Adios Magic Scarf

Today marks the end of a significant time in my life. The passing of the magic scarf. Yeah, it's only make believe but it's the connections with the others that's so special. When I first found out I had a tumor I searched the web for any information I could find. That's when I found the ANA discussion forum (where the scarf travels through) and I knew that I found the right place for answers. To be able interact with real people who are heading for surgery or have already gone through it and are willing to share their experiences with others is invaluable. It's a very special forum with very special people. Amy and Cheryl were the first two that I met on the forum and they both had the magic scarf during their surgeries. Little did I know then that Dennis would receive the scarf from Amy and then hand it off to me. I thought it was a chick thing until Dennis took possession of it but I'm glad he did because I got to meet him, then Tammy and Jay when it was my turn to hand it off. Hey, no homophobes here.

This is wear the handoff takes place. A very special place I might add. This is a view of St. Vincent's Hospital taken from the House Ear Institute. You can see the back of the memorial of Dr. House (the real one) looking towards the hospital.

Well, this is where I part ways with the magic scarf. I have had it since November 13 (much too long) and was ready to pass on to the next person, Tammy. I first wrote Tammy around October 29 on the ANA discussion forum and we stayed in contact throughout my surgery. I knew soon after that, that she was the one I wanted to pass the magic scarf to and I was very happy to hand it to her in person. That was one of the most emotional hugs I ever felt. She is a very sweet lady and Jim her husband is a very nice man. I really wish the best for the both of them.

Here's the L.A. group with Tammy and myself. From left to right Lainie, me, Tammy, Nancy and David. This is the most incredible group of people who care about others that they've never even met. They give their own time to meet with others before surgery and answer any and all questions that they might have heading into surgery. They did this for me before my surgery and it was invaluable. They give you all the confidence you could ever want and take away a lot of the anxiety you feel going into surgery. Tammy really looks good with that scarf around her neck. I sure the magic will work for her.

This is Jay, another that I have come to know through the ANA discussion forum. He is here to have surgery Wednesday at St.Vincent's and we were able to meet him (and Tammy) between their testing appointments at the House Ear Clinic just across the street from the hospital. I just caught him as we were leaving for this photo. Unfortunately we could not get the full group shot. Tammy and Jay's appointments were overlapped and we couldn't all get together at the same time.

Well as I write this Tammy is in surgery and I'm wishing her the best. She and Jay are using the same surgeons that I used Dr's Brackmann & Schwartz. The best in my opinion.

Jay's surgery is tomorrow and I wish him the best also. I will be constantly thinking of you two and will be anxiously waiting for any news about your recoveries.

Until next time.

Mike

Well maybe a few days isn't enough to notice any difference. Guess I'm getting impatient. Any how I thought this photo comparison is relevant. This photo was taken 11-19, 3 days after surgery. Face was working fine.

This photo was taken today, 19 days since surgery. Face not working fine.

I'll guess I'll wait until there's a visible improvement before posting anymore photo's.

As for other progress, I would say that there's little if any improvement. Starting to taper off steroids, sleeping more but still not normal. Pain is all gone. I'm still feeling weak and because of my delayed facial weakness, my eye is still not blinking. This is my biggest complaint because it causes a few other related problems with my vision and balance.

Patients.

Mike

December, facial progress

Goodbye November 2009, that's one I'd like to forget. Well I came up with this idea of posting a photo of my ugly mug every few days to see the progress of my facial nerve. Today I feel more sensation in my face. I seem to have a little more control of movement of my smile (mouth in particular). My eye still does not blink and both eyes still do not want to work together. The area on my tongue that has no taste is very small now and I can feel my cheek move when I try. I'm doing a lot of walking about a mile this morning and hopefully another later on today. My balance is at about 70% of what it was before surgery. The steroids are keeping my appetite way up and I'll eat anything. Slept about 3 1/2 hours last night but I don't feel tired. I usually take a nap. I laid on the new hole in my skull last night for the first time. It felt good to lay that way again, no pain. My head is still swollen with an obvious new corner where my new hardware is.

Out of 10 photo's this is the best I could do.

HEY LOOK! THE MAGIC SCARF WORKS!

Getting better.

Mike

By mom & dad

Things are starting to return to normal little by little. Overall yesterday I seemed to have moments where I had some facial improvements. There so subtle it's hard to say for sure but things feel as if there going in the right direction.

The eye still does not blink, and the right side of my mouth still does not raise up to same as the left. Also need finger to lip assistance for drinking or a really thick shirt.

My support group is getting smaller. My Mom & Dad left for home friday and I felt sad watching my mom leave. She was there from 3 days before surgery and went through the entire ordeal with me. My wife caught her and I saying our goodbye (good capture Pam) as she left. Thank You mom, there are no words that describe what you've meant to me through this.

A little mom and dad group photo. Sorry for the face I can't help it. I could blame it on them.

I got to eat my turkey.

It took me a little longer then normal but I did manage to eat a lot of turkey and everything else on the table. I had to eat very small pieces because the weakness in my face only allows me to use half my mouth. I'm discovering that eating slower is a good thing, it makes you enjoy your food more I just might continue to do that even if I get full use of my mouth again. Drinking's another story. I have to laugh at myself for looking like a drooling idiot when stuff comes falling out the side of my mouth. Give me a mirror and I'm entertained. I have to hold my lip against the glass or straw so I don't leak.

Well I got by a huge fear this last week. Seeing my granddaughters reaction to grandpa's strange face. She focused in on my scar first and gave it a pretty good looking over then her eyes focused on my eye then mouth. I could tell by the look on her face that she knew things weren't right. I pulled her up next to me and explained what happened, told her it didn't hurt and I would be OK. It took a while but she seemed to not let it bother her after grandpa sat with her after a while.

The face issues are tough to deal with. As long as I don't show any expression you probably would not even know that anything was different with me. The eye doesn't blink so that's a big inconvenience. At home I use a damp washcloth and mold it into the shape of my eye socket and let it rest there using my good eye to look around. Lots of eye drops and gel for night. I met a guy named Dennis who had the same surgery I had and he was telling me about the feeling of riding in a car after surgery and everything he said was exactly right. Little bumps are no such thing. The sideways forces during a turn completely twist your sense of direction, and for me the periphery of my sight also is not sitting well during motion. When I turn my head sideways while moving it's to much to look at I have to close my eye's. I think I'll try driving tomorrow.

Just kidding.

The mouth. Only the left side works. Something weird also is that I can only taste with half my tongue. Although today the tongue appears to be getting better coverage.

Remember that all this facial stuff did not start until 5 days after surgery, one week ago my first day home with lots of visitors and lots of facial movement. It got worse over the next couple of days leveled out and just seems to slightly improving. The swelling of the nerves it what the doctors say causes the facial weakness. As you can clearly see in the photo's below it's not only the nerves but the entire side of my face is swollen and that's got to have some negative effect on facial muscles.

This is the closest thing to a smile I've got for now.

You can noticeably see the swelling.

Close up if incision.

Time for a walk.

Mike

Day 7 Post Op.

Day 7 and back to my blog. That was a ride I hope to never take again.

Trying my best to be optimistic about everything I'll tell all those interested what's been going on this last week.

We'll start with my family not being able to find me until about an hour after being placed in ICU. I don't know what to think my family pacing the halls in the hospital waiting to hear anything. Well I found out they were laying around in the building next door where their room was watching TV waiting for THE phone call that they claim never came. My wife finally walked back to the ICU and recognized one of my 4 doctors and demanded to know where I was. This is when she found me.

After my discovery they all came running to see me, really. After them looking close to make sure no brains or anything were leaking they felt comfortable enough to take some pictures. I told them I wanted to document everything with a lot of pictures and they didn't let me down. The next day Pam (wife) got a really nasty cough and sore throat so she left and lucky for me my mom who came into town was their to see after me. I really have a great mom! I couldn't get enough ice chips and water.

Well I guess I did get enough when I thru-up the next morning looking at my first look at what was supposed to be food.

That first day was the most extreme difference in time that you could ever imagine. The surgery that lasted around 5 hours went by in 5 seconds. Once you get wheeled into ICU the brakes get slammed hard. 5 minutes seemed like 5 hours. I got to ICU at 5:30PM. At 11:30 PM I asked the nurse where every one was expecting to see my family when she laughed a little and told me it was 11:30 PM not AM. That was the slowest experience of time I have ever experienced.

Then came the medication. It seemed like they were putting something in my IV every 15 minutes or so. Then she (nurse) started poking my finger checking my sugar levels telling me my blood sugar was to high and proceeded to inject insulin into the back of my poor right arm for 3 more days every 4 hours. Those little b!@#$%^. Honestly the ICU nurses could not have been better they sat at my feet continually monitoring me for 1-1/2 days. Their great.

Later that evening the real adventure began. I saw 3 little kids/men in blue and white vacuum hose looking space suites coming over the corner of my bed, to later be followed by the pitch fork and kids in yurts trip. I'll stop there. When things would get too out of hand I remember laughing, opening my eye's and seeing this.

The dreams dissipated with time but last night my brother in law & I were at a house that got raided by the cops.

Hey, get one of these. I guarantee they will beat any hallucinogenic hands down.

The view out my window was fine but the view into my window was better. Hollywood Hills.

Food! This was my final gourmet diner served at my West LA suite with evening views to kill for.

After diner "THE A TEAM", Dr's Brackmann and Schwartz came by to see me one last time before they sent out to the streets. Although we were all disappointed by the loss of my hearing in my right ear, they were happy to tell me that everything had gone great. and I could go.

LET"S GO!!!!

Home!

Today I got my stitches out. While there we discussed the issue of my face not working right. Well come to find out I'm having what's called delayed weakness because of the nerves swelling. Banking on what the Dr's are saying, they say I should expect a 100% return of full facial function. They gave me a 3 on a scale of 6. 6 being the worst. So Now it's mega-doses of steroids for 2 weeks.

Loose screws removed, 6 new titanium screws tightend.

Mike.

The Big Day

Hello everyone. Its the fill in for Loose Screws giving everyone the update. Sorry for the delayed post but I couldn't access the Blogger from the internet at the Seton Hall. Here is a picture of L.S. himself with his L.S.jr. The apple seriously didn't fall far from the tree...





So, we show up at the House Institute so my dad can get the admission package to be admitted into St. Vincent Medical Center. He gets the package. We go across the street to the hospital, he gets admitted. This is us in the waiting room.






We are able to spend about 45 mins with him because they were able to bump up his time to go in by an hour. We wheeled him up to the pre-op room where one of the docs (can't remember his name...) asked him a series of questions and gave him the option of carrying out with the operation or running out the door.



My dad agreed to go threw with it. So he proceeded to put his gown on and get all those nifty I.V. tubes in and was ready for action. I could tell he was scared but hey, who wouldn't be when they are about to have pretty much brain surgery.








Here is pops with the famous Magic Scarf. I could only imagine what was going threw his head.









So, the operation went well. Its hard not to think of all the wrong that could happen. You think up all these things and then when you find out he's done, nothing is wrong! I mean he can't really hear out of his right ear but hopefully some of it will restore. Here are some pics of pops post-op.






Thumbs up. That must be a good sign. He was already cracking jokes the next day. Here's some other pics of the gang.





So everyone, that's as far as it has come. I thank you for all the prayers and phone calls we have received from everyone. Stay tuned for another update-