post gamma knife treatment

[joanc]

I had gamma knife for my acoustic neuroma the end of November.  The last few months I've had tingling on the side of my face of the radiation-around my eyes, nose ,and mouth.  That side of my face in numb as well as my teeth and gums.  My balance is off which I think makes me a little naucious all the time.  The surgeon had me have another MRI which showed the tumor is larger but could be the result of swelling which he says you can't tell from the MRI.  Said the blood supply looks less which would indicate the tumor is dying and I thought this treatment was supposed to be so easy-back to work and life the next day.  Does it get better.  I want my life back.  I wonder will I be able to go back to teaching pre-school in the fall if I continue to feel like this.
Thanks for any feedback.  I don't know why, but I've had problems knowing how to post messages.  I'm not very computer literate.

[sgerrard]

Hi JoanC,

It looks like you figured out how to post that message just fine.

Swelling after radiation is fairly common, and the enlarged tumor can bring on new symptoms. The good news is that it does get better. The bad news is that it can take a while. The usual "window" for swelling issues is given as 6-18 months; most patients that have it experience a peak period lasting a month or two. There is usually no permanent damage or long term effect from the swelling.

Ibuprofen works quite well at reducing the inflammation. If that doesn't help enough, some people also talk to a doctor about a short course of steroids, although those have their own side effects. I think you will make it through okay, and be able to teach pre-school in the fall. Just hang in there.

Best wishes,

Steve

[joanc]

Thank you so much for replying.  I was on steroids for 10 days w/ no positive results.  They have now increased the dosage for another round.  I'm trying to think positive but feel the tumor must be a whole lot larger than pre GK to be having the side effects I'm having and they seem to be concerned if it gets any larger.  The nurse even told me today that she didn't recommend that I travel this weekend and to make sure I took the doctor's phone number w/ me.
Oh, well,  I appreciate your positive message.  That is what I'm holding on to.
Joan

[Mia]

Hi JoanC

I had GK in May last year. I thouht it would be a "easy" way to treat the AN. I also have had a lot of "problems" after the GK. Have had no swelling according to the
doctor, the AN is on the way of dying. My doctor told me that with the AN it is difficult to say if the symptoms will go away or if I have to live with them.
The symptoms are a little bit less now, can be almost "normal" som weeks, but suddenly it`s back again.
This is probaly not what you want to hear, but I think it is important that people know that raditon can have a lot of symptoms.
I am now working 60%. I am also thinking in my "bad" periods that I want my life back! But when I am feeling good again, I am seeing bright on life again!
But I think/hope with someone it just take some time before we get well.

How big is your AN?

Mia

[joanc]

I spoke again today w/ the nurse at the Gamma Knife Clinic and she allayed some of my fears.  My surgeon is out of town and it was his nurse that scared me so badly.  Hopefully the AN is just dying and I'll just have to live w/ these symptoms for awhile.  My AN was 2.3cm. Yes, they tell you Gamma Knife is so easy but not everyone reacts in the same way. 
I hope you have more good days than bad and that very soon you'll be back to 100%!  No one understands unless you've been through this.  It's a very different journey.
Thanks so much for your support. 
Joan

[Jim Scott]

Hi, Joan:

I was a bit dismayed to learn that you're having these post-radiation issues but I see that you're feeling more confident, now, which is good.

I had both surgery and radiation, FSR not Gamma Knife.  Although I had few post-surgery problems, the post-radiation issues were not dissimilar to yours, only not near as severe.  I had definite swelling and it manifested symptoms all-too familiar to my pre-diagnosis symptoms, including a shooting pain at the AN site, pressure and so on.  Not fun but a few ibuprofen tablets handled it so I was never very concerned.  An MRI soon afterward confirmed swelling but a follow-up MRI a few weeks later showed both a reduction in size and the beginnings of necrosis.  The symptoms disappeared, and all is well, now.  I trust you'll have a similar experience.

Your comment regarding Gamma Knife being perceived as 'easy' resonated with me because I think some radiation oncologists may give patients that impression and of course, most AN patients want to believe it.  Of course, for some, it is easy.  While GK is certainly less complicated than surgery, I've always said that it carries it's own risks.  There is no 'EASY' button when it comes to AN treatment.

I believe you'll be ready for pre-school teaching by September and you'll certainly have your life back.  Just not as quickly as you should.  Your computer-illiteracy seems to have dissipated so I trust you'll visit here more often. 

Jim

[jb]

Joan,
Not sure which steroid you were using, but Decadron was way more effective for me for post-radiation swelling symptoms.  (I was tried on prednisone first.)
I feel much better now at 10 mos. post-treatment than I did just a couple of months ago.  It has definitely been a challenge, though, as my tumor swelled from about 2 cm to 2.5 cm.  Anyway, hope you're feeling better now.

JB

[joanc]

Thanks for all your positive responses.  yes, am on Dexamethasone which is probably a generic . The GK nurse thinks the severe headache I had Sun. could have been the result of going off the drug cold turkey Sat.  I'm back on the drug again w/ a larger total daily dosage and my face doesn't seem as numb as before-it changes frequently even during the day.  So hopefully, my course of recovery while not the usual will be successful. They didnot tell me the size of the tumor on this last MRI.  I guess I should have asked.
We do want to believe GK is a quick fix and I guess in many cases it is.  I can't thank you guys enough for your support.
Joan

[joanc]

I just went back for another 3 month checkup to see if the swelling had gone down any from the gamma knife treatment-and it's even gotten bigger-plus has a nodule on the tumor that has fluid in it.  It been about 10 1/2 mos. since the gamma knife procedure.  The doctor now recommends surgery .  I'm scared to death of surgery.  I talked him into waiting another 3 mos.  I feel so much better now than I did 6 weeks ago.  Still hoping the enlarged tumor is swelling as it dies.  Anyone have similar problems after gamma knife?  If so, what did you do?
    Thanks for any help.  This is so frustrating.  Don't know what or where my next step should be.
Joan

[sgerrard]

Hi Joan,

Well that was an unwanted little bit of news for you. I think you should wait at least 3 months, in fact more like 6 or 12, before you do a second treatment. Swelling is known to occur well past 1 year in some cases. How much has it grown, and how big is it? If you are feeling so much better, I assume you are not having symptoms from it, so it doesn't make sense to me to charge into surgery just yet.

You should take a look at the pictures JB posted of his tumor swelling up and finally going back down: http://anausa.org/forum/index.php?topic=7234.msg75328#msg75328. His went down at the 1 year mark, but it could easily take 18 months to go down. I also don't get how a doctor could tell that a nodule had fluid in it from an MRI; is that by the color of it? Maybe you should consider getting another oncologist or AN expert to take a look at the MRI.

Take care,

Steve

[mk]

Joan,

I am sorry for the news. I understand how anxious you must be feeling.

I would take the possibility of a nodule/cyst of fluid seriously. I recall having read about some cases in the medical literature, where these cysts full of fluid grow very fast and become large, even if the AN itself is not growing, causing compression and many symptoms. I remember reading that surgery was recommended in this case, and that once the cyst was removed, everything progressed well, because the AN itself was hit by the radiation.
You may want to consider obtaining some additional opinions, perhaps send your MRI scans somewhere else? Also you might want to consult with the Drs at the Cyberknife forum (Steve, please help with the new link!). Sometimes they might review your MRI scan for you.

Marianna

[joanc]

I gave copies of my MRI's to a friend that is the chairman of the radiology dept. at KU medical Center-so I can't give you the size of the AN. The radiologist at the imaging center is who said there was something w/ fluid in it in his report.  My surgeon didn't tell me that.  I was having bad symptoms before-now just some pressure in my face on the side w/ the AN and a little tingling around my mouthand eye.  It's not always the same.  All this is so much better than during the months of June /July.  I've thought of sending my MRIs to Dr.Kondziolka at thr U. of Pitt med. school.  I had consulted w/ him before I had Gamma Knife.  He had trained the doctor here and felt he was competent to do the procedure, but now I'm wondering if he has had  enough experience w/ ANs to help me with the unusual result of GK.
You guys are wonderful. Joan

[sgerrard]

(Steve, please help with the new link!)

The cyberknife forum is now http://www.cyberknife.com/Forum.aspx (they now have an Acoustic Neuroma section), and the link to the doctors is http://www.cyberknife.com/forum-doctors.aspx, though there are only two listed at the moment, Medbery and Spunberg.

Steve

[ppearl214]

(Steve, please help with the new link!)

The cyberknife forum is now http://www.cyberknife.com/Forum.aspx (they now have an Acoustic Neuroma section), and the link to the doctors is http://www.cyberknife.com/forum-doctors.aspx, though there are only two listed at the moment, Medbery and Spunberg.

Steve

FYI... as with any new website, there are a few technical glitches being worked as we speak. Please be patient (sorry for the pun) with the new site as the issues are being addressed.

Phyl

[Nancy Drew]

I had GK recently (see signature), and I am beginning to see that there are ups and downs that come with this whole process.  It is confusing to feel "good" one day, and then feel "horrible" the next.  I try to remind myself that I just had radiation shot into my tumor, and the tumor is trying to figure out what to do with the radiation.  But, I think it is always best to check with the doctor when things don't feel right.  From what I gather here and from my doc, it is best to catch things in the early stages.  It isn't every day that you have an AN treated.  I've found some good support here on this board.  Thanks.  Take care.  Nancy