Author Topic: My AN Experience  (Read 1005 times)

cemtennis

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My AN Experience
« on: August 31, 2018, 10:20:55 am »
In 2014, I recognized I had deficient hearing in my left ear.

In early 2015, I met with the local ENT practice, who told me it was nothing to be concerned about but "come back in 6 months." I did not return.

In early 2017, I went out of my local community, to be seen by an ENT, whom had their on staff PHD Audiologist who ran several types of hearing tests. The results pointed to a strong possibility of an AN and an MRI brain scan confirmed its existence.  The ENT explained I had three choices: wait and watch, radiation treatment or surgery to remove tumor.  Due to my age and knowledge of the seriousness of the surgery, I chose radiation and he referred me to a Radiation oncologist in the area. However, this physician and his practice did not treat AN.  He, in turn, referred me to a Radiation oncologist connected with UofF hospital, in Gainesville, Fl.    I met with him and he urged me to consider SRS, ASAP.
Not that anxious to jump into having radiation, a knowledgeable family member suggested I see an Otolarynologist.  I met with Dr. Antonelli  (UofF Health) and he strongly suggested, I wait a year, then do another MRI and evaluate growth of the tumor.
 
Early 2018, after having another MRI, I met again, with Dr. Antonelli , who reviewed and confirmed the tumor growth was significant and recommended SRS.  He also pointed out that my sense of balance was off and that it could be attributed to AN condition.  To improve balance, he recommended learning Tai Chi.  For treatment, he referred me to Dr. Wm Friedman, Neuro-Surgeon at UofF Neurological Hospital Center.  I met with him, he confirmed that my AN could be treated with SRS and his staff made arrangements for pre-op and treatment.
The UofF SRS- Linac treatment team consisted of Dr Amdur, radiation oncologist, Dr. Bova, developer of the system and radiation physicist, staff of dosimetic and computer programmers and an excellent support nurse and her assistant.  The procedure consisted of: meeting with other patients with Dr. Bova who explained what to expect and answered questions. Next, a CT scan and a head holding devise was put in place. Family /friend were allowed to keep you company in the holding room.  For the treatment itself, the patient lay on a table and the head gear is positioned and secured to the treatment table.  The radiation is delivered thru machines that rotate around the head.  Dr. Bova was there and talked with me in between each sequence dose.  Total time was about 40 minutes.
Next, the head stabilizer was removed and contact points treated.  Returned to holding room, for a few minutes to get my bearings and I was released to family care.  After effects:  slight headache for remainder of the day and the puncture spots were a minor annoyance.

Next step is a follow up MRI in 12 months.
__________________
From the beginning, I felt I suffered a great deal of anxiety regarding my AN diagnosis, in part, because those I sought information from early on, really had little or no knowledge of the condition.   I found the physicians that saw me, who were AN knowledgeable were able to answer the questions I could remember at that moment, but later, it was a challenge to get past office staff on the phone for additional questions to be answered.
None of the physicians/hearing professionals/ office staff, I met with provided me with any written information on what and why I had an AN or what to possibly expect with it’s growth or treatments or their possible after effects and outcomes.  I found the ANA and information on the internet. I felt fortunate that I have computer access.  I thought of others who do not have access or skills to research on the net.

It was very helpful to find ANA, for information and, most important, it gave me a chance to link to one other person who had SRS-Linac at UofF Health.  Up until I found his entries, I was in fear for my life. 
His entry told me what to expect.   He described the pluses and minuses he experienced honestly.  This let me begin to let go of my anxiety, which made me a better patient and a far more relaxed person.  I am so very grateful.

I hope my experience relayed here, will be helpful to someone else.

I am 2 days post treatment.  I feel a little wobbly and fatigued, but overall good.  Time to get up and get moving.  Plan to return to Tai Chi next week.


Director

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Re: My AN Experience
« Reply #1 on: August 31, 2018, 11:15:57 am »
Cemtennis,
  Thank you for sharing your story- please let us at ANA know if there is anything we can do for you. Best of luck for continued recovery!
Allison
Director@ANAUSA.org

Patti

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Re: My AN Experience
« Reply #2 on: September 01, 2018, 11:55:59 am »
Good read!  You may or may not have some bumps along the road for the next few years, but learn from my mistake-strange or painful feelings do not mean the tumor is growing!!!!!  Do not let yourself fall into a pit of anxiety when you feel something (like I did). My local neurologist eased my mind by telling me that the stabbing pain I occasionally get is trigeminal neuralgia from a damaged nerve.  She said the pain does not mean the tumor is growing.  My MRIs all showed the same thing. The tumor has stopped growing and it has been three years since my SRS.  Good luck!
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

notaclone13

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Re: My AN Experience
« Reply #3 on: September 03, 2018, 07:11:27 am »
Cemtennis, thanks so much for posting this. Many of the major academic medical centers use the Linac system and I was wondering how it works compared to Cyberknife. Happy to hear the process went well for you. Please continue to post your progress as we all learn and benefit from each other’s experiences. Would you mind sharing with us the size of your AN when you decided upon treatment?
« Last Edit: September 04, 2018, 12:09:15 pm by notaclone13 »

juliawilson

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Re: My AN Experience
« Reply #4 on: September 04, 2018, 11:24:03 am »
Cemtennis, thank for sharing your experience. You made one point that really hit home with me: the fact that doctors didn't give you any written information when you were diagnosed. I had the same experience and, like you, was thankful I was good at searching the internet for information--and that we both found ANA! Lack of information not only causes increased fear, but it also can lead to ill-informed decisions.

cemtennis

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Re: My AN Experience
« Reply #5 on: September 15, 2018, 04:32:02 pm »
To answer your question(s):  My AN tumor in 2017 measured 0.8 x 1.6 x 0.6 cm.  12 months later, it measured .09 x 2 x 1.1.

A medium AN tumor size is described as 1.0 x - 2.5 cm.   Size, quickness of growth and the location of tumor which showed it growing towards toward brain mater, were all considerations in my physicians recommendation for STRS to be preformed ASAP.

Hope this information is of help.