I am so happy to hear the professionals finally have a diagnosis that makes sense. Now what do they do about it is the question, right?
Momz, hang in there.
I believe WHOLE HEARTILY you will be feeling better than you do now real soon.
As, for TOS...
All of us here are here cause we are in pain, we want answers, we want to be fixed, we want our life back.
All the negative flashes of: we want to give up, we hate life, we hate everything is a part of TOS life!
TOS is a WITCH WITH A CAPITAL B!
No One but, us patients can literally describe the pain & frustration we go through 24/7.
Many of us here have been going round & round for 5, 8, 10, 20 years with the pain, the delay's the denials, no medical care, out of pocket expenses to the roof & finding the right physician.
It took 2 years to diagnose me.
1 year after surgery for me to figure out it's NOT in my head & find there are others like me by way of webmd BT/NT.
I found Dr. Ellis here
I found Peter Edgelow here
I found Dr. Agnew here
I found Dr. Salinas my PT here
It took 7 years to find Dr. Jordan at UCLA ALL due to the great peeps here!
It's because of this site I have many special friends, found the care I needed at the time. As one link lead to another.
More than anything it's ALL about timing.
It's taken 8 years of workers comp, disability retirement & SSD attorney's ($25K) & anguish to keep an upper chin day after day along with the pain.
8 year career loss, no income.
It creates so much drama for the family.
Our friends do not understand.
And we feel like giving up.
But, in the midst of EVERYTHING you are going through...
There will be light.
Trust me, there will.
Look at me, look at many of us here.
We are better off now than back then due to the knowledgeable patient's here.
XXOO
Cyndy
Quote:
Originally Posted by momzpeachy
Hi all
I just wanted to say Thanks to all my friends on here for being so wonderful and caring. I know I haven't kept up too well with the responses but I'm having a rough time with things and not doing so well. I spent the entire day crying and I just don't know where the day went. I totally lost track of time!
I received my MRI report today in the mail. Of course the Doctor didn't tell me everything other than my situation is "potentially very serious". I was given an appt with the Neurosurgeon Thursday morning at 7:30 a.m. They are making a special time to see me. I wonder how much time they will actually give though. 2 Surgeons are on vacation and this one has emergency surgeries all day.
I called the Doc today and asked for explanation of my results. It's not good. Here is what they found
There is a small HEMANGIOMA within T11 (spinal tumor).
A minimal disc bulge is appreciated at T8-T9
There is a left paracentral disc protrusion deforming the left anterolateral aspect of the cord at T10-T11. This is causing mild central canal narrowing.
Mild Scoliosis of the Thoracic Spine
Atelectatic changes are noted in the dependent portions of the lungs. (fluid building up in lungs)
My PT said I'm a real mess and the fluid in the lungs is probably from the TOS surgery. I haven't been able to do therapy and I have restricted air flow due to the disc herniation.
I am so upset because I was all set to start college courses for the summer term today. I received grants and aid but had to withdrawl from everything. They had to completely cancel everything so I wouldn't be responsible for paying back aid money. I put so much time and work into it and everything is just gone. I was also set for the fall term. Now I will have to re apply and re test if I want to do this again. I don't know if I will be able too ...depends on whether I'm fixable I guess. I don't know anymore.
I hate my life. Nothing goes right for me at all. I'm so tired. Very very tired!
Thanks again my friends...
Momz
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