Trailer

Do I dare be hopeful ?

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

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A day in bed

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.?.?.?

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

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.
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Surgery - Round 3

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

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

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

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 ?

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"

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?

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!

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.