CW's DBS SURGERY – 1st Surgery

A Very, Very Long Day

From Notes & Diary Entry May 26, 2010 11:32pm

This will be a short entry, because I’m really tired, and it is quite late. We both have had several days of not much sleep. CW and I have been a anxious about his upcoming surgery and have had trouble sleeping. Drilling holes in a person’s head can cause one to have concerns. I’m happy to say that CW’s surgery went well today.



5:00 am – We arrived early at MCG outpatient surgery registration, and they actually started early to process CW for surgery.

7:30 am – Started the MRI to do the mapping of CW’s brain

9:50 am – MRI finished and time to do the calculations and analysis of the MRI mapping results

11:20 am – Started surgery using the MRI mapping

1:50 pm – Surgery completed and CW was moved to Recovery

1:50 – 8:00 pm – Right after he was taken to Recovery, CW was awake enough for me to tell him that our friends, Bill and Kay were there to check on him – I asked if he wanted to see them – CW’s answer was “Yes”. They came into the Recovery room one at a time, and briefly talked with CW, left, and then CW went right back to a deep sleep. [Note: Bill had DBS last fall. Bill and Kay have been a wonderful resource for us – letting us know what to expect based on their experiences – playing it forward to us.]

The Recovery staff and I waited - and waited - and waited for CW to come out of the anesthesia. He would sort of wake up, and when asked - “Mr. Gantt, can you wake up?” – CW’s response was an emphatic “No!” and he would go back to sleep. “Can you open your eyes?” - CW’s response was a definite “Go A-Way!” and he would go right back to sleep. He would mumble off and on periodically with his eyes closed.

Finally around 6:45 pm he woke up, said he was hungry and thirsty. They asked him if he wanted some Jello – “Maybe”. After a few bites of Jello, he said he wanted “real” food. Unfortunately since he was still a little groggy, they have him on a liquid diet. CW finally reluctantly consumed a small bowl of beef broth and Italian ice with mumbles I won’t repeat, and went back to sleep. Eventually he started coming around - knew where he was – was asking questions about the day, time, people around him, etc. enough so that he could transfer him to Neurosurgery ICU.

8:45 pm – I stayed around long enough to see CW settled in his new Neurosurgery ICU digs and left for the motel to get some sleep. I am exhausted from lack of getting restful sleep for several days.

Tomorrow, if CW is OK and can walk a prescribed distance down the hallway with Physical Therapy folks, they may let him come home. Hard to believe that he has a hole in his head (didn’t we always know that) with wires, and he can come home!

The current plan is in 2 weeks they will do the opposite side of his brain. Then 2 weeks later they insert the 2 neurostimulators/pacemakers and hook up the 2 corresponding wires from the brain. Then 2 weeks later we come back to turn-on the pacemakers – with several more visits later for fine tuning. We will be like hamsters running in a wheel for the next several weeks.

When his doctor talked to me to tell me that CW’s surgery went well, he reminded me that DBS does not cure Parkinson’s – it only (hopefully) helps to reduce some of the symptoms of PD and side-effects of the PD medications. Also to be aware that we won't know how well these surgeries will help until the fine tuning is done. We may see a little benefit up-front, but the proof is in the pudding after all the healing is done.

11:30 pm - So again, it is late, I am really tired. I’ll enter more details later.

To be continued…
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These Blogs about CW's (my husband) DBS Surgery Procedures are from my personal notes and diary; written as CW went through his DBS (Deep Brain Stimulation) procedure. Please note that I am not by any means a medical expert or professional. I’m just providing this information with the hope that our own experience; what we have learned through trial and error; and what we have learned from reading and research, will help others going through or considering DBS surgery. I think that "playing it forward" (sharing) is the best way to explain why I'm doing this.

Note:  As of July 17, 2010 CW has had his three DBS surgeries, and both of his pacemakers have been turned on and have had their first tuning.  CW is still recovering from the surgeries, and is doing well.  – Dottie –

CW’s DBS SURGERY - A Little Background

These Blogs about CW's DBS SURGERY are from my notes and diary written as CW (my husband) went through his DBS (Deep Brain Stimulation) procedure.  Hopefully some of this information will help others going through or considering DBS surgery.

Note:  As of July 17, 2010 CW has had his three surgeries and both of his pacemakers have had their first tuning.  He is still recovering from the surgeries.  – Dottie –

The Start Of It All

For several years CW’s Parkinson’s was progressing slowly and his medications were managing his symptoms fairly well until the fall of 2007, when CW was diagnosed with Pheochromocytoma (a nasty type of cancer of the adrenal gland), and he had to have surgery to remove an adrenal gland. After this surgery, CW’s PD medications (meds) didn’t appear to be managing his symptoms very well and the disease seemed be progressing somewhat faster.  His doctors said that this sometimes (changes in the progression of PD) happens when a patient has severe illness or stress.

At the beginning of this year, 2010, CW made the difficult decision to have Deep Brain Stimulation surgery (commonly known as DBS), to be performed at the Medical College of Georgia (MCG) in Augusta. All of CW’s doctors (neurology, family, etc.) agreed that it was time for him to have the procedure.

DBS consists of 3 separate surgeries

• 1st surgery is implanting an electrode connected with a wire on one side of the brain

• 2nd surgery is implanting an electrode connected with a wire on opposite side of the brain

• 3rd surgery is where the wires are connected to a type of pacemaker device (called an impulse generator, or IPG) implanted under the skin of the chest, below the collarbone

Later the impulse generator /neurostimulators will be turned on and programmed to a starter level. There may be several months of return appointments to fine tune the programming of the stimulators and PD medication adjustments.

DBS is not a cure for Parkinson's disease nor will it stop the progression of the disease. It is another way of managing Parkinson’s symptoms by reduction of PD symptoms and also being able to greatly reduce PD medications.

In spite of the fact that a patient initiates having DBS; and in spite of the fact that their doctors indicate that it is time to have DBS, you still must go through an evaluation process before you are approved to actually have the surgery (at least at the majority of hospitals this is the protocol). It certainly isn’t a decision to be made lightly; and a decision like this affects the whole family not just the patient.

January 2010 we went through the DBS evaluation process to see if CW is a good candidate. CW had MRI scans, CT scans, neurology evaluation and testing, neuropsychological evaluation, evaluation by the brain surgeon, anesthesia evaluation, risk assessment, lab tests, and other stuff that I can’t remember.

I’d like to note that as part of the evaluation I also had to participate in the neuropsychological evaluation. They want to make sure that everyone, patient and primary caregiver is on the same page and understands the ramifications of having DBS and the risks of surgery.

After all the testing and evaluation, you wait to hear the results. Then if you are approved, you wait to get a date for the first surgery and the date for the 1st pre-operation testing (yep, more testing to be done). Fortunately MCG has been really nice about scheduling the CW’s 1st surgery pre-op for the day before his surgery – which means that we won’t have to make two separate trips to Augusta.

The scheduled dates for all three surgeries –

• May 26th – Inserting 1st electrode & wire on one side of brain – local anesthesia with normally an overnight hospital stay

• June 8th – Inserting 2nd electrode & wire on opposite side of brain – local anesthesia with normally an overnight hospital stay

• June 22nd – Inserting a type of pacemaker device (called an impulse generator, or IPG) implanted under the skin of the chest, below the collarbone (general anesthesia) and connecting the wires from the two electrodes – but not turning on the pacemakers yet because they want the surgical incisions to have healed – general anesthesia with normally outpatient if all goes well

So that’s where we are right now, waiting to go to Augusta for the 1st surgery. I told CW that when they drill the hole in his brain for his first surgery, that he should be careful not to tilt his head and let everything fall out – he just looked at me, shook his head, and then he laughed.

To be continued…

Managing PD Medications - One Solution

Once Parkinson’s disease (PD) has to progressed to a certain point, PD patients and their caregivers often find that managing and balancing PD medications becomes a difficult task. It is sort of like trying to hit a moving target – because as the disease progresses, the combination and dosage of PD medication (sometimes called a “cocktail”) needs to be adjusted in-parallel. Just about the time you think you have the PD medication figured out, the disease has progressed or symptoms have changed.

A member of our support group sent me some email on this topic, and I thought that their comments regarding how they manage taking PD medications might be of use for others with “similar” situations. I am "not" suggesting that everyone should use this method of managing PD medications, but their solution is something to think about. With their permission I am sharing this excerpt from their email.

Because they don’t feel comfortable using their real names, I have changed their names to respect their privacy.

Beginning of email extract…

“I have been setting up Jack's medicines for him. He was reluctant, but is very agreeable to it now. In the past I have only done this when he has been in his dark holes, or having his surgeries. A couple of weeks ago, it just seemed everything was not as good as I thought it should be and we were having problems between us because of it. Overall, everything has been much smoother now. I set them up for the week, he checks them to be sure I am right, then he is in charge of what time he wants to take each dose and if I have concerns I glance at his case to see if he is on track. (Before, I never knew for sure what was in the case to be sure of what I was observing) Yes, he has found some errors on my part a couple of times! I really feel like he may have dropped pills in the wrong compartment resulting in taking too much at one dose and not enough at another! I have found pills on the floor and never knew if he was aware it dropped or thought it was in his case. This way, we both know what is in the case is accurate and when I see side effects, I can better determine if it may be medicine related or otherwise. Because of his coordination, he was setting up his for only one day at a time and of course he was more apt to make a mistake because of rushing. The first couple of days, I hid the stash so I would know he wasn't getting extra. He now knows where I keep the stash but has agreed to let me know if he takes anything extra. Since the stash is not in his sight all day, he is less tempted to grab an extra Sinemet and has done a better job taking his doses on a regular basis. Whenever he would take an extra Sinemet, his body would forget it was time for his regular dose... thus everything was off kilter! The main problem is since I wouldn't know exactly what he was taking I was misinterpreting the side effects. For now, our whole life has been more smoother! When I see the Dyskinesia or freezing, I am better able to judge where he is in his cycle of doses to know whether there is real concern or not. Many times over the years, I would only find out a few days after when he had decided to try living without a certain drug or adding extra... and that was after stressing why his medicine was no longer working properly... only to find out he had been making adjustments without my knowledge! I try to remind him that only he knows how he feels on the inside, while I can only judge how he looks on the outside and it takes both of us to fine tune his medicine. As a result, we have actually cut back on his Ativan... but we both have been on board (along with the doctor) to know when enough is enough!”

End of email extract…

Sitting down to the Parkinson Round Table - The Diagnosis

Please pull up a chair to our round table -- We will be discussing many Parkinson related topics, and I will be sharing my story about living with Parkinson's disease (PD). Perhaps by sharing my PD story, others will join the conversation and share their own stories. Families who have a newly diagnosed PD patient may be helped by hearing from the PD community -and- Families who have been living with PD for a while may offer support, tips, techniques, and solutions to living with PD problems.

Short version "About Us" -- My husband's name is CW (he has PD). Yes, CW just goes by his initials. I think it is a "Southern" thing to use just initials for a name. CW has a degree in Electrical Engineering. My name is Dottie ( the care partner/caregiver). We are both retired research engineers. We are both "Type A's" and "Control Freaks". To make any type of decision, we want as much data as possible - no matter how small (like buying groceries) or large (like buying a house or buying a car) the decision is.

The diagnosis -- I started noticing that CW was having little difficulties here and there with dexterity of his hands, and he was exhibiting some "weird / unusual" symptoms. Sometimes the area around his mouth would look like when a cat or dog sniffs at you (picture how you look when you scrunch up your nose and your upper lip scrunches too). At night, while he was sleeping, CW would kick me from all the way across our king-size bed to my side of the bed; and he would not remember kicking me, but I had the bruises to prove it. CW's handwriting was getting smaller. There were other subtle and not so subtle changes; and there were more and more changes, which when combined they created enough information that something wasn't quite right.

CW and I hadn't said anything to each other about his changes, until one day at breakfast our conversation went sort of like this.

Dottie - "CW, have you noticed that you do ..." And then I mentioned the different symptoms I had observed.

CW - "I didn't want to say anything to you, because I wasn't sure that it was happening to me."

We compared notes with each other, and we started keeping a log and collecting data of incidents (remember we are engineers). Together we decided that something was definitely going on, but we didn't know what that "something" was.

For many months CW made visits to many types of doctors. He saw internists, ENTs, cardiologists, and other types of "...ogists" doctors. There were many different battery of tests - CW's eyes were checked, X-rays, MRI's, CAT scans, blood tests, urine tests, etc., etc. I don't think there was any part of CW's body that wasn't examined. We heard a lot of "We don't think it is ..." -or- "Perhaps you should see Doctor ..."-or- "We aren't sure, but we think it might possibly be ..." CW and I felt like we were chasing our tails. We were getting very stressed hunting for the diagnosis, and CW was slowly getting worse. Was the stress causing the disease to progress? - Perhaps.

The worst part of all of this was not knowing what "it" was. We were thinking and imagining the very worse disease possible. Finally, our family doctor recommended that CW see a neurologist our doctor knew of. Even though CW had already been to see another neurologist, CW went to the recommended one for another opinion.

I still remember that day. I remember what I wore - what CW wore - how the doctor looked - and the tone & sound of the neurologist's voice.

Neurologist - "I have some good news and some bad news." It seemed like there was a very long pause of pregnant silence. "The good news is that you have Parkinson's disease; and the bad news is that you have Parkinson's disease."

CW and I looked at each other, shocked, not knowing what to say. There was disbelief. I just knew that the neurologist had to be making a very big mistake about his diagnosis. Even though we had talked about and anticipated the very worse disease, I never expected to hear the word "Parkinson's". I felt like I was going to faint and be sick at the same time.

CW - "Are you sure?"

Neurologist - "Not 100%. You see, Parkinson's is a very difficult disease to diagnose. There is no routine test (i.e., X-ray or blood test) I can do that will 100% can confirm Parkinson's disease. We would have to examine a slice of your brain under the microscope to determine if you had Parkinson's; but then if we did that, you would have to be dead to perform this type of biopsy test."

CW - "Well what data and/or criteria are you using to determine that I have Parkinson's? (CW still behaves like an engineer!)

Neurologist - "None. The conventional method we neurologists use for diagnosis of Parkinson's includes:

• The presence of majority of the four primary symptoms - resting tremor, or trembling; muscle rigidity or stiffness of the limbs; balance problems; and gradual loss of spontaneous movement (slowness of movement)
  
  
• The absence of other neurological signs upon examination (a process of elimination)
  

• Responsiveness to Parkinson's medications, such as levodopa"

CW - Silence

Dottie - Silence

Neurologist - "Based upon the fact that you exhibit a majority of the four primary symptoms of Parkinson's, I think that you should try to see if you have some responsiveness to a Parkinson's medication, such as levodopa. Do you want to try that?"

CW - "Will the medication harm me?" -and- "What have I got to lose?"

Neurologist - "No it won't harm you." -and- "You have nothing to lose. You may learn what you do have, and we can start treating it."

CW was given a sample of a form of levodopa. As a result, when he took the medication, some of his weird and strange symptoms went away. And thus the diagnosis was made. Much to the credit of CW's neurologist, he did suggest that CW get a second opinion (which is always a good thing to do).

On one hand, it was a big relief to have the name of a disease that we could associate to CW's symptoms; but on the other hand, hearing the diagnosis made both of us very afraid. We thought we knew what Parkinson's was, but we really didn't.

I don't know what it would be like to be in CW's shoes and be told - "You have Parkinson's". To this day, I have no idea what CW really felt like when he learned that he had Parkinson's. I know that I cried for many days - I would get in the shower and cry so that CW wouldn't see me crying. I got depressed. Some days we didn't know what to say to each other about the diagnosis; so silence on the Parkinson's topic for those days was OK.

At some point we realized that we had to take charge; and we both started researching as much as possible to learn about Parkinson's. The internet was a big help, but we knew to use it with caution. We read books wherever we could find them. We almost became obsessive in trying to learn as much as we could about the disease. Some days it was hard to read some of the information, because it was frankly scary. Other days, I felt like - OK, I can deal with this. CW and I discussed how we were going to tell our family, friends, neighbors... (how we did this will be a topic for another blog posting). We both went through such a roller coaster of emotions. We now had this Great BIG Elephant in our life!

Note that I often use the word "we" in my posting. When a patient is diagnosed with Parkinson's, it "absolutely" becomes a family affair.

And so, that's how our/my journey of living with Parkinson's began. At the time this journey started, CW and I did not know how much his having Parkinson's would change our lives. Nor did we know about the amazing and wonderful people we would meet because of Parkinson's.