Cleveland Clinic

Today we met with a neurosurgeon who specializes in posterior fossa tumors. We were finally able to actually see my original MRI.

Roxanne is circled in red.

Sadly because Dent was unable to do their jobs correctly, the disk was empty that was supposed to contain the most recent MRI with contrast (insert many swear words here). Perhaps this is why people become type A, maybe they have learned that if they don’t do things themselves they won’t be done. I digress…

So Dr. K explained how my tumor is on what he referred to as “no mans land” (very reassuring) and that there was no easy path to surgically remove Roxanne. If he used the upper route then he potentially would not be able to reach the bottom of the tumor.

Upper route to remove tumor.

If he uses the lower route then the angle isn’t right to reach the top of the tumor. He did say that if the tumor does continue to grow that it could create a pathway for removal that is not currently there.

Lower route for tumor removal.

Dr. K is fairly confident that the tumor is not cancerous but agreed to do an MRI of my spine just to make sure there were no “drop metastases” anywhere.
Since I am having a repeat MRI next week he suggested that we review that and if there is no change then wait another four months and MRI again to keep on eye on it.
In the meantime he will take my case to the tumor board and see what their consensus is.
Wait! What about hydrocephalus?!?!
Well Dr. K has a plan for that too. Apparently if I develop any signs of hydrocephalus then then can take a small camera and drill into the top of my head and navigate the camera down through my 3rd ventricle and create a new path for the cerebral spinal fluid.

To be perfectly honest this was not how I wanted this visit to go. What I wanted in an ideal world was to be told that I should have surgery and that the complication rate was low and that I was in very experienced hands and I shouldn’t worry. I suppose MicK Jagger was right and you can’t always get what you want…

I have promised my husband I will stop researching until we go for our next opinion in NYC, wish me luck… 😂

Published by evictingroxanne

I am a wife, mom and therapist and now the lucky carrier of a rare type of brain tumor. Welcome to the rantings of a lady trying her best to not lose her mind whilst navigating new terrain.

12 thoughts on “Cleveland Clinic

  1. Looks like you have more clarity but not complete clarity. It’s narrowing down. More information is coming and its got your name on it. I can’t decide if your promise to your husband is possible or not. Hang in there.

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  2. Thanks for the update. Glad you have more answers to rest on. Goodluck not researching 😊. Miss you especially now!
    Prayers and warm positive thoughts.
    Love to all ❤

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  3. Oh Amy, this sounds so very frustrating not having a clear answer or path yet. I hope you can get more answers and information in NYC. We have been thinking about you every day xxxx

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  4. Great pics Amy! I think I can actually see your mind working!! Hoping you can practice some self-care and rest that mind until your next appointment!

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