2 yr post GK and still growing....swelling?

[cathyroe]

Hello my AN friends,

I just picked up my MRI, 26 months post GK, and it is still growing. I know "swelling" occurs, but can it swell for 2 years???
Anyone else experience swelling up to 2  years???
I just mailed the MRI to Dr. Lunsford, but it will take him a few days to get back to me, and  since I'm about to jump out of my skin, I thought I'd check to see if anyone has had an experience like this, and hopefully someone has the good news that it CAN still stabilize after 2 years of "swelling"?

Thank you,
Cathy

[rupert]

Sure they can swell up some after 2 years.   Were all these MRI's done on the same machine and read by the same tech? Makes a difference some times.     Also, what has Lundsford said about the previous MRI's?  I certainly don't know about your AN but they can change shape as they react to the treatment so you also want to look at the volume of the AN also as an indicator of what's going on.  I know it's hard but,  don't read much into it until you've heard from the Doc. 

[cathyroe]

Thank you so much for your reply, Rupert.  This forum is such a Godsend. Just to have someone "out there" reach back with some words of comfort is huge. And you are right, I looked at the MRI and the tumor has changed shapes from a "football" to a bigger roundish blob. Thank you again, so much, for your response. It helped me sleep last night, and I am trying to follow your advice and not read too much in to it until I hear from the doc.

[rupert]

Good luck.     Sometimes you just have to  take a deep breath and get some sleep.

[jim j]

Hello Cathyroe, I had a large 5cm x2cm acoustic neuroma in 2003. I had the The Middle Fossa Approach and it took 11 hr's. I had lost some hearing before the surgery I just wanted my facial nerve preserved. It is a tuff recovery and long. I had facial paralysis after the surgery but he did not cut the nerve I had a fluid build up and after a week with a tube draining the brain fluid that had built up it started to dissipate. I had the tube removed and I still have a small amount of facial paralysis. I lost my balance and total hearing loss. I could not see well out of the left eye and looked like jack Nicolson from Once Flew Out of The Coco's Nest. I tried to laugh at myself but couldn't. No movement. I must say I looked funny but it was hard at 40 years old having such a loss did not sink in right away. But I was told the tumor was I quote "FULLY RESECTED EXCEPT FOR A SMALL PIECE OF NON NUCLIA THAT WOULD NOT HAVE ANY GROWTH NOR EFFECT" I had to go for MRI's for every year for 7 years I was told. I did so while trying to regain what I had lost which was a lot. I went to the same place for 4 years and overtime I got the report it was not noted but it was 1 mm bigger each year so I asked how could this be 1 mm bigger every year and you don't say there is any growth, excuse is who the radiologist was that read the images. so now 4 years later and 5 mm bigger I showed My GP dr the first report and the last MRI report and he said you right it is larger and all it is someone does not know how to use a ruler or they are not comparing the images. I since moved to Sarasota Fl and kept getting the MRI's done. By my 5th year in Sarasota I was told that the "PIECE OF TUMOR" has doubled in size and I need to see a Neurosurgeon right away. Great news bad day or Bad day bad news, but I had just had twin Grandchildren and I was 55 years old and wanted to move back home as did my wife to be near them north of NYC. I knew I needed my surgeon back I did not tell anyone just agreed with my wife moved back and got down to the surgeon. By now it was 7mm x 13mm and he looked surprised. He stated I had a choice oh great choice love them Surgery again" NO" cyber knife or Gamma Knife. so I went for door #3. I went to the Neuro Oncologist and came up with a plan. He would zap the tumor it would grow more but thats expected and 90% chance it would die. Great odds I never won the lottery I can win this. I went through it and I have to say the procedure was easy. The 3 months after were a nightmare, the radiation through off the my glands in my brain that control the Thyroid and everything was off. I had and have headaches my white blood counts were going up and up every 2 weeks I was sick they almost took a piece of my bone morrow out thinking I had some kind of bone cancer because the type of white cells came from the bone marrow. But the Oncologist said it had nothing to do with the Gamma Knife. Finally 4 days before the bone marrow extraction I started feeling better I asked for another blood test and everything was back to normal. My GP said he has never seen anything like this before and the Oncologist stated Nothing. I got back for my 6 month check up at 7 months and thought this will be great I brought my wife thinking a nice lunch in NYC to celebrate would do her good, as she is a very nervous person. I had not wanted her at anything because she worries to much. We got there did a new MRI and went upstairs waited and waited then in comes the Dr and he looks over the slides and keeps looking then turns and says wait for it wait YES it looks like it is dying by the black in the middle and the white around the edges thats indicative of a dying tumor. Great But he says I did not see this before? Oh no there goes lunch. He found what he claims is another piece of the tumor growing and much larger then the one he zapped because of the radiation, and it is on the facial nerve right where it goes into the Brain Stem. I said how do you miss something like that? HOW he said well if I had seen it I would not have radiated I would have done surgery. So I looked at my wife sitting there like she was hit by a car at 100 miles per hr. I said to her look at it this way he got 1 out of 2  so we are batting 500. She did not like that and started a barrage of question for the Dr who's head was already spinning from what he was looking at. My wife is smart and does not forget he's in trouble now she gave it to him and I knew why because once you have radiation it makes the very elastic and hard to resect. I knew not only was I in trouble but so was he. I now have another unseen piece of an acoustic neuroma that was suppose to have been fully resected and just watching the piece he left in. The Dr could not really answer any of our question he claimed he could not pull up the MRI he did just before the Gamma Knife the old computer is not working trick I guess. Bottom line my tumor did double in size from the gamma knife and it looks to be dying. But the other unseen tumor is large and on my facial nerve and brain stem needs surgery and will loose my facial nerve. I guess what I am saying to you don't worry I read the tumor can grow quite large after Gamma knife but if you want to know if it is dying it should look like a bulls eye black in the middle and white around the edges. I hope you can see that on yours and if your tumor is that large and dying ask for a steroid for a week it can help sometimes with that swelling. I take 2 advil every morning to get rid of the headache and it helps. I hope this helps you sorry it was sooooow long in getting to the point but you have to think things could be worse. I wish you good health and Thanks for letting me vent or what ever you want to call it. JIMJ

[Patti]

jim-would you tell me which hospital and which doctor?  I have hav a bad experience and am looking to find a new doctor in the nyc area.  patti

[Anomar11]

Hi Cathy,

I had swelling up to 2 years after. I had CK 2008. If you look at the measurements in my signature line you'll see the results.  Hang in there.  This can be in the realm of normal, just not as common. 

Mona

[cathyroe]

Thank you everyone for taking the time and care to reply. Anormar, I am encouraged by your third year results. Thanks you. Jim, I wish the best for you and I am saying prayers for you and everyone here.

Since posting this a few days ago, I have now started having hemifacial spasms. I hope to hear from Dr. Lusford soon, and will report back. It's very unusual, I would guess, to start having facial spasms 26 month post GK. It looks like people have them much earlier in the GK process from what I read here.

Thanks always for any insights,
Cathy

[jim j]

Patti, I had my 11 hr surgery done by Dr Sen he is now chief of neurosurgery at NYU langone,  dr kondziolka nyu did my Gamma Knife.  They are very good but i am having a lot of issues with my head dizziness and headaches.  I am just 1 yr post Gamma Knife and I have a 5cm cyst on the facial nerve after gamma knife. So if that helps you to get a second opinion i would recommend Dr Sen. Good Luck