Monday, July 26, 2010

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 –

Monday, July 19, 2010

CW’s DBS SURGERY - Why DBS?


These Blogs about CW's DBS SURGERY are from my personal notes and diary, written as CW (my husband) 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 –

Why DBS? - From Notes & Diary Entry May 18, 2010

I just finished talking with a friend on the phone about CW's surgery coming up, and she asked me two questions: "Why DBS?" and "Why now?"

Several other people have asked us how CW knew when he was ready for DBS.

CW’s Parkinson’s has progressed to the point where he has to take more and more medication so that his muscles don’t freeze up. Freezing of body movements is what Parkinson’s disease does. It is a Catch 22 – if you don’t take medication, you freeze – if you do take the medication you may have dyskinesia. Dyskinesia is not part of the Parkinson’s disease itself; it occurs because of medication taken for Parkinson’s. Too much medication will eventually cause increased dyskinesia to the point where the quality of life is diminished.

Dyskinesia is defined as "...having difficulty in the ability to control or perform voluntary movements; having lack of coordination or distortion in movements". 

Why CW can’t control “how much is too much” when taking his PD medication? The answer is that there is a fine line of what causes too much medication, and unfortunately for some patients you can’t determine where that line is – also the line keeps changing minute by minute because Parkinson’s keeps progressing minute by minute.

To see CW when he has his dyskinesia, his arms are flying around; his speech is extremely fast to the point that it is difficult to understand him; he has difficulty walking; etc. Every thing is exaggerated all because he can’t control his movements.

One other reason for having DBS surgery is another side effect resulting from having so much dyskinesia -- CW has lost a lot of weight. He is 6' 1" and now weighs 123 lbs. This is because his dyskinesia burns up so many calories when he moves around so much all the time. He eats constantly small meals, and desserts, etc., but his calorie intake can't match his calories being burned.

So I think the best answer I can give with respect to CW’s decision about "Why DBS?" and "Why now?", it is because the management and treatment of his Parkinson's isn’t currently working; all other avenues of treatment have been explored; and his quality of life is “severely” impacted for normal activities.

CW said that "You know it when it's time!"

To be continued…


Saturday, July 17, 2010

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…