DBS for non tremor

[jeeves19]

Hi all. An acquaintance of mine who has the wonderful disease was told by their PD nurse that DBS wasn’t really an option as he had no tremor. I’m a little surprised at this remark and wondered what the community thinks about this. Thanks and best wishes 😊

[pvw2]

My brother had DBS with no tremor.

[jeeves19 in reply to pvw2]

Did it help him?

[pvw2 in reply to jeeves19]

yes, significant reduction in meds.

[Parkiewife]

My husband has pd without tremor. He had DBS placement 16 years ago! Still going strong! PD nurse is not a neurologist nor movement disorder specialist. Check with doctor, there may be underlining reason for person not to have DBS?

[jeeves19 in reply to Parkiewife]

Much appreciated 😊

[paulalex1313]

My wife is due to have DBS in early April. She only has a tremor in her leg when she is ‘off’ and even then only sometimes. This tremor is not the recognisable Parkinson’s tremor. The head of DBS surgery at Queen Sq. is sure they can improve her quality of life, including dealing with intense leg and tummy cramp. We have faith in their expertise and we look forward to better times after the op.

[jeeves19 in reply to paulalex1313]

Cheers. Hope it goes well 👍

[paulalex1313 in reply to jeeves19]

Thank you very much. I’ll try to report back here when we know how effective DBS has been.

[jeeves19 in reply to paulalex1313]

Please do. Especially as you’re UK based.

[Hidden in reply to paulalex1313]

Did your Drs make you aware of the side effect of personality change? Rare, but happened to my husband and we weren’t warned. Took 18 months of hell before he became himself. DBS did work for movement though and in the long run was a good idea. Just be prepared

[Aleagles]

Hi I have had dbs. My understanding is there are four focus points on each electrode. During operation they set to match requirements the best results tend to come from reducing tremor. The others focus points are balance, stiffness and voice speech. Knowing this might help to you figure out what is happening?

Best

Alex

[JHLambert in reply to Aleagles]

Are yours the self programming type? They have those now. Go to pubmed.gov and search for aDBS...

[Parkie-]

This seems to suggest that DBS actually works better for akinetic rigid pd...:

ncbi.nlm.nih.gov/pmc/articl...

Parkinson’s Disease Motor Subtypes Show Different Responses to Long-Term Subthalamic Nucleus Stimulation

"Results: After 4.9 years, STN DBS produced significant improvement in the UPDRS III total scores and subscores of tremor, rigidity, and bradykinesia in the “Off” medication state in the ART (akinetic rigid type) group, less improvement in the MT (mixed type) group, and the least improvement in the TDT (tremor dominant type) group."

[jeeves19 in reply to Parkie-]

Thanks for responding 😊

[Hidden]

My husband had no tremor but had DBS for rigidity. Really helped but his personality changed for 18 months. Ten years later he is still walking - though having more falls now.

[jeeves19 in reply to Hidden]

Thanks

[Parkie- in reply to Hidden]

Can I ask what personality changes he had? Thank you

[Hidden in reply to Parkie-]

My husband was easy going, patient, compromising, kind and we had a very happy marriage. He became the complete opposite after DBS - impatient, impulsive, stubborn but worst of all he became cold and rejected me. The details are very painful It was like living with a stranger. Nothing I said or did could reach him. Also he went to auctions bought things we didn’t need,didn’t even bother opening the boxes. At one stage we owned 3 cars. Our marriage was severely tested and it was only because he had been such a wonderful husband prior to the hell that. happened after DBS that I managed to carry on. Even when my friends could see the effect on me and begged me to leave him. I ended up being diagnosed with PTSD - and I’m a very strong and resilient person. The worst thing was the neuro refusing to talk to me about it, hiding behind the ‘Privacy Act’. A coward who only wanted to make money from the ops and, as I found out later from other former patients, lost interest in the follow up, especially if there were problems. Never were we warned about the possibility of personality change following DBS.

[Parkie- in reply to Hidden]

That must have been terrible. He is very lucky to have you.

[glenandgerry in reply to Hidden]

How absolutely awful for you.

[JHLambert]

She’s correct. DBS (got 2 of them now) is primarily for tremors of the appendages. To say it won’t affect other symptoms is incorrect too. But, he will need to have the correct diagnosis to get his insurance to kick in...