Symptoms Intensify

[Dealy]

I hope I got this system down. I am not a computer whiz-I will admit. Need input from group. I had 25 sessions of FSR at Johns Hopkins for a 2.7x2.2 AN in my right ear. I finished on July 10th of this year. This last week my voice sounded deeper to me when talking. Deaf in my left ear. So we called emergency staff at JHH. Informed by Emergency Intern that it is too early for swelling and too check with ENT. We called ENT-he was out of town for the week-so we called Nurse back at JHH. Told her my current symptoms-back to where they were over a year ago. Forehead tight on right side-mouth burns around nose etc.-occasional stabbing pains behind ear-ear feels so full, like stuffed with a sock-hearing more effected. She talks to head neuro at JHH-says to have MRI now in 3 months instead of the afore planned 6 months and see ENT. We have this all planned for the 28th of September. Any experience like this from group. I mentioned that I had been informed by Head Neuro when I first saw him for potential use of FSR that he told me it could swell in 3 months-so how come emergency intern tells me it's too early. Confusing-HUh.Oh by the way-they put me on a six day dose of steroids. Thanks Ron

[Windsong]

HI Ron,

About 3 months after my fsr (25 treatments) I had increased symtpoms in my head... tight feeling in parts of head, stuffy ears and both feeling "full", increasing headaches, pressure behind bridge of nose, some ear pain stabs etc..... for me the weird headache was the most annoying...

Things eventually cleared up but i thought it was swelling a bit. In any case, I dealt with the ears and the ear doctor, was put on antibiotics as could be a sinus infection, used flonase to clear the passageways etc... the whole thing did clear up though so that by the time i hit the six month mark, all was fine, and the mri then showed no swelling and a stable AN.

I was told by one doctor that he didnt think i had swelling at the 3 month mark. (I still think i did but only enough for me to feel it not for anyone else to get excited)... i too had the weird sensations around the mouth and nose etc.  That too settled and went away. I rarely feel any tingling now.

My hearing is  a bit better on the An side than pre fsr, even tho i have episodes of less now and then. I am hoping your symptoms will trun out to be like mine... episodes of ear fullness etc but then back to normal.

Not sure what you meant by the 5 fsr being normal? CK is the short days treatment. Linac fsr which is what i had is generally 25 although i know one place with a 5 day protocol. In any case the 25 is said to spare the nerves and side effects, from what I have been told.

I have  also been told that not all people get swelling at all other than what might occur during the actual fsr treatment days. I was not given any steroids. More recently i do use steroid drops in my ears.

Wishing you a rapid recovery, and hope that this is only a small blip in the general healing process. I wouldnt dwell too much on ER interns comments. Your fsr team would know more about after effects and experience with fsr.

take care,
windsong

[Dealy]

 ;)Windsong-Thanks for your input regarding your symptoms and FSR. I had my FSR at Johns Hopkins. They told me they normally use 5 sessions of FSR-which lasts only a week of course. As a matter of fact-when I was there this summer a man from the State of New York had 5 sessions for a 1.4 CM. I was also told that if I had another hearing ear-they would have used only 5 sessions instead of the 25. The only thing that is disturbing now is that instead of sounding like I am talking in 2 buckets to myself-it sounds like 3 buckets-or a jar over your head. Wierd-don"t know how else to explain it. Maybe like you have the worst cold you ever had and talking through your nose. Just Wierd. Anyway-I sure hope that clears up. However-I am thankful I can still hear so I do not want to press my luck and ***** too much.Again thanks for your input. I still have an MRI ordered for this coming Thursday, and hearing test for my own satisfaction. The last one I had was 98%. Sure does not sound like that now. Have a Good evening and Day. Ron

[Windsong]

Hi Ron,

I went back and read your earlier posts (yes I know, i do that all the time, but hey I have a bad memory)....

here's what I thought:

that sounding in a barrel thing? the sock over your head? etc....

well I don't know if this is an interesting tidbit or not, but I have  had ongoing years of problems with my ears due to fluid build up in them, with tubes in for ages and ages.... and some time oh a few years after tubes were being put i remember leaving the place and going down into the subway and  hallelujah the noise was almost "down to your knees" and the train had not even roared in.... coming home would be agony once in the kitchen.... water from the tap, noise of things put on counter, all of that was mega magnified???..... I have had a couple of episodes like that also since fsr even without a new tube insertion at the time (and I have had some since fsr)... I have no idea what this means, except that noise like that can hurt lol...

I see now that you have nf2? is that right? I was wondering about the one as deaf and the second being something you were concerned about. I can understand that.

I can't hear out of my left ear although I do hear the phone dial tone now after fsr ( some days i can't) so I always get worried when i feel that barrel echo for both ears etc. but it has always settled down so far and I can still hear at same elvels as before fsr for most of the time....

Would be nice if others chime in with their experiences about all this.


Did Johns Hopkins tell you when they began the 5 fsr vs the 25 generally? I didn't know that lol....

In any case your 25 would to my non medical opinion be the best way to zap your An if only that it seems to be more likely to spare nerves and all that.

Sending you more good wishes,
Windsong

[noriders]

Hello Windsong,

Exactly!!!!! An intensity to certain frequencies to the point of pain. I will feel / hear a shrill tearing feeling in my head. I was told that this is caused by the hearing nerve being inflamed by the radiation. I stuck a ear plug in my ear for a couple weeks to rest it. After leaving it out now it seems to have help. Would it have gone away on it's own? Don't know but it felt good to me.

I to have started feeling facial sensation (tightness!?... sure), Stuffy nose, quivering eyelid, low grade headache at my temple. I started suffering these symptoms about six month ago and slowly worsened. Today was the first day that I have felt any lessening.

The problem I have is that my 1.5 cm tumor was treated 3 years ago (30 day FSR). My last MRI technician report says that it has grown .5mm. My surgeon feels that it is within the tolerance of the measurement method but I am scared that it has started growing. I am seriously looking into endoscopic removal but there are risk involved due to the radiation. I will not due anything until a volumetric measurement is preformed at UCLA.

Sorry if this support post has turned into a cry for help.

Pat

[HeadCase2]

noriders,
  1/2 mm is certainly within the margin of "error" for the size of your AN measured by MRI.  With an MRI they are imaging planes (slices) through your head, and the location of the slices can vary between MRIs.  Think of it this way, if you measure a tennis ball by slicing it through the center, you will measure its diameter.  But if you slice the tenis ball through any plane that doesn't pass through the center, you will measure a smaller diameter.  Each MRI may represent slightly different planes through your AN, so there will be some variation for the AN measurements.  1/2 mm is well withing that margin of "error".
Regards,
 Rob

[ppearl214]

Pat

Please know that all head MRI's and growths showing are a +/- 2mm, so you are certainly within the plus/minus range. Could be same size, slightly larger, slightly smaller. Also, depends if you had the MRI done at the same location/MRI machine as previously performed. There can be changes with that as well (ie: my usual MRI center showed difference from the original MRI location where they discovered my AN)....

Hang in there.
Phyl

[noriders]

Rob / phily,

I know, I know. I am a technical engineer and clearly understand what is happening. To have gone on for 2.5 years with no perceived symptoms my God, how lucky am I! I guess the on-slot in three months of all that I am feeling scares the hell out of me.

I just recently got all of my MRI's on disk (as a posed to what I have had...  film). Boy what a difference. What a great tool. I feel much better after spending the last two days pouring over contrast, philters, slices... etc. Although there is not a big difference in size there is a definite waning difference in structure.

Pat

[noriders]

Sorry PHYL

[Windsong]

Pat,

That's great news that there is a definite waning in structure that you see when comparing all the mri views! Those symptoms you mentioned as increasing those last three months, are ones i have experienced, also.  I suspect they are from things like parts of nerves maybe being released a bit as the "lump" wanes here and there in size....and maybe the head getting rid of dying "debris"... at least that's an idea i like to entertain.  I understand the worry when these symptoms pop up as I  have some  (worry) when mine do. Then again, I'm pretty confident about my treatment, and i'd have to have a solid case for any increase in size beyond the slice measurement differences before i'd even entertain the thought of a second treatment lol....

many Ans do not shrink but remain stable  from what I have been told.

I'm one year out and my An is said to be stable, not growing, even with different angles in the scan.

I, too, have viewed my scans thoroughly and find that all reasuring actually.

All the best,
Windsong

[noriders]

Windsong,

Have you had the volumetric measurement or the traditional point A point B type. If not what were the variations that you have had?

Pat