9 Month MRI FSR Rpt

[Dealy]

Today I got home from work and I had a letter from the place that did my 9 Month MRI on Right side AN that I had FSR radiation on last summer. I am not an expert but too me it appears that I have swelling going on. I will post the entire Impression made by the radiologist that wrote this report and perhaps somebody on this forum can give me some valuable input. So here goes: In comparison to previous exam from 12/26/06 (would have been 6 month MRI) there is slight interval enlargement of the right AN with measurements listed above. (MY input here-measurements are not consistent with 6 month MRI but do indicate edema of 2 to 3 mm) There is some surrounding abnormal signal alteration indicating possible post-radiation type changes with subtle edema (swelling) and mild mass effect on the 4th ventricle which is placed slightly to the left of midline. Then they go on to explain-since I am an NF2 and had surgery 18 years ago on this tumor that their is no evidence of any kind of regrowth on the left side. Whew-for that one. I have yet to get official report or reply from Johns Hopkins that did my radiation but like every one else on this forum I am pretty anxious when you get these reports and really in lay terms want too know whats going on. So maybe somebody out their can read the same thing I did_ I am hoping this is good news. Thanks-Ron

[macintosh]

I'm going to copy in something I put on another thread. There are multiple studies out there on the question of transient swelling after radiosurgery. They differ in details, but the general outline is that for one to two years after radiation, many ANs show growth that is difficult to distinguish between transient swelling or real growth. In exceptional cases, it can take up to three years to see definitive signs of tumor control. Or, for the lucky ones, there can be visible signs of necrosis in the first year. The good news is that is that the overwhelming number of cases turn out to be transient swelling, and require no further treatment. On the pubmed.gov site, some of the studies that address this question (under the seach string <acoustic neuroma radiosurgery effects>) have as principal authors Pollock, Huber, Hasegawa, and Nakamura. I'm sure there are other studies that also address this question.

[ppearl214]

Ron,

Fast question.... do you have the dimensions of the AN at your last MRI and on this MRI and is there a 2mm difference between the 2?  Thinking the +/- factor due to the MRI.

Sending huggles! Hang in there!
Phyl

(p.s.  No new growth! HECK YA!)

[pearchica]

Hey Dealy: at least the left side is not back! WOOHOO! One down, one to go...
I was told 3-5 years for total tumor death and not to expect a whole lot at the 6 month MRI stage- that all the doctors would be looking for is a change- but they don't know what change...

Unfortunately for us radiation types, this is a long haul process- I guess that's the challenge when we opt out of surgery.  However, I would keep the faith that the tumor will die!

Thanks for giving me an insight regarding what terminology I should expect come August... Annie

[Dealy]

Phyl-We go 100 miles from my hometown too get my MRI's because our local hospital cannot put MRI on individual CD's. Can you believe that. Anyway-when I had this MRI done on Monday- I asked the tech how many radiologist do they have read these reports-he said 7 or 8. Well the one that read my 6 month report is not the same one that read this one. At 6 months he stated that tumor was stable at 2x4 by 2.2 CM. This guy says it is 2.5x2.9 with prior study he says-meaning the 6 month is 2.3 x 2.6 CM. He goes on to say the height is 2.7CM wher the 6 month was 2.5CM. So I guess according too him that would fall into the 2mm range on at least 2 measurements except the 2.9 versus the 2.6 which would be of course a difference of 3Mm. Will post and see what Johns Hopkins says-have not heard from them yet. What a RUSH. Ron

[tony]

I understand where you are coming from here
- even now it maybe too soon to say
- but I think it might be good news
as noted elsewhere swellling vs growth is a hard one to call
and in any case, as you have noted, different interpretations
occurr even on the same MRIs - let alone 6-12mths apart
Sometimes only time will tell
Fingers crossed for you
Best regards
Tony

[ppearl214]

Phyl-We go 100 miles from my hometown too get my MRI's because our local hospital cannot put MRI on individual CD's. Can you believe that. Anyway-when I had this MRI done on Monday- I asked the tech how many radiologist do they have read these reports-he said 7 or 8. Well the one that read my 6 month report is not the same one that read this one. At 6 months he stated that tumor was stable at 2x4 by 2.2 CM. This guy says it is 2.5x2.9 with prior study he says-meaning the 6 month is 2.3 x 2.6 CM. He goes on to say the height is 2.7CM wher the 6 month was 2.5CM. So I guess according too him that would fall into the 2mm range on at least 2 measurements except the 2.9 versus the 2.6 which would be of course a difference of 3Mm. Will post and see what Johns Hopkins says-have not heard from them yet. What a RUSH. Ron

Oy!  I think my vertigo enhanced just now by reading that!  Does sound all too close........ please keep us updated what the final report says. I ran into the same thing with a post-treat appt at BI.  Neuro-Oncologist measured it one way, the radio-oncologist read it another but the differences were so minimal that I did an average between the 2 and waited for the final report and took it from there.

Still need more coffee... sorry

Phyl

[Dealy]

Happy Easter too all: Well we went yesterday too see my ENT in Kansas City who did my AN surgery 18 years ago in my left ear for a 1.5CM which left me deaf in left ear but no complication. No indications of regrowth by the way-Whew for that one.Now have 2.4x2.2CM in right ear. Had FSR radiation on this tumor last summer-25 sessionss at Johns Hopkins. First of all they did a hearing test-wow what a decline-I am now at 52%. 6month MRI was a 90%. ENT said that their is definitely signs of swelling/edema too the tumor-which in radiation glossary is good-means radiation is working. However-I did not expect that much of a decline in 3 months of hearing. ENT suggested a hearing aid. So next I saw his Audiologist. Hearing now is muffled and garbled. ENT actually took this horn out with a long tube and told me too stick that in my ear. Could not figure out what he was doing at first-He was trying too talk too me through this tube-and it worked. Well anyway-fitted for a hearing aid and Audiologist put one on me that is like a prelim. Man what a difference. I heard him when he scooted 5 feet away. Since I need only one (it is digital) I asked cost-$3000 dollars-wow. Plus he said if my hearing gets worse I will need an FM adapter and that is $2000 dollars. All this of course insurance will not pay. Anyway I figure that is  small price for the gift of hearing again. I thought I could come home with a hearing aid. Wants me too go too my local ENT and Audiologist-in case it needs adjustment-which they do I guess. He said he would not feel right selling me a hearing aid and have someone else do the adjustments-I guess the man is ethical. Anyway-Have too go back too local ENT (Blah) and see if I can get fitted for hearing aid. Seems I am atypical for radiation results-since I had such a crash of hearing but typical for an NF2. Just hope my hearing does not crash anymore. Thanks_R0n. P>S. Boy it was sure nice too hear again though.Also Johns Hopkins is going too put me on Celebrex Monday for current symptoms. Feel that I have had too many doses of steroids.My balance now is really bad. Feel like I always want too tip to the side. ENT in KC reccomends PHysical Therapy.

[Windsong]

Ron,

I was glad to see your post here. And first of all I am happy to hear that you have no regrowth on your An side from way back! 

I read with interest your comments about the hearing aid as I am having a meltdown today regarding my own garbled hearing in my non An ear. Do you know the name of the hearing aid you tried there? Too bad you couldn't go home with it! I went on the net a while back and saw this hearing aid made by Oticon called the Delta which is neat looks wise only because it is very tiny and comes in many many different colours. I dropped into this hearing aid place while I was in this other town doing something else and the lady said it cost either 400 or 800 or 1600 dollars. (different versions) I have no idea if it is even suitable for me. However, I am getting really mopey about not hearing people and plan to get a hearing as soon as possible. Well mopey is an understatement... i had a mini melt down today actually. I suppose the crying jag is therapeutic.

I saw my fsr doc the other day about my recent mri and heard that the An  is the same size (I am between 1 and 1 1/2 yrs out from fsr) so that was a relief and also that there is no sign of an An on my "good" side. He also said that losing hearing from radiation is something they always point out to us as there are no guarantees that one won't after fsr or radiation. As for the size of the An he did say too that it depended on who was reading the mri.... thus the measurements could vary.  I wrote a bit about this on sandy's hearing thread...

I find i need to use the ciprodex (which contains dexamethasone) every day now as otherwise i get too much of that stuffed plugged pressure feeling in both my ears. I still have to see my ear doc.

Please do tell me what hearing aid you tried as I want to get one soon.  I hate not hearing. Did he say to you in what way an FM adjustment/addition can help you with yours? I figure the money would be well spent given how frustrating it is with this kind of hearing we are experiencing!

Warm wishes,
Windsong

[Dealy]

Windsong- The Brand name he utilized is Phonac-but I have heard about the other brand you mentioned also the Oticon. The FM receiver has ability to be able to watch TV- Hear Stereo or TV-talk on telephone- or direct conversation at meetings etc. towards people-you zoom in too them. He gave me a brochure too read so this is where I got this info from. he did not say what percent it would need to go down too-but I do know of another NF2 in Texas who uses a Phonac and perhaps-not sure a FM receiver-she was a 40%. Hope this answers your question. I will post more on hearing thread when I go too local Audiologist to get fitted. Thanks- Ron

[Richey]

Dealy,

Shop around on the hearing aids and compare prices. they vary greatly. Be sure there is a no obligation trail period. You might want to ask about Bi-cross.

Good luck, take care of the hearing that you still have.

Rich

[Windsong]

  Thanks Ron. I googled that one but couldn't find a picture which showed what it looked like... is it an "in the ear  canal" tiny thing? What did it look like? What i liked about the Oticon Delta was that not much could be seen excpet for a very thin wire coming from the part in the ear canal and disappearing at the top/behind the ear. I have no idea yet if I could wear this one in my ear canal but it looked neat lol....

W.