The things I’ve been through…

Okay… It’s been awhile. Let’s look at the previous entry from way back in August. Back then, I had started seeing a new Psychologist. This is just something that I just felt needed to be done. No big deal…. right?

Well… it was working with this person to “change medications”. Honestly, this was a dumb idea and I should have denied to do it. Instead, I went ahead and agreed to change one… or some… or all. Whatever. No big deal…. right?

It IS a big deal. I’ve been taking these medications from my Neurologist for years and was asked by the Psychologist to just entirely drop one. The reasons for this medication I was taking was seizures (by a Neurologist) and I was using the SAME medication for another reason (by a different doctor). Well, this new Psychologist told me to just drop it because… well… I honestly can’t remember the entire reason for that. SO, what happens to me when I just “drop” a seizure medication?…

I have a bad-ass seizure on the day-after Christmas.

I was lucky that my awesome son is with me at the house. He finds me on the living room floor and calls an ambulance. I have no memory of this and the next thing I know is that I’m opening my eyes hours later in the same hospital where I got the brain surgery done. SHIT! At that time I could see and hear, but I just couldn’t speak. I was told that my brain was not working enough to get words all the way through and out my mouth, so the doctor will be back later. Thankfully, after an hour or so, I was able to talk when the Neurologist returned.

I was told that earlier (but don’t remember) that I had been put through enough brain scans to look further. It’s still there… what little is left (haha). I was just basically told to GET BACK ON the medication that I had stopped, but only getting on it SLOWLY. Started this all over again directly after getting out of the hospital, and I AM STILL slowly getting back on these pills in April.

Okay. Side effects of this medication that I had gladly gotten away from before having the seizure: “increased tremor” and “getting less words out of my mouth”.

I’ve always had a tremor in my arm/hand since the damage to my brain 35 years ago. With this med, it is just worse.

I have always been able to think about and know exactly what I want to speak. I just don’t have the luxury of getting everything out of my mouth on the medication. I can get all my words out when I RAISE MY VOICE (done with a different part of the brain), but I just can’t when I speak “normal” as easily.

So, this is where I am at today. Haven’t had any more seizures (thank God), but the tremor in my arm is getting worse. I had forgotten how bad the tremor has got while on this medication. Bummer….

New Psych @ The Hospital

So, today I went on a trip back to the hospital where my brain-surgery was done. Went there to see a new “Psych-lady”. That was… nice.

I just told her my entire “story” (pretty-much everything in this blog, and more). She was quite impressed with my entire life. I talked to her about getting a new Psychologist in my hometown and not have to drive the length to the hospital. She agreed.

So, that’s where I am with that….

Next…..

A Pill is gone, because of….

About a week ago, I was calling over to the hospital to speak with my new Neurologist about the newest medication I’ve been on for awhile. The one thing that I hated with it is that it had to be taken 3x a day.

Well…. one of the side-effects was REALLY kicking in last weekend. Oooohhh…. That thing was making me sooo tired. I’d get up, take pills, eat breakfast, and was so tired that I just had to lay back down. I was OUT. Woke up at noon, took a pill, ate lunch and just had to lay down again! Woke up for dinner…… on and on and on…..

I finally told myself NOT to take anymore Sunday night or Monday morning. Monday, I called over to the office of my new Neurologist and spoke with the nurse about the problems for the weekend. She told me just to stop the Morning and Noon. Uh, no. I told her that I was wanting to COMPLETELY STOP the pills all-day. She and that was fine. I was only taking them for the reason of stopping the tremor in my right arm and hand. Made it “better”, but the tremor was still there (not as bad as before). If the pills were COMPLETELY getting rid of the tremor in my arm, then I would be concerned with getting off it. I didn’t want to change the med. But I could be just sleeping all day with it EVERYDAY! ARGGGG…..

So, I got completely off that pill and now my right-hand (and arm) has the bad tremor back. It really bothered me when it started coming back. But after a few days, I have just gotten used to it (I guess that’s kinda the way I’d put it). I’ve had this before, so I have gotten used to again.

I was told on the phone that the new Neurologist should call and discuss. That wasn’t happening. So, here’s where I am: The one prescription is removed. Not feeling like I just want to sleep 24 hours a day. Tremor in my arm/hand has returned worse than before.

Other than all that, everything is great again as far as the THINKING and TALKING goes. I can just stay this way until another surgery (someday) would help. That’s where I am.

ūüėČ

The New Doctor…

Today, I went to see a NEW Neurology Doctor. It’s down the street from the hospital of my brain surgery in a different building:¬†University of Physicians – Neurology.

I was there to explain to the doctor my “whole¬†story” of all these things I’ve been through with my whole surgery. I explained how my right-arm is much more shaky after getting off this latest medication. Well, they have a plan….

Let’s do MORE Brain Surgery! ¬†ūüôā

I’ll look into it and think about it. No coma-time (unlike my last surgery) and have it be just in & out in a day. Well, I don’t know about that ONE DAY. After surgery on my brain, I’d rather stay in the hospital at least ONE night. Eh?¬†

So, how does this surgery work?

Deep Brain Stimulation for Essential Tremor.
Deep brain stimulation (DBS) is used to treat a number of movement disorders, including essential tremor. DBS is a way to inactivate the thalamus, a structure deep in the brain that coordinates and controls muscle activity. The true cause of essential tremor is still not understood, but it is thought that the abnormal brain activity that causes tremor is processed through the thalamus.

How Effective Is Deep Brain Stimulation?

Deep brain stimulation provides moderate relief for approximately 90% of patients with essential tremor.

There’s allot more to Deep Brain Stimulation for Essential Tremor, but this list is interesting…

Advantages of deep brain stimulation include:

  • It doesn’t destroy brain tissue and won’t limit future treatment.
  • The device can be removed at any time.
  • It is adjustable.
  • It may be more effective in controlling tremors than¬†thalamotomy, or destruction of the thalamus.

Disadvantages of deep brain stimulation include:

  • Increased risk of infection from the presence of a foreign object in the body
  • Repeat surgery every three to five years in order to replace the battery in the device
  • Uncomfortable sensations that may occur during stimulation

MY THOUGHT:¬†“Well, everything has disadvantages…”

Let’s look into it more….

What Happens During Deep Brain Stimulation Surgery?

Using CT or MRI scans, surgeons will target areas for placement of the electrodes. Some doctors may use an electrode-recording technique to map and target the specific areas in the brain they will need to reach.

Once the correct location is identified, the permanent electrodes are implanted in the brain. The loose ends are placed underneath the skin of the head and the incision is closed with sutures. The wires are attached to a small impulse generator, about the size of a pacemaker, that is placed under the skin on the upper chest. Two to four weeks later, the IPG is turned on and adjusted. It may take a few weeks until the stimulators and medications are adjusted before a person gets relief from symptoms.

Will I Be Asleep During Deep Brain Stimulation Surgery?

You will remain awake but in a type of “twilight” zone during most of deep brain stimulation surgery. This allows the surgical team to interact with you when testing the effects of the stimulation. Small amounts of local anesthetic (pain-relieving medication) are given in sensitive areas. The vast majority of people experience minimal discomfort during the procedure.

MY THOUGHT: “Twilight Zone…. I’ve always loved that show! ūüôā Basically awake during the entire surgery. Pretty much….”

What Should I Expect After Deep Brain Stimulation Surgery?

After deep brain stimulation surgery, you may feel tired and sore but will be given medication to keep you comfortable. Also, you may have irritation or soreness around the stitches and pin sites.

As with any surgery, there are some guidelines and limitations that you should follow after DBS. Be sure to discuss these with your doctor and ask questions before surgery. Understanding what you will be experiencing and knowing what to expect afterward can help ease some of the natural anxiety that comes with any medical procedure.

Can I Use Electrical Devices After Deep Brain Stimulation?

While you should be able to use most electronic devices after DBS surgery, you should be aware that:

  • Some devices, such as theft detectors and screening devices, like those found in airports, department stores, and public libraries, may be triggered by your device. It may take extra time to go through airport security. Always carry the identification card given to you. With this, you may request assistance to bypass those devices.
  • You will be able to use home appliances, computers, and cellular phones. They do not usually interfere with your implanted stimulator.
  • You will be provided with a magnet to activate and deactivate your stimulator. This magnet may damage televisions, credit cards, and computer discs. Always keep it at least one foot away from these items.

MY THOUGHT: “Kicks theft detectors? …screening devices? Ugh… Might be a little hard with that. (kinda funny, though…)”

But, still do-able…

New Job at the Hospital…

Well, this Friday position over in HR to do “filing” of paperwork has become… well… not as complicated for me as was thought. So, they informed me:

“Darren, we don’t have enough for you to do (every Friday), so we only will need you to come and work for us every-other Friday.”

Ugh. Great. What am I going to do with these OTHER weeks I’m not volunteering there?
Wellll… Ok.

Here’s my story:¬†Buddy and I are always talking after lunch while I’m waiting for my ride home. I do my jobs on Friday morning. He’s been sitting and volunteering his job (my old Friday morning job) for YEARS on Friday afternoons. So, it was agreed that we would do it this way: when I am not working in the other building, every-other morning, then I will just work at this position again (his position)….on those days…for the afternoon.

Uh, hell no. That only worked (one day) until I had the Volunteer “Lady Up Above” caught me sitting there. Doh! I had to get out of there before she kicked me HARD.

“YOU cannot volunteer at afternoon positions! YOU informed me of this!”

Dang.

Ok…. Ok….

So, I went back to see her¬†(after getting the yelled at and kicked) to inform her that I needed something to do on the every-other Friday since I have nothing. She told me I need to go work at “that other building down the street” and AWAY from the Hospital itself.

“Just Go Away….”

This is cool. Now, the opposite weeks that I work at the HR office, I work over at the storage building. I create and insert forms into a folder, and then I put everything into a box. An EASY job and it’s better than just sitting at home on the “Off Days”. ¬†ūüôā

(Just between you and me… these guys at the new location want me to work all day/everyday after I’ve been there just one morning? Hahaha… I told them I’ll think about it.)

Surgeon Appointment

I had an appointment to see my Brain Surgeon at the hospital today.

I asked another Doctor who came to check on me…

“So, is my Brain Surgeon busy doing someone else’s brain today, and this is the reason I am unable to see him at this time?”

“No, the Neurosurgeon is in China right now for a conference where he is speaking.”

WHAT? My Brain Surgeon would RATHER go to China, and speak to other people who (probably) don’t understand what he is saying, rather than meet with his success?

Okay…. So, at the end of the meeting that I was having today with a different Doctor, I was told that I had no reason¬†to come back¬†and “try” to see the surgeon again for anymore years. I was informed that the SURGEON’S job is ALL DONE and it all looks good.

I’m sure they meant.. DON’T¬†try to come and see him again!

But I think that I WILL try.

All BRAIN SURGEONS just need to be visited on a regular basis, right? They want to observe the good jobs that they completed successfully? RIGHT?

I went ahead and set up another appointment for late next year, even though they said that I do not need to come back at all. But, then again, don’t you think I should go ahead and KEEP TRYING¬†until I see him? RIGHT?

Is he going to stay around the office just to see me? ¬†….a year from now?

Mmmmm…. maybe. I’ll find out then…

Two Hundredth Blog Entry??? (English)

Really? Two Hundred (200) entries have been done within this blog? Really? Really? Really?

Wow… That’s a few. Yes, I would like to thank that between-my-ears thing that has taken hours to put this together. To tell those items what to do. A Brain. That’s correct, I’m typing about MY¬†BRAIN and that is what this blog was started for, if you didn’t know.

You “newer follower people” out there (I actually know there is), I run this for my brain surgery. Check the very beginning of last year. You’ll see me… before the surgery and then… well… after the surgery….

Just go read the dang thing!

Today it is just this thankful life that I live. Have a house. Volunteer at a hospital. Have money from the government.

Life is good.