Swelling and Steroids

[Dealy]

Last week my AN on the right side that I had treated with FSR 7 months ago-Thursday to be exact felt like it was swelling. It feels in my ear like you go on a plane and your ears plug up-in this case it never gets unplugged. Called JHH and they put me on a 6 day course of Predisone. Today is the fourth day and my ear feels no different. My question-for those who had radiation-is this how swelling usually occurs and symptoms involved? I know my hearing also has been definitely affected. I will finish on Wednesday the six day course of Predisone Steroid then e-mail JHH for a reassessment. They asked last week if I wanted a MRI. I do not know if that is necessarily up to me though-any input or advice. Thanks-Ron.

[pearchica]

HI Dealy: I'm not sure if an MRI would help or not- it may at least put your mind at ease if nothing else.  I had CK treatment a week and half ago- and I'm feeling fine ( I did have a slight runny nose last week but that's it). I have heard that the tumor sometimes can swell and then other times can shrink...( nice not to have a consistent pattern huh)?  My ear has always been "plugged" which is why back in September I went to the dr- and after going to the allergist who then referred me to the ENT by December I was diagnosed. (2 weeks vacation in November on a plane probably didn't help matters...)  I'm sorry I can't be more helpful (I'm further behind than you are in treatment).

Take care, keep us posted on your progress- if the MRI brings peace- you should do it.  Thanks, Annie

[Dealy]

Annie- Thanks for at least one reply-I was hoping more people whould chime in that already had some form of radiation and are further along. Wednesday I finish my six day course of Predisone. My ear still feels like I have a couple of socks stuck in it- little hairs feel like they are impinging on my right eyeball-but I have had that before-nothing new really- and more difficult to swallow. As a matter of fact my wife gave me a hunk of colby cheese for supper on Sunday and it got stuck in my throat-man was I in a panic to try to cough it up. I told her-no more chunky food. My diet is still alot of soft food like non-sugar Pudding and low salt Soups. I read about your AN sometime ago. I follow alot of threads on this site but may not always respond. I have a full 8 hour job during the day-and by the time I get home in the evening I am just exhausted. I usually hit the bed by 6PM and sleep all night. Hey-not much of a life-but at least I am still kicking. Thanks-Have a good day with your TUMA. ron

[ppearl214]

Ron,

I am so sorry to hear you are going through this. I have not (knock on wood) run into any post treat swelling as of now (10 mos post CK).  I do know that when I feel "fullness", I will either take an anti-inflammtory OTC (such as Ibuprofen) or an antihistimine (ie: Benedryl capsule) to help........when was the last MRI? Weren't you due for one, if my short term memory is working?

Hang in there and keep away from chunky food... we want you well.

xo
Phyl

[tony]

I was thinking on this one and its hard to be to dogmatic about it
Basically swelling is normal, but too much may have further consequences
so control/suppression through drugs makes good sense
Its hard to give good advice on something so specific so some
alternatives for you :
a)would your doc consider extending the period of steroids
and will he/she discuss with you the implications of the side effects on you or
b) is there an alternative steriod treatment to try
- given that the other does not seem to have worked very well
c) Its unlikely that anything serious is going to happen
but an open discussion with doc on what to look out for
and when, and why, to call might seem a prudent course of action.
I hope this is of assistence
Best regards
Tony

[mar50]

Hi Ron - Sounds likek you and I are in somewhat of a similar positions although I had GK and it's only been about 4 months.  I am 1/2 way through a two week course of Decadron for swelling and was just thinking how suprised I am that my hearing is so effected and does not seem to be responding to the steriods like usual.  I guess I don't have any answer, just wanted to let you know you're not alone!  Oh snd I did have an MRI, it did make me feel better to see what was going on in there.  My understanding was that this sort of thing is not unexpected. 

Take care!  Let's compare soem GOOD results in the upcoming days.  Hang in there.

[ceeceek]

I suggest you check out the ck support site at cyberknifesupport.org...they have alot of info in regards to the typical treatments for post ck swelling( similar to GK), and the effects....several times I have seen the docs recommend a very high dose of steroids and yes a follow up MRI would be a good idea...if nothing else, provide you with some relief..if tumor is swelling it means it is dying...yeah!!, and will also show doctor where exactly tumor is pushing on your ear causing the problem...may affect the type of steriod they give you...I am suprised by prednisone treatment....generally very mild.....so keep pushing and check out the ck site...lots of info....good luck and hang in there, it is a good sign in the end,
Also...(if you read other post you will see I am the weirdo of the family) I have been using acupuncture to keep my inner ear open, and relieve the pain of my tumor pushing on my inner ear..and very successfully, so you may attempt to try that as well...I was very suprised at how well it has worked so far, so when I do follow up with my ck if necesarry after my surgery, I will definately be using the acupuncture to alleviate any symptoms...
Ceeceek

[pearchica]

Hey CEECEEK: I think acupuncture is a good idea.  I have noticed this week that twice my right ear has "rung" for a brief moment- then it goes away. I'm just figuring it's swelling or post radiation.

Ron, I'm sorry you have had a rough time with your steroids- bummer about the colby cheese. But I think CEECEEK's comments are great- I'm going to check out the cyperknife support website shortly...

Also, comforting to know that "this might happen to me" in the future and not to be freaked out as you all have prepped me- Thanks Gang, Annie

[Jim Scott]

I had microsurgery followed by FSR (26 treatments) last year and, at 5 months out, have felt what I assume is swelling.  Mostly just a dull ache on the 'AN (left) side' of my skull along with an occasional 'stabbing' pain that comes and goes quickly.  I take 800 milligrams of Ibuprofen on days when this bothers me and that effectively ends the pain, ache, etc.  My radiation oncologist said this is probably part swelling and part healing and if OTC medication handles it then to take it and not be too concerned.  I'm not.  I have an MRI scheduled for April and that may offer some clue as to what is going on.  However, my last MRI (December 2006) showed some signs of necrosis in the remaining tumor, which is certainly encouraging, to say the least! 

Jim

[BeJoi]

Hi Jim,

I'm wondering if you had your follow-up MRI in April?  You may have commented on it somewhere else, so if you have, please direct me to that post.

Hope you're doing well,

Beverly

[mema]

Hi Ron,  Noticed a reply to your steroids and swelling.  Yesterday you referred to SRI.  What does that mean.  When the ENT told me I had 90% hearing loss six months post FSR.  Does that mean crash?  The Drs. at MD Anderson didn't seem to want to give me steroids for my headaches.  The ENT gave me one round after the hearing loss.  I still get fullness of ear.  Does edema always show up on MRI.The Drs. seemed puzzled about my brain wave movement.  But remember they say my brain looks good by my MRI.  Well see what this months MRI tells.                                                                                                                                                                                                                                                                                         

                                                  mema

[Dealy]

I was referring to my word recognition %. My mistake-at 6 months it was 90%-now 52%. That is a crash from 90% to 52%. 90% is still pretty good actually. No edema does not always happen. However-from a phamphlet I got while at JHH-this is a good sign that radiation is working. However tumor may not decrease in size but stay the same. Reason for perhaps my sudden crash-not something Docs told me from JHH. Steroids are not for headaches-only for swelling. I have been on so many that it can and will suppress your immune system. Reason for taking Celebrex now. Hope this answers your question. Darn tumors anyway. Thanks Ron