6 month post SRS

[Alison]

Hi,

I am 6 months post radiosurgery (linac). At 2/3 months the symptoms I'd had since before treatment got a lot worse (tinnitus, dizziness, constant imbalance). Two days after hitting the 6 month mark it's like they have all stepped up a notch again with worse ear/head pressure and even worse imbalance, if possible!

Just wondering if anyone else had worse symptoms at this stage, instead of the improvement at 6 months some get, and if so when and if you had any improvement afterwards.

I need some hope!

many thanks Alison x

[maxine]

Hi Alison,

 I am 8 months post GK and like you, I seem to have had a parade of symptoms from ear pain, disequilibrium, fatigue, hemifacial spasms, tinnitus. Luckily I don't have all of them at the same time usually!  I also got worse at about  2-6 months, with my balance getting very problematic about 2  months out and  facial issues worsening a bit later.  What I have noticed, though, is how changing and variable each of the symptoms are.  Sometimes my hemifacial spasms seem to be disappearing, and then they come back; some days, the ear pain is noticeable and then there are weeks where I barely have it.  Even weirder, the scalp tenderness I had at the very beginning, which disappeared at about 2 months, returned a few weeks ago. 

But, my 6 month MRI looked good. There was some swelling, but also a darkening at the center that seemed to indicate they had zapped the tumor.

 Three thoughts about how to think about  the symptoms:  I read a lot before deciding on and undergoing the GK, including what symptoms to expect BUT I was still surprised, I think, because the literature that the gamma knife centers put out seems to downplay the short- and long- term side effects. And I think I also felt in the beginning like I was in a hurry to move on and put the AN and GK in the past, but it was so hard to do so when every day I had another weird sensation or new challenge. I do  think that the symptoms  might peak, for some people, at the post GK time you are at, so there's reason for hope.  I guess my final thought is that everyone's symptoms are so variable. Sometimes it's helpful to see that other people have had the same issues, but even if you don't find someone who does, you might still be ok. And of  course, it never hurts to check with your doctor either. 

Have you tried vestibular therapy for the dizziness?

Maxine

[robinb]

Maxine-

I too have been dealing w/the spasms on and off since April; two months post GK. That's my only side effect. other than occasional tinnitus, which I had going in. You can follow my posts under

My personal gamma knife experience.

[Petrone]

Hi Alison,

I also began experiencing diminished hearing and increased wonkiness at about 8 weeks post-GK.  (I'm about 11 weeks out now).  I'm trying to remain optimistic that these are temporary side effects caused by the AN swelling and putting pressure on the hearing/balance/facial nerves. No guarantees, mind you, but there are some encouraging forum posts that tell of similar side effects subsiding after 12-18 months.  A long haul, I know, but keep the faith. 

More to Maxine and Robin, have either of you ever looked into facial yoga for your facial spasms?  (I came to yoga generally about a year ago to help with balance issues and it's been a godsend.) I also began experiencing mild facial nerve twinges in my lower eye and cheek on my AN side the last few days and I thought I'd try some proactive steps. I saw a seminar a while back at our local ANA support group by the legendary Jackie Diels (look her up under "facial issues" on this forum) and she described various facial exercises to help counter the spasms, etc.  Anyway, just a thought.  Here's a link to a you tube video (that I hope will transmit).  If it does not transmit, you can search for "facial yoga" on you tube, if you're at all interested. 

http://www.youtube.com/watch?v=7WOI1Ce5L4A.

Best wishes for all of you,
Petrone

[Alison]

Hi everyone, thanks for your replies and encouragement.

Maxine, I know what you mean about being in a rush to get treatment behind you. I also read loads about treatment options and at first thought I'd need surgery because SRS doesn't always resolve imbalance as the AN is still left pressing on the nerves. But I was desperate to avoid surgery (not that it was offered to me here in the Uk and I was told firmly that SRS was the way to go). I now wonder if it is the case that SRS sometimes leaves you with the imbalance permanently. Although I know some surgery patients are also plagued with imbalance.

For the first two months after SRS I thought I'd gotten off lightly as things were much as before; tinnitus, dizziness and constant imbalance, but bearable.

Then we are hit with much worse symptoms than before treatment and realise the fun is only just beginning!I've also had intermittent ear pain and facial twitching, although for me it's the head spins, dizziness and severe imbalance that have seriously affected my daily life and independence, which in turn of course, begins to get you down. I can tolerate the tinnitus and worsening hearing, I just wish I could walk without feeling and looking like a severely innebriated drunk!

Reading that some people have a breakthrough at 6 months but getting worse symptoms instead hit me a bit hard. Although I still consider myself lucky compared to the terrible time some people have had after surgery. (Hopefully we will avoid surgery, fingers crossed).

Maxine, I'm glad your scan at 6 months was encouraging. I'm not due for one till a year is up. Although I had one at 4 months via my GP, to rule out hydrocephalus. That showed some slight tumour enlargement, which I assume is swelling, but I got no more info than that as the oncologist who treated me didn't see the MRI. To be honest she didn't seem to have much to say about treatment after affects anyway, just said it was unpredictable, full stop. I've learnt all my information on this forum and one in the UK.

I asked about vestibular therapy but it doesn't seem to be available where I live and my GP and oncologist haven't even heard of it.

Its good to hear from others in the same boat, and compare notes, so thanks again. I hope we all get some relief before long. Please update about how you get on too.

Alison x

[arizonajack]

I asked about vestibular therapy but it doesn't seem to be available where I live and my GP and oncologist haven't even heard of it.


Alison x

Allison,

A little googling came up with several vestibular rehab therapists in the UK:

http://www.manchesterphysio.co.uk/treatments/vestibular-rehabilitation.html

http://www.cuh.org.uk/addenbrookes/services/clinical/audiology/services/vestibular.html

http://www.royalsurrey.nhs.uk/vestibular-rehabilitation

http://www.theabbeyclinic.co.uk/OurServices/VestibularRehabilitationTherapyVRT/tabid/102/Default.aspx

http://www.vestibulartherapy.co.uk/#!

http://vestibular.co.uk/

The Brain & Spine Foundation of the UK might have lists of others:

http://www.brainandspine.org.uk/vestibular-rehabilitation-exercises

Or, google vestibular rehabilitation therapy with the name of your city to find more.

[Alison]

Wow, thanks arizonajack, much appreciated.

My GP had also told me that she didn't consider vestibular therapy appropriate. Probably because GPs don't know enough about ANs. She said there were none in our area, but I'll do another search.

Thanks again, Alison x

[gremmie]

Allison,

 We are probably only a few days apart treatment wise and I know what you are going through.  I want to encourage you to keep pushing thru this as you should begin to have more good days than bad days.  My symptoms increased during the 3 to 5 month time frame and just now am starting to see a pattern whereby I am finding myself not thinking about them as much.  I have had all of the symptoms; spasms, imbalance, wonkiness, hearing loss, tinnitus....etc! I have had 5 to six sessions of vestibular therapy which did help. I might suggest searching youtube for vestibular therapy post.  I found several that I watched and followed before my regular therapy.  Walking outside for twenty minutes a day and keeping active even though you do not feel like it has also been a key to me feeling better!  For the fullness or pressure, you might be well served in a low salt, low sugar diet.  I have noticed that watching my salt intake helps a bunch.  Also, you might ask your GP or oncologist if a diuretic might be helpful.  This would also help with the fullness in the ear feeling you describe.

 I had my six month neurotologist appointment this week and he seems to be pleased with my progress.  I told him I was frustrated due to taking two steps forward and one step back....two or three good days then a miserable day, and his response was this is not a linear progression....ups and downs are the norm but steady progression is what we are striving for. 

I know we hang our emotions on every word that we are able to read or hear about regarding the progress of others.   This forum has been my lifeline and I encourage you to keep the faith!  Just remember, we are all different in our healing.  Patience is the key when dealing with an AN recovery.

I would be more than happy to provide you with information I received from my vestibular rehab sessions. 

Gremmie.

SRS 12/27/2013 3mmx5mm.  3/13 5mmx11mm.  6/13 stable

[Alison]

Hi gremmie,

thanks for your reply. We were zapped on the same day, 27th Dec! Sorry to hear you've been suffering too, especially the eye problems, they sound rough.

I guess my worsening balance and tinnitus is due to another episode of swelling that may have occurred at 6 months. I'm surprised yours has swelled to almost double in size. Mine was 15 x 10 mm before zapping so don't know how much it may have expanded to. I have to wait till Jan 14 for the next MRI as yearly is standard in the UK. ( I only had one at 4 months to rule out hydrocephalus via my GP but as I mentioned, I didn't get a measurement of tumour growth).

I never get a day when imbalance has let up though. It seems my symptoms in that area have been a steady progression, but of of getting steadily worse! But fingers crossed the rest, ie twitching and pain, only fluctuate.

Are you a US patient? It is rare to talk to someone else who has had Linac as opposed to Gk or Ck. Thanks for the idea about watching youtube VT, I'll check it out.

Alison x

[arizonajack]

( I only had one at 4 months to rule out hydrocephalus via my GP but as I mentioned, I didn't get a measurement of tumour growth).

Can you get all your MRIs on CDs to take home with you?

I do that.

Mine have centimeter scales along the bottom and side of the image so it's easy to take a measurement.

Even without the scales you should be able to tell the difference in size of the tumor by comparing the images.

[Echo]

Just wondering about everyone who has responded to this thread - you are all 6 months or slightly longer post Gamma and I'd like to know if the symptoms you are experiencing now are difficult enough to interrupt your daily routine (ie: return to work) or are you able to continue normal daily activity while pushing through these symptoms?

I sincerely hope everyone starts having more good days than bad, and sooner than later!
Cathie.

[maxine]

Hi Cathie,

 This is a response to your question about symptoms.  I've had a lot of different symptoms, and I do notice them, but  throughout the past seven and a half months, none of them have significantly impacted my life to the extent that I am unable to do things.  My balance problems make it harder to walk quickly, and I am very careful going down stairs and in parking lots, and I veer a bit in open spaces,and my spasms can be a little embarrassing in public, but there's nothing that would keep me from working. I would say the biggest difference is still the SSD during group conversations or in loud public spaces. I also find I have kind of a delay in comprehension -- sometimes I say "huh?" and then realize I understand what I heard-- kind of like when you speak a foreign language but it's not instinctive yet and you are still translating things.  I wonder if that comes from having all the sound in one ear conducted to the other -- hence the delay-- or if it's just because speech differentiation is so hard for me at times. Of course it goes without saying,  I'd rather be back to where I was before the AN, but I also feel really grateful that things aren't worse.

[Alison]

Hi,
firstly arizonajack, thanks for your suggestion. I got a cd of the MRI but it had no measurements available and no image on it was in any way comparable to the one I had a print out of from before treatment. They were done at different hospitals on different machines by different technicians, so suppose that's why!

Secondly to Echo. Unfortunately my treatment has had a major impact on my life since three months after treatment when things really went downhill. This is because of the dizziness and imbalance and head spins set off with every movement.

Simple tasks are very difficult, such as hanging out washing, because it involves bending down causing major head spins and imbalance. Walking a few steps sets off the head spins and I tend to veer across the pavement and stagger like a drunk. Because my brain is spending most of its power to keep me upright, and the tinnitus makes sounds very confusing, being outside can become very disorientating. Concentration indoors is also poor on any tasks that involve concentration because my brain becomes overloaded, again  I imagine because it is trying to keep me upright and interpret sounds such as conversation through the barrage of tinnitus!

Sorry if this sounds dispiriting but I think I should tell it like it is. Of course surgery can leave you worse off, so if youre contemplating options bare in mind I may be a bad example of post SRS. I just hope symptoms recede eventually!

Alison

[Jim Scott]

Hi, Alison ~

I've been following your AN journey (via your posts) for the past 10 months and wanted to let you know that I'm sorry to learn of your post SRS issues.  I also wanted to use this opportunity to mention that although radiation treatment is certainly non-invasive and recovery is generally easier than that from surgery, your situation is indicative of the fact that radiation treatment carries it's own risks.  The good news I wanted to share with you is that, as with most AN post-treatment situations, time is on your side.   

From what I've read on these forums in the seven years since I joined (and since my own successful AN surgery and FSR) I've noted that the vast majority of AN patients that underwent radiation treatment eventually recovered to the point where they can function relatively normally.  Although there may be a few lingering issues, they are usually infrequent and not life-altering. 

Of course, each AN patient is a unique individual and one person's successful radiation and/or surgery recovery, whether good or not so good, rapid or glacially slow, is not a template for every AN patient's treatment recovery, but simply an indication of the potential for possible problems or for the possibility of a complication-free outcome.  This is why I often caution newly-diagnosed AN patients on this forum that are contemplating radiation treatment that it is not a panacea and carries it's own risks for post-treatment complications.  I state this as an AN patient - not a doctor - who has undergone both AN surgery and radiation.  Fortunately, neither procedure resulted in any life-altering issues. 

Of course, only a physician can credibly recommend a specific procedure and only the AN patient can decide what medical path to take to address their acoustic neuroma.  All that folks like me can do is provide as much factual information as we can, our support and our hopes and prayers for successful outcomes and the cessation of symptoms and post-treatment problems, such as those you are currently dealing with.   Those I offer to you along with my thanks for sharing your AN journey with us. 

Jim  

[Alison]

Thanks Jim,
your wise words are much appreciated. And thanks also for your continuing support for us relative newbies, along the radiation path!
Alison x