Author Topic: Failed Cyber Knife Radiation followed by Retrosigmoid Surgery  (Read 1767 times)

pateln6

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I am a 38 year old male. I developed sudden onset dizziness in February 2018. MRI of brain was obtained and I was diagnosed with right sided Acoustic Neuroma , less than 2cm approx. I had right sided hearing loss as well found on hearing test but it was gradual so I was not aware of it.

After looking into Surgery vs Radiation option, we picked Cyber Knife Radiation option. Cyber Knife treatment was seamless, no impact to my routine life. Since radiation treatment effects are delayed, I had continuous dizziness episodes thought out the day for 1 year, some days were bad and some were manageable. There was no pattern or triggers for my dizziness, sometimes even while sitting dizziness would recur. With physical activity or sudden movements dizziness was worse.

Dizziness was impacting my daily life. Even while having normal conversation with someone, I would experience dizziness and my thought would get disrupted. I had to focus and regather myself and continue my activity. Due to constant dizziness throughout the day, my mind was exhausted by evening and I just felt like laying down and sleeping.

I tried Klonopin (clonazepam) and other medications for dizziness but nothing worked. Then I was introduced to Medical Marijuana (MM) which is my miracle drug. It was a trial and error process, took me some time to try different variations and combinations (CBD, THC contents) of Medical Marijuana to find right fit for me. Finally 1:1 ratio equal CBD:THC drops worked for me. I would take the drops in the morning before work, dizziness was still present but with the effects of MM, intensity of dizziness was much less and I was able to perform my daily activities normally. With the help of MM, I was able to reach a point where dizziness didn’t bother me in my routine activities. I was able to restart my daily exercise routine including high intensity interval workouts, running, hiking etc with MM on board! Even at work my performance was exceptional with MM, when THC content was appropriate (lower). Above all, MM helped with my mental health. Dealing with AN is a life changing journey for all with ups and downs but I was able to manage it all with the help of MM, my mood and energy was uplifted which allowed me to live my normal life and avoid depression.

Moving on to next phase of my AN journey. Periodically MRIs were performed to keep check on my tumor size, but instead of shrinking after radiation treatment, AN tumor size progressively increased. In May 2021 my follow up MRI revealed further enlargement of AN. At that point, I consulted neurosurgeons at Johns Hopkins (Baltimore), Jefferson Neurosciences (Philadelphia), and Penn Neurosurgery. All 3 neurosurgeons concluded that my radiation treatment failed and surgery was the next step. I was told that due to my tumor being radiated previously, I had a much higher risk of facial nerve damage and other complications from surgical removal of tumor. Apparently, radiation failure of AN is very rare so finding a surgeon who has experience in operating of a radiated AN was very difficult.

After consulting multiple institutions/hospitals, we found our right choice, Dr James Evans (neurosurgery) & Dr Thomas Willcox (ENT) at Jefferson Neurosciences in Philadelphia. This team has been working together for 20 years and the have good experience with AN removal surgery. Both have great bedside manners, they answered all my queries (and my wife's extensive questions!) and explained the different approaches of AN surgery as well as its risks in detail. They discussed with me restrosigmoid (RS) and translabyrinthine (TS) surgical approach. I chose to proceed with RS approach. I was warned that there is high risk my hearing would be completely gone in right ear with both approaches. Surgery was performed on September 13, 2021. The surgeons' execution during surgery was spotless and AN tumor was 100% removed through retrosigmoid craniotomy. Surgery took 10 hours, it was concluded as a success with no damage to my facial nerve or other complications. As expected, I lost complete hearing in my right ear due to the surgery.

Post-Surgical Headaches:
After the surgery, my balance was fine, my face was fine, my dizziness was GONE for the first time after 3+ years. However, as soon as I completed my steroid taper after coming home from hospital, I developed headaches which I have never experienced before. I have no history of prior headaches or migraines. These headaches were triggered by movement, walking, sudden movement, getting up from sitting or lying position. Headaches were very severe, it mentally paralyzed me, I had to restrict my movement to avoid headache. It was much worse in the evening, I was out of commission after 5 PM, even slight movement triggered unbearable headaches. Sitting position and laying down were the only times I would not have a headache. As soon as I get on my feet, headaches would come back. I was on Tylenol 1000 mg and Ibuprofen 400 mg daily for 2 months post-surgery for these headaches. After 2 months doctors recommend to get off painkillers to avoid side effects and rebound headache from overuse of these medications. Over the period headache intensity was going down, plus my headache tolerance improved, but without any pain medication it was impossible for me to make any movement.

Once again Medical Marijuana was at my rescue in managing my now chronic headaches. With MM, my headaches does not completely go away but it numbs down pain so I can be functional in day to day activities plus gives me a mental health boost to live my life normally and stay happy. In addition, daily Mindfulness Meditation has also helped me build tolerance towards headache pain, kept my mind calm/positive and practice patience.

Post-Surgery during recovery most important thing we need is PATIENCE, time is the ultimate healer. I wanted to get up and run but it took time for me to accept my current physical capability, give healing time to my body and be patient. Every passing day my headache was better, was able to do majority of activities without being interfered by pain.  Currently, I am 5 months post-surgery, I am back at work and able to exercise daily, same regimen as before (with manageable headaches). Hoping in few more months I will be completely headache free.

Based on my experience, I don’t regret choosing CyberKnife radiation treatment over surgery as the initial treatment. It's just unlucky that radiation treatment did not work for me because surgery has its own challenges during recovery period. Surgery option for AN is a life saver too, just need strong will and patience to get through it.

I wanted to share my experience for chronic dizziness & headache management as there are not a lot of options out there and many of the medications that the doctors prescribe have a number of side effects. I firmly believe that medical cannabis should be incorporated into management of these chronic symptoms. It is a safe and effective way to manage chronic symptoms which would otherwise have me disabled and not able to live my life for the past 4 years. My neurologist was very comfortable and confident in endorsing medical cannabis as a treatment for me. If you are experiencing chronic symptoms, I highly recommend finding a provider who can endorse medical cannabis for you. You will not regret it!

ANA forum was a great source of information during my AN journey, finding answers for symptom management, which surgery approach to choose etc. Hope the experience I have shared will help others.

Good Luck and be positive.

Thank you

Ehle, Dave

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Re: Failed Cyber Knife Radiation followed by Retrosigmoid Surgery
« Reply #1 on: March 04, 2022, 11:31:35 pm »
Thank you for this post and congratulations on the successfulness of your treatment! 

I started trying CBD a couple weeks back, and haven't found it helpful.  I have pretty bad effects from THC so I have not done the MM route.  How do you balance out the mind altering effects?  is the 1:1 ratio still the most effective for you?
Dave
Left side 24x23x21
"its pretty small, we should just watch it for a couple years" said the neurosurgeon.

donjehle

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Re: Failed Cyber Knife Radiation followed by Retrosigmoid Surgery
« Reply #2 on: March 05, 2022, 04:25:22 pm »
Thank you, patein6, for sharing your story.  As you already know, when people share their AN experience, whether good or bad or a combination of both, it helps the rest of us in the AN Community.  Some will also gain benefit from medical marijuana, and others (like Dave) won't.  But the great thing is that we are able to share our experiences with each other.  It encourages me heart that your tumor was 100% removed with no damage to your facial nerve.  And I am inspired by your courage as you have moved from hardly being able to function to the point you are right now with managing your headaches somewhat.

Again, thank you for sharing your story, and best wishes on your continued recovery!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

 


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