SWELLING post rad? when? and how much??

[calimama]

Hi all,
I thought i posted this question last night, but don't see it here today so maybe i hit the wrong button?

I am hoping to for some quick info for those who had radiation...

1. Did you have swelling?
2. How much (%) and what was the size of your original AN?
3. When did the swelling start and how long did it last?
4. What symptoms did you have to know of the swelling?
5. Did you receive treatment for the swelling, what type and did it work?

This is an important issue for me as i am considering fractionated radiation (over 25 sessions) and have a med-large AN with brainstem effect... AND i am hoping to get pregnant in the next 6-12 months so i need to think ahead about whether i may have swelling and whether i can risk this with a possible pregnancy. I have not ruled surgery just because of this particular issue.

THANKS SO MUCH !!

[ppearl214]

Hi calimama,

Ok, 2 yrs out now, so going to attempt to answer as best as I can.

1. Did you have swelling?
*minimal. Since head MRIs have a margin of error of +/- 2mm, the swelling I incurred fell within the margin of error. Was on a course of steroid (Decadron, Decacrap as I lovingly call it) that helped to keep it in check.

2. How much (%) and what was the size of your original AN?
*My AN, at time of treatment was 1cm (had grown from 7mmx5mm in 9 months, so we knew it was being "active" in growth

3. When did the swelling start and how long did it last?
*Can't exactly answer as I had "felt" some "blocked ear feeling" (like airplane cabin pressure and ear fullness) at approx 3 mos post CK, but only lasted short time.

4. What symptoms did you have to know of the swelling?
*Please see my reponse to #3

5. Did you receive treatment for the swelling, what type and did it work?
*Since I was approx 3 mos post treatment and had already stopped Decacrap, I was put on OTC Ibuprofen.... seemed to have helped.


Hang in there!
Phyl

[jb]

1. Did you have swelling?   --- YES
2. How much (%) and what was the size of your original AN?    --- 2 cm AN swelled to 2.5 cm, 50+ % increase by volume.
3. When did the swelling start and how long did it last?   --- Started having symptoms about 6 weeks post-CK.  Swelling was confirmed on 4 month MRI and still present on 7 month MRI in March.
4. What symptoms did you have to know of the swelling?  --- Pressure headaches, pulsating tinnitus and hearing loss.
5. Did you receive treatment for the swelling, what type and did it work?   ---- YES, I was tried on two different steroids, prednisone and decadron (just switched recently).  Decadron has been very effective on my symptoms (hearing has even improved).  Prednisone did not work well for me.

[sgerrard]

1. A little bit, nothing measurable on an MRI.
2. Not measured; just the feeling of it; my AN was and is 8mm.
3. About 3 months post treatment. The peak was about 3 weeks in December, spanning Christmas.
4. Ear pressure, aka the feeling of fullness.
5. No treatment. Thought about calling the ENT, who might have put me on a short term steroid, but never felt it was bad enough to call. Taking cold medications and ibuprofen seemed to help.

Steve

[calimama]

Thanks Phyl, jb, and Steve.

Interesting... and very helpful, thanks.

Anyone else? particularly those with ANs over 2cm?? with brainstem effect?? (but hey, all are welcome!!)

THANKS!!!!!!!!!

[pearchica]

Hey Calimama: I had tumor shrinkage at my 6 month CK- by 4mm on one side.  Additionally, Dr. Chang saw 2mm but that's within the margin of error so he couldn't call it as a shinkage.

See my stats on my "icon, avatar" picture/signature thingi ma bob- but sounds like we have about the same size range- I was definately facing "brain stem encrouchment".  I to considered surgery but am really glad the CK an'ers cheerleaded me on to research CK- for me it was the best option.

every day post ck treatment I was given decadon to prevent fluid build up in the brain/skull- called edema.

I have had no side effects post CK.  My AN symptons are minimal, buzzing in ear, fullness in ear- have a hard time hear low frequencies (i.e. my husband's voice!).

take care, Annie

[Jim Scott]

Hi:

I had FSR (26 treatments) so I'll answer as best I can in the hope it may be beneficial to you. 



1. Did you have swelling?

Yes.

2. How much (%) and what was the size of your original AN?

Post-radiation, my AN swelled from 2.5 cm to 2.8 cm.  About 03 mm.  (12%).

3. When did the swelling start and how long did it last?

Within a few weeks from the start of FSR sessions.  It lasted about 6 months. 

4. What symptoms did you have to know of the swelling?

Intermittent stabbing pain and a 'tight' feeling in the affected area.

5. Did you receive treatment for the swelling, what type and did it work?

I didn't ask for prescription medication because OTC Ibuprofen tablets were able to alleviate the discomfort. 

Jim

[GM]

I am hoping to for some quick info for those who had radiation...

1. Did you have swelling?   
                    Yes
2. How much (%) and what was the size of your original AN?   
                     From 1.8 cm to 2.1 cm over a two year period
3. When did the swelling start and how long did it last?       
                    Over a two year period
4. What symptoms did you have to know of the swelling?     
                     Increased tinnitus
5. Did you receive treatment for the swelling, what type and did it work? 
                     Steroid treatment at the hospital after GK treatment (standard practice).  Have had Prednisolone for swelling       
                     issues  (full feeling, strange sounds, etc...freaky stuff by the way, lots of side effects)

[Sue]

I had GK two years ago for my 2 cm AN.  Subsequent MRI's showed no changes in size of my AN.  I was on decadron (I like decacrap better! HA) for a week after GK.

Hope this helps.

Sue in Vancouver

[MLB57]

 :)Hi Caliamama:

I had a 1 cm rt AN removed Jan 2001--not total resection as surgeons thought--continued growing to about orig size of 1 cm and last Fall I had 25 FSR at Mass Gen Boston MA...

No side-effects... Will have MRI this Fall to see what's going on in there!!!!

Best wishes to you!!  Regards, Mary from MA

[calimama]

Hey Mary...
Just curious, when you say not total resection as surgeons thought, does that mean that they planned to get it all (but didnt) or thought they got it all (but didn't). Was your facial nerve ok (was it as risk in the first place? Was your hearing spared.... if you had some left.

cheers!

[calimama]

Annie thanks for your reply to this post and glad to hear CK worked out for you. By encroachment i am that means you had compression? Mine is bigger than yours (no pride here!  ) and it really looks like it is squishing quite a bit on the brainstem although i have no problems from this (yet) ... one of the reasons why i am concerned about swelling and still considering surgery.

Jim, thanks for your reply and all the other information and support you have given with respect to FSR. Your story gives me hope that maybe surgery and followup rads (if necessary) might be the best way to go.

[calimama]

GM... thanks for your reply. Freaky stuff eh... Hmmm... Did that scare you? Do you still have effects, or was this just from swelling?

Sue, thanks very much for taking the time to respond.

Trish

[GM]

The Prednisolone had many side effects that got better after the dosage was reduced (the dose reduces over time...its a series treatment). It worked well, but it made sleeping difficult, I was moody, emotional (not good for a guy), etc...

But it did its job.  There is another version of it out there (ask your doc), that has less side effects.

GM

[MLB57]

  Hi Calimama,

Correction--I had 30 FSR treatments over 6 wks...  To answer your questions--my OR reports (Jan 2001 from both surgeons) said "total resection to healthy nerve"--so they both believed it was totally removed--my first year MRI showed a slight enhancement and my neurosurgeon thought was possibly scar tissue, but recommended yearly MRIs--he then left and my follow-up docs watched it until 2006 when it was evident it was indeed growing. I did lots of research this time around and consulted w/Dr Noren (NE GK Ctr in Providence) and Dr Barker at Mass General who both immediately told me by looking at my first year MRI that it had NOT been totally removed. I did not want surgery again and Dr Loeffler (Chiel Radiation Oncology) at Mass Gen said because my facial nerve was already weakened he proposed 30 FSR--low dose for 6 wks to protect my facial nerve. 6 months later I am doing okay, no side effects, and will have an MRI this Fall.

I do not regret having the surgery but at the time I only had a computer at work and did limited research--knowing what I do now I would have gone to Mass General to Dr Barker OR if my ins allowed I'd have gone to House in CA--they developed the House-Brackman scale and are pioneers in An surgery.

I get together w/the group at Maxwell Silverman's and they'll tell you I'm doing fine so my surgery was okay but the experience of the team is most inportant w/any kind of treatment. Just wished I had realized I needed a better experienced team of surgeons who knew if they'd gotten it all out at the time... and I could've had LINEAC right after an dthat might have stopped it then...

Regards, Mary