Wednesday, July 30, 2014

Once more unto the breach, dear friends, once more

My neurosurgeon confirmed that the leads have moved up 10 mm from the location they had placed them.  His scheduling person is contacting my cardiologist to get clearance for me to have another surgery.  Once I am cleared, the neurosurgeon and neurologist will go back into my head and try to figure out why the leads moved.

My surgeon said that there will be three possible solutions he will try, in this order:

  1. Put the current leads that are in my head back into place by just moving them back down the 10 mm.  He feels this will be the least risky/invasive.  After they are in place they will assess that I am still getting good results from the leads when they are placed correctly.
  2. Remove the current leads and replace them with new ones.  Since they know I had good results during surgery and the first month after (lesion effect), he feels replacing the lead to a known location would be the second best option.
  3. Remove the current leads and place new leads in a different target region of the brain.  Currently, the leads are supposed to be located in the GPI region of the brain.  The surgeon would place the new leads in the STN region which is more susceptible to cognitive issue complications, which is one of the reasons my surgeon placed the original leads in the GPI region.
He is also planning to check the locking mechanisms that are used (he said there are three) to see if a failure in part or whole of one or more of the locks may have caused the leads to move.  He also said, he may use a small metal piece to hold the leads down even better during the next surgery.

While I am hesitant to have another surgery after having suffered a stroke the first time, I cannot continue to live like this.  I struggle every morning and most evenings before bed to just walk to/from my bed.  I struggle to get to the bathroom in time before I have to go.  I get frustrated with myself as well as the kids, the dog and my wife when my meds are off and they want me to hurry or move.  When my meds are off, I get so tired just trying to do everyday activities, but it is also a struggle to sleep, because every way I turn is uncomfortable and I struggle just to turn.  Finally, I am taking so many meds, that I worry that the meds will soon enough start causing really bad side effects.  The fact that I can live and work on the amount of medication that I am currently taking is incredible.

So, wish me luck and I'll keep posting before and after surgery to update folks on my progress.

Friday, July 18, 2014

Good News/Bad News

As many people who read my blog know, I've been struggling with the programming of my DBS for the past 10-11 months.  After I had the surgery, I had what is known as a lesion effect.  Basically, my tremor went away completely even when the leads were not powered on.  This lasted about a month or two, and then the tremor came back with a vengeance.  It has not really gotten better since and none of the settings we've tried have seemed to work.  My walking still stinks and I'm either taking the same amount or more of my Parkinson's medications.

Back in May, my neurologist had me do a CT-Scan to check the lead placement.  Well, the neurologist who was in surgery with me and who was performing my most recent programming called yesterday to inform me that my neurosurgeon had examined the CT-Scan and compared it to the scan I had after surgery when they were diagnosing my stroke.  It looks like the leads of the electrodes have moved, possibly on the order of 10 mm.  While that might not seem like a lot, in brain surgery terms is huge.  It basically moved the leads out of position that could help me and explains why my DBS is not working the way I and my doctors would like.

What this means for me, I'm not sure.  Since my heart attack in February, I have been on blood thinners.  So, surgery for me is riskier, because I have to discontinue taking that medication probably for a few weeks before they can schedule a new procedure.  Also, if they can put the leads back where they are supposed to go, will it take a completely new procedure or can they do it without opening my brain, and with a tremor starting to appear in my left side, is that the right decision anyway?

I'm supposed to meet with my neurosurgeon next week.  Once we meet, my wife and I will discuss my options.  It is scary and exciting.  I want the DBS to work, but we will have to wait and see what happens.