears. My surgery is at Lahey Hospital in Burlington Mass. Like everyone else I've read a lot of positive results and only a few negative. I wish you the best!

[LagLag37 in reply to Phusson]

Wish the best for you Phusson! Keep us updated. 🥊🙏

[MARC1 in reply to Phusson]

Hi PhussonI'm 53 and have also been diagnosed for 12 yrs. Like you my dyskinesia seems to get worse around other people! I'm going to give it until after Christmas to make my decision on DBS.

I wish you well with your operation.

Regards Marcus

[Phusson in reply to MARC1]

Thank you. I'll be glad when it's over !

[RonB1]

There is a DBS support group in the USA to address these concerns.

[pdpatient]

One patient's experience with DBS.

davisphinneyfoundation.org/...

[jeeves19]

Marc. I think if you didn’t notice much difference with the Levadopa test then it’s worth thinking twice about. I had dbs about 3 months ago at Bristol. Good people and good results eventually. Feel free to message me privately?

[Kitefli]

Check out this guide: amazon.com/Patient-Guide-De...