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Epidermoid Brain Tumor

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norijackson 1
Lovesmesomecoffee 1
Alisa 1
shizzlemydizzle 1
Tenn13 2
The Odedos 1
PPB5 1

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Tenn13 --- 5 years ago -

Yesterday I was told by my neurologist out in town that I had an epidermoid tumor that showed up on my MRI. These tumors are very rare and it's pushing up against my brainstem and it's about 1 inch in size. Today my neurologists office called me and said my referral was sent to see the neurosurgeon at Cam Pendleton. My neurologist isn't a neurosurgeon but he did say that its most likely going to have to be removed do to me only being 23. Every bit of research I have done says the same. I am terrified to think that they want me to go to the naval hospital to have brain surgery. I have had bad exerperiences in the past with them regarding my emergency section and fertility issues. I have called everyone today trying to get it so I can get this procedure done out in town. Even as much as I hate the Naval Hospital I will go there if its small stuff but something this serious isn't anything to play around with. The guy I spoke with Referrals at NHCP told me that there still waiting on all my information so chances are 1) the dr can decide hey it's best to do this out in town, 2) I can go there and try to convince them to send me out in town or 3) pay for it out of my own pocket.

The referral guy at NHCP did say that it would be done at Balboa which is the same to me.

Due to this tumor being rare there isn't too many neurosurgeons out there who have had experience in removing these so that concerns me even more.

If you could please tell me about your experiences and such. Also how would you go about handling something like this. 

shizzlemydizzle --- 5 years ago -

Balboa comes highly recommended. 

The Odedos --- 5 years ago -

New to PU....have advice email me atfor bubble.guppies@hotmail.com.

Trying to pm you but guess i cant. 

norijackson --- 5 years ago -

You have choices, you can ask for a second opinion. You can also do research on hospitals that do surgeries like your and see if they take TriCare, you may be able to work out a deal that they will accept what TriCare will pay.

There are support organizations that are available for support. I strongly recommend you contact your FRO (I am one), let them know what is going on so you can be provided the support you and your Marine needs.

I will say a prayer for you and yours. 

Tenn13 --- 5 years ago -

Thank you norijackson. My neurologist out in town already had a neurosurgeon lined up for me that would accept Tricare but it got shot down since Balboa can offer that service. Which made no sence to me since everyone other test I had done which was a lot btw was off base. Civilan or military docs I would always want second opinions when it comes to this matter and me personally I want to be able to choose who I feel is confident and has a good record of expertise in this area instead of it being forced at me with who to go with but we will see come next week. 

PPB5 --- 5 years ago -

Its actually strange to me you ever saw nuerology "out in town." Balboa is within the service area and being that NHCP doesn't offer nuerology services, all patients are refered to Balboa for services. I know this because we just went this route when we arrived for my son. 

Alisa --- 5 years ago -

Camp Pendleton naval hospital does have neurology, I just saw mine this last week, and she has been great through this whole process. Our family has had to deal with our fair share of crappy doctors here at nhcp, but we have also had some great/amazing doctors here as well. 

Lovesmesomecoffee --- 5 years ago -

Civilan or military docs I would always want second opinions when it comes to this matter and me personally I want to be able to choose who I feel is confident and has a good record of expertise in this area instead of it being forced at me with who to go with but we will see come next week.

Very good idea! Get a second opinion, get a third for that sake!! Its brain surgery, I would make sure to do your research, and know exactly what you need to know about the surgery, get all the details about whats going to happen, what you should expect before and after and anything that should be a red-flag for before and after. =)

I can relate 100,000% about the Camp Pendleton Naval hospital, I went there for certain large scale things, and it was horrendous. I'll never go there again for anything except an infected papercut.

If you change your 'home of record' you might be able to transfer your surgery to anywhere in the US, you'd likely have to move there for the surgery time. (IE: if you wanted to go home for it, and be with parents after etc., change your home address and I think they'd transfer you to where that is.)

Either way, good luck, my thoughts are with you! I'm sorry you got such jarring news! 

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