DBS - is there a negative?

In my last post I discussed how DBS surgery has helped me continue working and allowed  the use of my left hand again.  Nothing I am going to tell you here should leave you believing that I have any regrets of having the surgery.  On the contrary, it can be life changing but its not free, figuratively or otherwise.


The negatives:
1) The procedure - It is not painful however it is long. Once you are 'framed' into that chair you aren't moving for 5-6 hours.  There are plenty of people around you to help you get comfortable.  My back started to bother me and my legs got real jumpy by the end.  I think my body had enough.  Not a big fan of catheters either.  There was no pain when they implant the temporary posts to hold the frame to your head or when they were removed.  The hospital staff does a tremendous job of trying to keep you comfortable.  It's just that it is a long procedure and it does drain you. 

2) The battery implant - The battery pack is just plain annoying, even after nearly 2 years with it. Most of the time you don't really realize you have it but when you reach across your body for something, a little tug reminds you it's there. When you lay on your side it gets squished and uncomfortable.  It doesn't hurt you just know its there.  Bothersome is probably a better word. Also, it does wear out.  I haven't had to replace mine yet, I'm guessing by year three, but it does require another day-surgery when it comes time. I'm opting for the rechargeable one next.  I hope to get 10 years out of that one. 

3) The adjustments - It takes months to tune in the device as everyone's symptoms are different and there are hundreds of combinations of settings to go through to give you the best benefit. Even then, my symptoms aren't the same everyday or even the same throughout the day so, it's a bit of what's best in general.  My biggest problem with the adjustments is every time I have one scheduled, that day for some reason, I am at my absolute best. FRUSTRATING!  My neuro still manages to dial it in enough plus gives me enough adjustments in the remote to compensate for fluctuations.  

4) The cost - You need decent insurance for this surgery.  Typically its between $50-60k for the surgery then the follow-up visits are every 3 months for a while until it goes to twice per year.  Travel, time-off for surgery and appointments, plus the cost of the appointments themselves can get expensive.

5) The limitations - Its not a miracle cure for all that ails you.  In my case it works extremely well for the tremors and the slowness of movement I was having in my left hand.  Unfortunately, as you read in my previous blogs, there are over 80 symptoms that Parkinson's can cause.  Your Doctor will determine the best placement, probe and settings to control the worst of your symptoms but you will still have symptoms. Additionally, it doesn't slow the progression of the disease.  Its not meant to be thought of as a cure, more of a crutch.  What it can do it does very well but there are limitations.

6) The future - If you need it, you need it.  You can wait for the next best thing to come out (and it does and just did).  However, what they have out now works very well for the symptoms it can control.  Plus, its a proven surgery with thousands of success stories.  Don't let anything get in your way of being the best you can for as long as you can.

No one knows your future or how quickly you are going to progress.  In my case, I went from diagnosis to having the surgery in 5 years. I'm guessing that's because my Neuro called my disease "aggressive".  Yours will most definitely be different.  Listen to your Doctors, if you don't trust them find someone you do.  Even with the negatives I've listed, this surgery can give you back a part of your life you may have already thought you've given up. 

DBS after 2 years

It's hard to believe that it is coming up on two years since my implantation surgery.  Sounds weird saying it like that, "implantation surgery" and for you Star Trek fans, sounds very Borg-like.

So how has it been?  Initially, I would say very good.  I believe it is the sole reason I have been able to continue working at my job.  The initial tweaks removed the dystonia and painful cramping in my hand and eliminated my tremors.  DBS does those things very well.  However, as my symptoms fluctuate and constantly progress the system is having a harder time compensating or keeping up, as it were.  Each probe has so many adjustments that the tweaking could be endless, but, that's a good thing.  More, finer adjustments means longer adjustment appointments, however it gives the neurologist the ability to find the 'sweet-spot" with less side effects. My problem with the programming adjustments is that for some reason, I am always at my best when I see the Neurologist.  She makes these adjustments and asks how I feel.  "Great" always seems to be the answer but then I came in feeling great too. Just once I like to be seen at my worst - "There, adjust me now!"
One of the drawbacks to the surgery is the area they need to simulate is very near other important areas in the brain.  Not much room in there.  If my settings get adjusted too high, I get what can best be described as "leakage" into a nearby area.  In my case leakage into the area controlling facial muscles. This causes a noticeable slur of my words which when I'm "on" is fine and hardly noticeable.  But, when I'm sliding down to "off- state"  I am very difficult to understand and frankly get so frustrated I just make it worse. My Parkinson's symptoms tend to fluctuate day-to-day as well as throughout the day.  So expecting a device that sends out a distinct and constant pulse to keep up with all the changes is not something I would expect it to be able to do.  But, that said, when my meds are working, the DBS unit does a remarkable job.

So the big question remains "was it worth it?"  Absolutely.  The main reason I had the surgery was an almost useless left hand.  The tremor control was a bonus.  In some ways, now that my symptoms have progressed to both sides of my body, my left hand is more useful than my right.  I will have to work on that with at my next adjustment appointment.  
Next up:  Some of the negatives of the Surgery

DBS - The Main event Part 2

Two weeks after the initial probe placement I was scheduled for the generator, a.k.a. stimulator, a.k.a. battery pack installation.  This surgery is out-patient and the whole operation is supposed to last less than an hour.  It sounds quick and easy but you still end up spending most of the day at the hospital.

Arrival: 10:45 am, admin check in - same as previous surgery although I'm on meds and got a better nights sleep.  After a few minutes I am brought back to pre-surgical for gowning and IV installation.  

Pre-Op:  Still just as crazy as last time.  "Hmm, I wonder what that guy is in here for?" Could be anything as I listen to conversations all around me.  Same process as last surgery, nurse visit, then Anesthesiologist, Surgeon, intern, Anesthesiologist's intern then up to surgery.  This time, however, they inject you with, well..., lets just call it happy juice.  
Surgery:  At some point on my way to the operating room, I was out because I have no recollection of even getting there.  I especially do not remember stating to a group of nurses in the hall, "hey look, there's a gaggle of nurses".  A statement only my youngest daughter would find funny as I have been calling groups of anything 'gaggles'. Did you know that a group of:

Bats are a Cloud - as in, "Look at that cloud of Bats!" 

Butterflies are a flutter

Crabs are a cast

Crows are a murder

etc..

I think it's insane that there are all these different names so I call a group of anything a gaggle.  See, I told you only my youngest would find it funny.

Post-Op:  I wake up and my throats sore - ventilator tube used during surgery, ugh.  I have a newly shaved spot on the side of my head where they connected the leads from my probes to the leads from the battery pack.  Oh, and of course I have this bulge over my left collarbone. Its now 3pm, "where did the day go!"  

The battery pack.  I'm told that after a month your mind gets used to having something foreign installed.  I hope so because it is only the first week and the pack is already bugging me. It doesn't hurt but when you move certain ways you know it's there. If I'm going to carry this battery around with me, the very least they could have done is given me a USB port so I could charge my phone. 

I've been wearing a hat to hide the incisions on top of my head as the hair grows back. I'm not embarrassed, its just I don't want to gross people out when they look at me.  Plus, I'd rather not get into a big discussion about what is going on every time I bump into somebody I know.  The problem is the new incision on the side of my head is right where the hat lays.  What a pain, literally and figuratively.  

Unlike the first operation, there was no boost from the insertion of the battery pack.  I heal for a couple weeks then I get my first of many programmings.   After nearly two weeks there are still some tender spots, especially where the leads run under my scalp.  Bruising and swelling around the pack is almost gone.  Stitches on the side of my head are ready to come out.  So lets fire this baby up and see what she can do.

Next:  In deference to the late great Gene Wilder, "Alive, It's live, It's alive!"