Information required regarding recovery after Gamma Knife treatment

[Asif Tagar]

My mother had a gamma knife treatment for malign acoustic neuroma 2 months ago. Before Gamma Knife treatment, her right hand and leg were completely numb and unmovable but after the treatment she could easily move her hand and leg. After a few days of treatment, the right hand and leg went numb again and now she cannot lift anything from right hand, walk properly, feels nausea.

I had a question and I was hoping for you to provide an answer, how long does it take for an acoustic neuroma patient to recover after gamma knife treatment and get back to normal. After the treatment, it has been 2 months so far and still there are no signs of betterment.

Hoping for a reply.

Thanks

[Christinemendozabilal]

So sorry to hear of your mom , i may not be an expert but i had gamma knife 6 weeks ago i was off work for 1 day and so so all seem to be well except a fullness in my head after flyingthis weekend . I was told gamma knife has a faster recovery time

[Echo]

Gamma Knife has initially a faster recovery in the sense that you can go back to work within a few days after treatment whereas with surgery it's several weeks or months depending on the outcome.  Gamma Knife is not however a quick fix.  It is a slow and hopefully steady recovery period over what can be several years.  Because the AN remains in your head, the cells can frequently react to the radiation by swelling prior to dying off and shrinking.  If there is any swelling, various symptoms may occur and they can disappear on their own or sometimes the patient requires some additional help with steroids.  My neurosurgeon told me to allow 18 - 24 months before we will know where things are at.  Swelling can occur during that time period.  Hearing can continue to change and balance issues can remain.  Many people over time have a fairly full recovery others have lasting symptoms.  We all react differently.  On the positive side, most people find Gamma Knife to be relatively symptom free and most symptoms are quite manageable. 

If your mom has any severe reactions or symptoms you are concerned about, you should contact her specialist and keep him/her informed.  I personally have never heard of numb hands or legs related to AN's but I am not a doctor and I would recommend looking into the cause of the numbness further.

Best of luck.
Cathie.

[carjon0]

Sorry to hear of this.
I had gamma knife 18months ago, expecting to be back at work within a few days, but it hasn't worked out like that.
My balance has been badly affected, although now it's hugely better than it was a year ago.
I think it's a process that affects everyone in a personal way, some have a smooth, speedy recovery, some it's less so.
I have had a lot of help from physiotherapists, audiologists and from ENT specialists who have tried various things. It's working, but much slower than I'd have chosen.
Some days it's better than others with headaches and balance. Daft example - today my balance has been worse, but it may be that I wore sandals with a different height heel - can't think of any other reasons.
It's just how it is, I found it harder if I thought that I should be better than I was.
None of the above is meant as a moan, or a "failed an", it's certainly not, but it's a variation of how gk can be.
All the best to you and your mum.

[mplmimi]

I had GK 17 months ago and was out of work for 2 months.  I was very symptomatic before GK and am still very much so.  My nuerosurgeon also explained to me that the radiation would continue to react with the tumor for up to 24 months--I am hoping that all of the various symptoms I feel are the changing and dying of the AN.  Some days I actually feel like my "old" self, but most days I am aware that it is still there. 

GK is definately NOT a quick fix, but after considering all options, it was the best treatment for me.  I suppose TIME and PATIENCE are key to this process.  Hopefully they will heal all of us who wait. 

In the mean time, I try and do my best to live as I did before.  It takes a lot of effort and energy, but I am determined not to let this "intruder" in my head get the best of me!

[Alison]

Hi, sorry to hear of your Mums complications. I echo what others say that radio is not a quick fix. I had Linac SRS (same as GK but different machine). My symptoms of imbalance, head pressure, tinnitus etc all got a lot worse at 3 months post, and are still worse at 18 months post. But I too have had an odd numbness in the arm and hand on the AN side and a weakness on that side. For example I can't carry shopping in that hand as my balance goes completely. It started off as tingling, now its a general floppy/ numbish feeling.

I asked the neurosurgeon and the radiation oncologist and they didn't seem to know what was causing it. But a physio I've seen recently thinks it could be damage to nerves related to the treatment or the AN as a nerve pathway runs down from the AN area of the brain to the arm. Recently on here another lady and I were also wondering if it was needle damage due to the amount of blood tests etc before and after diagnosis, and/or contrast delivery for MRI.

A few people I talk to on another forum for ANs in the Uk have had arm tingling/numbnes/weakness but we don't get anywhere with an explanation. If you google it you get other horrors come up!


 I hope it is just the AN swelling (as the MRI at one year post showed an increase in size of 3.5mm so now around 18 mm )but I'm beginning to think I be stuck with all this.

Let us know what her docs say. Hope it improves for her.

[Kat From Indiana]

Great feedback from everyone! Cathie, your posts are thoughtful and informative.  I never fail to learn something new when I read one of your replies. 

I am sure that symptoms pre-Gamma Knife will not just go away immediately after GK and may even get a bit worse for a while?  I also wonder if the size of the AN is also indicative of post symptoms.  My AN is small and my GK procedure was uneventful.  Procedure on Friday, back to work on Monday.  Water/Amusement park and camping the following weekend.  However, I am prepared for setbacks and I filled my RX for steroids, just in case.  Asif, can you talk to your mother's physician?  It seems as though her doctor would be able to answer some of your questions, but from all my research about Gamma Knife, it doesn't sound like your mother's situation is typical for post GK.  I hope she feels better soon.  She is blessed to have you as an advocate!  Take care.

[Echo]

Kat

Thanks for the kind words!  Glad you find my posts helpful.  I have certainly gained a lot of insight from many others who use this forum, and it feels good to help others through this process where possible. 

I don't believe any symptoms pre Gamma just go away immediately after Gamma.  Gamma does not work that quickly.  The size of your AN probably does play a part in what type of post treatment symptoms you would have, but I would have to think the position of the AN would also play a part in that.  Someone with a small AN primarily in their IAC would not necessarily experience the same swelling issues as someone with a larger AN primarily within the CPA where it would have lots of room to expand.  Having said that, not all AN's swell post treatment from what I've been told.  It really is one of those things that is different for each and every one of us.

Kat, you sound like you are doing great post treatment.  I hope you continue to do just great!
Cathie.

[Asif Tagar]

Thank you Kat and all of you. It was wonderful to see so many replies. It has been 6 months now post gamma knife treatment and things are still looking tough. Lost of balance, nausea, vomiting and headaches is still what my mother has been facing. She doesn't like to eat anything. I have recently spoken to the doctor about it and the doctor said that gamma knife treatment takes about first six month to control tumor growth and then in the next 6 months it reduces the tumor. After 6 months, MRI test showed no change in the tumor. I would like to know how long does it take after the GK treatment to start reducing the tumor because its been 6 months so far and still no change.   

Thanks

[Asif Tagar]

Hello Forum,

It has been 2 years now post Gamma Knife treatment but unfortunately the symptoms are still the same, vertigo, nausea, vomiting. I wanted to know if anyone else is facing the same issues even after 2 years of Gamma Knife treatment for a brain tumor.

Hoping for a reply.

Thank you

AT

[PaulW]

I think for many of us that have had radiation we may get days where things are a bit off after two years. I haven't heard of anyone being as bad as you describe after two years
There maybe something else going wrong with your mothers balance system.
It maybe worth getting the entire balance system tested.
It might be a problem on her good side that has nothing to do with her AN
There are lots of things that could be causing this and after two years you would have to suspect that it's not GK alone that is causing it.

For severe balance problems it maybe worth enquiring about a Gentamicin injection directly into the ear drum. This will permanently destroy the balance organ on the AN side.
This is what happens to many of us anyway. The Gentamicin injection speeds up the process.
Rather extreme, but I believe it is the best option for people with crippling vertigo that cannot be fixed in other ways