headsaga

Trailer

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Tue, 03 Jun 2008 17:54:00 +0000

Do I dare be hopeful ?

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Sat, 31 May 2008 21:29:00 +0000

So far the long headache is in check. We are both afraid to declare victory, and Dr Oro said I lost a significant amount of CSF and expected me to have a CSF headache, but so far the headache itself is way down and though we don't want more disappointment, so far so good. I can probably go home tomorrow. TTYS. Sharon

Sent via BlackBerry from T-Mobile

A day in bed

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Sat, 31 May 2008 04:27:00 +0000

The day was long and boring with Sharon restricted to lie flat in bed. The nurses were wonderful, and kept her fluffed and rolled, and kept the pain at bay pretty well. This hospital ranks up there with the very best, in Bobby's opinion. The day was long and boring, and there fore the video is too.

Tethered cord no more.?.?.?

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Fri, 30 May 2008 07:37:00 +0000

Sharon underwent surgery to disconnect her spinal cord from it's connection to lumbar 2 via a small band known as the filum terminale. Her film terminale is terminated. Snipped. Fine'. There was a considerable amount of snapback, indicating that there is a GOOD chance that the underlying cause of her brain stem elongation is no more, or at least reduced. Now to wait and pray. She was just out of recovery when I saw her briefly around 9:30 pm.

Posted by Bobby, the husband at 1:42 am Denver time.

Ps, thank you so much aunti Do for the ride, and to mom, dad, Katie, and my sister for being there. Love you all. Thank you to the greater Chiarian Family. We love you all as well.

Counting Down the hours

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Thu, 29 May 2008 01:44:00 +0000

Today I:
Had an eye exam
Ordered new glasses
Saw Dr. O and signed consent
Did pr e-registration at the hospital
Had blood work
Packed over night case; and
Met a very sweet lady from Oklahoma who will be on Dr. O's table just before me tomorrow.

I think I am finally ready.
Sent via BlackBerry from T-Mobile

Surgery - Round 3

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Wed, 14 May 2008 03:41:00 +0000

So I saw world famous Dr. O yesterday. My brain has shifted into the space made last year basically absorbing all the room created to allow free fluid flow. Doc says this is not too much to worry about in itself as there is less brain compression.

After my 1st flow study and 12th or so MRI, the word is more surgery. This time for Tethered Cord. As with many things he has developed a method of his own. The incision should be only about 1 1/2 inches long. Just about 3 days in the hospital, luckily here in my home town.

It has been a very long day so that is all for now, but I will try and post more in the next few days.

Shout Out for DH

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Tue, 25 Mar 2008 21:37:00 +0000

I would like to send a big Shout Out to Dear Husband (DH) for his assistance with my new header.

Do's and Don'ts

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Sun, 23 Mar 2008 01:53:00 +0000

Caring for someone who is ill is just as difficult as being ill (just for different reasons). Many people have asked what can they/should they do to help DH and I. Please click below and read the linked list. Try to keep these thoughts in mind:

A FEW DO'S & DON'TS WHEN DEALING WITH SOMEONE WITH CHIARI

New Job

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Sat, 15 Mar 2008 19:42:00 +0000

So I have a new job. Visiting doctors one after the other...

This week alone:

I saw Pain doc. His response was I know you are in more pain but. hang in there I don't want to make an changes until I do more tests, here is the name of a neurologist who has actually heard of CM and come back for your usual 1 month check up. UGH!

I saw new ENT, couldn't believe the nero she sent me to was so unhelpful. Wants me to try new nasal sprays for vertigo (kinda feels like putting a simple band aid on a cut atery), thinks I may have crystals in my ear drum, go see another specialist and come back. UGH!

Tried to see PCP to sign disability paperwork and schedule a tilt-table test. Or at least try and figure out why my heart races when I am upright. My appointment was at 8:00 as I pulled in the parking lot at 7:55 my cell rang. It was her office. She has the flu and won't be in today, can you come back Wednesday? Double UGH UGH.

Only relief in the whole mess is that DH and I have access to Access-a-Ride. It is a door to door but service provided by the local public transportation department. At least I don't have to drive on days I feel like I could be a danger to myself, DH or others.

Working World Ready for my Return ?

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Sat, 08 Mar 2008 07:52:00 +0000

Probably not. Because I'm not. It's looking like I won't be ready soon, if ever...

New pain (considered going to the ER this week), new nausea, all sorts of new weird things. Started a symptom list for an appointment with a new neurologist (refer Dear Husband's (DH) blog - Billy Bob's Wild Ride Neuro post dated February 28, 2008). Thought I could then just type it here as well. The complete list is a full 3 pages long.

I originally asked for 3 weeks off work. The thought was to get some rest, check in with the docs, get caught up on tests the docs thought were important, maybe get the pain medication adjusted.

Instead I am sicker, weaker, more tired and less convinced I can ever go back to work.

I am a cog in the big wheel that is The City government. I shuffle paper. I am not a career woman. My job doesn't take a college degree. My showing up every day doesn't make a huge positive impact on anyone. Still, grappling with not being able to even be a cog has been the most difficult loss yet. And there have been a lot. The "short list" of loss/stress factors in the last 2 years:

2 highly invasive surgeries (Brain and surgery do not belong in the same sentence)
DH's best friend, and therefore by proxy my close friend, died of liver disease
Inherited her dog into my household of 4 cats
Saw DH through alcohol detox
DH of 17 years diagnosed with stage 4 liver disease
Father died
Assisting DH in his application for SSDI - if the answer is no, I will lose my house

Add on the fact I will have to apply for SSDI and all the new fun and exciting things my body has chosen to do....

Since these things occurred, ALL of the friends that used to fill my life have faded away. They either don't want to associate with sober DH or are sick and tired of hearing about how sick and tired DH and I are. This includes people I used to talk to every day.

God has granted me some new friends, but it just isn't the same.

Oh yeah, and by the way I think I have developed POTS......

I Was "Tagged"

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Wed, 06 Feb 2008 03:04:00 +0000

When you are "Tagged" you are suppose to write seven random things about yourself.
It's taken a while for my response, but Dear Husband (DH) "Tagged" me some time back. So here goes:

1.) It would appear from my blog that pink is my favorite color. It is really Red.

2.) I only 4'10" and wear a size 5 shoe. DH has shrunk, but when we got married he was 6'. The day we got married we were in McDonalds and an older woman told him he had a beautiful daughter (I was 23 years old at the time).

3.) I worked as the office manger for the Victim Assistance Unit of a large police department for 12 years.

4.) I was on the dean's list 2 semesters in a row while I attended the University of Northern Colorado.

5.) My pets all consider me the Alpha of the pack. Even when they won't listen to DH, they behave for me. When I am having a painful night they contend for who gets the best sleeping on me.

6.) I didn't learn to swim until I took an adult swim class in college.

7.) One of my most treasured possessions is a replica 1866 Winchester "yellow boy" lever action rifle.

Was the zipper worth it?

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Mon, 04 Feb 2008 22:40:00 +0000

I am taking some time off work (3 weeks to be exact). I wish I could say it was for vacation, but alas it is to get a handle. If I had been blogging back in May 2007 (pre-blog/pre-decompression days) today's post would simply say "refer to post dated May 1, 2007". LOTS of pressure . Same type of ongoing pain, an actual head "ache" for the first time in 10 years and a new fun symptom - vertigo. When I look at the ceiling or turn my head fast the room spins and my stomach does flip flops. This happened the first time at "Pain Guys" office last month.

I saw the PCP last week. She thinks I have sinus issues/possibly an infection from the dryness of the CPAP and possible "occipital nerve" issues from the CPAP strap. She prescribed antibiotics and a nasal spray. I have been using these for a week and don't feel any change.

It is VERY difficult to believe that anything new and/or weird is not directly CM related.

In addition, since Dr. O has cut me lose because no major complications came up post op, PCP wants me to start seeing a neurologist. The last neurologist i saw was around the time of my CM diagnosis. I have an appointment the end of February.

I am beginning to wonder if the decompression surgery made enough of a difference to be worth it .

Saw the "Pain Guy" last week too. I was hoping for some change to the meds, but he wants me to see and ENT and have more tests prior to "covering up" the new symptoms. -- I know my mother would say swearing is not "lady like", but I have to resort the the fact that I have been married to a sailor for 17 years. -- This sucks!

I'm Baaaaack!

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Sat, 12 Jan 2008 23:33:00 +0000

Thanks for your patience during my long absence. It has taken me some time to get rolling again after such an overwhelming autumn.
Since my last post:
Was diagnosed with obstructive sleep apnea (after my dad's death I was afraid and had my PCP order a sleep study).
Went on a CPAP (had forgotten what sleep was really like).

Decorated the house for the holidays (first time since Mom died in '98).
Actually working full time on a regular basis (with the exception of the occasional doc appt).
Got my physical (as well as my emotional) house in order.
Lost nearly 10 pounds.
Today, updated my blog header and have resolved to start posting on a regular basis again.

Enough for now.

Life goes on..

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Thu, 01 Nov 2007 04:44:00 +0000

I really don't have much new to say today, just wanted to check for those of you who pop in. I'm back to work after the funeral. It's a good thing the walls around my desk are so high so people can't see me cry. I knew this would be hard, but no idea just how hard.

Things that get me thru the day.....

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Sun, 21 Oct 2007 16:08:00 +0000

When I was young I heard a school counselor tell a group of us, "If you stood in a circle with everyone you know, you all put your troubles in the middle, everyone would take back their own." The older I get the more I believe that statement.

A woman at work told me the other day that based on all that has happened in the last 2 years, she doesn't know how I am able to get up and face the day, let alone come to work and be productive. So I thought this would be a good time and place to reflect and share what keeps me going...

Fist, my mom Nancy. She was incredible and my greatest source of strength and inspiration. She taught me by example how to think positive and to press on through adversity without feeling sorry for myself. Losing her before I could appreciate her as a friend was the greatest loss of my life.

Second, Bobby my DH and best friend. He has loved and stood by me through thick and thin. We lack any day to day support from our families so we have learned to lean on each other.

Third, my best friend Carla (sorry no photo available). She helps mostly by giving me either a hug or huge kick in the a_ _ based on what she thinks will help me the most at the moment. When my dad was dying and my sister was on my nerves, she drove an hour in the middle of the night to come be by my side.

Fourth, DH's daughter Kelly. I hate the word step, so from the beginning I have referred to DH and Kelly as my "package deal". DH and I have been together since she was 3. DH, Kelly's mom and I raised her together. Now 22, she has turned out to be a wonderful young lady.

Finally there is the menagerie that live with DH and I. DH and I never had any human children together, but we have raised many of the "fur" kind.
Kitties:
Salmon, Yoda, Sir William MacGreggor and Matilda.

Lastly, Heather the Australian Cattle Dog. Heather belonged to DH's best friend Ardis. When Ardis died last year we inherited Heather. For many months we debated if we were the best place for her. She stayed and we both agree it was the best decision for all of us.

Combined these influences give me strength, support, love and distraction enough to press on. It is amazing how a person has to put aside his/her own pain, discomfort, sadness or whatever may be weighing on their heart and mind when someone else needs their love and attention.

Getting up, going to work, caring for DH, the house and the fur children has never felt like a choice. It is simply living my life.

Who couldn't use a positive distraction???

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Wed, 17 Oct 2007 02:44:00 +0000

My Emoticons for today (notice the prevalence of purple!!) reflect a slightly different mood than the posts since my dad's passing. While never a HUGE baseball fan, it is hard not to catch the Colorado Rockies fever that has engulfed my hometown.
Much to the chagrin of our Aussie DH and I could hear the pennant clinching celebratory fireworks at Coors Field all the from our home 10 miles away.

GO ROCKIES!!!

Trying To Move On

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Tue, 16 Oct 2007 00:55:00 +0000

In my entire life, I have never been so tired. My father's wife of 7 years, Alberta, my older sisters and I buried him last Wednesday, October 10th. His sons were unable to attend. The only good thing about ending this process, is that I won't have to do this again. I can only pray that I won't be the next widow in my family.

I lost my mom to MS in 1998. I felt closer to her and as bad as it sounds, loved her more than my dad, but I am taking this loss much harder.

Even though I have long been an adult, I am finding it hard to be an "orphan". I realize this term is usually associated with children, but I cannot find a better word that describes how I feel today.

The family of my husband of 17 years has embraced me, so I am hardly alone.

My father has one surviving sister and five surviving brothers, not to mention aunts, uncles, cousins, nieces, nephews, etc. My extended family is anything but small. We will go on for generations. Due to my parent's cross country move when I was young, I don't know any of these people.

A loss like this always changes a person's perspective about life. I have realized that my brothers, sisters and I are the oldest of our limb of our family tree. It is a sobering thought. I held in the back of my mind that there was always going to be someone older and wiser than myself. While there are many people in my life that are older and wiser than me, they are not my family. In addition to learning live without my dad, I am going to have to find my new place in the world.

Goodbye Dad

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Sun, 07 Oct 2007 18:15:00 +0000

I lost my Dad, Charles (Chuck to me and Charlie to his mom) Halle yesterday, October 6, 2007. Even though he was 80 years old, I felt like we would have had more time. His oldest brother is in his 90s and still doing okay. In addition to myself he left Alberta "Bert" (his wife of 7 years), my two sisters and 2 brothers. I am going today with Bert and my oldest sister to make arrangements. This is like de ja vu (sp?) as I lost my mom in 1998. It seems strange to be the oldest generation of my branch of the family tree.

While we had our troubles, like most dads and youngest daughters, still I will miss him. The last few weeks he called me every Sunday. He wanted to know how the recovery from my surgery was going.

Prayers for my family are always welcome.

Back to Work - sort of

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Mon, 01 Oct 2007 18:14:00 +0000

So I'm trying to get up to working full time. The problem is, every time I think I can do it I take 2 steps forward and 1 or 2 steps back. Last week I worked almost a full day everyday, then yesterday I started having the feeling like the creature from Alien had attached itself to the back of my head, accompanied by a nest of ants and a painless, but annoying "throbbing" I have never felt before. Okay, I expected to not "feel" the same. I learned that from the implants from last year's fusion. But this is just strange. I'm afraid to drive (main reason I have not left the house since Saturday.)

My co-workers have been understanding up until now, but I think their patience is wearing thin. I look good, my hair has grown back, I have more stamina, but days like today make me feel like a malingerer. I have read so many helpful things from people who have been through the same thing. They all say "listen to you body". I am still learning to do so.

The very good news is that the "mental stuff" feels so much better. Before the surgery, putting more than 3 or 4 coherent sentences together was a struggle. I can now actually pay attention to an entire conversation.

Am I just the sum of my diagnosis?

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Sat, 29 Sep 2007 20:20:00 +0000

So many of my fellow chiarians are witty, interesting and forward looking people. For all my tough talk, I find it hard to not remain a sum of my symptoms and I wish for something positive and unique to say.

I am back to working almost full time, with the exception of time off for continuing doctor appointments for both me and DH. For folks who don't know, DH is billybobswildride. My work day is stressful only because we are understaffed and hence overworked. The work itself is not stressful. While I'm there I can pretend my life is relatively normal. I can even forget I am a zipperhead for a few minutes here and there. That is, until my left hand decides to have a mind of it's own or the scar itches to high heaven.

DH says I am brave and should not beat up on myself for continuing to have fatigue, clumsiness or memory issues. As a survivor of child abuse, positive self image has been a life long struggle. When usual "human" shortcomings are hard to enough overcome, the issues brought on by chronic pain and illness are a whole new ball of wax.

DH found a great new support site for chronic illness "But you don't look sick". One included story relates an exchange between the author, Christine Miserandino, and a friend. The author struggles to explain, in a way her friend will understand, what it is like to live with chronic illness (in her instance, Lupus). It is called the "spoon theory". It is the most articulate explanation of what living life with chronic pain is like I have ever read.

WHAT IS WRONG WITH WANTING NORMAL?

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Sun, 23 Sep 2007 03:35:00 +0000

When I was a teenager most of my friends were artists types and people who really didn't care what the world though of us. I never wanted to be normal. I thought it would be dull and meaningless. I wanted to be unusual, unique and misunderstood. (What can I say, I'm a product of the 80's) This was long before words like physiatrist, platabasia, Chiari, high-tone, retroflexed, odontoid, or any type of syndrome would part of my usual vocabulary. I no longer want to be unusual, unique or have something most doctors never heard of, let alone understand or know who to treat.

It was not until my diagnosis that I found out not everyone had one arm that was always colder than the other, it was unusual to have tunnel vision in the very cold weather and it was not funny, normal or entertaining to trip over one's own feet.

Before the surgery I told Dr. O that success for me would be no more new symptoms and relief of the headache that had come to stay. In the three months prior it seemed like there was a new tingle, numbness or pain every week. When I described success, I thought I knew what I was saying. Now I am not so sure. After all the difficulty of the surgery and the seemingly endless recovery I want more. I want to be normal.

Like so many people with life changing diagnosis, I wait, read web postings looking for support and pray.

LET THERE BE SPACE!

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Wed, 15 Aug 2007 00:05:00 +0000

Bear with me while I reflect a little:) Do you ever look back at a hard time in your life and reflect on a decision you made? Sometimes you wish you had taken a different path and sometimes you realize that a power greater than yourself led to to the right one? I remember reading some of the philosopher Immanuel Kant in college. He suggested that at a crossroads a person can make a choice simply by not choosing. That is often how I felt after my appointment with first appointment with a neurosurgeon on January 6, 2003. I knew as of that day that surgery, very scary surgery, was in my future. I also knew I wouldn't trust him to remove an ingrown toenail. I spent the next 3 months calling doctor after doctor trying to find a neurosurgeon who had even heard of Basilar Invagination, let alone one who knew what to do now. When came to the realization that there were no good choices in Denver, I stopped trying. I gave up on hope of any help other than medication. Then, Dr. O moved to Denver and everything became crystal clear. It was meant for me to wait for him. I know to my core that by choosing to wait, I had made, or been influenced to make, the right choice.

Now, the good news. Bobby, Billy Bob and I saw Dr. O yesterday and yes, there is SPACE! I knew from Dr. O's description of the procedure that there was a lot of bone and other "stuff" removed to give my brain more room, but it was a whole other thing to see it on an MRI. "Things" feel different in there, but it was rather freaky to have a visual to go with how I feel now. Dr. O explained that the positive cognitive changes are directly connected to the flow of the spinal fluid. He said my progress was right where he expected and to not be discouraged in regard to the continuing headache. The focus now should be moving on with life. I admitted to him that I have felt like such crap for so long that I don't remember what I used to like to do.

When Bobby first stopped drinking he said he was struggling with how to reinvent himself. I think I know what he means.....

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Wed, 08 Aug 2007 23:25:00 +0000

For the first time y'all are hearing from me directly. I hope I can be half as entertaining and informative as Bobby. Forgive me if I repeat him from earlier posts. Life is getting somewhat back to normal. As normal as life can be for someone with Chiari 0, platabaysia, basilar invagination and ehlers danlos syndrome. Didn't realize how much I appreciate driving for myself. Access-a-ride was a great service, but there is nothing like going where you want, when you want and with whom you want. I feel like I have lost 2 summers in a row. When I went in the hospital it was spring, when I got out it was full on summer. Now that I am back to work fall is just around the corner. I went back part time on Monday and hope to be up to full time by the end of August. When I got home from working 4 hours I slept for 2. My coworkers have been more supportive than anyone could hope for. The headache continues...and continues...and continues. The doc says he is not supprised, be patient. Other than being headache free I don't know what else to wish for. Progress for rest thus far...well...the right foot and left hand have begun to get the train with the rest of me and not have minds of their own. The world famous Dr. O suggested I start knitting to help get the left hand on board I had to tell him I had already started this last year when she was doing more and more her own thing. Another MRI, I have lost track of how many this makes, and another doctor appt on Monday the 13th. Cross you fingers and continue those prayers and positive thoughts, I can use every one :)

Babinski Shminski

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Fri, 27 Jul 2007 20:53:00 +0000

Sharon went to see the outstanding pain doctor and he confirmed what the neuro surgeon had told us... that her Babinski reflex had improved to normal. This is when the foot is stimulated along the side, someone with neurological problems will have their toes curl up. Hers used to, but now they curl down. Wa- la! -a normal Babinski. Her hair has grown back, and she's heading back to work after one more week off.

Switched sides

noreply@blogger.com (Sharon (aka Sitting Porcupine)) — Thu, 19 Jul 2007 17:10:00 +0000

What a freaky two months. We've switched sides of the bed. I'm in here and Sharon is riding the handicapped bus every morning to be by my side. It is a daunting task for someone who not too long ago was in a post surgery ICU. She is a tough lady. Thank you to all our friends and family for your logistical support, prayers and well wishes. Click here to visit us at my liver's blog.