Treatment Options > Radiation / Radiosurgery

Dizziness and Balance issues still ongoing after 1 yr out of Gamma Knife

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Gearbox123:
Hi Everyone, it been a while since I had posted anything. I am just under a year out since my Gamma Knife @NYU with Dr Kondziolka. My tumor was very small 7mm x6mm x5mm. My last scan Dec 2017 ago showed more growth 1cm x 7mm x 6mm. Dr said most likely swelling increased the tumor which was common, but tumor had only small black dots inside that looked like penicil marks not really the black circle that everyone mention or that black halo that I had heard about ? Dr also said that tumor moved a few mm, not sure how common that was? He seemed a bit surpise and I think that’s why I am getting another MRI   early May instead of the next year mark. I have had very bad balance issues always and then more dizziness issues along with a good amount of hearing loss after the Gamma Knife .I went to Rusk Institute for balance therapy which was somewhat helpful but not the cure all . I have had some very good days with less dizziness , less headaches , less ear pain , less ear fullness, but then will have some very bad days of dizziness and more tinnitus then I ever have had before that can be maddening. I have nothing but good things to say about the Dr and NYU team but he did mention that if I was looking for a cure for the balance problems that there was a good chance that was not going to happen. My E.N.T told me that data had improved with Radiation and the smaller tumors so I took my chance. I feel like between a rock and hard place because at the time W&W and Radiation were my only options and wanted to be proactive. I am looking for any feed back or similiar experiences. I always have had some very positive responses to my posts. Thanks for any feed back in advance and sorry for the long post. All the best!

Echo:
Hang in there it does get better!!!

I had GK in Sept. 2013 for a 2.4cm tumor.  By Dec. my balance started to go really off and it pretty much stayed off for next 1 1/2 years.  I couldn't walk a straight line, especially at night.  Some days were worse than others. I did vestibular therapy which helped a bit, but honestly it didn't do nearly what I had hoped it would.  After the 1 1/2 year point, I started having more good than bad days.  By my 4th year post GK, I had the best year ever - almost all of my post treatment symptoms are gone.  I still wobble the odd time, but my balance has improved immensely and I can walk my dog a night comfortably. 

I was told swelling could be expected up to 24 months post treatment and it could take that long or longer before necrosis could be seen.  If you are still less than a year out from treatment, my advice is to hang in there and keep positive.  You really are in the early stages of recovery.  Document the things that happen to you and do follow up with your medical team.  GK is not a quick fix, and we all respond differently.   Try and be patient with yourself, you've been through a lot and your body needs time to adjust and recover.

Cathie

Gearbox123:
Thanks for the positive words, I will continue to keep a optimistic outcome, I know I came to the right place , God bless and be well.

notaclone13:
Hi Gearbox,
I posted this abstract on a different tread, but will repost here:

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.

These authors found that many tumors enlarge from 1 to 3.5 years post GammaKnife, and then they start shrinking. So you are still in the timeframe where the tumor is still swelling  and this might be the cause of your increased dizziness. It’s a miserable feeling, and I am so sorry you have this problem. But, hopefully it will start to shrink soon and you will get some relief.

Gearbox123:
Thanks for the post and the very interesting info. All the best!

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