Friday, May 29, 2009

changes in the wind

My dear dear friends,

First, I apologize for the mass email. My world has been an emotional whirlwind the last few days and it doesn't seem to be calming down! Is it tornado season, I wonder? We don't really get them here in WA, but sure seems like something's stirred up!

My surgery WAS scheduled for June 4th. (my craniocervical fusion to be done at The Chiari Institute in New York).

Right now, plans have changed. I am flying to NY earlier, on Sunday, May 31. Once there, there is more diagnostic testing I need to undergo and things need to be looked into more deeply. After all, I haven't been there since May 5 last year!

IF, after the testing, it is decided that I still need this surgery (or that it would be good for me), THEN I will be worked into the TCI surgical schedule. If not, then I will come home without it. So, I "might" have my surgery on June 4, I might have it on another date, I might not have it at all.

If you would pray one thing for me, it would be that God's Will be done in my life. That the decision made by the doctors will be God's Will, once and for all, either I have the surgery or I don't. No more yo-yo stuff! Well, unless yo-yo stuff IS God's will! ;-)

Just pray for those doctors to look deeply and thoroughly and in the end, the decision made is the best one for me.
I am finally at a true and honest point of accepting His will in all of this. Without emotion or tears about broken dreams. I'm finally there, and it feels really good to be at that spiritual place.

For those of you who are TCI patients, PLEASE understand this: nothing about my situation has anything to do with the surgical situation of any other patient at TCI. My situation is off the charts unique and just takes more looking into. I don't mind a more in-depth look! If you are receiving this, it is because you express concern and you know me, so you know my physical situation. It is very different than what is normally addressed at TCI, or anywhere. People usually don't live after suffering what happened to me, so doctors are unsure. I, on the other hand, am very sure that TCI and Dr. Bolognese is the place for me.

However, I will have some access to the internet for part of my trip so if you want to write, that's great. But just personal messages, please. And I WILL update you!

AND, if I owe you an email, I'm sorry. I might have to just delete all of my incoming messages and start over new! I don't think I can ever catch up! But it doesn't mean I don't care!

Thank you for being my loving family and friends and thanks for your prayers. I am blessed beyond words by knowing you, you are each a gift to me.

Monday, May 25, 2009

Last Friday...

on Friday, the 22, I did hear from Dr. B, my neurosurgeon.

He said that they were meeting at 3 pm that day to discuss my case and then I'd know if my June 4th surgery is still on.

The administrative manager at TCI also emailed telling me the same thing, and saying I should call him on Tuesday morning (tomorrow morning now) to see if the schedule is the same.


I tell you, this is some journey! Not being able to be certain about this all happening has tested my patience and faith. But then, we all know nothing is certain!

Insult to Injury


Saturday afternoon, after feeling for a few hours like I had a rope burn across the upper part of my neck near the hairline, I asked my husband to take a look.

After all, occipital pain is found just a bit higher than that, perhaps an inch higher than the hairline, so I figured for awhile that I was just experiencing more occipital pain.

My husband found a tick firmly embedded in my skin on my upper neck.

He plucked, carefully, the little feller from his homestead claim (the tick's, not my husband's) and we looked it over closely. It looked like every part of the tick had come out.

But I felt a real painful tenderness in my right lymph node under my jaw and also above the site (the bite site). And it wasn't getting better.

So, at 8 pm, I asked my husband to drive me to the ER at the hospital just a mile or so from our house. After a long wait to get in, spent enjoyable visiting with a young woman who checked in right after me with a bug bite reaction on her back (!), the doctor saw me and said that the head of the tick was still in my skin.

She dug it out and gave me a prescription for Amoxicillin. Saying I should fill it and take it only IF I felt there was infection going on.

She told me, when asked, that our ticks here do not carry any nasty things like Lyme's or Tick Fever, but the only concern is infection, especially given I am having surgery at exactly (!) this same area in 10 days.

On Sunday, the pain in the lymph node was worse and also lots of pain around the area of the bite. That little bugger really emptied some poison into me! So, I got the ABX (antibiotics) and started taking them yesterday afternoon.

This morning, I felt very nauseous and more weak and sick than usual (if that's possible). But, after taking a short nap at about noon, I started feeling a lot more like my normal self, meaning I'm weak, I hurt in every cell in my body and especially occipitally, BUT not sick to my stomach stuff.

I will have to let someone at TCI know about this and pray hard that it will not interfere with my surgery. IF my surgery is a "go" on June 4. After all, infection with these fusions happen pretty often, they are the one thing I'm most concerned about, and me getting a tick bite infection at exactly the site of the incision (!), well, I know I have to be careful.

Well, at least it wasn't a rattlesnake bite!

Thursday, May 21, 2009

Countdown, Part Deux

Well, once again, I am looking at "two weeks from today is my surgery!"

Seems like I just went through this, like deja vu`.....all over again...oh yeah, I did! My surgery was supposed to be April 28, but on April 21, I got word that it was to be postponed.

I still have not heard from TCI IF my surgery for the 4th of June is firm. I have emailed and left a phone message today. I pray tomorrow I will hear good news.

I have received an email from one friend whose surgery was meant to be tomorrow, the 22nd. TCI called her and let her know her surgery was also postponed, but this time, hers was because they are "triaging" the surgical patients, the ones like me who had their postponed a month ago, and the ones whose surgery dates were already set for this time. She was told they are figuring out whose surgery is urgent and should go ahead as planned, and whose can wait.

Thus, I pray again for the LORD's will, and that my surgery will happen.

Those reading this with instability probably know just what I mean when I say, there are scary times when I feel like my head is challenging any support it gets from my neck and muscles. Tonight was one of those nights, I feel more pain up under my ears and in the back of my head, and tonight, the skull feels very heavy, very wobbly, and a bit scary. Bedtime is soon, so I might feel better then, but...

lately, having my head on the pillow is not comfortable. The back of the head hurts a lot when I try to lie on my back. If I'm on my side, the weight of my "upside" arm drags down on my shoulder and neck and that hurts.

Another friend told me that after my fusion, she doesn't think I'll be able to garden. That is hard to hear, even though I know that if there are any safe ways I can do things for the garden, I will do it, even if it's just standing out there with the hose and sprayer. But, I also know deep down that I will need to be very careful and I will have to have more control over what I do...not let endorphins get the better of me. I simply cannot overdo with the fusion and hardware...I read far too many stories about people whose hardware has come loose because they fell, or bent over to get a pot from under the counter, or just turned their heads too quickly.

I am continually blessed by the hundreds of flowers that are bursting forth from the ground here in our yard! The tulips are almost past but there are so many to take their place. If I could list all their names, I am sure there are at least a hundred types.

Mickey, my hound dog Dachshund, continues to amaze me with his intelligence. He's learned, finally, not to lick my face. He's learned that when he runs to the fence to bark at the neighbor boy or go greet his dog, and the adrenaline is pumping and Mickey is barking, with just my "cchhh" he is to stop whatever activity he's doing and look to me for direction. I learned this from watching The Dog Whisperer on National Geographic channel, and Cesar Milan's techniques really do work. Even on an effervescent, ever-hyper Mickey.

Saturday, May 16, 2009

Afraid to dream?

Dear, dear friend,

I will soon be heading to NY for my big gig on the OR stage ... will leave June 2. Hope to be home June 13. Probably will be in a halo, won't be exactly sure until they see how my bones look. Dr. B said there's a chance he'd open me up and not like the looks of the bones and not do the stabilization at all, just close me up and send me home. I'm sure not praying for that to happen!

Life is so much different for me than the days I used to travel and perform on stage. I've adjusted and love my life and my home, but my husband is surely champing at the bit to do some travelling, something I really can't do now. I don't know how he'll handle it if I get all recovered and still can't travel, but he'll deal with it, I know. He's just such a gypsy!

I was thinking tonight I'd love to perhaps show Mickey as an agility dog, if I get well enough. He is the smartest dog I've ever worked with, and I'm getting so much more interested in dogs than I've ever been before. Today, I told a woman on the street that I love dogs, and then became aware that that is an unusual statement for me. Dogs were always okay, but it was horses I loved. I think training and showing a dog would be a lot like my life of training horses, something I'd sure enjoy doing. And a lot easier than hauling a horse!

I have lots of dreams, they are very simple ones. Maybe being able to walk the dog and go for small walks. Maybe lose some weight because I could walk. Being able to travel in the car with "mi esposo"...and we'd love to fly up to Alaska. I want to be able to fly home to see my Mom next year, and also feel well enough to fly her out to see me this Fall. I'd love to be able to go down and see my son a couple of times a year. Going through this really helps to put things into perspective, and the important things for me are to be with my husband and my loved ones. Speaking of which, I'd love to be able to come up and see you again some day!

It's scary to dream though. Because I really don't know the outcome of the surgery, or if I'll even get it.

Because of that, I have learned to love each second of each day and not think too far into the future. My husband loves to keep saying, "We have to get you fixed so we can travel and go see places" and he doesn't know that it feels a bit of a burden on me, and I always know he is just meaning to encourage me...and I always answer with a "yep," but given what this journey has led me through so far, I know there are no guarantees.

So, it becomes each day, a single step at a time. Often, it's not a step, it's a standing still, or sitting, or lying in bed. But to be able to be content where I am at, and not setting up too many hopes and dreams...not planning on a future beyond these walls and my yard, it's something someone doesn't attain unless you've been through it. I don't know if that makes sense. My friend, Janice, said once, "I feel like you know something because of all this that the rest of us don't know."

And I think I keep learning new things all the time.

I've come to recognize something in me that I never would have understood if I'd not made the journey. It's odd how that works, you start out and think you have your own goals (to get better, to ride again, to have your life back), and then you realize you have to be content with the goals you have achieved, even ones you of which you were not aware.

It's all knowledge I'd rather not have had the chance to learn. But it does give value to the experience. For what, I'm not sure.

Maybe it'll help me in the future to know how to talk to others. To know not to make promises no one can keep for sure, like: "we'll beat this," or "you'll get better, you'll see." This may sound fatalistic, but I don't mean it to be. I really do have a positive outlook on the surgery.

"On paper," it ought to work. It ought to be "just what the doctor ordered." But I've also learned that we can't predict surgical outcomes or what the central nervous system will do. We really do not have any control. People who believe that positive thinking will cure illnesses? Well, yes, a good attitude goes a long way...but in the end, even positive people get chronic pain and illnesses.

So, I keep trying and pray for the best. I don't give up. I don't let others know that I have fears. I smile and act like getting on an airplane alone headed toward major surgery 3000 miles away from home is commonplace. Hey, I've done it already once before, though my poor, sometimes addled brain really can't recollect much of it.

I cling to the promises and the positive. But I am also aware of the fact that my surgeon has never really dealt with this before, not exactly like me.

The spirit side says, "This is gonna be sooooo great!"

And if one side (the spirit side or the realistic side) speaks a tiny bit louder than the other, it is the spiritual one.

If that were not so, I wouldn't be able to step foot on that plane.

Please hold me in your prayers. If it is God's will, I will indeed one day feel well enough to drive the five hours to your house and I'll be able to laugh out loud with you again!


Wednesday, May 13, 2009


Praise Almighty God!

Dr. Bolognese has been reinstated!!! The final decision has come down and our dear, dear surgeon has had his surgical privileges reinstated.

This affects me personally in such a huge way! I've had my suitcases packed for a month. I've gone on this roller coaster ride until I'm numb to it all.

I just started living in the moment. In two weeks, I will have this surgery now. But even today, I just had to live in the moment. I didn't know what God's will would be. I didn't know if I'd have the surgery....if I'd have to get to know another surgeon and make a decision about using someone else...or go without the surgery at all...I didn't know so I became numb to it. And kept fighting to keep Dr. B at the OR table!

I wrote to the hospital Board of Trustees, I talked to the hospital spokesman, I wrote messages at the ends of nasty articles, as so many others did. I wrote the head of the hospital. I had plans to start tomorrow writing to Greta Van Susteren. I was ready to fight and fight big.

It would have been such injustice if Dr. B had been found negligent and made to discontinue doing surgery.

There are so many who need him. And we need him to train other surgeons to take over, as well. We don't want this to happen again, where our main guy almost was lost to us!

Oh, hallelujah, so many prayers are answered. It's not just about me. It's about The Chiari Institute and it's about all the people who have Chiari in this world, and syringomyelia and Ehlers Danlos Syndrome, and basilar invagination and functional cranial settling and hydrocephalus and all the related disorders that cause so much suffering, unspeakable suffering. Oh praise our Most High God!!

Oh, what joy!!!

May 12

I send out daily Bible lessons from a book I use authored by Pastor Chuck Swindoll.

Here was the one for May 12. I liked it, felt it applies to the situation I am going through, so decided to put it here:

Be still...deliberately pause and discover that God is God.

Stop reaching back into your own treasure of security.

Stop trying to pull the strings yourself.

Stop manipulating people and situations.

Stop making excuses for your irresponsibilities.

Stop ignoring reality.

Stop rationalizing your way through life.

Stop all that!

How? You ask.

Initially: Be quiet.

The immortal, invisible, all-wise God, hid from your eyes, is at work.

Be very still, and, for a change, listen.

In quietness and trust is your strength.
Isaiah 30:15

Pastor Chuck Swindoll

Tuesday, May 12, 2009

The last week...

It's not going to get any easier to post here, so I might as well take the time now.

That sounds upbeat, huh?

Sadly, problems with sitting at the computer are amping up. My neck and head-pain flares up and my hands and fingers ache from typing. The brain gets tired and soon after, I'm headed for a nap.

Yet, I think each day of things I want to write here.

It has been a tough week for me concerning news of my surgeons in NY.

All "Chiari-type" patients reading this will know what I mean. Others, my family and friends, may not know.

Last week, news began making the rounds on the internet that the two main TCI surgeons, Dr. Milhorat and Dr. Bolognese, had not shown up to do surgery on a patient who was already in the OR, anesthetized and head shaved, etc.

This event is simply not being reported the way it happened, not the full story. News reports that have been picked up by Fox News, MSNBC, CNN, NY Times and others, have all been very one-sided.

The result of the hospital-OR event was that North Shore Hospital suspended these two surgeons from surgical privileges at the hospital for two weeks. That began April 17.

After two weeks, the suspension was extended.

This explains why my April 28 surgery was postponed.

Alot of the back-story seems to point to political and personal issues. And much of it is second-hand knowledge and speculation. Biased quotes from disgruntled patients are used in these articles which all combine to paint a false picture of evil, rich and heartless doctors.

As an ex-reporter and journalist, I have to think the reporter from The NY Daily News must be receiving her pay by the word, as she posts new articles once or twice a day, on this topic. If you happen to find these articles, please read below where readers are posting their comments. Overwhelmingly, the comments are blushingly positive for TCI and Drs. Milhorat and Bolognese.
I know Dr. Bolognese much better than I know Dr. Milhorat. I saw Dr. M only briefly during my Invasive Cervical Traction, where he found what no other doctors had recognized up to that time: that besides the 4-place C1 fracture, I had also suffered at the time of injury "dislocation of the occipital condyles" (my skull had broken free from the spine and slid forward and downward, eventually fusing itself into that "wrong" spot).

So, I will mainly speak for Dr. B, his integrity, his compassion for his patients, his expertise.

He honors his patients like no other doctor I have seen, anywhere, anytime. He treats us with dignity and respect and doesn't talk "down" to us as all other neurosurgeons seem to do. He knows we have pain, he knows we have reasons for our pain, he wants to find the reasons and offer hope, if hope is possible.

I help moderate a large, international, online support group ( I have been moderating there for two years. I have mentored and helped advocate for many chiari patients, and others with related conditions. And I can say without a shadow of a doubt that I know hundreds of TCI patients who say that Dr. Bolognese has saved their lives, or those of their children. Dr. B gave us hope, respect, and erased feelings of helplessness. He replaced despair, rejection, self-doubting with love and medical knowledge.

As of right now, Dr. B is still under suspension by the hospital. Dr. Milhorat gave notice of his retirement two days after the news broke last week. The papers say he has been considering retirement for a long time, and the hospital has been searching for a replacement.

How does this all affect me? Well, I don't want to come across self-centered here, since there are thousands of patients affected by this. However, perhaps my situation can serve as an example of the mental suffering going on right now across the world with the fate and future of a beloved doctor held in limbo.

My surgery was rescheduled for June 4. That is almost two weeks away. I am having my doubts that the surgery will now take place. Ever.

There is no other doctor I will trust with my skull-base area. I have worked with Dr. B for 3.5 years to get to this point. My trust and faith are in him.

So, if I go without the cranio-cervical fusion, what does this do to me, physically? I have cranial settling, and this never gets better without stabilizing hardware and fusion fixation. My neurological situation only gets worse.

The skull is very heavy. They say it weighs on average 25 lbs. This weight does not get lighter, and for me, the spine holding it up does not get stronger. Everything keeps progressing, keeps settling.

The CTO vest is somewhat supportive, to keep the head from going sideways and forth and back. But it doesn't lift up and decompress nerves that are impinged by the collapsing of bones.

I foresee a lifetime left in a halo brace. Unless God intervenes and I am healed, or I get this fixation surgery.

All the things I'd hoped to be able to do, including going shopping, driving again, visiting my aging mother, seeing my son in his home with his wife, it will all not come about.

And I am one of legion. So many people are suffering, and so many are watching their children suffer. What about all the surgical patients who have no follow up, if this all "goes down" in a bad way? What happens to the dreams of other patients and the mothers and dads who dream of a normal, happy life for their kids due to surgical intervention by Dr. B?

We NEED Dr. Bolognese! And I am praying that God will intercede on his behalf. And on behalf of all the suffering patients who have nowhere else to go. For TCI and Dr. B are the ones who take the tough cases, the complex cases that other docs turn away. Dr. B is the last option. And without him, the future is very bleak.

I will not argue here, at least not yet, the defenses for these doctors and what happened. I do not know all the facts. But I do know that money is the greatest motivator. Other neurosurgeons who do not get the patients who go to TCI can be motivated by the money they personally have lost. They can be motivated by egos, and not liking these super-specialists because of their fame or their cutting-edge techniques that lead to medical discoveries.

One thing we can be sure of, when money is involved, the truth is usually less than easily seen.

Please pray for Dr. B today. Please pray for me, that my surgery with him will proceed on June 4. Also, my friend Charnel has her surgery set for May 19. Another e-friend has a surgery set for May 22. Another for in June. And so it goes. Please send up prayers for them all, and all the present and future patients of the kindest and most genuine doctor we've ever had the blessing to know!

I'll keep you posted.

Tuesday, May 5, 2009


Today, I got something done I've wanted to do for awhile.

I rearranged some cabinet shelves so that the things I use most often are not on lower shelves.

In the "pantry" area of the kitchen, I moved out kitchen tools and put all the cleaners and such that were under the sink. I also comprised some space so that I could put pots and pans and bakeware on more accessible shelves.

This will help me now, but even more so, it will be of so much help when I come home post-fusion, in the halo.

I'm now 29 days til surgery in NY.

Having the surgery put off last month has really given me more time to get things done in the garden. Yes, I overdo. Yes, I pay for it in pain. But I am rewarded by seeing things looking nice, and knowing that this summer, things will be easier to care for. Our landscaping is very important to us.

It provides (and will provide) privacy to us from neighbors, and it adds value to the property. I have about 30 young pine trees that are just now going to be hitting their stride in growth. I suspect this will be their 3rd year after being transplanted as 1' seedlings. This should be a good year.

My husband has taken, for the first time, a lot of interest in the landscaping and gardening. He's planted tomatoes already, planted some corn seed, spreads the mulch under the trees and in the beds. I don't blame him for not caring much for landscaping used to be part of his job for the last six years he worked. And weedeating on a grand scale gets old, fast.

The daffodils have gone past, I've snipped the old blooms off. The tulips right now are blazing in glory. The wild turkeys are getting braver about coming up closer, but with our two dogs, I don't expect to see them near our house.

I've been staying home and not going to our shopping town 35 miles away. It's not fun for me anymore, the pain and suffering from traveling and walking through stores has finally convinced me to stay home. I will go into our little town, 1 mile away, though, and that is really good enough for me!

I'm really looking forward to getting this surgery done, getting through the halo phase and (please, Lord) then having strength in my legs and be able to walk without pain in my feet and great weakness. I won't be walking across the road this summer, but maybe by the Fall? I hope so! It's so pretty over there, so close...yet so far.

I've been watching Dancing with the Stars on the internet ABC website every Tuesday and Wednesday for a couple of months. Our satellite company, DISH, doesn't carry ABC anymore due to contract problems, so I have to wait a day later to watch it, when it gets posted on the site. This year has been especially fun for me to follow because one of the PBR bullriders (retired), Ty Murray, has been competing on the show. And doing well. He's made it to the top 5. When I watch tomorrow, I'll find out if he made it to dance another week. It's been fun to read and post on his blog, and be a part of his voting "army."