Friday, February 14, 2014

Post DBS Results: Three Months After

It is now three months since they drilled holes in my skull, inserted wires and hooked them up to electricity (in the form of a generator implanted in my chest), so it's time for a DBS Surgery update.

The good news:
YumaBev hair growing back
I haven't had a single foot cramp since the morning of my surgery! My Parkinson's tremors, rigidity and slowness of movement are pretty much gone. I am taking less than half the medicines I was prior. My Stone Face has lessened. I have almost no dyskinesia. My hair is growing back (with more gray in it, unfortunately) and my sense of humor is intact, none of it leaked out.

The bad news: None really, except I can't wear strapless gowns anymore, but that's okay, they were always uncomfortable. 
No more strapless gowns

Since my last DBS update, I have made two more trips to Tucson, Arizona for programming. One just before Christmas and one last week (Jan 11, 2013). The one before Christmas was done by Dr. Norton, my surgeon, and the one last week was done by Stephanie (who runs a DBS programming clinic at Tucson Medical Center). Dr. Norton's settings took care of my tremor, rigidity and slowness. 

That being said, I am still having trouble with my upper lip, not only does it want to curl into an ugly sneer, it also tightens so that when I try to speak, it doesn't move, making me look and sound like a very bad ventriloquist. Stephanie tried some different settings, and I actually got relief for a day or two, but now my right foot wants to turn inward when I walk, so I think I may just forget about it and just continue to take the carbi/levodopa for my lip.

I still get tired very easily, and this past trip to Tucson was a very long day. My Wonderful Husband was "under the weather" so I made the trip alone. I won't do that again. 

YumaBev using chopsticks
I am sleeping about seven hours at night, on average, which is an improvement over the four to five before surgery. My dexterity has improved; buttoning buttons is no longer a problem and I actually ate with chopsticks the other night, however, my handwriting may actually be worse and my typing is erratic. My fingers seem to rest a bit too hard on the keyboard at times, causing things like thiiiiiiiiiiissssssss. 

All in all, I am very pleased with the results. The DBS surgery fixed, for me, everything Medtronic promised it would (tremor, rigidity, slowness). As for the rest, it is not a cure and will not fix everything. I still have a degenerative neurological illness and will continue to get worse, but for now, it's nice to be able to get myself dressed and undressed, fold sheets again and get up from a chair without help. 

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  3. I go back Aug 6 to get programmer to turn it down or put it back like it was. Made right foot cramp and above ankle draw. Would rather shake that have the drawing cramp.

    1. Had to go back couple weeks ago due to spasms in left forearm, numbness in hand, fingers and thumb, whether dbs unit turned on or off, but much worse if on, and learned from unit programmer reports of possible brain burn by over stimulation. There are new procedures such as the skull cap and using ultrasound in mri scan to kill certain tissue in thalamus causing tremor but too late for dbs recipients because can not have mri.

    2. Medtronic brand DBS systems implanted since 2010 are now MRI safe, according to my local Medtronic representative.

    3. Thank you, and had xrays and blood work today showing low B12 probable reason for numbness but xrays not back yet.