Saturday, May 28, 2011

~ UNFORTUNATLY, my surgery was a complete FAIL!


So on Friday May 27, 2011 I go to Rush, in Chicago, for a Lumbar Shunt Revision. First of all this surgery was scheduled 10 days ago, and I check in at registration and the receptionist tells me that the procedure does not have authorization from my insurance, and I say why not? This surgery was scheduled 10 days ago... She says that I was an add on yesterday!  WTH??? Which means that Dr Munoz's Nurse Practitioner DID forget about the surgery... She was supposed to call me last week to do consent over the phone, and she never did... I had to call her the day before surgery and remind her she never called for the consent! Anyway, I signed the paper saying I was responsible for all charges if insurance doesn't pay... Whatever! I was miserable! And I knew it wasn't gonna be a problem with the Insurance. So we get thru that, they take me back to the pre-op area where they do your vitals, and get gowned up... They don't have my History & Physical that I JUST HAD DONE ON MONDAY!!! I sat at my Dr's office for 3 hours (because it was a fit in appointment) to have this done and missed my best friends sister's burial to get it done... AND I TOLD THEM MY SURGERY WAS ON THURSDAY, JUST TO ENSURE MY PAPERWORK ARRIVED ON TIME! I thought I'd die when they said they didn't have my History & Physical... I told the nurse that I knew his number so they called 2x's to get it! I missed my surgery time because of that, so he took an emergency case... They finally got the H&P and I go upstairs to the holding area. I requested to see Dr Munoz before the surgery because I had a concern about the shunt placement. We discussed that first, he said he would do his best to move it without making another incision.  Then we discussed the shunt and how it's not draining enough fluid, he told me & my husband right there that he was NOT going to change the valve setting, the only thing he was going to do was check the valve to make sure it was working properly, make sure there were no kinks in the tubing, and that there were no clogs... He argues with me about the setting of the programmable shunt, telling me that his documentation said I was fine at a 1.5 setting, and I said, "REALLY" when was that, because that damn thing was malfunctioning from the very get go... He argued with Jeff and I for about 5 minutes over this... So now I'm laying there, PRAYING that maybe it IS just clogged, or not working all together...  So I finally get the IV with Versed, say goodbye to Jeff, and off I go...

I don't think my surgery was until 1:30pm, it was supposed to be 10:15am
My Neurosurgeon opened up the previous incision (2nd time this shunt has had to be opened after initial placement) and shunt was indeed working, no clog, no kink, and it's draining just fine... So he closes me up, and he was done! I needed a different valve, one that would drain more fluid!!! As I laid there in the recovery room, my head was killing me, and was swooshing like CRAZY!!! I was beside myself that he did this! Put me thru all that, and NOT change the valve! I am soooo pissed off!!! He has been giving me an attitude and has been kinda standoff-ish ever since he put the programmable shunt in as a Lumbar Shunt and it Malfunctioned!!! GOD FORBID THAT SOMETHING "HE DID" DIDN'T WORK! So ~ sure enough, he opened me up, said it was working... And that was it! I NEVER SAID it wasn't working, I said I NEED more fluid drained off... Which means, I needed a different valve! The swooshing will drive someone CRAZY!!! I CANNOT STAND IT! And am SO LET DOWN right now! I kept telling myself on Thursday that in less than 24 hours I'll feel better!

Friday on the way home from the hospital, (it turned it into an outpatient procedure) I told Jeff the swooshing is horrible, and I feel like my head is in a vise... How can that be OK with any Dr? That your patients brain is compressed by all the fluid that is in there, and I cannot even function at Neuro-Rehab or anywhere else for that matter, because of the pressure... I was wide awake from 2am - 4am because I was in so much pain, my incision was very painful and my head is killing me. I had to get up and eat a banana so I could take my pain meds.

And let me tell you, 9am on Tuesday I will be on the phone with my Neurologist telling her she needs to order me a spinal tap so I can prove my pressure is elevated! And that she needs to fax all of my information to IU in Indianapolis. Then I will be leaving Robyn (NS's Nurse Practitioner) a really nasty message about what he did & didn't do, She needs to remind him that the programmable shunt NEVER was set right, because it malfunctioned...  Then I will be calling my family Dr and demanding to speak to him about how I missed my surgery because his office didn't fax my stuff on time... And the only reason I would do that is because this is not the first time this kind of thing has happened. I called his office a week ago Monday and left a message, and I was at his office this past Monday and still NEVER heard back from them, and it was a question regarding a RX that he wrote me.


Friday, May 20, 2011

~If Tomorrow Starts Without Me~

If Tomorrow Starts Without Me…

If tomorrow starts without me, and I’m not here to see,
If the sun should rise you find your eyes all filled with tears for me;
I wish so much you wouldn’t cry the way you did today,
While thinking of the many things we didn’t get to say.
I know how much you love me, as much as I love you
And each time that you think of me, I know you’ll miss me too.
But when tomorrow starts without me please try to understand,
That an angel came and called my name and took me by the hand.
He said my place was ready, in heaven far above
And that I’d have to leave behind all those I dearly love.
But as I turned and walked away a tear fell from my eye.
For all my life I’d always thought, I didn’t want to die.
I had so much to live for, so much left yet to do.
It seemed almost impossible that I was leaving you.
I thought of all the yesterdays the good ones and the bad.
I thought of all the love we shared, and all the fun we had.
If I could relive yesterday, just even for a while,
I’d say goodbye and kiss you and maybe see you smile.
But then I fully realized that this could never be,
For emptiness and memories would take the place of me.
When I thought of worldly things I might miss come tomorrow
I thought of you and when I did my heart was filled with sorrow.
When I walked through heavens gates I felt so much at home.
God looked down and smiled at me from his great golden throne
He said, “This is eternity and all I’ve promised you”
Today your life on earth has passed but here life starts anew.
I promise no tomorrow, but today will always last
And since each day is the same there’s no longing for the past.
You have been so faithful so trusting and so true.
Though there were times you did some things you knew you shouldn’t do.
You have been forgiven and now at last you’re free.
So won’t you come and take my hand and share my life with me?
So when tomorrow starts with out me don’t think we’re far apart,
For every time you think of me, I’m right here in your heart.

Monday, May 9, 2011

Lawyer Appt & Follow up with New Neurologist

So Jeff & I went to see a Lawyer on Tuesday 5-3-11 RE: filing an appeal for Social Security Disability Income. I have NEVER met with a lawyer, ever... So needless to say I was scared to death! She asked a lot of question's, and I told her what's been going on since 2003, and who my Dr's were... She agreed to do the case, we agreed to hire her! We were there for a few hours, due to the Appeal paperwork that needed to be filled out. She wanted answers to all the test I had done for the "new neuro Dr" but I didn't have a followup appt with her until the next day to get those results. She said if I have "dizziness" (Ataxia) that I would be golden for SSDI, because neither one of my conditions are SSDI approved... I told her I had a ton of tests done, but don't know the results... Jeff & I had mixed emotions when we left the office. Bitter Sweet. When I had the tests done, I prayed nothing else was wrong with me, now I'm praying there is something else wrong, to help this process go smoothly since IH & Chiari are not approved disabilities... The next day, we meet with my new neuro to get all the test results. Our Lawyer used to work for SSD, that's how she got into helping people "fight" for it. She said that it's a proven fact that people who have "dizziness" CANNOT work... That's why it was Bitter Sweet. I surely don't WANT any more things wrong with me... But it is already broken, I've already lost my job, it's PROVEN by tests that I AM DIZZY!!! Lol... I think we knew that!
The next day, Wednesday 5-4-11 we see Dr De Leo (new neurologist), she meets with me at 8am, before regular patients! I had 100% of her attention, she made "special time" to meet with me!!! Well, as it turns out, I do have some serious Vestibular Disorders! I suffer from Dizziness!!! BONUS! I'm only happy about that because I started to feel like people didn't believe me, that all the times I have to pass on "get together's" parties, special occasions, etc... I now have proof! Lol... I have something serious going on in my right ear, inner ear, she wants to prescribe me a med, but wants me to think about it/research it right now! (I liked that! She didn't shove pills down my throat) I also have issues with my left ear, not as sever as the right side. My MRI, is just a constellation of problems, slit ventricles, Chiari, decompression surgery... I need to have another shunt revision, she really wants me to get a "programmable" shunt, but we already know how that turned out once already, but she seems to think that with "enough" weight loss, that a programmable one will work for me in the future. Dr De Leo is going out to dinner w/ my Neurosurgeon, Dr Munoz, later this month and they are to discuss this! (I like that too!) I also have another issue that I've been fighting with Dr's about for years. I have a Positive ANA... AGAIN!!! It comes & goes, I've been trying to get a Dr to look into it, but they always say it's no big deal, well this time, my # was sky high... It needs looking into now! ANA is Antinuclear Antibody = autoimmune disorder/disease... To go along w/ it, my ESR & C-Reactive proteins are very high, which is also an indicator of autoimmune disease... And to top it all off...I am here today at my Dr because I need to get a follow up chest CT, because the one I had done in Feb. showed a spot on my lung. So on Tuesday May 10th I go for a CT scan with & without Contrast...

The Spoon Theory written by Christine Miserandino

The Spoon Theory written by Christine Miserandino