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MurrayPD2

DBS Screening

34 posts in this topic

I just received news that I passed my DBS Neuropsychological screening exams.  At least I know my brain still works pretty good! 

 

Now, I get to wait to see what the next step is.

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Great news! 

 

I have my "deep brain" MRI coming up in a few weeks.  My doc does things differently as he uses the frame less system to place electrodes. So step 1 is a two hour MRI on a 3T machine.

MRI is done, model created. I'll have a general to keep me from moving during the long scans.  Day before surgery I have 4 "Fiducial" placed on the skull, then a CT.  Day of the surgery the detailed MRI is overlay with the CT and Fiducial to give more precise placement and path for least disturbance.   In theory allows a placement the first time.   In reality they will map a few locations.   With the frame system, a mechancial cage is on your head, like a sextant, to determine angles and reference but place electrode up to 10 times to "map" best location so the 2 hour MRI is not a requirement. 

 

Long discussion with two surgeons, who use the different techniques. Surgeon I am going with pretty much summed up both work and while the newer frame-less has advantages but surgeons don't like changing the way they do things.  So if you have someone who has done 500 DBS' they are most familiar with the method they have been using.  

 

Either way both surgeons require you to shave your head. Not an issue for me, so I am always surprised to see someone with a full head of hair the day after surgery.

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The VA will have UTSW (in Dallas) do the surgery, so I don't have a lot of choices, but I know UTSW now has this ROSA robot that will map the brain.  It does mention that this is good for DBS surgery.  UTSW is supposed to be good, but I am hoping this mapping technique will provide the best accuracy for lead placement.

 

I am not looking forward to a surgery, but many say it is worth it.  8)

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Just curious Murray.  What did they tell you to expect as far as time off from work for the initial surgery, and the second one to implant the controller?  Do you anticipate returning to work in between?

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Just curious Murray.  What did they tell you to expect as far as time off from work for the initial surgery, and the second one to implant the controller?  Do you anticipate returning to work in between?

 

We haven't gotten that far on details.  I recall hearing 4-6 weeks of recovery, but I don't know their process there.   I am hoping to talk to UTSW soon. 

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We haven't gotten that far on details.  I recall hearing 4-6 weeks of recovery, but I don't know their process there.   I am hoping to talk to UTSW soon. 

 

Thanks.  I'll be curious to see what they say when you get to that point.

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First surgery recovery is about a week , 2nd is not so bad I don't work but you just can't lift anything over like ten pounds for 3-4 weeks! Oh by the way if you cough or sneeze you may hear a gurgle in your head it's normal it is air from displaced cranial fluids will disapate quickly but nobody tells of me and scared me the first time!

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First surgery recovery is about a week , 2nd is not so bad I don't work but you just can't lift anything over like ten pounds for 3-4 weeks! Oh by the way if you cough or sneeze you may hear a gurgle in your head it's normal it is air from displaced cranial fluids will disapate quickly but nobody tells of me and scared me the first time!

 

Thanks for the info.  The gurgling sounds a little bothersome, but I guess everything has its quirks.  I imagine that was a little scary! 

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Thanks.  I'll be curious to see what they say when you get to that point.

I have an appointment next week with the neurosurgeon.  This is progressing right along!  As it comes closer to reality, I get a little more apprehensive.   I will let you know what they have to say.

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Just curious Murray.  What did they tell you to expect as far as time off from work for the initial surgery, and the second one to implant the controller?  Do you anticipate returning to work in between?

 

I had my appointment yesterday.  They said I could be back to work as soon as two weeks, maybe 4 if needed.  The way my surgeon will do it is to put two leads in, then 7 days later, they will put in the battery.  So, two weeks of surgery/recovery.  He did say it is possible fro me to go to work a week after the battery implant.   I won't rush it, but that is better than I expected.

 

I am scheduled for January.

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I'm feeling pretty good, two weeks after brain surgery.  Battery implant was done last week, and had it inplanted up near my pectoria.

 

Almost everyone today has it "placed in the belly" as pec's are tender after placement.  For me it was done intentionally as I didn't want the battery in my abdomen as there are still "tumors to be watched" by PET SCAN.  

 

A week after battery placement I'm feeling pretty good. Still another week before I lift anything heavier than 10 pounds.  Biggest issue at the moment is I am on no medication for a few days, for initial programming. So zero plans to drive myself anywhere until a few days after initial programming. Just need to get back to walking the dog as soon as I feel steady enough.

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I'm feeling pretty good, two weeks after brain surgery.  Battery implant was done last week, and had it inplanted up near my pectoria.

 

Almost everyone today has it "placed in the belly" as pec's are tender after placement.  For me it was done intentionally as I didn't want the battery in my abdomen as there are still "tumors to be watched" by PET SCAN.  

 

A week after battery placement I'm feeling pretty good. Still another week before I lift anything heavier than 10 pounds.  Biggest issue at the moment is I am on no medication for a few days, for initial programming. So zero plans to drive myself anywhere until a few days after initial programming. Just need to get back to walking the dog as soon as I feel steady enough.

Thanks for sharing! I hope you continue to do well with it.  Medtronics called me this afternoon and wants to meet me to go over some details on the system.  I should be talking to them next week.

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I had initial programming done this morning.

 

My MDS and Surgeon had already been talking with each other, as I am a rare bird.  To insert the leads a "guide" is used. think of a straw tube being placed, that then guides the sound probe (first part of surgery to confirm placement); then followed by the insert.   What I couldn't figure out, and seemed to odd to the Medtronic's Rep, as just the guide placement does create a small lesion in the brain (expected and known), but typically GPi placement doesn't quell tremor. For me just that tube placement stopped tremor and rigidity immediately during surgery.   All published literature says "not a common event".  GPi was chosen as best bet for both Parkinsons's and Dystonia.  

 

Odd  Off meds for a day, felt pretty good. Much better than I had in ages, despite no meds for 24 hours.  I'm still in that "honeymoon sweet spot" post  surgery, so stimulator was turned on just a little. 

 

No tremor, and my deep voice came back. Oh crap I was not expecting my booming voice to return. Did the walk down the hall, and actually walked with a good stride and my arms are moving. I'm still in awe of "what happened?".  I was able to tap rapid with heel/toe. Movements are fluid, it is just too odd for words but my wife was teasing me as she hasn't seem me move like that in years. We have been together for 16 years, even on my best days with medication i ways always "Mr. Robot" wrt limb movement.   Just an incredible feeling. I still have a ways to go, obvious I still have brain swelling, but so far much better than I expected. Keep in mind my results are not typical, but seems to be both the placement of the guide hitting a sweet spot (tossing a tennis ball and hitting the steeple of a church 100 miles away.... )

 

Time will tell how this last. I supplemented 1/2 Sinent this morning.  Still pretty stable, just a touch of tremor, but able to use a keyboard and mouse.  Dare I say I am tempted to go out to the shop to build something?

Edited by TexasTom
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Wow, Tex!  That is all so great to hear!  It must all seem so strange, too--especially having your deep voice come back.  :-)

 

And it must have been fascinating for your co-workers to see. 

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Thanks for sharing! I hope you continue to do well with it.  Medtronics called me this afternoon and wants to meet me to go over some details on the system.  I should be talking to them next week.

 

The latest generation are "who whole body safe" for MRI.  Here in Austin, TX  there is only ONE location that does MRI's on people implanted with a DBS.

 

Thankfully same hospital I had a lung scan done at it, so I know my insurance is accepted there.   

 

My 3T head scan bill showed up:  MRI + Full Sedation was billed at $9,800. Heavy discounted for Insurance. Insurance paid $2000, my out of pocket was $300. Not too bad.  Had it been out of network, often they will accept a negotiated payment (so always ask). Glad it was in network (I have great coverage for in network providers).

 

Medtronics: You want a "safe for both head and body MRI".   It has to be done at a specific radiology location, as there is a procedure for the Radiologist to follow on machine settings.   You will want to turn the DBS Battery off for MRI. 

 

Battery life for the standard battery is 3 to 5 years.  The rechargeable battery is typically 9 years. Everyone varies depending on settings.   Rechargeable battery is small, less invasive (my pec hurts, I screwed up and should have insisted on the smaller rechargeable version).   

Edited by TexasTom

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I talked to a guy today at work with no tremors thanks to DBS.  

 

I will definitely want rechargeable, but nobody asked yet.  Although, the same person I talked to mentioned he recently forgot to charge and woke up in the night struggling to get up to charge it again.  So, there is that extra responsibility. 

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Just to update for those following this thread:

 

I am getting a non-rechargeable battery.  I am ok with the pros/cons. 

 

I will have 2 stages for surgery.  I will be asleep during the surgery (in Jan). 

 

1. Both leads installed - overnight hospital stay ( I heard maybe 2 days)

2. 1 week later battery installed outpatient.

 

Then, one month later, I get my first program from my MDS. Then, 1 week after my first programming, I get another appointment with my MDS to possibly tweak settings more.

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I am one week out now!  I will be able to get an MRI with my SCS installed.  This is great news.  They don't seem to like CAT scans, but can work with them.

 

I have a pre-op appointment this Friday.  I will get all the pre-op questionnaires and MRI done here. 

 

I trimmed the hair short in anticipation of going bald.   

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MurrayPD2

 

Hi, I would like to know why you're already at the stage of needing DBS. I'm sorry that you're here so soon. If I'm reading it right you were diagnosed only in 2015. Makes me wonder why. Do you mind sharing? You have been very open with your journey thus far and I really admire how you shared such personal issues. We all learn from each other.

Thank you

D

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MurrayPD2

 

Hi, I would like to know why you're already at the stage of needing DBS. I'm sorry that you're here so soon. If I'm reading it right you were diagnosed only in 2015. Makes me wonder why. Do you mind sharing? You have been very open with your journey thus far and I really admire how you shared such personal issues. We all learn from each other.

Thank you

D

Excellent question.   To save myself from repeating too much, I think I summarized it fairly well here:

http://forum.parkinson.org/index.php?/topic/21663-visit-with-medtronics/#entry118579

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Thank you!

 

I just can't believe that it took the Doctors that long to diagnose you with PD. You had so many cardinal symptoms. Wow what a journey!

 

I wish you all my best MurrayPD2...

 

D

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I completed stage 1 of 2. I am getting rod of the bad headache and feeling better. Surgeons says he got very good placement. I am resting and waiting for stage II. The screwdriver

 

The frame installation was painful when it was first inserted, but that dissipated. After the CT, I said goodbye to my wife and woke up in recovery around 2.5 hours later. My wife and parents cam me, but I couldn't fight the anesthesia puttting me back to sleep. Overnight, I slept well but couldn't turn my head without a severe headache. This got better and I suspect it is because the leads are stuffed into my left side for stage 2. The main complaint I had was that side.

 

 

To be released, I had to prove I can walk on my own, so that was breeze. The surgeon was glad to see a YOPD because he knows we could benfefit more.

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I completed stage 2 of 2.. Much easier surgery.   The soreness in my chest is pretty strong and I need to watch my neck too.  But, I am happy to get it done.  I am speaking better and staying pretty focused.

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Recovery on stage 2 is definitely a little tougher and slower.  The leads in the neck can sometimes be felt on certain movements.   The chest is less sore today, and I pretty much stopped pain meds in the last 24 hours.   However, it is going to be sore for a little while.  I am surprised at the amount of staples in my head.   They took out the original staples while I was under surgery, but I woke up with about 6 above my left ear.  I was expecting something there, but not 6.   My chest is another 12, so, if I include the first two cuts, that is 40 staples.  The head cuts are not really bothersome though.   

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