Anyone who has Dystonia and is currently in remission

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Permalink Reply by bkaren46 on July 11, 2009 at 1:35pm

Hi to Ramona and All, Do you think the rollercoaster ride was the fact that you just went through surgery so it took along time to recover from the surgery and having the neurostimulators placed? Was it tough dealing with the programming of the neurostimolators? How long did it take for the programming to be right? How much pain relief do you think you got from this procedure?

Thank You
Karen

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Permalink Reply by ramona on July 11, 2009 at 10:15pm

Karen,
I wish I knew what the rollercoaster ride was from. It seems like, in the beginning at least, my brain would become "used to" the neurostimulation quickly and then overcome it to get back to what it thought was its "normal" state - dystonic. I still have to have minor programming changes on a pretty regular basis - I don't think I have gone three months between adjustments at any point. Most of the time it seems like every 1-2 months, still. I didn't start off with pain, so that was not the relief I was looking for. I have developed spasticity recently, which is painful, and apparently difficult to "program" for, so I started taking baclofen for that.

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Permalink Reply by beka on July 13, 2009 at 1:39pm

Hi Lene- I have to somewhat concur with the opposite to what Joe and Ramona say - I still am not sure , since dec 2004 , if DBS was the right decision or not.. As my mother asked me last week " Do I have regrets about undergoing the procedure ".. not really regrets but definitely ambivalence about it...Personally I think that DBS places more restrictions on what you can do and can not do in the environment.. when I got the toxin - Botox and then Myobloc , which really worked nicely for 8 years( same dose every 13 weeks ..) I felt less restricted by having not to have to worry about magnets, antitheft detectors, cell phones, refrigerators, microwave use, electromagentic interference etc...I still dont drive, I still cant ride my bike which I thought I would be able to.. may be I have too high expectations of DBS results..it worked like magic the first 6 months...then the meds came back along with breakthru symptoms...and so it goes...
Any thoughs Joe- Ramona ?? What do you think about patient self-programming ? Should they be allowed to change or reprogram their own settings taking into account brain circuitry, electrical currents and side effects ??? beka

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Permalink Reply by ramona on July 13, 2009 at 5:13pm

I would LOVE to be able to do this, Beka, as I struggle with frequent programming sessions. Even now, the spasticity in my foot seems to be overcoming the new baclofen and the neurostimulation. I do recognize, though, that it could be dangerous for some to do this - and I admit that the temptation for me to make frequent changes would be great! ;-) I want relief NOW, in other words.... Changes take time with dystonia and I am not as patient as I should be.

I will also admit that I struggle with the frustrations of having hardware inside of me - you know the hard times I have had with the interference problems. There are times when I would love to have it yanked out, but then when I end up like I did last Tuesday - in bed and not able to care for myself - I realize that I AM getting relief with the neurostimulation. I really think my dystonia has progressed dramatically over the last couple of years and I suspect there may be a chance that they even missed the diagnosis, as it sure seems degenerative to me... It is because of those times when I am reminded of what things are like without the neurostimulation, that I say I would do it all over again. Pros and cons, pros and cons...

Blessings
Ramona

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Permalink Reply by Joe on July 13, 2009 at 6:40pm

Unfortunately, I believe that self-programming is NOT a good idea. As a matter of fact, I had my bi-annual battery check today and my programmer told me about some new research that indicates that it takes up to 6 months to realize the full outcome of an adjustment for a dystonia patient. We're just not "fast responders" like those who receive the therapy for essential tremor or Parkinson's.

Trust me, I can empathize with the notion of wanting relief...NOW! And there is a temptation to believe that if they just find the right settings, all will be well. This invariably leads to rapid fire setting changes which could inadvertently result in changing from what might be the optimal setting too soon. Sad to say, it doesn't work as quickly for us dystonia folks. That's why I tell people who are having the surgery that they are just beginning their journey and to be prepared to spend a lot of time with their programmer.

Ramona, I, too, was reminded as to how much neurostimulation has helped and is helping me. During the battery check, the programming device cycles the neurostimulator at various impedances. That disrupts the stimulation momentarily...my symptoms returned full force...not a good thing. Also, my programmer mentioned that the rechargeables are ready and that I might be a good candidate. I'll keep y'all posted as I think that might be the option I'll take.

All the best,
Joe

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Permalink Reply by beka on July 15, 2009 at 12:27pm

I have to agree with the your assessment about patients NOT Turning into self programmers. I think it is very risky for a non medical person to be altering their own settings without knowledge about EMI , Rf factors, brain circuitry,neuron functioning..etc. After all , DBS remains experimental for dystonia.

Making me think that Medtronic most likely agrees with this notion too.

beka

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Permalink Reply by Joe on July 11, 2009 at 7:23pm

Hi Karen,

I apologize to you for not getting back to you sooner. I had my first surgery in 2002 and a second surgery in 2003 (if your interested in the details, you can read a couple of articles I wrote for the ST/Dystonia orgnization. They're under my name (Joe Kelley) at the following link (http://spasmodictorticollis.org/info/treatment.cfm?id=6).

To date, I have achieved a consistent 85 to 90% reductions in my symptoms. I am very pleased with the results relative to the trauma of any major surgery. The programming was a difficult process and I visited several centers (one in Miami with a wonderful neurologist by the name of Bruno Gallo who finally optimized my symptoms...mad props to Dr. Gallo for not being afraid to 1) respect the patient's input and 2) being willing to experiment!).

If I had it to do over again, I would in a heartbeat. It's not a cure by any means, but it has allowed me to live a relatively normal life. For that, I am forever grateful.

Hope that helps.

All the best,
Joe

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Permalink Reply by beka on July 15, 2009 at 12:28pm

But, then why over time time are many patients with DBS returning to the use of meds and Botox ? Is it really a step backwards then ??

beka

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Permalink Reply by ramona on July 15, 2009 at 5:02pm

Good question, Beka! Let me know if you ever get an answer, OK? I suspect it has to do with quite a few things, including progression of the illness (although to date dystonia is not classified as degenerative), the brain's ability to overcome the neurostimulation and return to its "normal" state, miniscule movement of the electrodes, possibly some "rejection" issues of our bodies that the docs are not aware of, ya da, ya da, ya da. Honestly, I am not sure how well Stalevo helps me at this point, as I have not tried going off it in a long time. The effectiveness of the baclofen is not nearly what it was just a couple of weeks ago, too... Perhaps it also has to do with the type of dystonia?

Anyway, it becomes a matter of learning to cope on a daily basis, doesn't it? I just found out that I have developed a bone spur on my foot because of the curling and stress on my joints...fun!

Let me know if you find any answers!

Blessings
Ramona

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Permalink Reply by Canary3 on July 11, 2009 at 6:08pm

Hi Ramona,
Did you have prob.after D.B.S. with weight gain,dystharthria or depression? So much to really consider. I wonder how many Tardive Gen. Dystonia pt.s have really improved over 50%. Need to know some info. fast. Thanks,Canary3

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Permalink Reply by ramona on July 11, 2009 at 10:17pm

Canary3,
No, I have not personally had any problems with those areas, but I have heard of folks who did. There are no guarantees regarding the % of relief you will get from the surgery, unfortunately...

One of the main things seems to be choosing a good medical team to do the surgery - that can make all the difference in the world!

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Permalink Reply by Joe on July 12, 2009 at 7:28am

Hi Canary,

I didn't experience any of those things. In fact, my speech dramatically improved. I second Ramona's suggestion to find the best doctors. I'd encourage you to join the Yahoo group DBS for Dystonia. There are lots of folks there who are contemplating DBS, are having the surgery, or have had it and are dealing with the aftercare issues. The URL is http://health.groups.yahoo.com/group/DBSforDystonia/?yguid=87563157. Loads of good stuff there...good luck with your decision.

All the best,
Joe

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