Author Topic: necrosis  (Read 4260 times)

cburley1

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necrosis
« on: February 14, 2012, 04:23:36 pm »
I was treated w/gamma knife in Feb 2011 for 1.6cm acoustic neuroma, I had an mri last July and it showed shrinkage of 1 mm on one side and necrosis in the center....I am having all kinds of worsening symptoms that I realise could come from swelling, the only one I really can't deal with is the constant headaches & pressure. I had a follow up mri last week and went to my Dr today, according to the mri report tumor has increased by 2mm, my dr feels that it is the difference in the cuts (one was 3mm the other 5mm) and that for now the tumor is stable, but since there is a question of growth I have to have another mri in 6 months instead of 1 year, the other thing we aren't sure of is where there had been necrosis, it is now filling back up, no necrosis is showing, my dr is checking with his oncologist to be sure, but feels this is normal, in all the research I've done and all the reading I've done, I never saw anything about a tumor filling back up. Has anyone out there heard of this or had it happen to them...please let me know...that kind of concerns me...thanks...hope you are all enjoying Valentines...
1.6 cm into CPA  IAC an diagnosed in Nov, 2010..gamma knife in Feb 2011...facial nerve involved, only small section going into the brain stem shows on MRI, tumor either has it pushed aside or is wrapped around it, facial spasms & twitching, hearing loss, balance off, migraines....

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mindyandy

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Re: necrosis
« Reply #1 on: February 14, 2012, 04:32:22 pm »
Sorry to hear your struggles. I can honestly say that I understand. I'm not sure about the tumor filling back up, however Marianna aka MK on this board had CK done and later it showed darkening necrosis and then growth and had it removed. I'm not saying this is what is going on in your situation. I had CK done 4 years ago and am having surgery March 7th due to growth. I too have new sx. No fun. I do hope this is not the case for you. Did you send your scans out to get second opinions?
Waiting is the hardest part.
I forgot to say that if you need to talk to someone PM me.

Mindy
« Last Edit: February 14, 2012, 04:43:56 pm by mindyandy »
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

cburley1

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Re: necrosis
« Reply #2 on: February 14, 2012, 05:40:57 pm »
Thank you so much...I'm kind of concerned about regrowth...I know it can swell from the radiation, so at this point the amount of enlargement that the mri report says is going on, is not really concerning...but I've never heard of it showing necrosis then filling back up....do you have regrowth, if so how long after ck was it discovered...what type of surgery are you having...
1.6 cm into CPA  IAC an diagnosed in Nov, 2010..gamma knife in Feb 2011...facial nerve involved, only small section going into the brain stem shows on MRI, tumor either has it pushed aside or is wrapped around it, facial spasms & twitching, hearing loss, balance off, migraines....

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mindyandy

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Re: necrosis
« Reply #3 on: February 14, 2012, 06:53:40 pm »
You are only 1 year out so you are still well within swelling stages. I would get other opinions on the necrosis and then it filling back in? Cannot say I've heard of that. '
I have sent my scans out to have opinions and over the past 4 years is shows a 2mm increase. At my 1 year it showed shrinkage and then my 2 year it showed 1mm increase then almost 4 year it showed another 1mm increase. I am also have symtoms now so I am having retrosigmoid surgery at House by Dr. Friedman March 7th. I have good hearing so we are hoping to save it.
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

cburley1

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Re: necrosis
« Reply #4 on: February 14, 2012, 06:59:22 pm »
Well good luck to you, I'll say a little prayer for you for good results & fast recovery...I'll watch for your update posts when you feel up to it... :)
1.6 cm into CPA  IAC an diagnosed in Nov, 2010..gamma knife in Feb 2011...facial nerve involved, only small section going into the brain stem shows on MRI, tumor either has it pushed aside or is wrapped around it, facial spasms & twitching, hearing loss, balance off, migraines....

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rupert

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Re: necrosis
« Reply #5 on: February 14, 2012, 07:34:22 pm »
Hi cburly1,
   
    Having another MRI done in 6 mo.  is pretty much standard if there is a question about re growth.  Growth needs to be verified over several scans and over time.   As  Mindy has stated, your still in the time when swelling could be happening.

Are you having your reports and scans sent to the neurosurgeon who preformed the , GK or are you talking with a different Doc?   I only ask because different doctors seem to read the reports and scans differently.   My GK team's opinion of my MRI's have been slightly different than that of the radiologist.

As far as necrosis,  I think this early in treatment your seeing variations in the contrast dye. AN's are very vascular and this early after treatment contrast dye may not be indicative of necrosis.  I have seen scans of AN's that do not show necrosis for years.  It could take 6-10 years before the AN is considered dead.

Sorry to hear of your problematic symptoms. Have you talked with your doc about your symptoms?  They can put you on some meds for a short time that may help you.
Usually some type of steroid.

cburley1

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Re: necrosis
« Reply #6 on: February 14, 2012, 08:01:00 pm »
Thanks, long story short, when I was first diagnosed I was sent to a neurologist, he said I needed a neurosurgeon, sent me to one, he said gamma was my best bet as my facial nerve is involved, gamma knife doctor did great, but follow up with this doctor was a nightmare, in aug 2011 my family doctor sent me back to original neurologist because of issues I was having and could never get an answer from surgeon who did gk, original neurologist has always felt it should have come out, so he sent me to an ENT who specializes in this type of tumor, he said if this tumor would have been in his head or I had been his patient, it would have come out, though he understood why they took the route they did. In mean time he told me to keep my appt w/gk dr. My husband & I took of work went to the appt, was told they had changed it to 3 wks later and never informed me...so I went to the appt 3 weeks later and they had changed the hospital where the appt was, well I made it to that hospital on time and was put in a room pretty quickly, 1st person that came into the room was on the computer looking at my charts and said, sooooo you came in thru the E-room, I said I was here for follow up after gk, next person who came into the room looked at my charts, came over to me and pointed at the upper left side of my head (i have right side an) & said you have a menginoma, I was upset at this point and told her what my issue was, she said dr will be in soon, I sat there w/my daughter & 3 yr old granddaughter for 1 1/2 hrs, the second woman came back in and said, doctor said everything looks good see you in 6 months, I never laid eyes on him...but I'm sure my insurance paid for a specialist appt. I was furious, I refuse to go back and am dealing w/ENT...we love him, he pulls up my mri and shows us what he is talking about and talks to me, not over my head.
guess it is not such a short story, but it is how I came to change doctors.  :)
« Last Edit: February 14, 2012, 08:37:16 pm by cburley1 »
1.6 cm into CPA  IAC an diagnosed in Nov, 2010..gamma knife in Feb 2011...facial nerve involved, only small section going into the brain stem shows on MRI, tumor either has it pushed aside or is wrapped around it, facial spasms & twitching, hearing loss, balance off, migraines....

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mk

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Re: necrosis
« Reply #7 on: February 14, 2012, 08:12:06 pm »
Sorry about your struggles. For sure not having appropriate follow up care is very frustrating.

I saw my name come up, and I want to clarify something regarding necrosis.
It is very common to see necrosis (i.e. darkened centre) 6-12 months after radiation treatment. This gradually disappears, as the tumor tissue turns to scar tissue, which appears bright on the MRI again. So what you have seen is typical, it is very well documented in the medical literature.
Having said this, from my experience and what I have seen on the boards seeing darkening does not guarantee success of the treatment (i.e. tumor might still continue to grow). On the other hand not seeing darkening is not a guarantee of failure. And certainly "filling back up" is more the norm rather than the exception.
You are still very early after your initial treatment, and it is very common to have symptoms crop up during the first 12-16 months after radiation. The fluctuations that you are seeing (shrinkage of 1 mm vs. growth of 2 mm) may all be normal variations in the MRI slices, or the measurement. What would be worrisome is a consistent trend of growth. I think that your doctor is wise to order a 6 month MRI, to make sure he is on top of things. In the meantime, have you inquired if a course of steroids might help alleviate your symptoms?
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

mindyandy

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Re: necrosis
« Reply #8 on: February 14, 2012, 08:35:58 pm »
Very well put MK. Sorry I used you as an example. Thank you for sharing your knowledge.
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

cburley1

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Re: necrosis
« Reply #9 on: February 14, 2012, 08:42:37 pm »
Thank you both...that puts my mine at ease...I had just never read anything about the tumor showing dark necrosis & then becoming bright again...that makes me feel better and it makes sense that it would be scar tissue....I appreciate your help on this...and yes I am glad the doctor ordered a 6 month follow up instead of a year...sometimes the waiting for the next step is worse than the problem...lol
1.6 cm into CPA  IAC an diagnosed in Nov, 2010..gamma knife in Feb 2011...facial nerve involved, only small section going into the brain stem shows on MRI, tumor either has it pushed aside or is wrapped around it, facial spasms & twitching, hearing loss, balance off, migraines....

.

mk

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Re: necrosis
« Reply #10 on: February 15, 2012, 11:18:43 am »
Very well put MK. Sorry I used you as an example. Thank you for sharing your knowledge.

Mindy, that's not a problem at all. What you said was exactly what is written in my signature - this is why we are all here to share our experiences.
I have seen over and over again doctors (usually not specialized in radiosurgery) who do not explain these variations in contrast accurately to patients, thus causing a lot of anxiety, so I wanted to clarify this.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.