Swelling after KN

[FrankinCA]

I am a 2.5c and am about 10 months post GK.  I had a MRI at 6 months due to increased symptoms and was told I had swelling.  After that things seemed to get somewhat better but over the last 30 days I have had a definite uptick in symptoms. 

My questions are these. 

How many of you post KN people have this up and down in symptoms and or swelling thing going on?  Mine are increased dizziness and facial pressure, numbness, a little pain.

My next scheduled MRI is December and if I am still swollen the powers to be might put me on steroids which everyone says is bad, but I can't see waiting that long if that is what is going to happen and if it would help unswell me I would rather just do that now.  What are your thoughts?

[Sefra22]

Hi Franklin,

I had GK in 2007. I had some increase in symptoms about 4 months after. They were over in about a month. Since then I may have an occasional feeling of dizziness, but it is very mild, and only lasts a moment.

I am not familiar with "KN", so I can't respond to that question.

Your AN is larger than mine is/was, so that may contribute more to your symptoms, but I would let my Dr. know about it. December is a ways off, so maybe you should call him/her before that.

Keep us posted,

Lisa

[leapyrtwins]

I am not familiar with "KN", so I can't respond to that question.

Franklin -

not sure what you mean by "KN" - I don't think I've ever seen this term on the Forum.  Clarification, please 

Jan

[FrankinCA]

Sorry I meant GK. 

Thanks for your responses.

[sgerrard]

Hi Franklin,

I had most of my symptoms in one bunch at about 3 months, and trailing off by the first six months. But I have seen stories of people having symptoms out past a year. JB went through a lot of swelling, and did find that steroids, while they had side effects, were an improvement. His AN finally settled down at about month 14.

 I would ask your doctor if you can try a six pack - it is not that bad for side effects, and would probably tell you if taking them would help. That is a package with 6 pills the first day, 5 the next, down to 1 on the 6th day. I think it is methyl-prednisone, or the brand name Medrol. I took one before diagnosis, in an attempt to clear the plugged sensation in my ear. I never took steroids after radiation treatment, although I came close at 3 months. Ibuprofen and Aleve worked for me.

Hang in there, you will get past this phase eventually.

Steve

[ppearl214]

Steve,

The "6-pack" being the Medrol Dosepak (steroids)?  I've been on that for post-CK swelling as well.


Hi Franklin,

Now over 3 yrs post radio-treatment, I can share that in the first 3-16 mos, I did have the occassional enhanced symptoms, whether is was minor swelling (hence, the use of short term steroids to nip it)... temp enhanced hearing loss, temp enhanced vertigo (used short term course of low dose Valium), etc.  It's not usual nor is it rare... some folks run into it... some don't ("individual results may vary"). Please keep your GK team updated (esp. the neuro-onc who should be following you post-GK for any post treatment issues) as well as the radio-onc (since he "mapped" your treatment, they should be updated as welll as it helps them with future mapping) so they know how to address any potential issues.

Hang in there. We're cheering you on.

Phyl

[chatty cathy]

Hi Franklin, I had GK a little over 2 years ago.  Was doing great till my 2 year MRI on May 27.  No symptoms at all but it showed that the tumor had grown and was touching the brain stem.  Then in July I started getting dizzy and very unsteady on my feet (that wonky head thing).  Scared me so I scheduled another MRI for September 9.  It showed that the tumor had shrank and was no longer touching the brain stem.  Doctor said shrinking of tumor also can cause different symptoms (none of the doctors told me that initially). 

[FrankinCA]

Talking about knowing the terms I should at least know the initials are GK not KN.  Now that all of you know how smart I am I will just say I really appreciate all the time you spend doing this and helping me out.  Your comments are very comforting. 

My general practitioner wants me to get a second opinion in hopes they tell me that my current doctor is on the right track which from what all of you say it sounds like he is.  I am in the process of getting a second opinion set up.

I can't help feeling that my current doctor is so into GK that although I know he cares about me he also wants to be able to report good trouble free results from treatment.  He did mention steroids at my last visit but my GP and Wife are very against that type of treatment.  I am okay with the symptoms if I know the swelling isn't damaging something.  Right now my face is okay but it continues to get worse and I will be very upset if it goes south because of something I did or did not do.   
Just venting

Frank

[leapyrtwins]

Talking about knowing the terms I should at least know the initials are GK not KN.  Now that all of you know how smart I am I will just say I really appreciate all the time you spend doing this and helping me out. 

Frank -

hope you didn't think I was questioning your intelligence - I actually thought KN was something I'd missed.  There are so many initials we use here - AN, IMO, SSD, BAHA, PT, GK, CK, etc - that sometimes it's hard to keep up.

AN journeys aren't easy things - lots of potential bumps in the road - venting is very therapeutic and if you can't vent here to your fellow forumites, where can you vent? 

As Steve and Phyl said, hang in there.

Best,

Jan