results from recent post-ck MRI

[DebbieL]

I had my 6 month post CK MRI last week and couldn't wait for the written report so called my neorosurgeon to ask the big question - is it dying in the middle and has it stopped growing?  I wasn't thrilled to hear that it had grown another 2mm and has no necrosis (I think that's what you call it) in the middle.  He will call me again after the MRI is read and he has the report in hand.  Meanwhile, he said he will schedule another MRI in 6 months.  I was really hoping to hear the words "it's dying".  I'm really disappointed.  On to another note - has anyone who has had CK experienced really bad face pain.  I had a really bad episode last week where my entire face hurt like I had never experienced before.  I've experienced headaches but never before has it been in my face.  I was also wondering about medication anyone has taken for headaches that works.  I am on 50mg Nortriptyline which doesn't seem to do the trick anymore for the headaches.  My doctor is out of town for a few more days so will try and get in to see her but was wondering if anyone else has headaches after CK.  I didn't have them this severe before.  Thanks

Debbie L

[Tumbleweed]

Hi, Debbie:

Not all ANs show necrosis at the 6-month mark post-CK, so try not to worry too much about your MRI results. It's important to remember that an MRI is just a snapshot in time. It may be that your AN had necrosis a month or so earlier and has already scarred over (scar tissue looks white in an MRI just like unaffected live tumor tissue). Or it might become necrotic in between subsequent MRIs, never to be observed as having necrosis but nevertheless progressing in the right direction. The important thing isn't so much that necrosis is observed but that the tumor's growth is controlled.

Which brings me to the next point: the 2mm in growth may be solely due to the tumor swelling. While this isn't a pleasant thing, swelling is due to the tumor reacting to the radiation -- i.e., beginning to die! It may very well be that your tumor is on the verge of becoming necrotic, but the MRI was taken just a little too soon to show this.

One last word of comfort: CK is effective in controlling tumor growth in about 98% of patients. Give it some more time. The odds are you're already on the road to a great outcome.

Best wishes,
Tumbleweed

[ppearl214]

Hi Debbie and congrats for the 6mos mark...... what I can share is this... head MRI's have a total margin of error of +/-2mm, so overall, you are in that range.  Different radiologists and drs read and measure differently. I can tell you that my neuro-onc, who's on my CK team, reads and measures my AN differently than my CK radio-onc.... go figure?  I usually take their average and determine it from there. As you can see in my sig line, I'm running about 2mm +/- in my AN measurements over time with some minimal shrinkage, so for me, I've come to terms with it. My hope is that there is no swelling going on  and that you all have stunted its growth (ultimate goal of radio-treatment for AN's).

We didn't see any darkening of my AN for quite a while in my films. One wise person on this site reminded me that at the time the films/MRI is done, you have to "snap the camera" at the right time to see it.  As you are only 6 mos post-CK, it may be more prevelent in films down the road.

The good news is that you are now a good distance post treatment.. and hoping the 2mm is nothing to worry about... and that you are hanging in there as best as you can.... and you got all of us cheering you on.

Hang in there!  Onward and upward to wellness.

Phyl

[windy]

Hi Debbie,

In regard to your facial pain, I did have an episode in Nov. and Dec. where I did have facial pain.  It was not my entire face, just the right side where my tumor is located.  It covered my whole right cheek and even went into my neck area.  I did not have CK, but did have radiation with GK.  My face hurt to even touch it, however, ear pain was quite pronounced at the same time.  I took a Medrol Dosepak and the pain went away.  I have not had the problem with my face since taking the steroids.  Also, I have had almost daily headaches since GK, but take Advil for the pain, which helps alot.  I hope your pain does resolve.  I am thinking positive results for you in your next MRI!  Take care.

Windy

[DebbieL]

Thank you so much for the encouragement.  Today was a down day with another major headache so it was nice to get online and be reminded that I might be worrying without reason.  I guess another 6 months will tell.

Thanks again.

Debbie

[sher]

Hi Debbie,
I am finding that alot of my headache is coming form shoulder and neck because I am using those muscles along with vision to stay upright. I am doing trigger point therapy and massage which is actually helping with my headaches. If you get a chance google trigger point therapy.. it is very interesting. I actually bought a book and have a theracane that I use to work on the points on my own. I am 3 months post CK and am experiencing some swelling but I am finding that my neck and shoulders are also adding to my symptoms. Let me know if I can help. You are welcome to PM me and I will give you my phone number if you like.
Sher

[mindyandy]

Hello there.
I can totally understand the worries that come with having MRI's. If you look at my previous posts you will see that I too had swelling 2mm at my 6 month MRI post CK with no nerocis(sp?). I am 1 year out right now and had an 11 month MRI whiched showed some shrinkage:) still no signs of nerocis.. No growth is the main goal.
You are not alone on the swelling issue. Waiting is the hardest part. Especially during the waiting period you feel all sorts of strange sensations.....

Take Care and keep us posted.