And the Results are in..Kinda

results

Ahh..Welcome back everyone! It’s another sunny day here, though a bit Chilly! So last time we were awaiting results from the CT scan…and boy did we get them!!! But before I get to them…like that..leaving you in suspense??!!

First things first.. this week my dad has had off, and he’s taken me to appointments, and Christmas shopping (much to my dismay), yes i’ve been the Grinch this year.  I’ve just not been in the Jolly mood. But I’m slowly getting there. We’ve gotten some good presents for my son! He’s going to have a great Christmas! One thing I’m excited to give him is an old Musical Keyboard my sister found for me. I know some may be shocked that’s it’s used, but you know what? He’s 4! So I’m excited to give it to him. He has one at my mom’s and always plays it, so I’m thinking he’ll love this gift! I also got him some Duck Dynasty pajamas, because I’m just that awesome! 🙂  Ok ok. Enough gushing about the Christmas presents. My mom had knee surgery yesterday, and made it through alright. I’m so happy! I’ve been trying to stay active, but the pain isn’t really allowing it. The pain in my head, neck, back, hips, legs, hands is just becoming so much .  To find out half of your Femur head is missing…wow that’s a lot to take in!!

Alright my lovely readers, now i’ll lift the suspense!  Below are the results:

CT-Hip:  Mixed Sclerotic Lesion in Left Iliac Wing measuring 2.8 x 2.1 x 1.8 cm in greatest dimension. Appears Benign, possibly enchondroma.

CT-Lumbar: Mild Multilevel loss of intevertebral disc height.  L2-3 broad based posterior disc bulge more prominent at the neural foraminal with mild neural foraminal stenosis; L3-4 mild circumferential disc bulge more prominent at the neural foraminal with mild bilateral neural foraminal stenosis; L4-5 mild circumferential disc bulge more prominent at the neural foraminal with mild canal stenosis; L5-S1  mild circumferential disc bulge more prominent at the neural foraminal with mild bilateral neural foraminal stenosis.   Non obstruction 2mm calculus in midpole of right kidney. Additional adjacent 1mm calculus cannot be excluded. Punctate calculus is also seen in midpole of left kidney. Mild Sclerosis at sacroiliac joints, limited visualization of iliac bones.

Bone Scan Whole Body-  The Thoracic-lumbar junction has a mild convexity to the left. There is  increased tracer activity to the  right side of skull.

So… I had my CT scan done December 9th, and was sent for a Bone scan which was done December 16th. Tuesday morning my ortho’s office calls me to come in. So I go in, wondering what’s wrong. When my doctor comes in, she’s talking to me, and says. “have you ever had surgery to your head, or a head injury.” I tell her no. That’s i’ve been complaining for months to my neuro of these weird headaches and pain. She takes my films and puts in on the screen and shows me right there in my brain is something, and they don’t know what it is. She said due to what the bone scan looks for and my symptoms I need a neurosurgeon, and sooner rather than later. I ask her point blank what she thinks.. She says the words I feared the most. She doesn’t believe it to be cancer because it’s not showing up that way, but she said it could be a tumor that the tracers are picking up. So, she referred me to University of Miami Neurosurgery, as it’s one of the Top neurosurgery departments and it’s an hour or so away. Problem is, I lose my health insurance Midnight Dec.31. So I sit here and wonder..If the neuro had followed up on my complaints, or given a damn would this have been found? If it is a tumor, can anything be done??? As it is now, I’m losing my hearing, and my eyesight its worsening as is my speech, and other things. So.. How was none of this found by the renowned Cleveland Clinic??? Simple, they didn’t give a shit! I should be angry, but I’m not. Anger gets me know where. I’ve been set on this path for a reason, and I’ll continue on it. With my same strength and courage, with the love and support of my family and friends. This journey is far from over. Giving up isn’t an option.

Never-give-up-hope-..

You found what, where?

 

now what

I was scheduled for an MRI and an appointment with an Electrophysiologist at Johns Hopkins on November 25.  This C-Spine MRI was important. They were checking for spinal lesions for MS. I arrived in Washington DC, Sunday night after a 2 hour delay due to a mechanical problem with my plane leaving Chicago. I was exhausted by the time I got in, as my flight was at 8am that morning. I had trouble in security at FLL, there were no female TSA officers on the floor to do a pat down, as I have a pacemaker and unable to go through metal detectors, so I waited, sitting on the floor for 20 minutes. I thought this was unacceptable.

 Once I got to DC, I was so tired I fell asleep pretty much as soon as I got to my hotel. The next morning, I was surprised with a trip through the capitol on the way to Baltimore to see the monuments. 🙂 Once arriving at Johns Hopkins we were prepared for the long day ahead. First was my MRI. Then my appt with my EP. Everything went well during the MRI. So I was off to see my electrophysiologist. He was apparently on vacation, but made arrangements to come in and see me. We went over everything. I show signs of pots, and NCS, but at intermittent times. I still have Inappropriate Sinus Tachycardia. We agreed to continue monitoring everything. If I worsen, then we will seek medication or if necessary another surgery.  We also discussed the possibility of MS, and other possibilities that could be causing my symptoms. He wanted to meet with a Rheumatologist to get their thoughts on it. And possibly schedule a phone consult.  I’m excited I have him in my corner!  Before I left the hospital I was able to get a copy of my MRI disc, and request my report be emailed to me. 

The next morning the MRI report was in my inbox. I read it and cried.  There is Disc Dessication from C3-C7, there is also a hemangioma on my C4.  Degenerative Disc Disease and a benign tumor..not what I was expecting..AT ALL!!! But you know what??!! It’s ok. I’m strong enough.I have been in horrible pain for months in regards to my neck and back. Since I got back from Johns Hopkins the day before Thanksgiving, I’ve been basically bedridden. So, today I went to see and orthopedist that specializes in neck, and spine. And again, another shock.  Today I learned I have Scoliosis, and A deformity of my femur in my hip socket, also there is a lesion on my left hip bone. He ordered CT Scans immediately.  He seemed upset to learn that I’ve had x-rays recently by my other doctor and nothing was said or done. I’m still trying to remain positive.  It’s all I can do. I refuse to let the darkness or whatever this disease is wins. I’m scheduled for CT scans Friday, and to see him immediately afterwards.  My questions is this, how was any of this missed?? Or wasn’t it???  My family is trying to be supportive, but my dad is becoming increasingly frustrated and unpleasant. SO i’ve decided to stop telling him about any of it. If the scoliosis is as severe as my ortho fears, i’ll need surgery to help me, also surgery to help fix my hip.  My dad informed me tonight that he has a curved spine, and that my uncle has scoliosis. He blames it on the way I walk. There is no way walking this way for barely a year could cause damage that way my back is now. The doctor said it’d take years.  

So now we wait to find out how severe the curve is, what the lesion is, and we have to check bone density as well. One thing I do know. My friends, and family have been incredibly supportive. They’ve shown me such love and support throughout this past year and I’m so grateful.

family and friends

Vanderbilt- At Last

2013-11-12 15.28.08
My son and I before leaving to the airport

 

I am home from Vanderbilt. It was a long appointment, and a very difficult one for me.  The travelling was one of horrible experiences to date. Leaving Ft. Lauderdale airport,  I was refused a wheelchair because I refused to check my carry on bag. By the time I made it to the gate I had nearly fallen 3 times, and was completely exhausted.  The lights and sounds made my headaches excruciating.  Being in an upright position for so long, affected my spinal headaches, so that gave even more joy to my travelling. The travelling had worn me down, and I was at my worst by the time I got to Vanderbilt Thursday morning. I stayed positive, rather them see me at my worst, than my best! Because of the cold, I was seizing even more than normal, I was also falling a lot more than normal. I arrived at  Vanderbilt  at 8:30 am, I was tired, nauseous, shaky, and just feeling like crap. We headed up to the 5th floor, my appt was at 9:30, but due to not knowing the area or traffic we left our hotel a little too early! We checked in, and sat down to wait. I was called in for the autonomic testing. They were to do the Valsalva testing, breathing testing, and a tilt table, minus meds.

AFT Testing at Vanderbilt
AFT Testing at Vanderbilt

The nurse shut off all the lights for me, due to my sensitivity to them.  As the nurse finished hooking me up to the heart rate monitor, I started seizing. The pain was horrible, and my mom was trying to comfort me through it. Apparently I stopped breathing during it, so that scared her. According to my mom, who is a nurse, and the Vanderbilt nurse my heart rate went from 67 to 156 during the seizure.  After that I was out of it for a few minutes. The nurse continued hooking me up to the monitors. She couldn’t get a reading on the continuous bp cuff on my finger as my hands were so cold, she had to use hand warmers and then use a baby cuff. LOL.  As we started testing She was patient and comforting. We did the breathing test, where I had to breath against resistance, my goal was to hit 40, I didn’t even make it to 20. OOps. I became dizzy, it was awful. The other test was breathing in through nose and out through my mouth, I kept mixing it up and getting confused, and dizzy. This got me frustrated and near tears. After that was the tilt table. She tilted the bed up and almost immediately my nausea worsened, my chest pain worsened, and my dizziness increased. I kept saying I feel like i’m in Alice’s rabbit hole, according to my mom. I became very disoriented and confused, lethargic really. The test was finally over!  After that we could eat and wait for my appointment with Dr. Robertson.

 

Post Tilt Table
Post Tilt Table

So the moment we had been waiting for, for 6 months was finally here!!  We were taken back around 2:15, pm to meet with Dr. Robertson. I immediately liked him. He listened as I explained everything, how I felt, my daily routine, my limitations. He genuinely cared. He then asked me questions, and my mom questions. I tried so hard to keep up, but I kept getting confused and repeating myself. He was very patient with me. He then started his exam of me. He paid very close attention to my hands, in particular to my fingers, checking for inflammation. He also was interested in the severity of my photosensitivity. We spoke of my symptoms and how they affect my life. What’  I’d like to change. I explained I want to walk down the aisle, I want to dance with my husband for the first time. I want to be able to have a conversation with someone face to face without getting confused. I want to me able to go into the sun without feeling pain or passing out. He looked through the records I had with me from Cleveland Clinic. He was very interested in my case. He says I definitely have an autonomic dysfunction, but that’s not the only thing going on. We asked about MS. We waited with bated breath. His response was what i’ve known in my heart. That it’s a huge possibility. He suggested I get my MRI of my spine, he feels that’s where the lesions would be considering what is affected in my body.  I still don’t know if I’ve processed everything. He wanted my records, since Cleveland Clinic did not send updated copies prior to my appointment. I told him I will make him copies, and send to him. He said he really wants to go through my records page my page, and really read them and make his conclusion. I walked out  numb, not knowing to feel. He wants to stay in touch, and keep him updated on what we find.  He was so wonderful. By the time we left it was after 4:30pm.  I made the copies Saturday, and sent them via fedex, they will arrive tomorrow. I’ve already called his office and told them.

Mom and I at Vanderbilt
Mom and I at Vanderbilt

My Cervical MRI is scheduled for Next Monday, as well as seeing Dr. Tandri at Johns Hopkins. Finally, i’m getting closer to answers. I’m scared of what the MRI will show, I’m scared that in my heart I know what it will show, and you know what?? It’s ok!! If it is MS, I still won’t let it beat me down!!  My mom was so supportive through this trip. My dad has been amazingly supportive at home. My boyfriend worries so much and supports my fight every single day. My son loves me. Despite this illness I have a lot to be thankful for. I’ve accepted I may never know my true illness, while it will be awful, and could be dangerous, I have faith. I have the love and support of my family and friends, for that I thank you all. Those that have been on this journey with me, cried with me, laughed with me, I thank you from the bottom of my heart! My journey isn’t over. I still have a ways to go, and I’ll continue this fight as long as I can.

 

proverbs 3125

Dog and Sunlight= Laughs and Crawling

Here’s a laugh for ya! So I was inside relaxing, since I leave for  Vanderbilt tonight and I hear my dog barking like crazy. I  go outside not realizing how sunny it is. I’m instantly blinded, dizzy and just dropped to my knees. Now i’m crawling through the backyard on my hands and knees, to get her with my eyes closed because of the sunlight.. I had no idea what she was growling and barking at. So I finally got her!  30 minutes later she’s whining at the door to go out, I let her out thinking she has to go potty, but noooo not my Lillie Belle!!!!!.. Then, what do I hear????  The barking and growling again:  This time I went out prepared for battle..I had sunglasses and shoes,  and was prepared to crawl again if I had to dammit!  I heard hissing and the bushes were moving like crazy all down the fence WTH!!! ..She wasn’t backing down, I’m screaming for her, telling her to come, she wasn’t backing down. She was like “This bitch is mine! Mom”  LOL . I finally got her away from it, and in the house.  Then she starts pacing the living room whining to go back out and get it. So i’m assuming it’s a raccoon by her actions. lol. Our good little hunting dog!  I called my dad and he got a good laugh, though he was glad I’m alright. He said maybe a opossum. Maybe it’s a honey badger?! (for those that got the joke, good on you!)  Whatever it is, she wants it!  Hope this added some laughter to your day, because it sure did to mine!

Moral of the story: Just laugh, even if it’s at yourself. 🙂 I could have gotten angry, but what’s the point?

So..Who would win??? LOL 🙂

Lillie Belle     2013-11-09 20.22.02    Vs          raccoon The Raccoon