Author Topic: 4.5 Months Post Gamma Knife and Anxious  (Read 164 times)

saratrehan

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4.5 Months Post Gamma Knife and Anxious
« on: June 18, 2020, 02:00:58 pm »
Hello everyone,

This is my first post, though I have found the information on this site to be invaluable. Quick background - I was diagnosed with a 3cm tumor in May 2018 at the age of 33 (when i was 36 weeks pregnant). I had surgical resection 5 weeks post partum with Dr. Michael Sisti at Columbia in NYC. He was able to remove 95% of the tumor by volume at the time, and aside from some post-op issues with major allergic reactions, the recovery was fine. I lost hearing fully in my right ear, have very bad dry eye, but I experienced no facial paralysis, and was walking on my own 10 days post surgery. My 6 month and 12 month followup scans showed stable tumor size and nothing noteworthy (at 12 months my tumor measured 17x14x14 and was 1.6cubic cm). At 18 months, my doctor ordered an off schedule MRI because I had been complaining of increased facial numbness (the first symptom I presented with) and increased gritty dry eye feelings. The MRI revealed that my tumor had rapidly regrown and was now measuring 21x24x17 and had doubled in volume from my previous MRI (4.1 cubic cm), obviously causing concern and needed to be acted upon. My doctor thought Gamma knife was the better way to proceed vs a second surgery ( I assume this was to better protect my facial nerve) and so I went ahead with the procedure on January 29, 2020. 2 weeks post the procedure I developed very bad side effects --extreme fatigue, headaches, light headedness, dizzyness, numbness radiating to my extremities and I was put on an aggressive 10day course of Decadron which helped the symptoms. I started working from home (1 month before shelter in place took effect) and rested as much as I could. March and April were therefore pretty uneventful symptom wise, and I was able to resume life as best as I could - walking every day with my husband and resting as much as I can (with a 2year old!). The fatigue has been incredibly overwhelming I have found. Fatigue that isnt really cured by rest, but I have tried to "power through."  At exactly the 4 month mark, i began developing facial twitches, most cumbersome around my eye. It is incredible frustrating especially when it attacks my upper lid. The lower lid, cheek, mouth is more mild and manageable. These have been going on for 3 weeks now, and I am very frustrated, and I dont know how long I should try and bear these symptoms before pursuing other alternatives (botox etc). My doctor put me on 2 rounds of Medrol dose packs which I have completed, and they seem to have done little to help mitigate the twitch. I also take 600mg Gabapentin a day, and to deal with my insane anxiety ahead of my upcoming scan I take a very low dose 0.25mg of Xanax as needed. My scan is in exactly 6 weeks and I am so nervous.   I am petrified of radiation not working, though I know it has an 85-90% chance of success, and I have read many success stories on this forum, even with the bigger tumors like mine --> 2.5cm.  Any words of encouragement or tips on how to cope with the stress of the upcoming scan and my increased symptoms  would be greatly appreciated!

Many thanks,
Sara
DX May 2018 - 29x24x27
RS Surgery - DR. Sisti NY Presbyterian July 2018. 95% Removal. SSD, Tinnitus, Facial Numbness, Severe Dry Eye
June 2019 - Stable 17x14x14
Dec 2019 - Rapid Regrowth - 21x25x17
January 29 2020 - GK NY Presbyterian Dr. Sisti & Dr. Wang

CHD63

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Re: 4.5 Months Post Gamma Knife and Anxious
« Reply #1 on: June 18, 2020, 02:35:09 pm »
Hi Sara and welcome to this forum .....

It sounds like you have been through the proverbial "wringer" on your AN journey!

I did not have a pregnancy related to my AN, but I did have regrowth following the first surgery.  My situation was different, in that I opted for a second surgery.

As I was reading your story, I was first of all glad you have an excellent doctor with Dr. Sisti.  Secondly, keep in mind that it is not unusual for tumors to swell following radiation treatment, causing additional scary symptoms.  Hopefully the steroids will do their job and calm things down.

Many thoughts and prayers and keep us posted on what your scan shows.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

saratrehan

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Re: 4.5 Months Post Gamma Knife and Anxious
« Reply #2 on: June 18, 2020, 03:09:57 pm »
Hi Clarice,

Indeed I have been through the wringer! Unfortunately, I keep falling into those "rarer and rarer" buckets it seems! in the middle of all this , last August 2019, my mother passed away at 65 yrs old after battling endometrial cancer for 1.5yrs. Stress levels have obviously been at peak levels for me these past few years , and even though dr. Sisti says stress has no correlation to tumor growth, I cant help but wonder.... I will surely keep the thread posted on my scan results July 30th. Till then, i will continue to pray and lean on this forum for good thoughts and advice.

Very best,
Sara
DX May 2018 - 29x24x27
RS Surgery - DR. Sisti NY Presbyterian July 2018. 95% Removal. SSD, Tinnitus, Facial Numbness, Severe Dry Eye
June 2019 - Stable 17x14x14
Dec 2019 - Rapid Regrowth - 21x25x17
January 29 2020 - GK NY Presbyterian Dr. Sisti & Dr. Wang

SP

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Re: 4.5 Months Post Gamma Knife and Anxious
« Reply #3 on: June 18, 2020, 11:25:45 pm »
Hi Sara,

You have certainly had a tumultuous ride. You have had a lot to deal with and I wish you the very best outcomes with your GK treatment.

The lead up to scan day & dealing with AN symptoms, can induce much stress and anxiety. For me, increased stress, lack of sleep etc... exacerbated symptoms like tinnitus and facial twitching.  I think it's important to recognise this and do what we can to reduce stress and increase rest, peace, and calm (easier said than done, I know). Walking outdoors, a warm bath, funny movies, meditation, deep breathing exercises.... choose whatever you are up for, as self-care for you.

(Although all our AN journeys are different, five years ago, I had CK on a large tumor (>3.0cm) and I just had my latest MRI last month, it's been a ride but, things are stable and I'm doing well.)

sending you positive vibes for a speedy and healthy recovery,

Stella
2.9 x 2.9 x 2.5cm Left AN (May 2020) @5yrs
2.9 cm (Mar 2019) @4yrs
2.9 cm (Aug 2018) @3yrs
3.1 cm (Aug 2017) @2yrs
3.2 cm (Aug 2016) @1yr
3.2 x 3.0 x 2.5cm Left AN (Aug 2015) ===> CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

saratrehan

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Re: 4.5 Months Post Gamma Knife and Anxious
« Reply #4 on: June 19, 2020, 06:08:38 am »
Thank you, Stella.

I did read your whole story and was comforted by it, and hope that things continue to remain stable on the tumor and eye front.

I have been trying to divert my attentions elsewhere - my son, long walks, etc etc but it's just so hard, especially when the symptoms seem to have increased and are always there. Constant reminder , and as such , constant anxiety.

Hopefully the 6 month MRI will have good results, or at the very least shed some clarity on what's transpiring.

I will keep everyone posted.

Many thanks,
Sara
DX May 2018 - 29x24x27
RS Surgery - DR. Sisti NY Presbyterian July 2018. 95% Removal. SSD, Tinnitus, Facial Numbness, Severe Dry Eye
June 2019 - Stable 17x14x14
Dec 2019 - Rapid Regrowth - 21x25x17
January 29 2020 - GK NY Presbyterian Dr. Sisti & Dr. Wang

SP

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Re: 4.5 Months Post Gamma Knife and Anxious
« Reply #5 on: June 19, 2020, 06:19:05 pm »
Hi Sara,

This is a truly stressful time, I hope for relief of symptoms to come to you very soon.
my best,
Stella
2.9 x 2.9 x 2.5cm Left AN (May 2020) @5yrs
2.9 cm (Mar 2019) @4yrs
2.9 cm (Aug 2018) @3yrs
3.1 cm (Aug 2017) @2yrs
3.2 cm (Aug 2016) @1yr
3.2 x 3.0 x 2.5cm Left AN (Aug 2015) ===> CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

saratrehan

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Re: 4.5 Months Post Gamma Knife and Anxious
« Reply #6 on: June 28, 2020, 09:20:41 am »
Hello all,

Today marks 5 months post GKRS. The facial twitch i had which started at 4 months has subsided. Think its a combo of time, plus i am now on a new regimen of ativan (.5mg) 2x daily and lexapro (5mg at night). I have stopped the gabapentin for now. Unsure if the meds desensitize me, or make me less acutely aware if every feeling, but twitch is definitively better and numbness is more manageable as well. Unfortunately, i have begun to notice some very mild facial weakness. Nothing noticeable by an untrained eye , but i obsessively take selfies and have noticed it. Nothing substantial enough for steroids but I will monitor. Eye seems fine for now and mostly concentrated to a slightly asymmetrical smile. But again nothing noticeable unless u stare. Hopefully stays that way, and gets better over time. Unclear if this is radiation hitting the nerve or tumor swelling. July 30th is D-day. Please keep a good thought! Very anxious
DX May 2018 - 29x24x27
RS Surgery - DR. Sisti NY Presbyterian July 2018. 95% Removal. SSD, Tinnitus, Facial Numbness, Severe Dry Eye
June 2019 - Stable 17x14x14
Dec 2019 - Rapid Regrowth - 21x25x17
January 29 2020 - GK NY Presbyterian Dr. Sisti & Dr. Wang

 


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