The day started early. I woke up at 6am and exercised, then headed over to Mom and Dad's house. Mom and I headed out to Nashville and Vanderbilt. Mom drove for about 45 minutes and then told me she could not wake up, so we pulled over at a rest stop and switched places. I drove the rest of the way to Nashville and she dozed off and on.
We arrived at Vanderbilt with 20 minutes to spare.
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| Don't worry. I wasn't driving when I took this picture, Mom was. This is actually on our way home. |
Mom decided she needed caffeine and was going to go next door to the Dunkin Donuts and get a coffee and said she would meet me in the waiting room at the neurologist's office. After I parked, I sent a text to a co-worker and put on lipstick. And then...I made, by all accounts, a grand entrance into the neurologist's office, thereby solidifying my need to be there. I also just wanted everyone to know I was there! Haha. :) After going through the first automatic door, I didn't hit the "handicap accessible" button on the side of the next door, which wasn't an automatic door unless I pushed the "handicap accessible" button. I thought, I've been opening doors for 11 years now while steering the walker, I can do this! Obviously, I couldn't. ;) I opened the door, but I had a bunch of folders (medical records) and the box with my DBS remote control in it laying on the walker and well, they all just slid off, causing me to run my walker into the side of the door, and then I kind of tripped over my own two feet and well, I made a loud, grand entrance!! The ladies behind the check-in desk asked if I was OK. I just had to laugh and they started laughing too. I mean, it was the ONLY thing I could do. Thankfully there were only 2 other people in the waiting room.
I checked in and then asked if I could use the restroom and promised I wouldn't trip or fall. :) I mention the whole bathroom thing because, as I was washing my hands I noticed a sign next to the mirror that was one of those "please make sure you wash your hands" signs but it listed when you should wash your hands (after you touch a doorknob, after you type on a computer...), but someone had written in "after you touch money". I wanted to take a picture of the sign, but it was at this moment that I realized, I left my cell phone in the car. As I was walking back to the waiting room, I ran into (not literally this time!!) Mom. I went back out to the car and retrieved my phone. It was only a few minutes after I got back in the building that I was called to go back.
I first had to get all my vitals taken. I gained a couple of pounds. This was on purpose and I knew that I had because I had gone to see my nutritionist yesterday. I had lost a total of 5 pounds in February when all the surgeries took place, so I needed to gain some back. :) I got my blood pressure taken (131/69...still high for me on the upper one) and temperature taken and then was led back to the exam room.
The neurologist came in, but it wasn't Dr. T. He introduced himself and asked if I remembered him from the awake surgery. I didn't at first, but after he talked for a minute or so, I did! He was with Dr. T. in the surgery and he was the one asking me all the questions during the surgery. I recognized his voice!! I told him that I have extremely poor eyesight when I don't have my contacts in or glasses on, so I didn't really recognize him by sight (plus he had a mask and surgical cap on during the surgery), but I totally recognized his voice! He was the one asking me to say weird phrases like "the quick, brown fox", asking me to smile, and asking me how I felt. He was the one I told when my hand and arm went numb. So, yes, I DID remember him. His name is Dr. I. He said he was going to activate and program my DBS system and teach me how to use the remote control and then Dr. T. would be in to finish the appointment.
Dr. I. asked if I was having any problems. I told him about the incident I had two weeks ago (to the day) where my hand and arm went weak, tingly, and became heavy. I told him it was almost the same feeling I had right after the surgery. I couldn't move it. He asked if it were a gradual thing. Meaning, did it start in my hand and move to my arm (or vice versa) or did it hit both my arm and hand at the same time. I told him that it hit my hand first and then moved to my arm. I asked if that was a good or bad thing. He said it was good. I told him about the tingly sensation I had right above my left lip and in my left thigh. He explained (as had Dr. K., the neurosurgeon) that the initial spot that they drill into in the brain sometimes gets inflamed and causes those symptoms. He also said that healing from that inflammation is not something that just keeps getting better and better. Sometimes, there is a backslide. All this information made me feel so much better. He wasn't concerned about it. He asked how my hand and arm were doing and I told him much, much better. He did neurological tests (squeeze my fingers, don't let me push your hand down....) and could tell it was much stronger. He made me walk down the hall (with my walker) so he could get a baseline on how I walked before turning on the device.
Then the fun part started! He activated the battery that's under my left collarbone. He did some testing of it. The electrical probe that is in my brain has four notches (or levels) on it. They are labeled as 0-3, with 0 being the deepest point in the brain and 3 being the closest to my skull. I ended up being smack in the middle at a level 2. As he was testing, I had some reactions in my hand where the electricity was "pulling" my fingers together without me doing anything. That level, he said was at 3 (if, I'm remembering correctly...he was talking to Dr. T. when he said this.) The pulling in this case was not good, so he adjusted it. My palms were sweating during all of this and I kept apologizing to Dr. I. I think I was just nervous. I told him I felt like I was about to be electrocuted or something. :) He was totally cool though. He and I started talking about our families. It turns out he is the oldest and has three younger brothers too. One of his brothers is a pharmacist, one is an accountant and one is in medical school. He isn't married (or didn't have a wedding ring on) and was kind of cute. Mom thought he was about my age. ;)
Anyway...back to the actual medical stuff. Dr. I. reminded me once again that I probably won't see any results for another 3-6 months. In fact, after he programmed the device, I told him I didn't feel any different. He said that was normal. After he got it programmed, he taught me how to use the remote control. He set the remote to a 2.00 parameter. Then he showed me how to increase or decrease the parameter. I have to increase the parameter by .10 every week. Only .10!!! I asked if I could go higher and he said no. I have to go slow in increasing it. I begged to go faster, but the answer was the same: no! He said this is for a few reasons: they want to be able to see any progress from one parameter to the next, I could have adverse reactions if I go up too quickly, they want the lowest possible electricity to be able to help me and they won't know the lowest parameter unless they go slowly in increasing it. He had me try to program the remote and I did. He told me that I could keep it at 2.10 (to which I had programmed it), so I was already ahead of the game. Ha! He thought that would make me happy, but I still wanted to go higher! :) But, I guess I'll take what I can get, so I'm starting at 2.10. He had me walk again in the hall with the walker, just to make sure there were no changes (good or bad) and there weren't.
Dr. T. came in after Dr. I. was done. Dr. T. asked me how I was feeling and I told him, I was feeling a thousand times better then when I last saw him (in the hospital right after puking and not being able to move my arm). He asked me if I was having any problems and I told him no after I had the little scare with my hand and arm. I told him that my hand and arm were almost back to normal (I'd say they are 98/99% back to normal.) and he again did neurological tests and was satisfied with my progress. Actually, he said, "Wow, you are strong!". He asked Dr. I. if he had looked at my head incisions. Dr. I. had not. So, Dr. T. asked if he and Dr. I. could take a look at them. This meant, I had to remove my wig, but they had seen me bald before, so I wasn't embarrassed or anything. Plus, my hair is growing!!
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| One month after the last surgery. Front view. |
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| One month after the last surgery. Back view. |
I have to say, one reason I love my Mom coming with me to my doctor appointments and surgeries, she speaks up when I don't! When Dr. T. asked to see my incisions, she spoke up and said that I was supposed to have a wound check with Dr. K.'s nurse practitioner at 2pm, but could we get that done now and not have to come back hours later. Dr. T. agreed with her that it was silly for us to come back at 2pm and went and got the nurse practitioner right there and then. It was Veronica, the one who did my Baclofen pump spinal tap trial and the one who put the screws in my head during the first surgery. It literally took her all of maybe a minute. She said that they were healing wonderfully. I told her (as I had already told Dr. I. and Dr. T.) that the battery under my collar bone was "achy". She asked if I remembered if Dr. K. had put the battery under a muscle or not. I told her that he did. She said that's the reason that it feels achy. She said it could feel like that up to 6 weeks after the surgery because every time I move my arm, it's effecting that. But she said the achiness will go away eventually.
After the neurology appointment, I had to get a CT scan done, just to make sure all the electrodes and probes and batteries are all in the correct place. Dr. T. said that if there were any abnormalities or anything of concern, they would of course call me. I had to wait the longest at the imaging place. They took me right back, but then it seemed like everyone was going before me (even people who were brought back after me). But they had HGTV on the TV, so I just watched it. :) You think I could say I was working while watching it?! I mean, I do work for HGTV!
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| HGTV in the waiting room. |
The scan itself took less than 5 minutes. It's amazing though to me how God works everything out for HIS good. I found out why I had to wait almost 45 minutes to an hour for my scan and it had nothing to do with me. It turns out, Mom struck up a conversation with a guy in the waiting room whose wife was just diagnosed with oral cancer. She had a very good conversation with him and then when his wife came out she had a very good conversation with her. Mom said that near the end of their conversation, she told the lady that she would pray for her. The woman responded with, "You will?!!" She was so happy. Mom said that the couple hadn't been gone 5 minutes, when I came out to the lobby and announced I was done. You can't tell me that God wasn't in that!
After the CT scan, Mom and I walked to Fido's Pet Store, which is actually a restaurant. I kid you not. There used to be a pet store there, but the restaurant owners never changed the name when they bought the building. Mom and I had been there once before with our friend Michelle. This time, when we went there, I made SURE to use the correct restroom. Yes, I'm confessing that the last time we were there, I went into the men's restroom. Not on purpose, but they don't have signs saying "men" or "women". They have a picture of a dog on each door. I found out the embarrassing way last time that I went in the wrong one. It was only after I did that that I noticed on the women's bathroom door the dog is wearing a skirt. So, I redeemed myself this time around. Sheesh! Mom and I split a salad.
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| This is how the waiters know which table to bring the food to. |
After we were done there we crossed the street to get macaroons at our favorite spot, Provence Café. I got raspberry and Mom got peach. The lady behind the counter (to whom I've seen every time I've been there) exclaimed, "I love your hair!" And for the first time, I just smiled and said, "Thank you.", not even bothering to mention that it's a wig. I'll take a compliment wherever I can get it. :) And, I've come to the conclusion that my fake hair is prettier than my real hair. Ha! Actually, I'll be very, very happy if my real hair comes back curly. I miss it! On our walk back to the car (the weather was GORGEOUS!) we browsed little shops.
We got back to Knoxville at 5:30pm (eastern). It was a full day, but a good day!
The next step is for me to go back to work. Ha! Yep, I'm returning to work on Thursday, March 31. Co-workers, prepare yourself!
As for the next step deep brain stimulation related, I have to increase the electricity in the electrodes in my brain by .10 parameters every Tuesday. This is done with my remote control. Then I just have to wait, watch and see if anything happens or improves. I go back to see Dr. I. and Dr. T. on May 3. They will assess and see if I'm progressing any. They may have to go to another spot on the electrode (I'm at 2, there's also a 0, 1 and 3 that I may need to be switched to). Again, they would do this with a magnet. It's non-invasive.
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| My remote, a holding case for it and the device I use to lay it on my collarbone to adjust it |
It's wait and see. If you live locally and see me on a regular basis, you'll still see me with the walker and/or cane for awhile. I want things done before I know I want them done. But (unfortunately for me) this process takes time. I've waited 11 years, I guess I can wait 3-6 months!
I have to admit that I did have one instance of self-doubt today while Mom and I ate lunch. I asked Mom, "What if no level works?" She didn't really have an answer. Later on in the car, I was talking to Dad on the phone. He asked if I was confident that it would work. At first, I said yes, but I said it hesitantly. Haha. Then I said no. But then I conceded that the doctors were confident, so if they are confident, then I will be too. I do have doubts, but I have to put my trust in the Lord. I also have to remind myself that I was very skeptical of Dr. K. when he said that as soon as the inflammation around the surgery site went down, I would get the use of my left arm and hand back. But guess what?! He was right!! I will trust that both the Lord and the doctors know what they are doing. :)
God's Got This - in that, I have NO doubt!!
What a wonderful blog! You are so good with details I feel like I was with you. Still covering you in prayer, beautiful one!
ReplyDeleteThank you!
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