So gang. 3 months following DBS. I had it done because my dystonia was getting so bad and the reliability of the meds was open to question. I might thrive on a particular dose of Madopar and then the next day would be stuck whilst on a walk after having taken the same. It was very hard to plan anything.
The month following the actual operation was a drag. Switch on was impressive in that my dystonia disappeared completely, my bradykinesia mostly went too. Things that I can do now which formerly I needed assistance with: getting out of the bath, take my dog for a long walk, dress myself, turn over in bed, get out of bed ( in fact I really look forward to going to bed now, which was the opposite of what I experienced before). Life changing stuff my friends.
Downsides: voice went weak. This one hard to tease out as I definitely had some voice issues beforehand (but was this the operation that caused this?). Up until yesterday I spoke much quieter and also had some minor imbalance issues. Yesterday was the first reprogramming session. I felt that it went very well: the Medtronic rep has set up 4 different programs and I’m going to try each for 7days, assessing each one in turn noting vocal enhancements or handicap. You can’t get fairer than that eh?
My wife and I are planning travel options for next summer and I’m in the gym every single day, hoping that this will protect the longevity of the unit. A hard road at times, but definitely worth it. For those in the U.K. considering FUS v DBS: FUS sounds good but costs £25000 for each side if I understand that correctly. DBS, available on the NHS. What’s not to like?
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jeeves19
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Oh my goodness. So happy for you. You and your wife must have experienced tears of joy.
If voice continues to be an issue, perhaps a few sessions of voice therapy to retrain your brain.
I've attended a few PD presentations in the last few months and for PD they state - take your Meds and Exercise in any way you can. The key is Exercise.
Congratulations! I’m happy to hear you are doing so well. I am not ready for DBS yet, but I am fearful when that time comes. Your experience gives me some hope. Enjoy every minute!
Excellent news, so pleased to hear it’s going well and you have a new lease of life! Sounds like some speech therapy might be a help. It must feel wonderful to do the ‘normal’ things again that were difficult turning in bed is an issue my husband has amongst many others!
Enjoy planning your holidays and sorting out programming. Onwards and upwards!
Thank you sooooo much for yr informative post. Really good to hear how u r going and that it has been so successful! Please keep sharing yr journey as it’s very helpful.
Great to hear your update! So pleased so many things have improved for you. Im just waiting for an appointment for my initial assessment. Its so good to hear your news!
I must admit I didn’t know that there were any! Well done for finding them. I remember writing to some guy in London once but as with many situations, he ignored me! Let’s just hope that they don’t ask for 25k pet hemisphere. Actually, that’s quite funny. We could base a currency on cost per area of your brain. 😂
That's great news and I'm very happy for you! Also I needed to hear this as I've been getting a little nervous with my surgery coming up Monday. Thank you and continue with more positive results.
In our experience voice and falling issues can be over medicated or settings too high on your device. My husband has always had to switch himself off if we are going out somewhere. It helps him walk better. His DBS nurses have never understood this.
It is so good to see you are doing so well. You seemed a bit despondent at first. 30 years with PD and DBS 18 years we still go abroad 4 times a year.
Good for you Jeanie. 4 times: blimey! It’s funny though: the reasonance of my voice is improving but I’ve noticed that I talk very quickly. I feel that my voice is running away with me. There’s always something that wracks me off.
We stay in a friends villa but my husband would love to go on a cruise. Tenerife in January is amazing. Getting away from winter. Southern Tenerife became popular with Northern Europeans with Arthritis and Rheumatism in winter because it is dry and arid. It is lively too. It's their main season. We go to the Algarve in summer to our friends place in June for my birthday and September for my husband's. Much cheaper than a cruise. Special Assistance at the airport is great.
@JeanieBeanie, I am curious about the experience that you had with overmedication and voice issues. I appear to have the issues with my overmedication of Sinemet as well. I speak too rapidly but even if I reduce the dosage to the bare minimum, it barely gets any better Is your experience similar?
Tremors are my most problematic issue as well and I don't know if it's related. I lost my ability to speak normally years ago and I am wondering if I will ever get the normal speech back
Let's hope that the doctors are able to program around it and be sure to ask them to get to it right away. My MDS is telling me that DBS is going to be my solution to the speech problem. So maybe you have been lucky after 👍👍
Thanks for sharing your positive DBS experience. I have completed my 1-yr anniversary since DBS (both sides). "Activation" was an amazing experience. Before DBS I had dyskinesia and tremors on my left side. On "Activation day" we went out to eat and food the tasted so good! After 1 yr of programming, no more dyskinesia and the tremor on my left side is controllable, although tremors had started in my right arm. I do not know if my right arm tremors is a natural progression of the disease or a result of DBS? Over time, electrical impedance at the electrodes increase as brain cells in adapt to the "zone of electrical current" these cells are constantly being exposed to. When my neurologist turned off the stimulator during programming, my left arm went "crazy" with uncontrollable tremors. It was very uncomfortable, as muscles were very tense and I could not relax them. My fear is if my stimulator got into the wrong hands or an electromagnetic pulse occurred, I'd be toast! alance and excessive sweating are my only issues after DBS. So far...I still believe it is worth it.
Thanks Dean. I think there’s little doubt that the tremor dominants DO have the best results. That’s not to say that others don’t benefit but fi you, it’s a great piece of kit!
Thanks for writing this update on your experience with DBS. This really helps all of us decide our next moves. Much appreciated! Wishing you health and happiness.
Really encourging to hear the improvements you’re finding, particularly since your reprogramming session. Also very helpful for those of deciding whether or more likely when to go down the same route of treatment.
Great news Jeeves. I'm glad you've had a positive visit with the programmer. Do you get to change the programs yourself?Did they explain the difference with each program?
I hope you find one that gives you maximum benefit.
That is really good news and I can't believe three months went by so fast.
The reason some people are not comfortable with DBS is that it is reportedly irreversible in some manner, and it prevents using FUS in the future... And there may be a few other reasons like they can't be removed or something like that. You'd know better of course until maybe you can set that record straight or just be a reminder of what is the current state of that. And if for somebody it doesn't work for everybody or there are serious complications, those are reasons not to love it. And, thank goodness and the inventors and doctors and it all worked out, still working out so very very well, but it was entirely possible that your outcome could have been significantly, perhaps seriously, worse. Easy and very relieving of course to be able to say it now that it's great so what's not to like, but well it's not a no-brainer by any stretch. But ask anybody who had a problem that they could not reverse and address otherwise... Yes maybe a no-brainer when your condition was as bad as yours, can't get much worse (well of course it could, but you know what I mean).
Thanks Marion. I think you have to do your homework, trust in the professionalism of the clinicians etc and just accept that once the progression has got too bad then there's really no choice left? I'd like to have gone down the FUS route but i just cant believe that people can amass that amount of money unless youre a self obsessed businessman. Lot of money for a little old History Teacher that! FUS has drawbacks too: it cant be finely tuned/amended.
Finely tuned, didn't know that and for certain that would be extremely valuable and important.
History teacher huh? You know maybe you'd like to read a fun little novel, and compare it to what eventually has turned out in real History in your own case... It's an about 50-year-old novel called Terminal Man. You would recognize the author for many brilliant works, the guy was a physician.
I had DBS 4 weeks ago and its been a challenge because the surgeon said i was one of his easiest but when they put me to bed i fell on the floor. I was able to get up after about 5 tries.They sent me to rehad and 2 weeks later sent home. They said I have air in my brain around the area where the connection is. With rehab coming in twice a week all the workers say (including doctors), that It will take time but I'll get there.
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