Post Gamma Knife tumor growth

[jfspainter]

Yesterday I had my 6 month MRI. This is post Gamma Knife done on 8/2/2012 for 2.3cm tumor. Has anyone had their tumor grow after the GK?
 
I have lately had more dizziness or cotton head feeling, totally lost all the hearing in my left ear, LS face is really numb along with the eyeball, tongue and teeth on that side. Also more tinnitus and balance issues. I have just gotten very powerfully hearing aides which have helped my right ear which has been partially deaf since I was 5 years old. Has anyone lost their hear with GK and gotten it back?

Also I have to fly on Sunday did anyone experience air sickness when flying?

Did your docs recommend  anything for this?  I won't see my doc until 1/29/13.
Thanks, Jane

[JoyNJ]

I didn't have GK, but traditional radiation treatments.  But with the fullness, nerve pain and tinnitus and balance issues coming back, you need to call your doctor.  Either to go in to see him or to see if he might prescribe a course of steroids.  As others have said on the forum, these little tumors just don't like it when they are hit with radiation and can swell, and that will cause these symptoms.  I had hearing loss and the beginnings of nerve pain on my AN side the last 2 days of the 25 treatments which ended 12/18/12.  I was put on a small dose of steroids (I have type 2 diabetes and steroids can raise the blood sugar).  This helped, but once I tapered off the steroids, the hearing in my AN side became very bad and the nerve pain was driving me batty.  Since I have had no hearing in my non-AN side for a couple of years (not related to an AN) I went to my primary care physician this Tuesday who actually gave me 4 times the original the dose of the steroids, which had brought my hearing back to, if not at where it was prior to the loss, at least it is useful hearing.  I was able to do 5 treatments a week for 5 weeks, including driving 104 miles round trip each day and not miss a day of work, something I was proud of  , although I was exhausted all the time.  So karma bit my butt with this little adventure!  I go back to work tomorrow and hopefully this episode will go away with the steroids, and I just have to continue with the follow up visits, MRIs, and hearing tests. 

Good luck to you and post back on how you are doing.
Joy

[jfspainter]

Joy thank you for answering.

I have tried 3 times to see or talk to my doctor and I am angry as his secretary guards him like a pit bull. I do plan to mention this to him when I see him on 1/29/13. It's enough trauma having all this stuff going on in your  head plus being partially hard of hearing even before the AN. My goal was to preserve what I had left of my hearing before I started. My hearing has been gone since the middle of December. Gamma Knife was the best choice for me to save it. We shall see.

Joy good luck with work and you are trooper as I had days of great fatigue so know what you must have felt like.

Best, Jane

[sarahinPA]

I feel that I can answer a few of your questions based on my experience. I was told that if I lost hearing after my GK in 2009 to call immediately, this did happen to me and I was prescribed 2 weeks worth of steroids and the hearing came back. it appeared to be a type of infection but resolved itself.

also, I did have regrowth after GK   I had GK in 2009 for a 2.2 cm AN   in December of 2010 I was having sporadic facial paralysis that lasted 30 -60 seconds each time, pushing me to get an not sooner than scheduled, this indicated a slight growth. we rescinded 6 months later in June 2011 and I was set up with a consult to remove the tumor.  this does become o me a more difficult surgery because the radiated tumor is like scar tissue and more difficult to remove layer by layer. I had surgery July 29 2011 at UPMC with Dr Paul Gardner. I did have some com p locations post surgery, including a pulmonary embolism ( blood clotting the lung) pneumonia and paralysis of swallowing muscle.  these along with the regrowth are all extremely rare and my doctors were astounded by the small percentages I fell into. 

my team of doctors at UPMC had performed over 11,000 AN . GK procedure and said I was the 6th person they had seen have regrowth, it's that rare. in young, only 28, and healthy besides this darn tumor.  I came out of surgery and all my crazy side effects being deaf in my right side which doesn't bother me too much except the ringing that tonight is exceptionally loud, my swallowing came back after an 8 day fiasco with a feeding tube. I still have some paralysis in my.throat but it doesn't effect me.at all.


my suggestion to you is to bug the doctors until they answer your questions this is your b health and not calling you back is not very professional

good luck and stay positive!!!!

[PaulW]

Increased AN symptoms seems to be very common about 6 months post GK
Because of the hearing loss you should see a Doc ASAP
My ENT was away on holidays when a similar thing happened to me.
I went straight to emergency and walked out with a prescription for steroids about 2 hours later.
Apparently its important to commence steroids within 48 hours for sudden hearing loss.

I did get my hearing back.

[mk]

Post radiation swelling is very common, especially 6-12 months after treatment. Your symptoms certainly point to this. Swelling does not mean that treatment has failed. The MRI will provide more information, have you received the results from yours? Darkening of the tumor is one sign that you should look for; it is an indication that it has responded to treatment.

It is not uncommon for the doctors to prescribe steroids to relieve the pressure from swelling. It is disappointing that you can't reach your doctor, as you would need them sooner rather than later. It is not clear from your post if you had sudden hearing loss, or if it happened gradually. As Paul pointed out sudden hearing loss can be reversed if steroids are taken ASAP. If this is the case, you should insist on seeing your doctor or an ENT (or go to the ER as a last resort).

Marianna

[mk]

my team of doctors at UPMC had performed over 11,000 AN . GK procedure and said I was the 6th person they had seen have regrowth, it's that rare.

A bit off topic here, but I couldn't help but comment when I read this. In my many years on this forum, I have heard  a few people who were told by UPMC that "they were only the 6th person with regrowth". I don't know where they get their statistics from, but this certainly doesn't sound right - not even when reading their own publications.

[arizonajack]

my team of doctors at UPMC had performed over 11,000 AN . GK procedure and said I was the 6th person they had seen have regrowth, it's that rare.

A bit off topic here, but I couldn't help but comment when I read this. In my many years on this forum, I have heard  a few people who were told by UPMC that "they were only the 6th person with regrowth". I don't know where they get their statistics from, but this certainly doesn't sound right - not even when reading their own publications.

Appropos of your comment, here's a comprehensive article about radiation therapy that includes statistics about regrowth.

http://emedicine.medscape.com/article/857604-overview

[mk]

Right. Let's assume for the sake of argument 98% success (which is high, but still makes the point). So 2% would have failed treatment. Out of 11,000 patients, this would mean 220. Their numbers (6 out of 11,000) means 0.05% failure rate. I don't think there is any study in the world that has demonstrated something like this. And again, the reason that I mention this here is that I have heard it more than once .... makes you wonder.

Marianna

[rupert]

Just a note here that the 11,000 patients treated at UPMC with GK, were not all AN patients. I shouldn't guess, but I believe they are between 1000 and 2000 AN treatments with GK.

[sarahinPA]

I do not know  statistics of UPMC but only what I was told when I was going through my consultations from my team.  I suppose when your doctor speaks to you you believe them.   Dr kondziolka was baffled by my regrowth and took my case to a national conference with his colleagues before calling me the following week with his recommendations because of my age and health and 2 years of positive response to the gamma knife.

this was just my experience.

[PaulW]

I think somebody is getting their stats a little confused....

http://www.ncbi.nlm.nih.gov/pubmed/19783373

In 2009,  1352 people had received Gammaknife for their AN's at UPMC
6 had received REPEAT Gammaknife treatment all of which were successful.

Its probably this paper that has somehow got confused with the total number of GK Patients.

 

[windy]

JF,

It is not uncommon to have swelling early on after your radiation treatment, but steroids is often reccommended, especially with hearing loss. My ENT physician said hearing loss is considered a medical emergency and to try to get the steroids within a 24 hour period, if you suddenly lose hearing. Since you posted last week, I hope you have had some relief by now from all your symptoms. You have already been given some good advice.

In regard to the above comments about the statistics of UPMC for failed treatment, I would have to agree with Marianna and others. Eleven patients would not represent the correct percentages from the information given. I was told last year that 2% of patients have failed GK at UPMC, which would be at least 220 patients our 11000, like Marianna said. Even out of only 2000 patients, that would still be 40 patients. 

[sarahinPA]

Maybe when Dr Kondzolka was discussing statistics, he was refering to those who had GK and then had surgery because of regrowth when he mentioned 6 patients. The consults in which he discussed these statistics with me have become a bit of a blur, as I was 26 years old, being told that my original procedure didnt work, and I was not facing major brain surgery. The informtaion was given to me, but I was of course at that time baffled as to the news I was getting. Maybe I have mispoken about what I thought I heard.

I apologize for mis information. I was told, before even having the GK that there is a 2 percent chance of regrowth, but with my age at the time, and general overall health, my chances were pretty slim, as he thought I would have a full positive revoery. Unfortuantly that was not the case, not to mention the unusual side effects I had after tumor removal in 2011. (throat swelling and not being able to swallow for 8 days, pulminary embolism blot clot, and pnemonia)