Honestly ready to give up the fight
 

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

Momz
 

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

Momz-
I'm glad that the doc got back to you with some sort of firm results, but I'm so sorry to hear what the results were. I can't put it as eloquently as Cyn, but hang in there...you may stumble across what works for you!

Momz,

we are a community that cares. We will always be there for you, whether you're here every day or once a year...

Isn't it nice at least knowing people who can actually identify with what you're going through?


And YES, you get darned down with this damned disease and that's a normal cycle. But IF you feel you're getting suicidal, then bite the bullet and get some antidepression help, because TOS is strong...and we may need a full team of docs to beat it.

Try to see the bright side in that they found something to start workinging on, rather than on me where they still can't "see" anything, but know it's there.

God bless sweet lady.

I admire that you even contemplated going back to school with the year that you have had.

That takes a special kind of strength and determination.

I hope that you will be able to draw on that during all of the tests and procedures that you will have coming up because of these findings.

I hope and pray that now that they have found some specific problems, they will be on the way to fixing them for you. God Bless Momz

Hi Momz- Sorry I'm late at seeing this, but I just want to add that I have a good size Hemangioma on my spine also. Hemangioma's are benign and basically a raised red birthmark. I freaked when my MRI said that too, but went to a Spine Spec who confirmed the above.

I'm sorry you are having a hard time. Like the others have said, Pain is Pain. Right now, I'm having alot of hip pain and the cortisone shot 2 wks ago did nothing.

You're right, it's gets tiring being in pain all the time. but you do have a community here that cares.

Hope things turn around for you. :hug:

Hi Momz,

I've been away for a few months so am not up to speed but I hope that by now you've seen your doctors and gotten some answers and hopefully have found some ways to deal with what you are facing. Pain is so awfully limiting. I am encouraged by the notion that think you may be able to go back to school in the future--even if you have to delay it for awhile. my :Heart: goes out to you