Anyone with brain met/necrosis surgically removed

dchips1 · 11-02-2009, 09:21 PM

I have had whole brain rads in 2007 and following 2 gama to a new spot last year. (9/29/09) Scan showed increased fluid, which also explained the headaches. My Barrows neuro presented the case to the "board" and all the radio specialist 3 different dr concurred that the "spot" was latent radiation necrosis causing the fluid.

So they put me on decadron, two days later I am a full blown Diabetic(was borderline before, just watched the junk food), with all the side effects, loss of muscle and fat trying to "eat right". Couldn't even get off the toilet. Tapered down by 4 mg tid to 4mg bid increased metformin, I feel a little better. So hear I guess is the real question, my lesion is very low right side , supposedly "not in very deep or important". MD offered before to surgically remove it. I was wondering who has had one removed, and how extensive was procedure. Right know I am trying to balance quality of life, versus keeping on the steroids and killing off my kidneys and other areas in the process!!!!!

Thanks Darita

StephN · 11-02-2009, 11:23 PM

Dear Darita -
A few of us lucky ladies here have had a suspicious or necrotic old tumor bed excised by open surgery. Mine was in my left cerebellum. It was not a difficult surgery to tolerate or very painful at all.

The main thing is how they have to get into the skull. Some areas they can just remove a piece of the bone and then put it back or cover it with another material. In my case the cerebellum is covered by a more brittle area at the back of the skull. It comes apart in pieces and leaves a depression when the bone is not able to be replaced.

This is more cosmetic and is not harmful or noticeable when my hair is full or longer.

Since you are having the symptoms, it is best to get that area removed and get off the decadron. It is not a difficult recovery and I had virtually no pain. Just needed a special pillow with a sort of horseshoe shape to hold my head so the incision was not pressed on.

Let us know how it goes. You will have to have the back of your head shaved, but I left the top and sides long enough to look ok with a beret or scarf till the back grew out.

dchips1 · 11-03-2009, 02:11 PM

Thanks for the input, mine is a right cerebellar mass, it is so low that when the head frame for gamma was placed it had to be lowered. The second time they went even lower on the one side, and I got a right eyebrow area toward temple that is caved in already. Hair I lost it twice already!!! So as long as i have most we are good!! LOL!!

How long were in hospital? Did they do arterial lines and all the fun stuff? Headframe etc?

I am going to med crew the 3-day komen walk on 11/13-15/09, but I am e-mailing my Oncologist and nuerosurgeon with a plan.

When I saw my Onc who is awesome, he suggested I decrease the steroids. So I prayed about it and thought about it, and the neuro guy didn't want to rescan till mid December. Last Mri 9/17/09 with the bad headaches. So I am going to ask to another MRI the week of the 15th and see what the fluid level/ necrosis is same, better, or worse. If better try to taper done on the steroids, if same or worse cut it out!!! I take care of special needs kids, and both my Husband Boeing shuts down for 2 weeks, and my college girls who are at would be on Winter break from school. So do it then?

So what do you think?
Thanks Darita

StephN · 11-03-2009, 03:30 PM

Hi -
I was thinking the surgery might be more immediate since you have the diabetes problem. Cutting the steroids is normal as you cannot go off "cold turkey." A person has to wean off on a schedule over a period of weeks.

I was in the hospital about 3 or 4 days, had an IV in my arm (or port) and the heart monitor leads stuck on my torso. They will be pricking your fingers to check your blood sugar quite frequently. If you do not develop a fever or anything else, you should be released. They will be giving you some major antibiotics while in hospital and maybe some to take by mouth at home.

The Decadron is muscle wasting and weakening, so the less you can take the sooner you will feel able to handle your job and family.

Good luck with this latest challenge!

Barbara H. · 11-03-2009, 04:33 PM

I have had surgery twice to my left pre-frontal cortex for radiation necrosis. I was in the hospital two to three days. After the first surgery I went back to school to teach after one week. I was teaching third grade at the time. I am currently teaching fifth.

I would suggest that you have this surgery ASAP with the best surgeon you can find. The second time I had surgery I was off for a few weeks because of winter break.

The first surgery was the most difficult because I had a 3cm metastatic brain tumor removed and then I had to have stereotactic radiation.

Good luck. Don't wait to have this done. Decadron is is the worst part of the whole ordeal.

Best regards,
Barbara H.

Joan M · 11-04-2009, 02:38 PM

Darita,

I had a left-frontal craniotomy in Oct 2008 and then five does of radiation to the tumor bed in Dec. I just had another three-month brain MRI last week which showed more enhancement than the last MRI in June, "most likely" due to radiation necrosis, according to the MRI report, neuro-oncologist, radiation oncologist, and my medical oncologist. But only more MRIs over time till tell.

The brain surgery was pretty "easy." That is, the tumor was in an area without a lot of complications from both surgical and cognitive standpoints. I was in the hospital for four days and I recuperated at home for four weeks before returning to work. I took Decadron while at home but not during the radiation. I I did radiation while working.

My scar is just above my hairline, down to my ear. But it's not visible even with my hair pulled back. I have a dent in the middle/top of my forehead, a dent in my left temple and a small bump in the middle of my forehead which is a plate and screw that is part of putting my skull back together.

Any extra care you can get at home at least the first week or so would be a real plus. You'll be able to do things for yourself, but extra hands will let you relax. I would go for walks in the afternoon and increased the distance a little each day.

Joan