Disappointment does not even cover it really. Heartbroken is more like it. I guess you need some info to fill in the gaps and refresh some of the old since it has been so long since I updated. I will try to get better about it. I just only have depressing news and this was suppose to help not hurt. First "Cocky Kansas" was just that, cocky. All talk...NO WALK. His name was Dr. John Smith (yeah, seriously parents out there....don't name your kid such boring names) and while the facility is amazing - he was not. To be honest, he looked terrified of my MRI. He said I had 14% over extension motion when normally a bad one is 3%. Whatever that means.
Ortho 4 States
He told me he would have to fuse my whole spine from T5 to S1. That is a whole heck of a lot of metal. Titanium to be exact. He would not even come talk to me after. He sent his assistant in. I call foul! He said I would not be able to tie my own shoes etc. he said my life would be a big pile of "poop" (only he did not say poop - nice talk Doc).
I was crushed. I pretty much started to totally give up at that point. Time went on and I had been in so much pain still fighting raising my meds. I have an AMAZING Pain Management Doc who listens to me and tries to work with me not wanting to raise my meds and not just pumping me full of crap like my last Doc before my surgery. Her name is Dr. Regina E. Thurman .She has saved my life on more than one occasion. I was starting to actually believe this was my life and not some horror flick on Lifetime.
My Mama though...she never gave up. She found me an amazing Doc. His name is Dr. Say-zee or Sa-zee (that's how you pronounce it but I have heard people say his name both ways) I went to Dallas after her trying to get me in for MONTHS.
Dr. John A. Sazy
I saw him in September. I stayed in Dallas for about a month while I went through more of the same tests and treatments I have already been through. He said the previous Doctors notes were awful and he could not tell what was wrong so he needed to play "Dick Tracy" and figure out what my issues were before he could say if I was someone he could help or not. Keep in mind my medical file needs a rolling carry case it has so much in it. He could not get the MRI and CT disk to run so he just had their horrible notes. Below is a partial cage.
He went through everything and we started with Dr Ag-ger-wall (that's how you pronounce it)
Dr. Ved V Aggarwal
I went for X-Rays first...
Then to Aggarwal. My Mama was there each time and made things so much better.
Usually my daughter goes. She gets quite and education (she is going to be a nurse) by being my daughter. I say she should get extra credit for having me as her mother. We started with injections in L3.4 and 5. I noticed a difference but not a lot. Currently as well as while I was there I could/can not feel the skin on my upper left thigh and the bottoms of my feet are in that stage before they fall asleep where they feel "thick" but I still feel my steps they just feel "wrong" and I worry I will lose more patches.
So, after those never blocks and steroid injections Rhizotomy
What is in me now....the pin marks are where they stuck me and if you zoom it you can see the needle in my spine. Cool huh? Now, we at least knew where the problem was. I had to keep a diary of my pain and things I noticed after the proceedure. I did take photos for you as best I could anyway.
I went back to Dr. Sazy and also helped him get the disk to run (Traveling Tech support , that's me - love all serve all) I will try to add some shots of that later. This is basically it...
I have MANY PROBLEMS - He waved his hand over the screen and said "this, this is a mess" and began to go over each issue.
First, in looking at the MRI and CT Milo-gram he saw one of the screws from my first surgery is actually out of the spine all together and stuck in my muscle. This is tearing and scaring and tearing and scaring with each moment (bending and reaching and twisting - so basically everything over and over) this is REALLY BAD. So this needs removed.
Second, my Fusions are at L1-2 and L45 so everything in between above and below is crumbling. They are all a mess. I have DDD (Degenerative Disc Disease) which means all that is failing drastically and very quickly. He feels it is amazing I am even walking. I am in desperate need of a cage to contain the damage and stop the progression which will end with me in a wheel chair if something is not done soon. Each moment I make even shifting on the couch causes grinding like you would not believe. It is a grinding others can feel with their hand on my back and hear. This is seriously bad. Sometimes it pops too and I drop to the ground. Imagine someone digging in your shin bone with a spoon that sound. That feeling it close but not near as bad.
Third, I also have Spinal Stenosis which is a narrowing of the spinal column. Right now there are points that are almost closed completely.
What this boils down to is I am in BIG trouble in little China. BAD. I need this surgery.
He asked me what my expectations were. I said "well, I would like to be able to walk without wanting to cry and more than 100 feet, go hiking with my family, ride my horses, just have my life back, I know I can never run or anything". It was at this point he looked at me like he was really confused stopping me mid sentence and said "why not?" It was then I began to cry. I use to run all the time. I loved running but I haven't run in years. The tears were flowing then and I said "really, run?" He said "you are going to have to work really hard for me but yes, you will be able to run." Then he said "now if you want to be a pain free 20 year old, I can't do that BUT if you want to be a relitavly pain free 40 year old....that I can do." I could not believe it I said I know this is probably not ok but I don't care, (I grabbed him and hugged him) thank you, thank you so much." He smiled and said the surgery would be easy for me, I would be asleep it was him that would suffer 9-14 hours of surgery. He said I needed a Nuclear Cardiology Stress Test to make sure my heart would hold out in such a long surgery and I could do it there or in Arkansas. Once he had that he would schedule me for surgery before Christmas. I could not believe it. How wonderful to start a new year off FIXED, WELL, HAPPY and at peace. I wanted to go home so badly...I had been there for such a long time.
My kids came to get me and bringme home. I was so happy. I called my family Dr. who is awful by the way, Northwest Family Medicine: Declerk Ryan MD. He actually fought me over the test and said it was unnecessary. I called my old family Dr in Eureka...same thing NO ONE would help me get a simple (ok so it was not simple but still) test. I was beside myself but kept after him. Finally he asked to talk to Dr. Sazy. I could hear him in the next room arguing with him over why I needed it and not just an EKG and Chest X-Ray. Nearly a month later I got the test.
So....The Chemical Stress Test was weird. You actually felt like you
were running. I will get back to that. First the put the IV in with dye
then they took pictures of my heart resting. Then they hooked me to all
this stuff and injected me again. Only this time it was with the
adrenalin like stuff. I so glad Taylor was there. It was scary. It felt
like someone reached in your chest and was pumping your heart by hand
with big grabbing bursts. Your arms and legs tingle like when
you run and you get all jello shaky. It was a yucky feeling. Then they
take your vitals and give you another dye injection and you get a
caffeine soda that is what helps your heart go back to normal. Only my
heart decided it was not going to behave. So, I had to drink 2 drinks and
it was better but not normal. I still feel shaky and yucky. My legs
keep cramping. It sucks but I had the test now to get it to Dr. Sazy which you would think is simple right? Oh no, not in a million years did I think it would take 2 weeks. The Dr De-Jerk (his new name) and gang held it. Why? Who knows your guess is as good as mine.
At last, Dr Sazy has the info and I wait for a schedule. My bags are pack and have been packed since I got home as I will spend many months recovering. He originally said 4 in Texas but after I begged he said if I worked hard...I could go home if everything was going well. Then he told me "go buy some new tennis shoes" I could not have been more terrified and happy at the same time. I was so ready to be "BACK" doing what I love and being the person trapped inside a broken body.
Michelle FINALLY gets a break and has HOPE. Only, it did not last. The insurance denied the coverage for the surgery. This is anywhere between 100 - 200 THOUSAND for this....maybe more. My heart is officially broken. I don't know if I will recover this time. I just don't have enough fight left. The pain I feel...there simply are not enough words. I have so many things fighting against me yet I keep going. Keep searching. I am costing the insurance WAY more by staying this way and getting worse. I am just not strong enough. I have never felt so lost and hopeless. EVER.
Now, it's a good thing I type fast. I have to go lay down I am actually crying as I write this but...it needed written. Much more needs said but right now....there is simply nothing left. Thank you for reading and your love, support, prayers and more. So much for new tennis shoes, and hope.
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