Post CK swelling-need support/info

[mindyandy]

Hey guys...sorry it has been awhile. I miss everybody. As some of you know I had CK done on the end of January 08 (so about 4 months ago). Well I had my 2/3 month MRI follow-up and it showed swelling 34%. I dont have actual # right now.

So she said since I was not experiencing any problems just come back in 6 months. Well here I am experincing problems... such as fullness, some discomfort and occational fading of hearing. So I am on Decadron 1mg (low dosage) 1 pill twice a day. I just started yesterday.

My question is/or what I'm wondering is if those who have experience swelling from radiation could post their swelling sizes and tell me if the swelling has gone down? How long did it take? Things to help me thru this ordeal....I GUESS I JUST NEED SOME REASSURANCE.

ONCE AGAIN MISS EVERYBODY & I'M GLAD TO SEE ALL IS WELL.

Thanks
Mindy

[sgerrard]

Hi Mindy,

Sorry to hear about the swelling. It happens, unfortunately. There are some posts by jb, who had quite a bit of swelling, though I don't know the numbers. He took some Decadron and it seemed to control it pretty well.

The one thing I can say is that I got a call from one of the nurse practitioners in Dr. Chang's office at Stanford, to report his view of my last MRI. We talked about swelling and fullness and such, and she said A) it can occur any time up to 18 months after treatment; but more importantly B) most of the time it does not cause any permanent damage. The steroids are mainly just to make you feel better; the swelling will go down by itself anyway, without doing harm. I get only small symptoms now and then, but I found her view reassuring.

Hope you feel better soon.

Steve

[Lorenzo]

Hi Mindy,

I had swelling of about 10-15% at the 12 month mark, or there about, and it returned to normal  and even shrank  to a the size it was pre-treatment by my second annual MRI, 24 months post-CK. During the time I had the swelling I had increased tinnitus, some short pain episodes, and in general increased symptoms. Lost some more hearing, about 5% down. All those symptoms vanished or returned to 'normal' when the swelling vanished, except for my decreased hearing. I didn't take any steroids.

sizes: diagnosis: 24mm; at CK: 26mm; swelling: around 30mm or so, no precise figure for that; present size 3 years+: 22mm

Hope this helps.

All the best

Lorenzo

[mindyandy]

Thanks guys! You give me much support. I would like to hear from jb. Yeah....good ol' swelling. No fun. Thanks for the reassurment it is very helpful. I'm glad to hear you guys are doing well.

[jb]

Hey Mindy,
Good to hear from you!  Sorry you're having the swelling problems though. 

I'm a sweller too.  My AN turned dark in the center, but has almost doubled in volume since CK.  My biggest problem has been headaches and fluctuating hearing.  Decadron has helped with that, especially the headaches.  They started me on a high dose for a couple of weeks, but now I just use 1-2 mg occasionally for a few days when I'm having problems. 

I found a chart that shows the change in size of AN's in the years following GK radiosurgery (GKRS) in a paper that was mentioned a couple of weeks ago.  I figure CK should be similar.  I copied part of the chart below.  It basically just shows that you can get good control over time whether your tumor swells up initially or not.  (Swellers on the left, non-swellers on the right)  It was reassuring to me to see that the tumors that swelled up fast usually shrink fast too.  "Ratio" is just tumor size divided by its original size, so mine would be about a 2 right now. 


Here's some other excerpts:
"Most tumors that showed temporary enlargement
reached their peak within 1 year and regressed
within 2 years. Maximum temporary enlargement
was double the initial tumor volume in some cases."

"Serial MR studies of unilateral vestibular
schwannomas treated with gamma knife radiosurgery
showed that temporary enlargement of tumor
occurred in 41% of cases. Temporary enlargement
occurred mostly within the first 2 years after radiosurgery.
Subsequent regression of tumor volume
occurred during and after the second year following
radiosurgery. Because such enlargement within 2
years after gamma knife radiosurgery is usually
followed by regression, close follow-up with neuroimaging
is desirable in these cases."

Full text: http://www.ajnr.org/cgi/reprint/21/8/1540.pdf

I don't know if it makes you feel any better, but I think everything your experiencing is in the "normal" range.  Believe me, I understand the swelling is no fun, but hopefully you're getting some relief from the Decadron.  My experience has been that the symptoms are probably going to hang around awhile so I hope you can find a good way to manage it.

Best of luck,
JB

[mindyandy]

Thank you soooo much. Yes the information is very helpful and helps make me feel better. My 2 month MRI didnt show darkening...but I'm sure 2 months is a bit early. I am on a very low dose 1mg twice a day right now. I feel a little difference but not much. If I dont feel more of a difference by tomorrow then I am going to call and ask to up dosage.

When is your next MRI? I sure hope your swelling goes down and it shows more darkness. Keep me posted.

[ppearl214]

Hey Mindy! Fab to see you! I'm glad to see you posting... it's been a while!

Ok, in my case.... I ran into minimal post-CK swelling approx 3-6 mos post treatment. No dimensions were given to me but, if needed, I was taking ibuprofen as the RO didn't feel there was any need for me to be back on Decacrap.  The swelling was slightly noticable on the MRI, but for me, very tolerable. Like you, I had ear fullness, some head pressure, etc... but the Ibuprofen helped. 

For me, I found that after approx 7 mos, things started to calm back down... and since my 8 mos post-CK MRI... I've been on the fast track for wellness... and here's wishing you the same ride on that same track!

Hang in there... hoping things ease up sooner than later. Hang tough!
Phyl

[sgerrard]

jb,

That's another fine bit of research you have done. I like the graphs, it pretty much says it all. The 41% figure for swellers versus non-swellers is interesting, I have wondered how common that kind of swelling was. I am also impressed that the ratios go so low 4 years out - on both graphs. That's gonna be us one day!

This is important information for those who have had radiation treatment and have enlargement on an MRI in the first two years.  Thanks for posting it.

Steve

[sgerrard]

I also meant to say Hi to Lorenzo. It has been a while since I've seen a post from you; I hope all is well and you are coping with your noisy classes and finding good coffee somewhere.

Steve

[jb]

Thanks, Steve.  We'll have to also thank our friend Philip at AN World... he's the one that passed along the link to that paper a couple of weeks ago. 

Mindy, my next MRI is in August.   It'll be my 1 year anniversary!      Hopefully I'll be headed in the right direction by then.
I was going to mention that the side effects of Decadron can be pretty nasty, especially higher doses.  I'd try to get by with the lowest dose you can.  I usually get along fine taking it every other day and it's supposed to be a little easier on the body that way. 

Hope you're feeling better,
JB

[Sheryl]

Adding my - or should I say my husband's - two cents to the swelling thread.  Larry had his meningioma surgically removed in 2004 and was on a small, quick taper of Decadron with no problem.  When his "booger" decided to reappear in 2006, he did not want another surgery and opted for CK done on 10/1/07.  His meningioma (even though benign like an AN) was growing 0.5 to 1 mm a month.  He did extremely well until Xmas of '07 when he had what was felt to be a partial/focal seizure related to swelling around the tumor.  A few doctors screamed "SURGERY" but the RO who did the CK said let's try Decadron at 8 mg/day for an extended period and then taper down.  That started in early January and within a month he was having terrible side effects from the "Decacrap" (thanks Phyl for that term).  Kidney function, liver functions, and protein levels were all abnormal.  He developed cellulitis and needed antibiotics.  He swelled up like a balloon.  He went through every test imaginable - there was not one week through this past winter that we did not have at least two medical appts - or as we decided to call it "a double header"!!  Finally with the slow weaning of the Decadron, all functions started returning to normal.  The latest MRI shows the tumor has not changed since the CK on 10/1/07 and for a tumor that was growing monthly that is wonderful news.  Unfortunately, the lMRI still shows just about the same amount of swelling and minimal symptoms.  Next followup with RO is June 9th with an MRI and hopefully no more Decacrap!!
Sheryl

[Lorenzo]

All very interesting stuff to read, thanks guys. Wish I had known all this when i had my swelling episode. NOt that it was that bad at all, just good to know all this.

Hi Steve, doing great, slight frustration at SSD these days, but fine otherwise. Finding good coffee yes, and making my own. lol  Classes have now stopped for the summer, so no students. It's now payback time, assessments of their projects, hehehehehe...   And meetings, LOTS of meetings... I can feel the darn thing swelling at the thought of those meetings!

Ciao

Lorenzo

[Tumbleweed]

Great information, especially the charts. Much appreciated.

Can anyone else share when was the earliest onset (post-surgery) of their side effects due to swelling? I have an extremely important week-long business trip scheduled for late July. I'm wondering if it would be wise for me to delay CK treatment until after that trip, rather than have it performed before the trip, if my doctor (Dr. Chang) believes I must have the treatment soon. I am awaiting his analysis and recommendation vis-a-vis my followup MRI and audiogram.

Many thank,
Tumbleweed

[sgerrard]

Hi Tumbleweed,

If you do end up getting CK, I would schedule it for early August. That is only two and half months from now, which is still soon, at least by AN standards. Then you won't be worried about it affecting your trip. I don't think I have heard people having swelling reactions during the first month; the prime time seems to be more like a 3-9 month window. My worst experience was almost exactly 3 months after treatment.

Steve

[Jim Scott]

This may not add anything of value to the thread as I had FSR, not CK, but it's still radiation and (I believe) worth mentioning.

My then-2.5 cm AN swelled to 2.8 cm within six months of the completion of the FSR treatments (26 over 5 weeks).  I had intermittent stabbing pain in the AN area, a continuing 'tight' feeling on the AN side of my skull and a full feeling in my left (AN side) ear.  This all subsided within six months of onset and my one year MRI showed the tumor had shrunk to 2.5 cm and showed signs of necrosis.  My next MRI is scheduled for June (my 2-year surgery anniversary).  Lately, I've experienced a few intermittent periods of stabbing pain on the AN side and my dry eye bothers me more often (but OTC drops still fix it) so there may possibly be some swelling going on, still.  Frankly, I hope not.  I expect to have an interesting chat with my neurologist next month. 

Tumbleweed;  I agree with Steve that postponing the CK until August to avoid any possible negative CK ramifications is a good idea.  I would.

Jim