Need second surgery--very depressed

[mmilazzo]

Hi everyone. I had retro for removal of my 3.2cm tumor in August 2015. They left a small bit of the tumor to prevent me from having facial paralysis. I am now SSD, and I had no other significant problems from surgery. Had a post-op MRI in November 2015, then again in May 2016.

In August I moved across the country from Orlando, Florida, to Denver, Colorado. I had my recent follow-up MRI last week, and my tumor has shown aggressive growth since November. It has tripled in size. It is now 1.5cm. I have even began experiencing symptoms again. My tumor is pressing against my brain stem and causing papilledema (again).

The doctors here recommend another surgery again. Translab this time. They say I need to get it ASAP, because the tumor is growing at an unbelievable fast rate (at least that's what it looks like).

I'm not really posting here for advice. I know I should go ahead and get the surgery, and actually surgery isn't the thing that bothers me at all. It's the money. I have insurance, but I have to pay $5,000 out of pocket, and while I am out of work, I only get 66% of my pay. Well I just used all my savings and maxed out all my credit cards moving across the country.

My boyfriend moved with me to Colorado, but we went because I found a job. He doesn't have one yet. My surgery will be around Thanksgiving. Hopefully my boyfriend will have a job by then, but I am the "bread winner" of the family. He doesn't make much at all.

My parents are poor, too, so they can't help out. I can't afford to go anywhere else for surgery. I am just so super duper depressed that I was just starting to put together my life again after surgery and starting to save money again (I had to use all my savings last year for surgery, too). I don't really know what to do, except maybe I can take out my 401k AGAIN (I had to do it one other time when I was 27 to help pay bills--I am now 36). Even with penalty, at least the money can get me through a couple of months of paying bills and rent.

Ugh I just really wish I didn't have to worry about this again. I am sure many of you have gone through the same thing.

Thanks for listening.

[Blw]

Is radiation out of the question? For one, it would be quite a bit cheaper as it is done as an outpatient.

[mmilazzo]

Because I'm so young and the tumor is just really pressed into my brain stem, we have decided that radiation is not an option. It would need a large dose of radiation, and it gets tricky when they are doing radiation on the brain stem rather than just in the auditory canal. So we decided surgery is way better if an option.

[Blw]

Agree.

[Janey]

Sorry you have had this unfortunate regrowth.  Thoughs and prayers to you as you figure out
how to deal with the finances and other problems that another surgery presents.

[Kathleen_Mc]

I am so sorry u r having to deal with regrowth.....it happens (I had regrowth after loosing 7-10 cranial nerves with my first surgery)
I am even more sorry to read about yet another person in financial straights due to the cost of health care.......I am so thankful for our health care here in Canada
Take care
Kathleen

[mmilazzo]

Thank you everyone. I'm feeling a little better about it, and I am deferring my student loan payments at this time, so at least there is something. I appreciate you letting me vent. Sometimes you just need to admit that you are upset about it. We are allowed to be upset! We don't have to be strong all the time.

[Willbur]

Sorry to hear that. I'm a newbie here so I'm praying that I don't have anything like that happen. What are the chances of regrowth or do the doctors not really know?

[mmilazzo]

I don't really know the chances for regrowth. In my case, the original surgeon left about 10% of my tumor (it was 3.2cm) to prevent facial paralysis. Well, here we are a year later, and my tumor is growing at an abnormally fast rate. The neurosurgeon I have now (in a different state because I have since moved) thinks the original guy left too much.

Second surgery is scheduled for November 16. I am not even worried about the surgery anymore since I've been through it once--just the money aspect of it. Oh well.

[Willbur]

I don't really know the chances for regrowth. In my case, the original surgeon left about 10% of my tumor (it was 3.2cm) to prevent facial paralysis. Well, here we are a year later, and my tumor is growing at an abnormally fast rate. The neurosurgeon I have now (in a different state because I have since moved) thinks the original guy left too much.

Second surgery is scheduled for November 16. I am not even worried about the surgery anymore since I've been through it once--just the money aspect of it. Oh well.

I see you moved to Colorado. Was that for the benefit of medical marijuana?

[Sheba]

Really sorry you hare having a second surgery and financial woes going with it.  I hope this surgery gets the job done.  I think you can take 401k without penalty for medical situations?  depends on the details of your situation.

I do not envy the surgeons who are trying to figure out just how much they should leave to avoid permanent facial nerve damage.  Must be so frustrating to be in there but have to leave some behind.

[Louise UK]

Hi mmilazzo, I've sent you a PM.
Thanks,
Louise.

[mmilazzo]

Just a quick update!

Had my second surgery (translab) on Wednesday, November 16. I went home from the hospital this Saturday, so it's officially been about 5+ days since surgery.

This time around, I had a MUCH BETTER experience than my time at Florida Hospital East in Orlando. I saw Dr. Yousseff and Dr. Gubbels at the University of Colorado Anschutz Hospital, and my overall main concern this time around was the tremendous pain I experienced after my first retro surgery in Orlando, particularly the pain during that first post-op MRI.

The staff and doctors at UC Anschutz took this into consideration and didn't hesitate in giving me the pain medications I needed to be comfortable. Additionally, I was so uncomfortable because I was so thirsty, they let me drink some, which really helped (they didn't let me do anything but ice chips after the first surgery for 24 hours, which was absolutely hell). I even threw up from anesthesia (something that didn't happen the first time), and they let me drink.

Because I remember that post-op MRI being so painful, they took great care in getting me IV pain meds right before the MRI and right after the MRI, which I think greatly contributed to my comfort. I was even able to sleep that first night (a little), something I didn't do for like 48 hours after my first surgery.

I was up and walking within 24 hours, and my balance was way better than the first surgery (I didn't need any physical therapy).

I am home now and still taking pain meds when I wake up in the morning and throughout the day to manage these headaches, but overall, I couldn't have asked for a better experience the second time around, especially since the doctors say that they believe they got 100% of the tumor. YAY!

Now the only thing I really want to come back is my appetite so I can eat something for Thanksgiving. I can only hope that every hospital treats their patients like I was treated at UC Anschutz, because I believe proper pain management was the absolute key for me. I have no clue how people say they don't experience tremendous pain from this surgery--I do, and I have a history of migraines. Maybe that's why. The incision on the belly (where they took the fat) is nothing. It's like a mosquito bite. I've heard people saying that's worse than the actual surgery pain. I wish that my pain wasn't so tremendous in my head.

[Janey]

Thankful things went better for you this time around.  Prayers for a speedy recovery.