What a difference a healthcare provider makes!

YAY! I went to my new heathcare provider today and WHAT A DIFFERENCE A HEALTHCARE PROVIDER MAKES! Even though I am a medical "train wreck", she made me feel so welcome. She talked to Justin and I for an hour. She ordered a referral to see a cardiologist to see what type of Ehlers-Danlos Syndrome I have. She did not shut me down and ignore me as my prior provider did. She was genuinely concerned about me as a human being! She also order blood work and they had a lab right in their office. Amazing, just amazing. She even asked Justin how he was handling me being sick. She prepared us both for the possibility of me not returning to work. She made sure that I had a handicap placker for my car, which I had to practically pull teeth to get at my prior doctors office. She went over all of my medications and did not want to change anything that I am currently taking and discussed adding other things in conjunction to keep me out of the ER on the "bad" days. Wow--she actually listened to me! And yep, she did it all in her pink cowboy boots baby! Gotta love Prescott!

So we were in and out of the office, wait time, lab work, requesting prior records in less than an hour and a half. That has to be some kind of record. And, they did not treat us like we were stepping on their toes....Pretty cool stuff!

Prayers are being answered! The little things I tell ya!

BBQ fundraiser at the VA in Prescott

My lovely coworkers have put together a fundraiser this Friday 10-1-10 from 11am-1pm. It will be at the theater building of the VA and will be $10 a plate.

You will have a choice of two hot dogs or a burger, watermelon, baked beans, chips, a cookie and a choice of soda or water.

There is also a silent auction with 50+ items and a 50/50 raffle (The winner of 50/50raffle gets to keep half the cash raised from that raffle)

**If you are in the Prescott area Friday, please come by to join us!

All the proceeds will go into my medical fund for my out-of-network neurosurgery in NY.

If you are unable to attend but would like to donate, simply click on the button below:

VOTE YES ON AZ PROP 106

Attention Arizona voters: Make sure you go out and use your voting voice and vote YES ON AZ PROP 106! We need to stand up and reject Obama Care. The government does not need to be directing healthcare! If they had their hand in it, I would not be getting this much needed surgery I am getting! PLEASE VOTE YES ON AZ PROP 106.

STAND UP FOR OUR RIGHTS VOTE YES ON AZ PROP 106. Keep our healthcare in the hands of the professionals.

If you would like to read the bill, you can go to this website for a summary or the complete bill:
http://www.azhealthcarefreedom.com/why-freedom/

Proposition 106, the Arizona Health Care Freedom Act, will amend the Arizona Constitution to protect 2 rights:

1. That all Arizonans have the right NOT to participate in any health care system or plan, without penalty, fine, or tax. In other words - no government-forced insurance
2. That all Arizonans have the right to spend their own money to obtain legal health care services.

All clear for surgery!

The weather changed. It gets a little chilly at night now. I spoke a little too soon about being pain free. The cold weather and my body do not like one another.

So yesterday we woke up early and headed to the Valley. My body did not want to move. The warmth of the Valley was inticing. Luckily it was considered a "cool" day for Phoenix and never hit triple digits. I did not realize it but I was a figiting mess. Every song that came on the radio almost had me in tears. I was an emotional wreck. Justin said, "you are nervous". "No I'm not." Was my first reaction. Then the more I thought about it, the more I realized that he was right. After the fiasco with my PCP. When we got to the office, there was a new and cheerful receptionist. Then the neurologist was wonderful. The lumbar puncture results were clear and were faxed to The Chiari Institute. I have called and left a message for the surgery scheduler. Now it is in her hands!

One decision that I made many years ago was to purchase private disability insurance. When I was 19 years old and bought my first home, I purchased the policy. No matter how poor I was, even through nursing school, I always kept the policy. It may have been the best things I have ever done. So, If you do not have private life insurance or disability insurance, go get it today! It may not be much but it is going to keep us from losing our home, car, and will keep our family fed while I am ill and unable to work. As many of you may or may not know, I worked for State Farm for 10 years. If you do not have an agent, feel free to call my friends at Rick Hobbs agency 623-561-8400. No, I am not getting anything out of it. I just want my family and friends to protect themselves!

*Strength comes from struggle, weakness comes with ease...

Beautiful mess

Weston started gymnastics at the YMCA. I have been home and in bed for 5 months now. I do not want him to miss out on life because I am sick. He has asked me for a while now if he could join gymnastics. So I decided, once again, to "toughen up buttercup". I called and it really is not that much for one child to be in gym so he will be going once a week. I figure, I can be tough once a week. And, if not, once in a while, he could miss. So...he got on his bike and I got on my electric wheelchair and we where off for our approximate block and a half ride. We had to go a little early to fill out the papers and get him to class on time. Getting in the main building was no problem. Then I had to work on the paperwork. As I have discussed before, reading is one of my big problems. I have to really focus and it is hard for me and makes my head hurt. Once that was finished, we moved to the gymnastics building where we ran into hurdle number one, the wheelchair does not fit into the door. It's only a little hurdle, I just can't walk long distances or stand for long periods of time. Then hurdle number two, no one was at the desk to help me. So we stood for about 10 minutes with no one to help me...Oh my head started to ache. Weston and I just sat down for a few minutes and waited. Then when it got closer to his class time, I went and stood at the desk for another five minutes. Then, an angel rounded the corner. My new friend Julie. She is a mother and PTA member at the boy's school. She is also planning meals for our family and is actually bringing us dinner tonight, infact. I must have had that look of shear desperation in my eyes. I told her that it was Weston's first time at gymnastics and that I may have bitten off more than I could chew. She quickly went back to get someone to help me. Oh my, I was so thankful. I can not believe how people just show up at the right time to help me. We got him signed up and he enjoyed it so much! Thank you Julie!

Then we rode our little rides home. I decided to take a short cut which lead to hurdle number three. I usually go through my neighbors driveway. It is much less steep then mine and he does not mind at all. I have gone up my driveway before but something must have changed? Maybe the seat has moved or I had too much stuff in my purse? (evil laugh) Up I start and OH NO I START TO TIP! WTH? "WESTON! COME GRAB MY PURSE! I HAVE TO TURN AROUND FAST" Weston ran over so fast and he was so scared. He grabbed my pursed and said "Mommy, you are going to fall" I had to grab myself with my left leg and it jammed the crud out of my entire back and neck. So, I may have spoke too soon about having a pain free week yesterday. All I could think of was Justin was on his way home and have to peel me up out of the bottom of the drive way. So my adrenaline got me out of the situation and Lexi and I had a good giggle out of my "blondeness" afterward. When Justin got home he just kept telling me to "go lay down and you are a mess". Well, I am a beautiful mess and at least I can laugh at myself and that means a lot. I am sitting here typing this with the biggest smile on my face. I just love it!

Pain free week!

The pain has been lifted over the last week....Thank goodness. I have low energy but the pain is not a constant thing this week! YAY!

I called Banner's lab this morning and they told me that the results should be done on my lumbar puncture in two weeks. I have a neurologist appointment in two days. That is pushing it exactly to the day of two weeks. Hopefully my results will be there but I will not hold my breath. This will be my first appointment with the neurologist since my New York visit. Hopefully it will go better than the visit with the primary care visit. I am sure it will. :) I will be sure to have all of my paperwork and correspondence with The Chiari Institute stating that they have approved me for surgery. Maybe he will be more help with treatment for the Ehlers-Danlos Syndrome too.

I hope everyone is having an awesome week! I have not thanked you in a while! Thanks for every one's support. Thanks for your friendship. Thanks for your love. Thanks for your donations and most of all....Thanks for being you!!!! I have the most awesome support group!

Disappointing doctor visit

Wow...It has been a few days since I posted last. It has been rough. I have not been doing much, just waiting. Just waiting for the results of the spinal tap. Although yesterday I had an appointment with my primary care physician for the first time since my visit at The Chiari Institute in New York. This is how our healthcare system is supposed to theoretically work: You go to your PCP (Primary Care Provider). They send you to a specialist. The specialist corresponds with your PCP. You then go back to your PCP. Your PCP then manages all of your care. So no matter how many specialist you go to, you PCP knows what is going on. I walk in and the medical assistant says (in an uninviting manor), "what are you hear for today? I have four items written down that I want to discuss with the dr. She interrupts me when I get to three and says, "that is already three and he will only do the most important things." I said, "Well they all have to do with my pre-op testing and diagnosis that he needs to know about. Just tell him I am here for pre-op lab work and to let him know my diagnosis from New York." I have to keep it simple. Remember "keep it simple stupid" or KISS. Well, that is what I had to do. The medical assistant was not the usual one. But when she realized who I was, she was much nicer. That is not acceptable. It is not acceptable to be rude until you realize who the person is. Then the doctor came in. His attitude was much the same. He was basically saying, "what do you want from me?" HELLO! You need to know what is going on with me! This is MY LIFE HERE!!!!! So I directed him on what I needed. What would I be doing if I were not a nurse? I would be completely lost. AGAIN, UNACCEPTABLE!!!!! I told him what my diagnosises are: Arnold Chiari 1 with cerebral spinal fluid blockage, Elhers-Danlos Syndrome, and Tethered Cord (Just as I suspected 5 months ago!). Then I let him know that the plan was to have the tethered cord release and that I was awaiting the CSF testing. Then I let him know that I also needed blood work. He ordered what I needed. Thank goodness I knew what he needed to order. Then I asked him where I could go and what we could do for the EDS (Elhers-Danlos Syndrome). He just skimmed over it and said, "There is no treatment." Then said nothing further. Now mind you, this causes fatigue, joint dislocation, and dibilitating pain. In fact, I have seen him several times in the past for issues related to this. Nothing from him at all, no hope. I have done research and believe that there is hope for treatment by a rheumatologist and they have braces to keep joints from dislocating and causing further damage. The Mayo Clinic treats it as well. I will continue to search. I will NOT leave it at that! I just can't believe he would just leave me with no hope! If I were at at different place in life, that would be devastating. Wow--Just Amazing. I have to get better already. So many people to help, so little time.

Concour Chiari Walk Accross America Sat, Sept 18th 2010

I have a new goal.

For those of you that know me, I don't say things unless I plan to follow through. A little hard headed, I guess. Next year, I plan to be the first one to host the "Concour Chiari Walk Accross America" walk in Arizona. This year 30 states will be represented. Next year there will be at least 31 states represented. So get in shape and get your walking shoes ready! I will be walking or riding in my wheelchair for the walk next year.

***************************************************************************
** http://livelovelaugh-lace1013.blogspot.com/2010/09/conquer-chiari-walk-acoss-america.html (My new computer buddy and fellow Chiarian has a lot of good info on her blog. I have taken a lot of info from her blog for this post.)

More info about this year walk can be found here: http://www.conquerchiari.org/ccwaa10/LacieHeiser

Conquer Chiari Walk Across America

WHAT? A series of coordinated Chiari walks held at the same time across the country.

WHERE? It is our goal to have at least one walk in each of the 50 states. This year we have 30 walk locations.

WHEN? Saturday September 18th, 2010. September has been named Chiari Awareness Month in several states. In conjunction with the Walk Across America we hope to get more states to recognize September as Chiari Awareness Month.

WHY? To raise awareness of Chiari; to raise money for vital research; and to get people involved.

In 2010 it is our goal to raise at least $300,000 for research. In 2009, more than $250,000 was raised with 90% of the money going directly to fund exciting, new research projects.
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Mom working to raise awareness

http://tonawanda-news.com/feature/x627001221/Local-woman-leads-charge-against-neurological-condition

Concourchiari.org is another good site

The above link will take you to a story about a mom that started having symptoms in pregnancy and now has organized a Chiari Walk to raise awareness. She has also gained some government funding for Chiari awareness. A major problems is that medical professionals know nothing about it. How are Chiarians supposed to get help when there doctor's know nothing about it? The average time is 5 years for a diagnosis. She is hoping to shorten that time to 2 years. Still too long but better. When I look back, I have been suffering since I was 16. I was even hospitalized @21 for 4 days. Then every year, it seems, I am tested for things like lupus, lime disease, and other auto-immune diseases. When I was in nursing school, I remember coming home on the weekends and practically sleeping through the entire weekend and my joints hurt so bad. Then working nights clouded my aches and sleepiness too. Several times, I asked doctors about it but they blew it off, "You are doing too much" or "Get more rest". The problems was, no matter how much sleep I got, I was NEVER RESTED. I am a "glass half full" kind of girl and nothing is going to get me down so I just kept pushing forward. Nausea has always been a problems for me. It was really bad when we went on a cruise in March. Now, looking back, I was on the downhill slide to the "big episode" and being hospitalized for meningitis. And headaches have always been a part of my life. I have NEVER known a life without them. But, I just took Tylenol or Advil and worked my way through school and work. Oh, and both of my pregnancies were horrendous! I can not even imagine going through that again. The "normal" morning sickness never went away. I also had the pain in my neck and what I thought was sciatica. Again, blow it off to pregnancy. I never understood how someone could "love" being pregnant. But now I know why, I was sick!

The bright side to all this! My sister and I got me into the Chiari Institute really quick. I have been unable to work since 4-29-10 when I had a sudden onset of headache and inability to speak and word find which was preceded by approximately 4 hours of chills and puniness. So hopefully, my "down time" will be limited thanks to my sister and my pushiness. So from April to November (hopeful surgery date), approximately 7 months. Way faster than most. I can not even imagine if I would have had to wait for Dr referrals. That would have been so frustrating and devastating..... If anyone is reading this and needs help completing paperwork or questions, feel free to email me. I would be happy to help you. Even if you just need moral support, this can be difficult. A doctor telling you nothing is wrong, when something is clearly neurologically wrong.....Is so hard. The sad thing is, instead of saying "I am not sure, lets get you to someone that can help." The medical profession may say something like, "The mind is a powerful thing" or "You have Anxiety". Those are exact quotes that I heard. I am sorry, just because a doctor does not know what the problem is, it does not make the problem a mental issue. I read a statistic that 57% of Chiarians are diagnosed with a mental condition before correctly diagnosed with Chiari. Don't give up! I am willing to help!

Great day!

http://www.asap.org/index.php/medical-articles/cine-mri/

(info below taken from website above)
Cine MRI Cine MRI (as in cinema) is taken the same way a traditional MRI is, with the addition of either a wristband or EKG leads on the patients chest to measure the heart rate. Each time your heart beats, the cerebrospinal fluid is forced out of your brain, down toward the spine in response to the flow of blood that enters the brain with each beat. The MRI machine is equipped with an additional software package that allows the images to be put together, showing the flow of the cerebrospinal fluid (CSF) as it is moving.

Cine MRI's are sometimes ordered for patients to help doctors determine the amount of CSF flow through the foramen magnum. It can be useful in cases of "borderline" Chiari Malformations or when the question of whether or not decompression is needed is not readily answered using a traditional MRI. A radiologist can determine the amount of fluid that is moving and compare that with normal subjects. Cine MRI's are sometimes useful in showing other CSF blockages as well. Cine MRI's are not readily available to all patients, and their practical use is still debated by physicians.*******


I had the above Cine MRI done when I was in NY. They did find a CSF (cerebral spinal fluid) blockage. That alone would explain why I have pressure headaches, constant "ache" headache, and why I can't go on bumpy roads. CSF is a fluid that essentially floats your brain, it also feeds your brain, has immunological function and assists in homeostasis of blood pressure. So if the flow is restricted, the brain is starved and part of the cushioning is gone. The restriction they found is at the base of the skull through the foramen magnum. My Cerebellum actually protrudes through the foramen magnum. (IT IS NOT SUPPOSED TO DO THAT). When the fluid is not there to "float the brain, the brain is hitting the skull! Yikes---and yes it HURTS LIKE HELL! Also, when the CSF is not flowing to parts of the brain, it hurts, kind of like a heart attack. My blood pressure is usually low but with just a turn of my head, I have drastic changes in blood pressure. So weird.

I had a GREAT DAY TODAY! Around 0900, I realized I felt OK so I called my friend. She happened to be in my neighborhood so she swung by and picked me up. She took me to run around. We went to the store, the bank, and to get a sandwich. It was so fun. Her daughter is 18 months old. She sat on my lap for a little bit when I was driving the electric wheelchair. She thought that was pretty cool. Until she got board. Then they hung out with me for a little bit at home. At one point I looked over and she had Justin's Ipod to her ear like a phone. Then her mom realized that she had something in her mouth. The baby quickly swallowed it. Guess what? She swallowed both of the rubber parts of the ear buds! Gross but really funny!

YAY FOR THE GOOD DAYS!!!!

Pre-op testing complete...now wait

All the pre-op tests are done....Now we just wait for the results....I have an neurology appointment on the 23rd. Hopefully the lumbar puncture results will be back by then. When they are back and clear, we send them to The Chiari Institute and we can schedule surgery! I am hoping for early November.

No kids this weekend :(. I was so worried. Usually, I had Kyler with every weekend. When Justin would be working, Ky would be there to help me if I was having a bad day. I am really missing him. My sister is coming up to stay with me though. Can't wait. I think we are going to lay by the creek in the shade while Justin works on the creek crossing. When we are not doing that, I hope to watch some funny movies and eat ice cream. We all need some happy things to lift us up.

I don't even know the dates of surgery yet, but last night, I was trying to find ways to have a night layover in Little Rock. That way I can see Kyler before I have surgery. I miss him so much. I bet he has already grown a foot!

Tap tomorrow...Little scary :(

Lumbar puncture, spinal tap, whatever you call it....yucky! Tomorrow is the day of torture. Justin has to take the day off of work. My appointment is at 11:00 am but we have to be at the hospital by 10:00 am. Which means we have to leave Prescott by 8:00am to be in Sun City on time. Then after the tap, I have to lay flat for two hours and then the drive home will put us back in Prescott at approximately 3:00pm. A full day to say the least. I am nauseous just thinking about it! The testing for aspergillosis will take about 3 weeks. Hopefully it and the other CSF test will be clear and then I will be able to schedule neurosurgery. The surgery is actually called "Section of the Filum Terminale". In English, they are cutting the connective tissue that tethers the bottom of the spinal cord to the base of the spine. The use a tool to test the tissue to be sure that they are not actually cutting the spinal cord. As you could imagine, it looks very similar and they do not want to accidentally cut the actual spinal cord. That would be very bad.

When we were in to see the surgeon in NY, he told us this funny story about a husband and a wife. The husband was a rather large man and was a Navy Seal. Dr B told us that the husband sent him an email the night before his wife's surgery simply saying, Dear Dr B, You do Neurosurgery and I break kneecaps.... It was so funny. I wish I was thinking clearly but I was tired at the time. My hubby is in construction and is a cattle rancher. So afterward we were thinking and came up with this, My husband is going to send him a message the night before my surgery saying a little something like this, Dr Dr B, Remember the story you told us about the husband that was a Navy seal? Well, you do neurosurgery and I dig big holes and cut off nards.....

Have a wonderful hump day everyone. :)

Chi soft cervical traction device

Fellow Chiarian's or anyone with cervical neck pain. The neurologist at The Chiari Institute recommended this. They are usually around $100 but I got it off of Amazon.com for $40. It helps relieve the muscle tension in my neck and I think it helps with the flow of the the cerebral spinal fluid. We came down the ranch road today and I did not even cry. It really worked! It stretches my neck out. I feel taller after I use it. It just makes me feel unballed, that is the only way I know how to describe it. I just got it last night and I am already in love with it!!!!!

little piece of heaven

Good Saturday morning!

Going to the Ranch. So excited to see the beauty that the rain has brought us. I bet it is green out there. I bet there are lots of little baby cows running around. It is so fun and exciting to see. If it gets warm enough, the kids will get to play in the creek. It is hard to believe but they have not played in it once this year. I was sick all summer and they never played in the creek. They usually do every-other-weekend all summer long. Hopefully we can get some pictures so we can share the beauty with you.

My mother-in-law just returned from vacation. I can't wait to see her pictures and hear their stories. Oh, I also can't wait for her wonderful home cooked meals. Since I have been sick....I take that back, always, she always cooks for us. It is part of her identity to cook for the ranch hands and her family. We have NEVER had a meal that we did not like. She is officially (next to my own mother), the best cook in the world! She also has every movie we ever wanted to see. We love to go "check out" movies from Grandma's movie store. We have missed them while they were gone. Cooper, my dog that became her dog, missed her the most though. That dog is so freakin spoiled. She gets up and makes him a full breakfast in the morning. He did no know what to do when she was gone and all I gave him was dry dog food. He thought he was so abused. He did not eat for days. I finally broke down and put hot dogs in the food but I refused to "make" the dog food.

So I must endure the "hell on earth" of driving the two mile dirt road to get to our little piece of heaven. But, it will be worth it for a few days in heaven!

Have a safe and fun holiday weekend everyone!

Life's delicate balance

So today is the first day that I got out of bed with the kids before school. I actually feel okay, well---at least I don't feel like I was ran over by a truck last night. Maybe like I was hit a week ago and I am healing. :/

This morning Weston and Jake did not have any clean shorts. I almost cried. They have pants for goodness sake, they can wear them. But they both chose to wear shorts that they had already worn once before. Heck, I do that with my jeans all the time. However, it is just little things like that almost send me over the edge. Last Saturday night we had the medical benefit dinner. I had to put my best face forward but I have not gotten out of bed since. The only things I have done is go to the bathroom, eat, and go to one dr's appointment.

So my delicate balance act begins on days like today. I feel okay and I have so much to do. Justin already does so much. I don't want him to feel bad. He already does enough and he could not possibly do any more. So, days like today...I put a load of laundry in and rest. Then I do something else and rest. Then we play this little game of "Don't do too much, you will run yourself down". So, I have to just live with piles of clean laundry. At least they are clean. They may be wadded up and wrinkled but at least they are clean right? Then you should see how Weston comes home dressed some days! He teacher must think we are nuts...

I am such a strong independent woman and it is very difficult to depend on others for everything. One thing I hope to get back from surgery is the Independence of driving. That will be a huge gift back. No, I take that back...I hope to get three things: the ability to drive, relief from migraines, and ability to walk (unassisted).

Please God, give me the strength to get through the good and bad days with strength and dignity....

X-box Raffle winner/ psycho exam hee hee

Kathy Miller, an RN at the VA, won the X-box Arcade game. She has grand kids that are going to love it! Yay! We made just under $1000 on the raffle. Thanks to everyone that bought tickets and to David for donating it. That will make a huge dent in our medical bills.

I passed the psychological exam this morning. And, no matter what you say....I did not cheat! I really passed. I am prepared for surgery. We did discuss my ups and downs in emotion and discussed that they are "normal" for what I am going through. I actually feel pretty darn good emotionally. Amazing, I know, but I do. I am somewhat relieved to have these diagnosis. That is weird too but it gives me answers to why I feel the way I do.

My neurologist called me today. Yep---that is what I said. We are becoming quite the phone pals. He called me to discuss the strange test they want for surgical clearance. The last think I need now is a spinal tap. They will be testing the cerebral spinal fluid for aspergillosis and any other CSF infection. The good thing is that will be soon. Bad thing is, he thinks that test takes a few weeks to run in a lab. Darn it. He is a little worried about doing the spinal tap. I am too! It seems like that is what send me in this downward spiral in the first place. Anyway, we are going to be put back a few weeks. I am also going to call my primary care physician to have blood tests done too to make sure WBC and RCB are back in normal range. I think I will have them run a blood test for aspergilosis too. Might as well to be on the safe side. Hopefully That will all be negative and we will be on our way.

The reason the dr's from The Chiari institute want the aspergillosis rule out is due to some of the strange symptoms I have. They are visual and can be scientifically proven, they just don't know what the hell is causing them. There are so many things in this world that there are not answers for. The scary thing is that usually, you do not get aspergillosis (a fungus) unless you are otherwise immunocompromised. The doctors also believe that I also have some other kind of autoimmune process which would explain that. So, that will be another step in this long process. I will have to try to figure out what the heck is going on there. Lupus? maybe---that always seems to come up. Every darn year. And, when I came back from my cruise, I had a strange rash on my face. I chalked it up to sun exposure and over use of sun screen. Lime disease? That seemed to come up a lot too? Who the heck knows. I have high auto-immune markers.

Maybe someday we will know what the heck is going on. Until then, we are on track to get one problem under control. NOTICE: I said "under control" I want all my friends and family to know that the tethered cord will be released and there will be some relief but there is no "CURE" for Chiari. There will be good and bad days for the rest of my life. Please be patient with me. The new diagnosis of Ehlers-Danlos Syndrome, is just setting in. Not sure what to think of that yet. It will never go away. There is no "CURE" for it either. Once it gets bad enough, surgery can be done to tighten the ligaments in affected joints. Also braces can be warn. That is something I think will help me a lot. The Ehlers-Danlos is a connective tissue disorder and is probably the reason I have tethered cord (a disorder of the connective tissue of the base of the spinal cord). The Chiari Institute is doing the research on the link between the two. Yippee. I get to help by participating in that! I will have DNA testing done. They will hopefully be able to isolate the gene that causes this syndrome.

Anyway---we are well on our way to setting a date for surgery. One more hurdle for this slow moving turtle!