Three years post GK. New Symptoms.

[kentcorbin]

I am (almost) three years post gamma knife. I thought everything was going swell. Things seemed really stable for the last two years. Suddenly: new fullness in ear, new tinnitus, new numb tongue, new vague pain in the region of the inner ear. These new symptoms have been going on for about a month. I suppose I cannot any longer pretend I just have a head cold.

I am going to report my symptoms to my doctors of course, and and work on getting an MRI asap. Though that may have to wait a month, until my insurance is back in effect (long story).

I suppost I am here because I am scared. I thought I had made compelling promises to all the relevant dieties after the initial treatment. 

Sudden emergence of new symptoms after this long probably suggest new growth, is my wager. I'd be reassured to hear from any devil's advocates out there.

[notaclone13]

Kent, have you had any MRIs since your radiosurgery, i.e. at 6 months or 1year post GammaKnife?

[kentcorbin]

Yes, one year post looked fine. Basically no change. Or maybe very slightly larger, attributable to swelling. My doctors had no concerns at that time. I have not had one since then though. I was due for one about 7 months ago, and then I lost insurance, and so I thought I might put it off until I was insured again. Thankfully insurance is coming right around the corner, so I will be able to get a new MRI done very soon.

[Patti]

I am 2 1/2 years post Stereotactic Radio Surgery and I have had some disturbing feelings lately, too. Fortunately I have an MRI scheduled for June. Sudden bursts of pain behind the ear and cheekbone.  Last MRI showed no growth, maybe even a little shrinkage, but I always start to get anxious as the date of a new MRI gets closer.  Keep us posted with yours! Good luck!

[kentcorbin]

These changes are maddening, aren't they? The constant worry/vigilance is the downside of SRS, I suppose. Here's hoping your MRI looks good too, Patti!

[notaclone13]

Kent, it’s natural to jump to the worst conclusion when there is a resurgence of previous symptoms or the start of new ones. The info in this new publication, (March 2018) should calm you down a bit. I include the abstract below:

Temporal Dynamics of Pseudoprogression After Gamma Knife Radiosurgery for Vestibular Schwannomas-A Retrospective Volumetric Study.

Breshears JD1, Chang J2, Molinaro AM1,3, Sneed PK4, McDermott MW1, Tward A2, Theodosopoulos PV1.
Author information
Abstract
BACKGROUND:
The optimal observation interval after the radiosurgical treatment of a sporadic vestibular schwannoma, prior to salvage intervention, is unknown.
OBJECTIVE:
To determine an optimal postradiosurgical treatment interval for differentiating between pseudoprogression and true tumor growth by analyzing serial volumetric data.
METHODS:
This single-institution retrospective study included all sporadic vestibular schwannomas treated with Gamma Knife radiosurgery (Eketa AB, Stockholm, Sweden; 12-13 Gy) from 2002 to 2014. Volumetric analysis was performed on all available pre- and posttreatment magnetic resonance imaging scans. Tumors were classified as "stable/decreasing," "transient enlargement", or "persistent growth" after treatment, based on incrementally increasing follow-up durations.
RESULTS:
A total of 118 patients included in the study had a median treatment tumor volume of 0.74 cm3 (interquartile range [IQR] = 0.34-1.77 cm3) and a median follow-up of 4.1 yr (IQR = 2.6-6.0 yr). Transient tumor enlargement was observed in 44% of patients, beginning at a median of 1 yr (IQR = 0.6-1.4 yr) posttreatment, with 90% reaching peak volume within 3.5 yr, posttreatment. Volumetric enlargement resolved at a median of 2.4 yr (IQR 1.9-3.6 yr), with 90% of cases resolved at 6.9 yr. Increasing follow-up revealed that many of the tumors initially enlarging 1 to 3 yr after stereotactic radiosurgery ultimately begin to shrink on longer follow-up (45% by 4 yr, 77% by 6 yr).
CONCLUSION:
Tumor enlargement within ∼3.5 yr of treatment should not be used as a sole criterion for salvage treatment. Patient symptoms and tumor size must be considered, and giving tumors a chance to regress before opting for salvage treatment may be worthwhile.

Basically it says tumor can still be enlarged up to 3.5 years of treatment. In fact, peak volume within 3.5 years post treatment. So you fall into this timeframe of peak enlargement. Good news is, after that it starts shrinking. So do your best not to panic just yet.

[Patti]

Very consoling to read! thanks!

[kentcorbin]

Hey, I must say: that IS reassuring! Thanks very much for posting that. That ought to calm me down a little until I get new MRI results.

[kentcorbin]

A kind forum member just messaged and reminded me to update this post. I’ll copy my update below. Short story: For now, things seem to be stable!

I did just recently get an MRI. It’s kind of a long story, but the gist is that my insurance fumbled my doctor’s MRI order and couldn’t/wouldn’t approve an MRI before the date my insurance was going to expire. Since I was having symptoms, and feeling a little miffed at my insurance, I thought I would try a Hail Mary: I presented myself at my local emergency room, told them my story, that I have a tumor that hasn’t been checked in a while, told them my symptoms, etc. It worked! They ordered an MRI on the spot and my insurance covered it because it was an ER visit. I sent the MRI to my neurosurgeon and awaiting official word from him, but the ER doc was able to compare with an old MRI and said the tumor actually looks slightly smaller! Great news—though he couldn’t say why I’m having increased symptoms. I hope my neuro surgeon will weigh in on that. All in all, pretty encouraging news. I’ll update again when I hear from my neurosurgeon.

Best

Kent

[notaclone13]

Kent, that’s great news. I am also happy to hear your alternate approach worked and you got your much needed MRI. I believe I read on the forum that one can develop symptoms when the tumor is shrinking. As it decreases in size, it can pull on the nerves or something to that affect. Perhaps someone more enlightened than me can comment on this point. Let us know what your neurosurgeon has to say. Thanks for posting the good news.

[Patti]

Please keep us posted! Great going at the ER!!!! BTW - mine was stable. The doctor said my trigeminal nerve will probably always be irritated (thus the occasional pain) and that the pain does not mean tumor growth.  Very reassuring.

[notaclone13]

Kent, Patti, Congratulations to both of you. Hope you both continue on the “no growth” path from here on. We all feel your relief.