Journey of Recovery after CK for 1.5 cm AN

[sunfish]

It's always so good to hear from you.  We had CK around the same time last spring.  It gives me hope to hear that your balance is improving.  I think mine is, too, a little bit.  Very sorry to hear about your facial problems.  I've developed what I think are some muscle twitches inside my ear (cause weird, thumping tinnitus), and now I read that those muscles are controlled by facial nerve.  So I guess I have a tiny bit of facial nerve involvement, too.

I sure hope things do get gradually better for us over the next 12-18 months.  Keep in touch!

[Jim Scott]

Hi, Laleh ~

Thanks so much for the update, although I'm sorry to learn about your facial issues.  I'll have to assume the spasms are being generated by swelling, which tends to be fairly common at this point, post-treatment.  I hope, along with you, of course, that the doctors are right about the spasms being temporary.  Try to remain as calm as possible and look toward the spasm-free future that I trust is waiting for you! 

Jim

[kkgriffin]

I had ck in Nov., 2010 and have had problems since with zapped energy, headaches, wonky head and severe balance issues.  But today was the first time I had facial problems, thankfully it only lasted about 20 seconds.  The left side of my face (AN side) went numb, a pain and then my eyelide dropped and my that side of my mouth dropped and it was "frozen" that way.  There was not anything I had done to cause it except I had just come out of vestibular therapy, only my second treatment.  Seems that it was obviously related to my an, but was very scary.  I have not called my Dr. as doesn't seem like there is anything that can be done about it.

I am sorry to hear about all of you who have problems, but it does help me to know that I am not alone it this journey.  Sometimes I feel like I am losing my mind.  I am excited to have started vestibular therapy and am hoping it helps.

Karen

[ppearl214]

Hey Karen,

Since you had your CK in Nov, 2010 (3 mos "toastie postie"), you are in that timeframe that if things decide to crop up, they may.  Please don't disregard what is going on.... as your homework has shown, some post-radio can occur and you should be notifying your CK team (ie: radio-onc AND neuro-onc, possibly via the onc-nurse) that these things are going on.  They can prescribe short-term course of anti-inflammatories/steroids as tumor swelling can occur (sometimes part of the process) and if they do prescribe, can help alliviate what is going on.  Glad to hear you are starting VT and here's hoping it helps the cause!

Reminder to all radio-patients.... through homework, by advise of many radio docs (not just our own by also via the docs that volunteer their time on the CK forums, etc) that follow ups should be done with the treating teams, esp immediate post-radio.  There are possibilities (not always, but sometimes) that things may crop up between immediate post-treatment to approx 2 yrs down the road and the treating teams should always be alerted if something is going on that just doesn't seem right as there are things they can do to try to help the cause.

As we all know, "individual results may vary" and these things don't happen to everyone, but if they do, please alert your radio team so they can best assist.

Hang in there, all.... .wellness wishes to you and hoping each day becomes better.

Phyl