I should update, but I guess I was just waiting and hoping for a better story to report. I will tell you the good first:

A little more feeling in my feet...
Not taking a nap during the day...
Feeling a little more clear in the head...

I will tell you the "not so good stuff next":

Not walking "much" ( I could say "any" but I want to reserve the small possibility that the walking is improved)...
Dull headache most of the time...
Pain in the neck... (and I am not talking about Schautzi)...

I will wait 2 or 3 months and hope that things will get better. They are no worse and that is good!

I'm thankful for all my blessings...My wonderful husband, my children, my grandchildren, the Savior, My Heavenly Father....

I could go on and on because I really do have so many blessings but
it is a beautiful fall day outside and I want to go feed the chikens. I will have to finish this later.

Getting Closer..

We leave tommorrow for California! I have to pack today, contact some friends last minute, help Mrs. P. with her stained glass picture, etc. I'm up early again because I just can't sleep. Too much to think about and my mind won't stop talking inside my head.

Let me just say a little about Mrs. P. What a dear friend she is! She is at our house spending the night. I don't know why, well I sort of do. She's never spent the night before, but I really think she is here to be a comfort to me, mostly and she is also going to take care of our animals: dogs, chickens, and goats while we are gone. It is sort of like old times when my girlfriends and I would spend the night at each others houses. I must say we didn't stay up late though and talk and laugh into the wee hours of the morning. We went to bed by 9:00 p.m. I guess that shows the "wisdom" we have developed through the years.

We were both third grade teachers in the same school and had our classrooms next door to each other in the hall on the left side. I have developed quite a friendship (understatement) with her through the years and I must say that she is my best friend, besides Jim. We have shared many good times together and of course at the end of each day at school it was always so nice to see someone who really understood how hard teaching really was. I love "Mrs. P."

One week to go! Needless to say I am a nervous wreck and wish the time would go by very quickly. I hope I will receive treatment next Thursday, Sept. 16th, in California at Pacific Interventionalists, but it depends on what is found the day before in scans of my head and veins. I hope narrowed veins are found!

Strange, a person hoping for problems, but if there is, then something can be done to help. I do hope drainage problems exist!

Yes, I want to have problems! Problems should not be hard to find, after all; it is me we are talking about. Right? There must be problems in my head somewhere!

My doctor will be Dr. Arata and treatment is scheduled for the following day.
The scans will help the doctor to know where to put the angioplasty balloons or stents. I so want to walk again or at least get around a little better. If my feet could feel again what a blessing that would be.

My emotions are very near the surface and as the saying goes, "I'm wearing my heart on my sleeve". I was somewhat surprised this morning when I began crying. I just have so much anticipation and hope floating around inside me. The outcome of this trip means so much to me. Afterall it is my life I'm talking about.

My Appointment

The appointment is now certain and I am filled with excitement! It will be on September 15, 2010 with Dr. Arata in Southern California. That is the day we will find out if my veins are narrowed and not allowing normal flow of blood. Is my blood refluxing back up into my brain? I think so, but I won't know for sure until an MRV is done. I don't know what those letters stand for but is is something to do with the venous system.

What is the word that discribes joy and fear all mixed up into one? Apprehension? Anxiousness? Excitement? I found out about my appointment date yesterday and if last night is any indication of the next two weeks I will be getting very little sleep, at least not at night, the normal time for most people. It seems that my mind starts spinning around at a hundred miles per hour during the quiet, in the dark. Many thoughts are swimming around in my head and mostly going upstream. These mixed-up and unsettling thoughts are not easy, nor relaxing, not condusive to sleep.

My thinking is all mixed up.I'm sure others don't see the machinery in my brain working or the cogs rotating in circles. It must look like Mr. Jetson working at Coxley Cogs Factory in the Jetson's Cartoon. The processes keep turning and grinding parts into place. I want so badly for this procedure to work for me. Will it help me? What if it doesn't? There is always a prayer in my heart that the results from this procedure will be good, even if I am not verbalizing it except here in my blog. The questions are there, and very clear to me. What percentage will I be in? The 33% that see a marked improvement in symtoms, the 33% that see little change, or the 33% that see no change at all? I'l go back to bed now and let the cogs keep turning.

Well, it is time that I updated my blog. Actually, I forgot which name I used for my user name on this blog and it took me awhile to research it and find the answer. I've got it now and maybe, just maybe, I'll remember it this time. No guarantees though. I DO have a memory problem (or two)after all that I can blame. I hate to admit it though, so please be patient with me and you can just forget my recent admission. I'd rather pretend that I am JUST fine, thank you.

On goes the hunt for my "liberation". Maybe I should say, "Red September". Those of you who have seen the movie, Red October, will relate to that title: war, intrique, suspense, etc. Oh and finally and most important for me, safety and rescue. It will be close to October when the plans are finally set. I'll have to call New York, and cancel the appointment that I have there. Dr. Andrews in Seattle didn't work out for me either, even though I thought that was going to be the place for me, much closer to home, etc. He has an Interventional Radiologist working with him now, who called and told me that maybe they would get everything going in six months. Wait six months? I don't think so!

I'll opt for California. I'm now planning to go to Pacific Radiologists in Southern California. I must say, that place is a far cry closer to me than New York state and Jim will drive us there. We will be in the state where I was born and it will feel like home in many ways, bringing back nostalic memories of living there for twenty-some-odd years. I have great memories of those years: growing up in Grass Valley, a quaint little town in Northern California; attending Nevada Union High School where I met Jim, my future husband, in our senior year; etc. Also two of my four children were born in Sierra Nevada Memorial Hospital. Chris and Kortney were born in that wonderful town. Living in Grass Valley is a memory that is filled with years of joy, basically from birth to moving away when I was a young married woman with two children to imbark on our new life and our adventure in Washington.

Enough for this post. Next post...my appointment.

I see a light glimmering at the end of the tunnel...

I see a light glimmering at the end of a long, dark tunnel I've been stumbling around in. At least I hope I see it, and that it is truly there giving me direction and guidance for my future.

I'm still waiting for a call from Dr. Andrews. Today is August 4th. Originally his staff told me that he would call me in July. July has come and gone, but his secretary had told me beforehand that he was taking a trip to New York and meeting with Dr. Zamboni. She said he would begin his calls in August. I figured that was wonderful because he would get good "pointers" from Dr. Z. for fixing me. I am willing to wait, especially if it will improve my chances for improvement. IRs are saying that this procedure is different than any they have done before even though it uses the same methodoligies they are used to.

Okay, I am counting the days now and I figure he could be calling me anytime. If I am #32 on the CCSVI list for Dr. Andrews, and let's estimate that he calls 5 people each day, then he should be calling me in another 2 or 3 days. Of course, I'm anxious and hopeful, and want him to call NOW! I admit, I AM IMPATIENT! I've been working on a stained glass picture that I am entitling "My Liberation Picture". It is of a hummingbird which to me represents "freedom". It is fast and free to fly whereever it needs to, whenever it wants to. Working on the picture with Margaret keeps me busy and gives me something to do besides sit and stare at the phone.

I want to be careful though and not get my hopes up too much. The interventional radiologists that have done hundreds of these procedures are saying that for one third of patients there is no improvement (but perhaps the worsening of syptoms is halted), for one third there is minimal improvement, and that for the other one third there is marked change and symptom improvement. How I hope and pray that I am in the third that sees many improved results! I'm scared though because I have had this disease for so long and I know there has been a lot of damage done to my nervous system.

I am still hopeful though and there truly is a constant prayer in my heart. Oh, Heavenly Father, please hear my prayer.

Today I'm all fluttery inside because of excitement, hope, and anxiety. There is a doctor in Seattle, Dr. Andrews, an Interventional Radiologist that is beginning to work on people with CCSVI. I am on his list of 30 people currently and I'm very excited!

I'm not sure I've written much about CCSVI before. It stands for Chronic Cerebro-Spinal Venous Insufficiency. Dr. Zamboni, an Italian vascular surgeon, gave it the name. In normal language, it means that a person's juggler veins and/or azygous vein near the spine, are narrowed to the point that normal blood flow can't get through and drain properly. The blood refluxes back up into the brain when it hits the narrowing and causes our bodies to look at it as a foreign invader. It is going the wrong way after-all!. If I were a white blood cell I would think it strange too. "Hey what is this red stuff traveling the wrong way on the road?"

This theory made sense to me the moment I heard it! My neck has always felt stiff and sore. It hurts to move it. I have head aches now, although at first they were not an issue.

The white blood cells attack the red blood cells which causes scarring and thus MS. This theory was begun by an Italian Vascular Surgeon named Paolo Zamboni. His wife was diagnosed with MS and having trouble walking, etc. I know the symptoms all too well, which of course I wish I didn't. He did a venogram on her neck and discovered narrowed veins. Because he is a vascular surgeon he fixed the veins by inserting angioplasties or stents in the narrowings and making the veins wider. Her symptoms improved! This was about 4 years ago and she is still doing well. She is walking and basically normal now.

Looking back in history, there was another doctor who had this same theory in the late 1800's. I thinks he was Russian. I forget his name but his idea was made fun of and not accepted. He tried really hard to get support but finally gave up. He really did know what was causing the problem! I'm thankful that the medical community, at least somewhat, is listening to Dr. Zamboni now.

Dr. Torrance R. Andrews' nurse said he should call me the middle of July and I gave her my cell phone number in case he should want to call while we are back in Idaho. Waiting until then is better than having to wait until fall to go to New York to have the surgery done. Going to Seattle is a far cry closer in distance and I am sure traveling expenses will be much less. Probably not even comparable to having to fly to New York! Besides the money issue, I will be able to get the surgery done sooner. I've had this disease long enough and I am ready for a change.

Dr. Andrews just began doing procedures to elminiate CCSVI and I don't think word is out to a very big degree yet. Sammy Jo Wilkinson, from California originally, told me about Dr. Andrews who is now at Swedish Medical Center in Seattle. I appreciate her help so much because it is hard to find out this type of news quickly. The last time I tried to get into a trial at Stanford University was with Dr. Dake because he was testing for CCSVI; I was about the 700th person on the list. They were only taking 100 into the study. So, great disappointment, there was no way for me to get in.

To finish up, I am excited and looking forward to having, what some people are calling, "the Liberation Treatment". I hope and pray that it will liberate me too!