Monday, August 20, 2007

A very BRIEF update


Sorry to keep you waiting.

We were in Portland last weekend as we had a 3rd appointment (consultation) at the Oregon Health and Science University. It went well. We were actually there a long time. I have a very complicated case. I guess I am just complex and complicated in general. (chuckle)

Upon returning from my family visit the end of July/beginning of August I immediately had consultation appointment #2 at the University of Washington. That one was kind of hairy. Neither Harley or I felt comfortable. We did learn lots of information (things I actually missed as the appointment flowed too fast) and I was fortunately able to review once recieving the captioning notes.

I have yet to go through the notes from Friday. Interestingly, without even giving the doctor in Portland the questions beforehand, he nailed just about a whole page of my questions before I even asked anything! We were really impressed.

So to refresh at this point:

5 opinions from neurosurgeons have been collected
2 surgeons from CA, 2 from Seattle, and 1 from Oregon

Of course there is not a cure so the goal is to address the largest tumor pressing on the brainstem. The idea is to attempt to do the least harm as possible with the hope that I can be restored to my present state.

Even though it is tough and I am doing the best since my last treatment in 2004, surgery is still emminent at this point as I am in a position of walking a tight rope. I have been told it is amazing and miraculous that I have walked a full marathon or am even walking. The idea is to go in as strong as possible so I have a good shot at recovery.

There are other tumors to address and future treatments/surgeries but at this point we are focusing on this big boy that has to be reduced no matter what if I am to have a chance at maintaining where I am and even living.

Oh, and yes there is another big tumor (meningioma) which was one of the tumors to be considered for treatment at the time of radiosurgery. Things did not go according to plan so it was never treated. Therefore, that tumor can be taken out at the same time. It is called a "kissing meningioma" as it is "kissing" or touching the "big boy" vestibular schwannoma which will be debulked.

To eliminate confusion I will paraphrase:

Note: the MRI image is flipped around. The tumors I am having surgery for are on the right side of my head. In the picture however, they are shown on the left side.

The large tumor you see on the film I posted under the title "Want to see my brain?" will be debulked. What that means is that the surgeon will go in and remove what he can without severing the nerves that some of the tumor will be adhered to and without peeling away tumor which has adhered to the brainstem.

So if you are following me, that means part of the tumor will be left behind. It is pretty impossible to remove it fully as these types of tumors like to stick to vital structures and they have a very high chance of growing back.
So yeah, at some point it will most likely regrow (hopefully not too soon and hopefully by then there will be a cure or some less invasive and more viable form of treatment).

The meningioma on the other hand will be removed entirely. Meningiomas are tumors that grow in the lining of the brain and not in the brain matter itself. Think of it as a piece of syran wrap on a hunk of cheese. The tumor is in the syran wrap and not in the cheese.

Alrighty. With the out of town consult I took 2 days from working out and also a lazy day last week. Therefore, I missed 3 days of working out last week!!!! Yesterday we took the dogs on a brisk walk and then it was too late to go to the gym. Today I have to get back on track and play catch up (weights and aerobic/cardiovascular exercise). Therefore I need to get going here and will have to explain things further later.

Have a great week! :o)


Anonymous said...

Did you see Dr. Delashaw at OHSU? I have had two surgeries there, one to remove a couple meningiomas, and AN surgery last December. He is wonderful.

Rebecca said...

YES! That is exactly who we saw! We really felt good about him and he was very knowledgable, thorough, and patient.

Thank you so much for responding! Do you live in Portland? How did you come to make that your surgery facility of choice?

My husband is going to try to call and schedule the surgery today. I would like October 22nd so we will see what is available.

I know he is going out of the country next month (september) to train some korean surgeons. Therefore, we want to try to secure a surgery date before he leaves.

I would love to keep in contact with you and learn more about your experience there and with your surgeries if that is ok with you.

you can email me privately at bluediverbeck at yahoo dot com