Possible Swelling Concerns

[Dealy]

Good Morning Everyone-I thought I would post early before I go to work. This past Sunday my hearing went south for awhile and have Symptoms of fullness of the ear. It actually feels like it may be swelling. My wife contacted Johns Hopkins for possible order of Steroids just in case something happened over hoiliday-only for emergency. Were told at first that doctors just do not give out Steroids like that. Then later on in the day hear from head neuro nurse that with current symptoms a short dose of Steroids might be indicated. Here is my concern which I did express to them. If I went on again for 6 days this would make the 4th time since I finished radiation on July 10th. I have been having alot of leg problems and do not want to aggrevate that with steroids. JHH indicated that a long course of Steroids can only cause proximal muscle weakness in thighs or upper arms nothing else. My next MRI is in 5 weeks-(this will be the 6 month period). My question is for those who have had radiation-Do you feel that this would be excessive dosage of Steroids-or would it be best to hold off till MRI confirms swelling or not. We are going to see my regular doctor soon for swelling of my veins in my legs so I am going to ask him too. Just wanted input from those of you who may be further along then I-and see what doctors told you-etc. Thanks as Always-Ron. Reminder -NF2-2.7 CM in Right ear-FSR over 5 weeks this summer-left ear deaf.

[ppearl214]

Ron,

I ran into the same thing yesterday.  I had my CK over 7 mos ago and yesterday, between the same feeling, (ie: fullness, wonky head, etc), I caved and put in a call to BI and spoke to the radio-oncol dr on call.... took some ibuprofen as first step to anti-inflammatory... suppose to call my radio-oncologist today for follow up to last night.

I do know that it is not usual for post treatment swelling to occur down the road from radio-surgery (all forms).  It's not typical, but not unusual either.  I do have some Decacrap here if need be but trying to avoid it if I can.  Please let me know what they say as I'd also be curious... will see what BI says as well. I'm not due for my next MRI until Feb but they may pull me in sooner to see if there is edema going on.

Hang in there and pls let me know what they say. I think we are in the same boat BUT there are paddles for us to use!

Phyl

[HeadCase2]

Ron,
  Perhaps they could schedule your "6 month MRI" a little sooner, to see if the AN is swelling.  Why wait if that information could be diagnostic now.  Hopefully you already have your appointment for the 6 month MRI (it takes a while to get on their schedule), but see if your doctor wants to make it sooner.
Regards.
 Rob

[Dealy]

Phyl- Went to local doctor yesterday. My ear canal is swollen big time. Suggested Ciprodex for the ears for 5 days. If swelling does not decrease I guess it is another round of Steroids. Boy I hate that. So I wanted to inform you what I found out. Also was contacted by Johns Hopkins-they too are suggesting another round of Steroids since I have obvious swelling. Will see if the Ciprodex takes care of the swollen ear canal first. No wander I cannot hear worth a darn. I would use another word-but that is too nasty-and besides we are coming up on Thanksgiving an we should all be lucky for LIFE itself. Happy Hoiday to you all who read this post. I may not always respond to all posts but I do read them all. Ron

[ppearl214]

Ron,

I'm thrilled they diagnosed the swelling and have you on a course of meds to correct it. It's not unheardof to run into it down the road and part of what  radio-surgery patients are told in advance.  But, tickled you caught it and now on the road to (re)wellness.  Hang in there and let me know how the meds work. I'm to hear from BI (hopefully) on Monday after they get my MRI CD to see if I also have inflammation going on..... there are *holds back giggles of glee* indicators of necrosis but.... still having that fullness feel, so need to rule out inflammation.  Will keep you updated.

Hang in there!  It's truly onward and upward from here!

Phyl