If it's not growing why all the new issues

[formula30]

Okay, this sounds really strange, but I had my first MRI at three months, it had swelled, so they decided to do another one at six months, it hasn't swelled anymore, just stayed the same, but they said it might be getting  a little smaller in the center? radiology report.  I don't see the neurologist until Monday.  If it isn't getting any bigger why the new side effects.......side of face on the AN side feels really alot of pressure, makes the tinnitus really loud, sometimes making me sick to my stomach where I have to go to sleep.  Kind of scary, I had gamma done September 21st, 2011, and I thought the side effects would be over, not starting new ones.......... I have some times where my face at different places will feel kind of numb or tingly (if that makes sense).  When I touch it, it won't feel totally numb........just sort of.  The tinnitus has gotten really loud and extremely annoying............with the pressure it makes me extremely cranky   I know I should be able to ignore some of this but I can't.........because I look fine, everyone just assumes I am..........I have even been told I use it as an excuse........really upsetting.  I have pretty much learned to deal with the balance issues, I just am very careful, only one fall recently which is good I think.  Could it possibly be the humidity causing the extra pressure......I find humidity and heat have never been my friend to begin with but,  lately I seem to be worse. 

[Jim Scott]

Although we can relate to your confusion and frustration as new symptoms arise when a recent MRI shows the AN has ceased to swell and is showing necrosis.  However, because each AN patient's experience is somewhat unique, any answer I might attempt to offer would be pure, relatively uninformed speculation.  I would suggest that these questions regarding your new symptoms are better posed to your doctor, who has full knowledge of your case and the expertise to help answer these very pertinent questions.

Jim

[leapyrtwins]

Wish I knew the answer to your question but, unfortunately, I don't.

All I can say is that when my doc and I discussed radiation (GK) he told me that side-effects sometimes don't appear for 12-18 months. 

Since you are definitely still in that time period, I don't think I'd worry too much at this point.

Hope things improve soon,

Jan

[JLR]

Good Morning,  I actually felt a bit relieved to read your post.  My symptoms are pretty much the same as yours.  And cranky doesnt even describe how I feel.   I did see the MD last week. He prescibed a med dose pak as he said I probably had some swelling or imflammation. I do feel slightly better.. My balance issues did improve some..but still have that damm wonkiness (what a word, but it does describe exactly how I feel). I just feel a disconnect. The tinnitus..is so loud and the numbness is becoming annoying. After reading many many posts I realize that eventually we will feel better. But when!  Keep me posted. Thanks, Joan

[formula30]

I did go to the neurosurgeon on May 2, he is very happy with my scans, it has been only six months and swelling at three months, and has stayed the same the last three, with possibly some decrease in the center.  Good News for sure.  My symptoms are alleviated with decadron, they don't go away but are much better.  I tried the medrol dose pack after three months.......didn't do to much.  Then two months later they put me on decadron..........it really helped.  Now even though it is not swelling more, it had swelled and he explained that it pushes on different nerves and things.  So now we are back on decadron......feeling pretty good........even the tinnitus has died down a little.......lol.  I totally relate to the wonkiness..........mine is worse in stores, I just feel so disconnected sometimes......really weird, but I can't think of a better word for it either........ha ha ha.  I am very glad to have chosen Dr. Evans at JEFF, and I feel he really listens.........all choices of treatment were offered to me........it was my decision, but I feel it was the right one for me.  It gets better.......it's only been a little over seven months, and sometimes I feel almost normal........these boards have helped me a tremendous amount........it's nice to know there is light at the end of the tunnel.........and that others have the same symptoms and report them going away in time.