Help Amanda battle a complex brain tumor

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Hello sweet friends, As many of you know I was diagnosed with a highly complex aggressive growing brain tumor on April 2nd, 2025. We are struggling to process and accept this diagnosis. At the age of 21 I had emergency back surgery two weeks before our wedding and here we find ourselves 20 years later back in the neurosurgeon’s office. I have since had at least 10 surgeries, none related to that first back surgery. We cannot understand the why but are very determined to obtain the best care so that I can continue on living this life with my husband Ben, son Connor and fur baby Moose.

This has been a process and will continue to be for the remainder of my life. The brain tumor has a high chance of recurrence. Although, we have been told “they don’t think it's cancer” I am having two CT scans on Thursday, April 10, 2025 to gather a more clearer picture of the tumor to hopefully know in full what we are dealing with. As for me the most concerning is we know for sure the tumor is close to my optic nerve and carotid artery.

How did we get here? In Spring of 2024 I thought my sweet strong fur baby accidentally injured my shoulder. I saw an orthopedic surgeon who ordered an MRI because I could not raise my arm fully. Before I could get into the MRI I developed shingles. This was my second go around with shingles so I understood the nerve pain that came along with shingles and assumed that was the cause of my shoulder pain. My shoulder pain did improve over the summer. In November of 2024 I palpated a lump near my clavicle. I again assumed this was either from my shoulder “injury” or a reaction from the previous shingles. I did decide to go ahead and have the MRI of my shoulder which only showed tendonosis. I went back in to discuss this with my orthopedic and I mentioned the lump near my clavicle. I was informed the lump was not related to my shoulder and that I should see my primary care physician ASAP, which I did.

My primary care the fabulous Shelby Olds, MD evaluated all my current symptoms that I had dismissed as a part of my diabetes and getting older. I had a lump near my clavicle, night sweats, headaches that wake me from my sleep, vision worsening and fatigue that grounds you, worsening of my essential tremor and weakness with numbness in the right side of my face. Dr. Olds first ordered an ultrasound to check my lymph nodes (the lump on my left shoulder) which showed nothing. I credit Dr. Olds here because she didn't take no findings as nothing and pushed further for an MRI of my neck and soft tissue. That MRI showed an enlarged lymph node to the upper limits above my left clavicle, reactive lymph nodes in my neck and the kicker a mass in my brain that was reforming the sella turcica which is the seat for the pituitary gland. The radiologist could not get a clear view from the neck MRI so recommended an MRI of my brain.

The MRI of the brain showed a highly complex multi compartment aggressive growing large brain mass. At this time the specific type of tumor has not been able to be labeled. Therefore, I am having 2 additional CT scans on Thursday, April 10, 2025 of my sinuses and brain.

It seems in our opinions on top of a friend who is a neurosurgeon (how great is that) that the mass has grown into my sinuses, but definitely there is something and/or wrong in my sinuses as well. The problem with that is usually this kind of brain tumor is removed through the nose instead of craniotomy. However, because there appears to be an issue in my sinuses as well, we are not sure if that will be corrected first and then the tumor can be addressed.

As of now, I knew I was not going to have such a complex surgery locally especially with my vision and carotid artery being involved. I will visit with a local neurosurgeon next week just to get an opinion. I have done my own research. I knew I wanted to go to North Carolina as that state is always calling my name. I narrowed my research down to four neurosurgeons at the University of North Carolina. Then there were two and then one Dr. Oyesiku is a neurosurgeon who has dedicated his practice to these types of tumors. He’s the one! I feel he has the experience and I have dug deep into previous patients' success stories. I am waiting for a call at any time with an appointment date.

That’s why we are here and this is not an easy thing to admit because we are the givers we are the helpers but, this time we are in need. I happily drive my vehicle that is 10 years old however, when we travel to the University of North Carolina we will need to rent a vehicle. We are a one vehicle family at this time. I assume we will visit once for a day or two for my first appointment with Dr. Oyesiku. I will probably have a team of various specialists due to the complex involvement of the tumor, which may create more appointments at UNC. It looks like I will stay in the ICU possibly a day and maybe a week in the hospital. I do look to be required to stay close by to the hospital in case any complications arise after discharge. I am sure I will have to travel back at least a third time for follow-up after surgery. Also, these types of tumors have a high chance of recurrence and sometimes rather quickly. I may have to undergo radiation which I am hoping can be done locally. I do see that UNC is going to be in the remainder of my life. Let’s not forget the medical costs that are to come on top of what I have already racked up since November coming to this diagnosis. Income loss will be substantial as well in our household as we do not have a village. I may require some outside help when I return home. I do have insurance but that only gets you so far there's always copays and deductibles. So to break things down the best I can we will need a rental car on several different occurrences, Airbnb for at least a week, insurance isn't black and white there will be a per day hospital day cost, surgery costs, surgeon costs, anesthesia and I do know I will be responsible for 20% of all radiation visits. I am so bummed to once again feel this burden on my little family. I am hoping my sweet friends can help lessen this for us so that I can concentrate on overcoming this. I want to lessen this on my husband Ben.

I will come here to update. I appreciate you taking the time to read this chapter of our lives and any help you may provide as painful as this is.

Remember, I've always said don't let a good health day pass you by, get out there and live the life that brings you the most joy!

I am determined to continue my life with my Ben, Connor and Moose

!!!!!!!!UPDATE #1!!!!!!!

We have seen it.

Locally the radiologists don't see enough of these types of tumors resulting in my CT scans today not bringing a type of tumor yet again. This report sat better with us all but, didn't gain much.

However I was able to get my films to my sweet neurosurgeon friend in Florida who works with neurosurgeons who specialize in these types of tumors.

It's either a pituitary adenoma (no radiation)

Or a craniopharyngioma (radiation)

***Correction I have learned that radiation could be required regardless of the type if the tumor has involved the carotid artery or optic nerve***

I also understand sometimes things can't be completely labeled and biopsied until removal.

Usually NOT cancerous. Doesn't appear cancerous but, not feeling much confidence from the radiologist as there's been some back and forth. Mumbo jumbo

With the craniopharyngioma radiation would be a possibility due to high chance of reoccurrence.

Laboratory work that's taking way too long could maybe shed a little more into this functioning or nonfunctioning, etc etc

I did want to note I didn't just choose to go to university I was highly advised to. I just decided I would do my own research and pick myself when it comes to my vision, carotid artery and let's face the pituitary basically tells your brain/body what to do and I'm all for walking away from this the best I can.

My neurosurgeon friends in Florida have highly recommended a neurosurgeon in Roanoke that we have decided to also consult with because closer to home and just as experienced as the neurosurgeon at UNC. That's my job tomorrow see if Roanoke can see me soon!

That's it for now the white area. Also note it's at the base of my brain (under bottom of brain) you could say behind nose and eyes. With the good news today being it's sitting perfectly in an area that should lessen the risk of removal with regards to the optic nerve (vision) and carotid artery.

I want to thank my sweet Florida friend I'll leave her nameless until she tells me otherwise to protect her privacy I know she values

I didn't cry tonight I know it will not be easy but, I feel a tiny bit better about things going very well surgery wise.

Here's your laugh through the cry I always find myself sitting in waiting rooms with the older generations that I absolutely adore and today the TV was set on Trump very entertaining reactions. Then a lady told me she was there to have a CT scan on her knee and was searching me to see why I was there and I just couldn't say out loud I have a brain tumor I just said I'm here for a CT scan too

***UPDATE #2***

We have made the decision to go on to UNC. Yesterday, Roanoke Carillion called stating I couldn't see the neurosurgeon I wanted and was recommended because he believes I have a temporal bone tumor not a pituitary tumor that he doesn't treat and proceeded to inform me I would have to see a neurosurgeon that I don't personally feel confident in. I tried to take the closer to home cost efficient route but, I deserve the best care

Dr. Oyesiku at UNC treats all brain tumors so I'm confident whatever label this brain tumor carries he will be able to give me the best care! Dr. Oyesiku has already viewed my scans and scheduled my appointment for May 12th so I'm ready to set everything in stone and get this addressed. The not knowing what we are dealing with is not an easy ride.

UPDATE #3***

Dr. Oyesiku office had a scheduling conflict after we all spazzed out we decided that June 10th will work so much better for initial consultation especially considering this morning at my ophthalmology appointment it appears the tumor is not involved with my optic nerve We will have to wait on the appointment with Dr. Oyesiku regarding carotid artery involvement. Also, depending on the type of tumor radiation may be a possibility. Trip #1 has been funded THANK YOU ALL SO MUCH

I have a friend who is planning a bingo & cake walk benefit in June to help with the lengthy surgery stay costs. I will post more when everything is nailed down!

Again, Thank you for The Collins Family