Swelling post Gamma?

[Echo]

Just wondering if those who have had swelling post Gamma can tell me what they experienced and what I should be watching for.  I'm 4.5 months post Gamma and overall I think I'm doing pretty good.  My vestibular issues have been worse for the past week.  My wobble is almost constant and I have been feeling light headed and tipsy pretty much 24/7.  I had an exceptionally rough weekend with things visually jumping around when I was out grocery shopping and then trying to walk outside in some fairly heavy blowing snow.  I am not experiencing any severe headaches, which I'm thinking is a good thing.

I'm honestly not sure if my increase in symptoms is from the changes in barometric pressure and the extremely high winds we've been having combined with some pretty nasty weather, or if my AN is starting to swell - or it could be a combination of both.  I also don't want to bother my Neurosurgeon as long as I'm able to manage my way through this. 

Thanks for any info provided!
Cathie.

[rupert]

I am 4 years GK now.  I had bouts of dizziness now and then. Some fatigue for sure,  Some days were just blah.  These things came and went.  Nothing that serious that I couldn't handle with some rest.  Being tired definitely increased symptoms.  The frequency of these bouts has now gone away almost completely.   I wondered too,  if there could be possible swelling.  I have had 5 MRI's since my treatment and not a one showed any swelling. In actuality they all showed shrinkage.  Not all AN's swell.  These symptoms you describe are a reality of these things.  I've found rest a good symptom reducer.

[Alison]

Hi Echo,

I have had swelling, well increase in size which I hope is swelling not growth!

My symptoms all got worse at 3 months. I had an MRI at 4months. I have only recently found out the measurements for that MRI as the previous radiologist didn't give measurements! It had increased 3.5 mm x 2.5 in 4 months post SRS. I had an MRI this Jan, one rear post SRS it is now 2.5mm x 1.mm bigger than before SRS. My symptoms all got worse again last month, but don't know if that was swelling or not, but seems like the 3 months episode was.

By symptoms I mean very bad imbalance, head spins, tinnitus and head/ear pressure.

I am waiting to discuss the size increase and symptoms with the docs hopefully this week. I know its usually a 2mm increase on pre SRS MRI which can mean a fail at 2 years but I've heard its worth waiting 3 years before deciding on further treatment. We have to hang on in there!

Alison x

[arizonajack]

As long as your MRIs show dark spots in the tumor (necrosis) then the temporary swelling is a normal course of events in the progression of the dying tumor.

Shrinkage after successful SRS treatment starts occurring between one and 3 years.

http://ars.els-cdn.com/content/image/1-s2.0-S0360301612004336-gr3.jpg

Unfortunately, I have no clue as to why negative symptoms are present in some of you.

My post GK experience has been rather uneventful.

[Echo]

Thanks everyone for responding.

I'm sure this is perfectly normal it's just learning to take a deep breath and telling myself it's all part of the process that I find difficult some days. It can be rather unsettling when things start to change or intensify. 

Rupert, you made perfect sense reminding me to get enough rest and that not all AN's swell.  I take rests daily through the week, but on weekends I sometimes miss. I actually took the day off work yesterday to just sleep - something I haven't done since returning to work in Oct. after my Gamma.  I really felt that I needed to stop and just give myself a break.

Alison, I agree you should not think about the Gamma failing yet!  I've also heard that it's wise to wait up to 3 years, as long as we continue with our MRI monitoring.  Let me know how you make out with your Dr. appt.

Jack, my first 6 month MRI will be in March so lets hope we see some of those nice dark spots!!  I hope you continue with an uneventful recovery, it's the best kind to have.

Cathie

[rupert]

   We have to remember ( Even though we don't want to admit it ) that radiation treatment does it's thing over a very long time.  When I talked with my neuro about success and fail of treatment we talked in years (6-9),  not months.  A lot of things can happen over that time of course, good and bad sometimes.  I see it on these forums often, that  people are concerned and convinced about things at the 6 month and 1 year time frame. Creating unneeded stress.  We need to monitor of course,  but,we need to suck it up sometimes too.  Our brains are constantly adjusting for these balance issues caused by these AN's.  Our brains get stressed, especially if things our brains use are taken away.  Like light!   When our brain gets stressed we need to back off.  Even though we may not want too.  I know myself I have to make the time to rest, it's just part of life with this condition.   Get your regular MRI's and then take care of yourself.  I know it's not always easy, but it's what's been dealt.

[Petrone]

Hi Echo,

We all react differently to these procedures, but I too experienced sharply increased dizziness, head fullness, and severe headaches about 3 months after GK.  I had an MRI done during that period and the image showed my 1.8 cm AN had swelled noticeably to 2.2 cm.  Those two months were very difficult to endure.  Fortunately, all of those symptoms gradually subsided.  Now I am 9 months post-GK and feel great.  No lasting side effects at all!  My 6 month MRI showed the tumor had shrunk to about 1.7 cm. My AN side hearing sharply declined after GK, but I can live with that.

So, check with your oncologist, but also try to persevere through what may be just a temporary set-back as your AN responds to radiation. I wish you all the best. PM me if I can help answer any questions.

Be well,
Petrone   

 

[Alison]

Hi again folks. Some informative posts here.

Great news Petrone that yours shrank back, very encouraging.

Echo, I've spoken to my neurosurgeon who said there was too much to go into over the phone, so I am now going to see him in three weeks to discuss the MRIs with him. Arizonajack, I couldn't see any dark spots on the MRI myself, but I didn't have contrast, it wasn't ordered, so don't know if they'd show up.

I'll report back with any information after I've seen the doc.

As Rupert says it's a long haul! Hang on in there Echo!

Alison x

[Echo]

Hi Alison,

I'm hangin!! 

Thanks for the encouragement, we all need a touch of it everynow and then.  All the posts to my question have helped immensely.

Alison, please keep us updated with news from your next appt.  I hope all goes well for you.  If he said there's a lot to review, don't forget to take a notebook! 

Cathie.

[ASG]

Hi Cathie,

Sorry for responding late to your thread (I'm on this site less these days).  Just wanted to say that I'm also about 4.5 months post-GK, and I also noticed my tinnitus was a bit louder, and my balance a bit more wobbly during the time period you mentioned.  I live in Michigan which has also been slammed by the winter weather and extreme temperatures.  Not sure if its because of the weather, or being 4.5 months out, but quite the coincidence that we both noticed a change around the same time!  Just letting you know you're not the only one.

I don't know about you, but for me, part of the process has also been dealing with a hypersensitivity to every bodily sensation.  Pre-AN diagnosis if I had a day where I just felt off, I'd chalk it up to getting a cold, not sleeping well, or just randomness, and move on.  Now literally even the smallest change in physiological sensation is immediately noticed, monitored, and considered in a way that's not always helpful.  Part of my "recovery" is to try to keep these changes in perspective.

Good luck and hope you're feeling better!

Adam

[mesafinn]

Cathie--

It's been too long between hello's!  You've gotten some great insights here, and you know I'm still adjusting to my own changes and recognitions (I agree with Adam that I'm still trying to figure it out and not be too hypersensitive).

You know I've come to agree with you about correlations in weather and storm fronts.

But mostly, I wanted to applaud your decision to stay home and rest.  We could all take such advice!  GK IS still a form of surgery, and our body IS still responding accordingly.    Glad you're listening to yourself, and I hope all things in your world only continue to improve.

Don't be a stranger and stay well!!

P.

[Echo]

ADAM - thanks for adding to the thread.  It's really good to hear from someone who is going through a timeline close to mine.  I am equally thrilled to hear that you live in Michigan so you can relate to the winter weather.  It has to be more than a coincidence that we are both going through similar issues given the crazy winter we are having.

I wouldn't say I am hypersensitive to changes I feel, but I am aware of, and record anything that seems new and unusual.  Overall I feel pretty good and can't complain.  I do get frustrated though with the ongoing balance and occulomotor issues I'm having.  This is when I get to work on developing patience, and like you learn to put things in perspective.  Please keep in touch and let me know how things go for you!

PATRICK - Always great to hear from you! Yes "rest" is my new best friend.  It's amazing what a difference it makes to just take 15 minutes in the middle of your day and zone out.  The exhaustion I feel when I don't get enough rest is truly overwhelming.  Not sure how long that symptom lasts, but hopefully as I approach the 6 month marker it will start to fade away.  I believe we really need to learn to pay attention to our bodies and rest as needed - it's part of the healing process.  As much as I hated taking a day off work to sleep, it was the best gift I could have given myself. I didn't get distracted watching TV or reading, I simply slept the day away and was 100% better for having done so.

How are things with you?  Have the facial spasms finally disappeared?

Cheers!
Cathie.

[ampeep]

Hi Cathie,

Was wondering, did you have balance issues prior to GN or did they start afterward?

Hope you're feeling better.

Keith

[Echo]

Hi Keith,

I've had terrible balance and coordination my entire life and I'm 59!  I actually laughed when I was diagnosed and the specialist asked me how my balance was.  I don't think Gamma Knife has impacted my balance one way or the other yet.

At the time of my diagnosis (May 2012) I started to notice that I was bumping into things somewhat more frequently.   Within the next year my AN grew from 1.8cm to 2.4cm and my balance sure did change.  I went from having the occasional wobble to developing some minor occulomotor issues.  Since May 2013, I've continued to experience some changes and my wobble is now more of a "wander".  I tend to drift from side to side when walking.  I don't go up or down stairs without using a railing and walking anywhere in the dark is lots of fun!! My bigger issues these days seems to be more visual with continued occulomotor issues - buildings moving/twitching - things moving visually that should not be moving when I'm walking.

I actually saw my Neuro Ophthalmologist yesterday.  She said I'm doing great!  No pressure on the optical nerve and my pupils look good.  She is advising me to keep up with the Vestibular Rehab and that as far as the occulomotor issues go, my brain is still getting mixed signals.  She said she sees many people far worse than me and that I should not worry.  As for the long term, she couldn't say if this will improve or remain the same.   

Overall I am functioning quite well.  I have a few days every now and then where things are not great, but don't we all!      So far I'm pleased with my choice to have Gamma Knife. I'm able to get up and go to work each day and pretty much carry on with a normal (though wonky) life.  I am optimisitc that my balance and visual issues will resolve over time.

Glad to help you Keith in any way I can.  I hope you continue to do well.
Take care,
Cathie.

[ampeep]

Hi Cathie,

Your response cracked me up!  I admire your positive outlook on life and sense of humor!

The evening after GN, my wife & I walked our two doggies for 40 mins - felt great.

It's only been 2 days since my GN but I noticed a few instances of dizziness.  Is that quicker than usual?

Made me recall some things that happened about 2 years before my AN diagnosis.  Late one night i got out of bed & fell onto the floor.  Was strange cuz it never happended to me before - thought maybe I got up too quickly.  Later, I experienced dizziness while driving up a particular hill on the way to work - it went away after 3 weeks.  Maybe these were early signs of my AN?

Good to hear that you're doing well, and really appreciate your help!
Keith