Wednesday, March 27, 2013

Some Chiari photos

In Pre-Op holding.

At Memorial Hermann -1 day post op

At home with my new friend...Bob and I call him "Monkey-Dog"..I have no Idea why!

The Zipper is covered..9 days post op

 Bandage removal, 10 days post op....YEEESH...NOT ATTRACTIVE..all I need to add is bolt through my neck.
March 26, 2013

I'm having a pity party...AGAIN!  This morning while doing dishes, my 3 fingers on my left hand went numb, followed by my palms and the lateral aspect of my hand and wrist..and the left side of my face. I knew the sensation in my face was off the past few days..but now it's obviously numb everytime I blink or move my mouth.  I dropped a pan and broke one of my favorite antique decanters. (I dropped the pan on the counter, pan hit the decanter..decanter hit the floor.:)   Breaking things always makes me's sort of a PTSD leftover..however, I've been unsuccessful in stopping this ridiculous crying.  I've put in a call to my NS and already have an appt with Dr. H today.   I know I'm overreacting.  I am sure this is another come and go thing..I'd just really like it to go..all of the Chiari symptoms need to just GO!!!  
I'm frustrated and I just want a small slice of normality with a side of  ordinary.  Nine weeks post op tomorrow...and time to be finished with this.  Of course, this had to happen on the day I see Dr. H. Which is good because I already had and appt set..not so good bc he is evaluating me for return to work today.   I will let you know what happens.
March 25, 2013

Just got back from PT. Neil says that if I get the okay from Dr. H that we can start strengthening next week. :-)  I'm so excited.  I feel like I'm actually making progress.  Today Neil did all muscle work and says that I look "so much better".   I can tell my energy level has improved. I stayed outside with Bob all day yesterday, I even trimmed a few shrubs..look at me go!!!   We were very thankful yesterday to have a helper show up. Our friend, Wayne insisted on coming to help. He brought along his six year old son. I was so glad for Bob to have help with mulching and all of the heavy work (Thanks Wayne, we so greatly appreciate your help).  I sat on the ground and trimmed a few shrubs. Later in the day,  I had the following conversation with Wayne's son:

"Hey Michele, you wanna look at the hole I dug, It's really deep."
"Sure I do, can I look in a few minutes when I'm finished? I don't want to get up and down too much"
"Why not? It's just right here."
"Well, I had surgery on my head and getting up and down can make my head hurt, I don't want it to hurt so I try to not get up and down too much. I'm almost finished...give me just a minute."
Orin comes over and looks at my face and head from the front, "Your head looks okay".  I laugh, "that's because the surgery was on the back, Do you want to see the scar?"
Orin looks hesitant but says, "Um, okay".
I act like it's no big deal, turn around and raise my ponytail..Look back at him and say, "See--isn't that cool?!!"
He looks at me like I'm an alien and says, "Not really"..
He turns to go back to his digging and under his breath says, "It looks kinda creepy".   
Of course, I laugh and finish my work..then go over and check out his digging skills. 
A few minutes later he and I decide we will be better help if we go lay on the chaise lounge for a few minutes and rest.
As we both settle in, I close my eyes and he says, "Hey, you know what?  Your head really does creep me out". 

I laughed and laughed.   Everyone says, "Oh your incision looks SO good." 
Leave it to Orin to be honest..lets face IS creepy, it's like a zipper in the back of my head. It will never be attractive. No one will ever look at the back of my head and say, "My, what a beautiful head!"  I will never be a head model...and the Sinead O'Connor look (should it ever come back in style) will never be a good look for me..LOL! I'm okay with this...and delighted that Orin had the moxie to say it out loud.  Thanks Orin!

Just thought I'd share that with you.  It's time to rest for a bit today, between yesterday outside and PT this morning, my body is asking for a break. So, have a happy Monday and remember today's life lesson: Don't ask a six year old what they think unless you REALLY want the TRUTH!
March 24, 2013

It's Sunday morning. I'm alone in the house, listening to its silence. Today, I can hear the birds outside...a gift that comes and goes. I can even hear the wind. It's sunny outside and we have a full day of continuing to get the house and yard ready. Our wedding is only twenty days away.

 I had my final dress fitting yesterday.  My last fitting was the week prior to surgery--and it was so nice to see the staff at Georgio's. They are so great..and were so impressed that they didn't have to help me stand and change this time (last time I was so dizzy I could barely function--and stepping into that dress I almost fell down!)  Little things like that remind me how fortunate I am to have found Dr. Kim and get the help I needed. 
March 21, 2013

Yesterday, I said out loud, "I feel really good today, it's like a normal day"..within minutes a mild Chiari headache hit. (it's like the Chiari has ears)  It waxed and waned and eventually went away. Then Bob and I made a trip to Lowe's and Home Depot.  Stores like that remind me how big the world is...and how fast it moves.  I'm not on the same wavelength as the rest of you just yet. It's frustrating.

PT was earlier today.  Today we did all "muscle work" that means painful touching and muscle manipulation. My head and neck muscles have been burning ever since (that was 4 1/2 hrs ago). I was a little freaked out that we did this one exercise where, with Neil's help, I had to make a square (like physically move to the four corners of the square) with my shoulder.  While laying on my side, Neil slightly lifts my shoulder and  we rotate to the four corners, five times in one direction then five times to the other direction. The freaked out part came because I was thinking about the movement, but felt Neil was doing all of the moving. My brain could not make the connection He said I was doing most of the work, but you know how it feels when your hand is asleep and you move but it doesn't feel like you move? Yeah-that's it, but with no tingling..just no feeling at all.  So this is the beginning of "muscle retraining" and it literally brought me to tears.  I have a few weeks of this then will go on to strengthening..(I was like, "You mean we aren't strengthening yet?") Apparently, all we've been doing is trying to get my brain, eyes and muscles to communicate while waking up the muscles. Wouldn't you think that pain = awake?  Anyway...that's the way the day has gone.  I've gone from feeling great yesterday to feeling like I'm way behind today. I know, you don't have to say it...I need to stay positive...and I am...I just need a few hours to whimper a little, lick my wounds..and then I'll get back to business.  

 My goodness..What am I saying???  I'm getting married in 23 days..there's no time for wound licking! There is no time for whimpering! ( I can just hear Tom Hanks yelling "Are you crying? There's no crying in baseball !!" --and if you haven't seen that need to)- What am I thinking???  There's no whimpering or wound licking in wedding planning!!!  

So, anyway..I'll check back in a few days from now. Thanks so much for your continued prayers and support through this process.

 **Almost daily I learn of a new person or persons (many of  whom I never expected) following this journal AND praying for me. Then,  I am dumbfounded. Such undue kindness from so many. I can't wrap my mind around it. Please know, I am exceedingly grateful for each of you. 
March 19, 2013

I couldn't sleep Sunday night, I was up at 2:30 a.m., prayed for an hour or so...tried to go back to sleep...prayed some more..finally got up at around 3:50 and read until 5:45.  Never could get back to sleep. PT was at 11 a.m., got through that then came back home and napped for an hour or so. Needless to say, my sleep pattern was a bit askew.  So last night, I took a Vistaril before bed and even slept through the alarm this morning--which I don't think has happened to me in about 20 years.  So now, I've got lots of energy, which is good, because there are many things to do around here....Little wedding details that only I can take care of, household chores, errands, etc. I'm working on a final head count for the caterer..and let me just say..I will never forget to RSVP to an event again (I'm not sure that I ever have forgotten...but after this wedding..I ABSOLUTELY will not ever forget), working on a song list for the DJ, working on ceremony details, and worst of all--still working on the layout for the backyard. Most of it I can do right here with a pen and paper, or my laptop...there is just sooo much of it.  Today I am headache free, and praying I stay that way. 
For those of you wondering, Melissa's surgery went well. I exchanged texts with her husband last night and she was in recovery doing great. Thanks for your prayers for her.
Also, we found out last night that our sweet Alan (family on Bob's side) will have open heart surgery on March 29 (in Florida). Our thoughts and prayers are with he and Kitty as he faces this surgery.  In Alan's words, "Nobody is to worry, panic or otherwise get discombobulated"--so we won't do that..we will pray and trust in God. Alan has a great spunky spirit that I love.
This has turned in to a long post...(I am just one of those people that has a lot to say) I will close. 
7 weeks post op.Another weekend of wedding preparations. Once again, I did a lot of cheerleading. Besides positional headaches and erratic muscle spasms, the weekend was pretty uneventful. I still feel totally exhausted with minimal activity, but that does seem to be improving daily.  I have PT today. I'll be anxious to see my level of improvement since last week. :-)
March 15, 2013
Yesterday I felt normal all day! YAY! Besides being really tired a few times and having to rest, it felt like a regular day. Bob and I even went out to dinner last night, sat on the Brazos waterfront and ate raw oysters...YUM!  To be honest, I didn't do alot yesterday, just laundry, dishes, ran a few errands..but it actually felt good.  Today I woke up with a slight headache, and it's hanging around, but it's not bad at all.
I'm so excited to feel like I can accomplish a little more everyday. We have another busy weekend of wedding preparations. Our backyard looks a little like a war zone right now. Hopefully, I'll be able to help out more  than last weekend.  I'm sure Bob hopes so too. I have to say he is the most patient, accomodating, wonderful man. I'm so fortunate to have him in my life. 
So, enjoy your weekend. It's going to be in sunny and in the 80's here in Waco--I will check back in next week.
March 14, 2013

Yesterday was a beautiful day. I felt relatively normal until the afternoon when I decided to go outside and move some limbs Bob previously cut and I attempted to plant a few things. No, No--I didn't use a shovel, it was a sit on the ground and dig with a hand tool kind of thing. It lasted about ...oh..15 minutes.  Then my head was pounding and I decided to leave it for another day.  I have to say it was nice to be out there, in the sun, with the earthy smell of grass and dirt. It made me really miss my old garden in Mississippi.  This little outdoor excursion sparked a mild headache that lasted a just few hours (I took meds early on this time, Bob made me). -Thank goodness it was NOT a Chiari headache.  Chiari headaches are unlike any other headache. They aren't like migraines or sinus headaches. They are distinct, in the back of the head and radiate forward, pulsating. Usually, medications aren't very effective. I wonder what the inside of my head looks like right now. I think my MRI should be scheduled at 8 or 9 weeks post-op and I'm anxious to see it.
 March 12, 2013

Good Morning!  We had a good weekend. Bob has lots to do in the yard and around the house before the wedding. I did a lot of supervising. I'm not a huge help these days, but I am a good cheerleader. Somehow, I'm staying exhausted, I must be doing more each day, because my body aches so that I can barely move it each night. However, I feel pretty unproductive.  Yesterday, Stefanie picked me up and we had lunch at this cool little place in the worst part of town, World Cup Cafe. It's proceeds support Mission Waco. It was nice to be out and kinda normal again. After that I had PT, which means painful touching and laser exercises and I was wiped out by the time I got home. I got the okay from Neil to use the laser at home. So, I'll take today off and laser tomorrow. He said I've got a seven degree improvement in the rotation of my neck, about a ten degree improvement in bending my head forward..and in bending my head up, like to look up..he said, "Well, you still suck at that".  Gotta love an honest answer!  No more PT until next week. Just laser at home once every other day. I'll post a picture of my laser board. I probably will NOT post a picture of myself  with my very attractive laser headband on.

Have a great day..I'll check back in later this week!  

Friday, March 8, 2013

Written 1 hour ago by Michele Robinson (Duffey)

To catch you up to speed...since I am copying and pasting much of this from my CaringBridge--I've had 3 Chiari headaches this week. You Chiarians know what this is without description...and these are my first ones since surgery. It has to be related to PT, that's my thought...and this is the post I just put on CaringBridge. 
Dr. Kim's office called back. He agrees with me that this is all most likely normal and said to give it 2 weeks, if I'm still having the new headaches we will investigate it further then (now, it could just be me, but did he pick that time frame because he's leaving tomorrow on vacation for 2 weeks...I'm just sayin').  PT went well, we are laying off the laser work again  until Monday, so there was more of the "painful touching", but it was fine.  I read the following post-op info from Precision Neurosurgery Austrailia, it made me feel better--I guess I'm just expecting too much from myself :What is “normal” after a Chiari decompression?
The following are common problems encountered by many patients, and usually do not mean anything serious is wrong:
  • Headaches: these are usually present daily to some degree, and may persist for a number of weeks. They will change in their location, character and severity as the bone heals and the scalp nerves regenerate.
  • Neck pain: this is the most common and bothersome symptom after a Chiari decompression. It usually responds to anti-inflammatory medications and small doses of muscle relaxants, and tends to settle with time. Some gentle physiotherapy commencing 4-6 weeks after surgery may be beneficial.
  • Numbness: this is common, and arises because the skin nerves have been cut. The area of numbness usually decreases over weeks to months, but sometimes does not disappear completely.
  • Concentration: this is usually impaired for weeks to months after craniotomy. It is common to find difficulty focusing on tasks, you may need to re-read information in order to retain it. These symptoms tend to get better with time.
  • Emotional instability (lability): you may experience irritability, depression, crying spells, anxiety, and sensitivity to noise or people in crowded places. Try to relax and take it easy. Spend more quiet time. If you have major problems with these symptoms and cannot relax, call us and we will arrange for you to see a Clinical Psychologist to receive some strategies to do so.
  • Tiredness and fatigue: these are very common, and gradually improve. Once you commence a regular walking program, you will start to feel more energy.
It is common for it to take up to 3 months before you feel “well” again. Have plenty of rest during the day and eat healthy foods. Do not drink more than a small amount of alcohol during this time. Get up at your regular time and get plenty of sleep. Your internal clock would have been severely deranged during your hospitalisation, and it takes some time to return to normal.
I remember reading this a few months before surgery, I guess I just needed to remind myself that I'm not just an underachiever, it takes time. 
So with that, Have a great weekend. I'll check back in Monday.
Written Mar 4, 2013 7:11pm by Michele Robinson (Duffey) -moved from CaringBridge
PT was so bad today that I've literally been on looking up words to use to describe my physical therapist. Maybe I should call him, "The physical therapist formerly known as Neil" because I really want to call him a masochistic, truculent, torturous Nazi. It was an hour of some scene from a Medieval dungeon (except for the headband with the laser pointer on dungeon ever had such a weapon). He started with craniosacral therapy...which can better be described as "painful touching" of my neck and shoulders. When I could take no more, he plastered the headband with the laser pointer on my head and made me follow dots on a board on the wall, back and forth, up and down, and these crazy hyperbolas in strange directions (granted, none of these movements moved my head more than an inch in any direction--but I think it was still evil). Then, when he saw I could take no more, he said, "That's enough for today, lets do a little electrotherapy before you go." (Gee, thanks Neil..way to show some sympathy.) He started my electrotherapy for 15 minutes, however, since I had tears in my eyes after the first 5 minutes, he kindly cut it back to 8). He said to "hang in there"...this is necessary to get to where I need to be.   So, needless to say, I came home, crawled into bed, medicated myself...and here I am. I'm so sore I can hardly bare to move my arms, neck and head, I don't even want to move my mouth to talk. So that, in a lengthy nutshell was my PT experience today. Go me.

Friday, March 1, 2013

I'm very thankful that Neil (physical therapist) is so well read on Chiari. We talked yesterday about the uniqueness of the disorder and the scarcity of knowledgeable physicians, therapists, etc. I felt like a science project and he was like a kid in a candy store, soaking up everything I told him about every symptom, my history, surgery, etc. He got my blog address. He was very encouraging..saying, "You know, you need to write a book"..I said , "yeah...been working on that". So I came home from PT with a headache, but still did my home exercises. I showed Bob my exhausting exercises when he got in last night. He's like.."Is that it?" They go like this: I glance as far left as I can, hold it and think about turning my head left, but don't. I hold it for a couple of seconds then look back forward. I do this ten times, then do the right side. I'm supposed to do this five times a day. Easy right? the second glance, my eyes hurt and by number whole head hurts. So I take a break then go to do the other side. It's ridiculous how this wears me out and hurts like the dickens. Fortunately, the right side is much easier to get through.

So, I had an emotional break down after I got home from PT. Then another one on the phone with Bob. His brother-in-law, you may remember, had open heart surgery the Friday after my surgery. He's an orthopedic surgeon and he's already working 1/2 days 3 days a week. Granted, he's overseeing a resident and not doing much actual surgery..but come on! I'm happy for Jim, I want him to be well...I just had a big pity party for myself...I just want to be normal. I want this to not be so hard. I know that doesn't sound very grateful, I'm just being honest. My entire life it's never been.."Oh, you have a normal health issue that we can fix", it's always been, "I've never seen something quite like this, hmmmm". I know that's what Chiari brings to the table, a lifetime of odd, unique and painful. I know this because we Chiarians flock together. We are bound by the same lack of normalcy. I get texts all day and sometimes into the night from my Chiari sisters, not because I'm some Chiari's because we strive to simply feel normal. Just having someone, anyone, whether they are in Texas, Oklahoma, Colorado (you ladies know who you are), and whether you've met face to doesn't matter...its just having someone on the other end say, "Yes..I understand, I get it and It's okay."

Okay..enough despair. I got it nothing but positive thoughts for the rest of the day for me. Maybe it's the seclusion I've lived in for the past 5 weeks...maybe it's the wedding stress getting to me...maybe it's the fact that I have no patience with myself. Whatever it is..I'm just an multifarious conglomeration of emotional goo. And I have no idea why you would come back day after day to read my wretched ramblings..But I thank God that you do.

Have a great weekend!