Tuesday, September 15, 2009

Mayo Clinic Headache

We are in Arizona at the Mayo Clinic.
Our experience here has been so pleasant. Everyone here has been kind, happy and well organized. We've been treated with respect and great care.

We talked to the neurosurgeon.
He gave us a thorough visit and explained the situation completely. Good news and yet not what we expected.

He told us what we already knew:
I have a meningioma on the lining of the brain. It isn't cancerous. It is growing slow. It is small (about the size of your thumb).

Next he told us what we weren't sure of:
It is located in a spot where it wouldn't affect my body with the symptomns I am experiencing. It is still to small to do any harm. The brain that is being pushed up by the tumor is not enflamed or irritated. He said that sometimes meningiomas do not continue to grow.

So...
he feels that the best thing to do is to watch the tumor and in 6 months do another MRI to see if it has grown. Then we can know how fast it is growing and if it is growing at all.

But then he addressed the symptoms I have.
If the tumor isn't causing the symptoms then something else is.
Once again I was conflicted with emotions.
So HAPPY that I won't have to undergo surgery any time soon. Confused because all my symptomns could be explained with the growing tumor. And frustrated because we've tried everything we could possibly think of to figure this out.

But then he said that later we would be meeting with a neurologist who specializes in headaches.

Dr. Vargas.
He completely listened, asked questions, clarified answers (not in a demeaning way but in a very knowledgeable and wanting to understand way).
About half way through he said he had some ideas...
Did you hear me??
He said IDEAS!
We LOVE ideas! We are out of ideas.
He asked me a few more questions to try and confirm some of these ideas.

One of the things he identified is nothing that I have done has changed my headaches or affected them in any way except when I lay down. When I am sleeping, I do not have headaches. When I am walking around, I have headaches.
Then he began to tell us about the spine. There is fluid that runs up the spine and back down again. He explained that if there is a tear or puncture of any kind along the sack that holds the fluid in then it leaks out and doesn't allow the right pressure to take place to move it along evenly. It will build and lessen instead of having a regular and even flow. Thus laying down would cause the flow to be even and standing up would cause the flow to be more difficult.
The way to find out if this is the case is to treat it and see if the headaches go away.

The treatment is an epidural blood patch.
They take some of my blood and inject it into the spinal fluid it travels through out and finds the hole and plugs it up. That's it.
So this afternoon I went back in and they pulled out 17cc's of blood and they injected into my lower spine.
PAINFUL. Intense pain in my back up to my head. The pain in my head went away but the lower back pain was still very high.
I am laying down at the hotel right now and the pain in my back has decreased. If 1 is low and 10 is high I'm at about a 4 right now. After the procedure the pain rose to about an 8. Now, 4 hours later, it has finally decreased to a tolerable level.
I will write more later. I'm hoping tomorrow will be a great day!
Thank you all for your prayers and love!
We know God is taking care of us.
-Jenn

6 comments:

Stephanie said...

So thankful that God is leading you to these answers and *ideas* from those that can help you!

Michelle Krueger said...

Praying for you guys!

Holly Purcell said...

Hey Jenn,

I've been keeping updated with your blogs about your headaches and I had a thought that I figured I might as well run past you. Have you ever considered seeing a behavior analyst for your headaches? I know it seems a bit far fetched, but I think you may be surprised at some of the changes behavior analysts can make even for problems that are seemingly only biological...
Regardless, I'm glad to hear you won't be having surgery anytime soon. Hope you're able to find some answers!

Holly

Sarah A. said...

Wow! Bruce had an issue with leaking spinal fluid when he was about 18, and it took almost all summer to figure that out. But it made a huge difference for him when they did. Praying that this will be making a huge difference for you.

And thank God for respectful doctors with ideas!

Anonymous said...

Praying that you will feel much better today! Love, Jenny Ratzlaff

Jenny Plumb said...

I am praying that this helped! That did not sound like a fun procedure at ALL! I hope you quickly recovered. Interesting that they never would have found the tumor except for the headaches (which appear to be unrelated). A God thing? Yay for good doctors! You are in my prayers daily.