Hi ANderson,
The just-diagnosed-and-figuring-out-a-path-forward part is the worst portion of this whole AN ride. I am sorry you are having to deal with all of this. You will be ok!
We have a similar sized AN, so I thought I’d share:
1. In my case, the doctors with whom I met told me my options were either radiosurgery or microsurgery. Several leaned toward and encouraged me to have surgery. I chose radiation. When you have a choice, deciding what to do is a real exercise in soul-searching and fact gathering. So, to answer your question, to determine what your choices are, consider consulting with more than one doctor. Include a doctor who specializes in CyberKnife, Gamma Knife, or Proton. Ask every doctor (regardless of specialty) with whom you meet why they recommend a specific treatment over others in your specific case. Evaluate the data as impersonally as possible, and evaluate what choice seems to sit well with your heart and mind to determine what seems the best choice for you.
2. It is my understanding that depending on the type of surgery (which is determined by AN size, I believe) , the odds of hearing preservation can be none or decent. I believe that no matter what treatment, (radiosurgery or microsurgery) the hearing continues to be affected. Surgery because things can get cut or damaged, radiosurgery because mass's continued pressure on the hearing nerve. Dr. Chang, who is one of my doctors at Stanford, told me he likes to use the following analogy with regards to the AN’s affect on hearing: Imagine an elephant leaning on a thin rope. It might hold for a while, but eventually it will fray and even give. The elephant does not have to get bigger - just the pressure of the elephant leaning causes this to happen. To what degree and how long it takes is a mystery.
3. I can’t speak to this one personally, but I have read many times, and was told by the doctors with whom I consulted on for surgery that vomiting often takes place in the time directly after surgery. I believe this has more to do with the body’s response to the anesthesia, pain medicine and shock to the body (any surgery, big or small is a surprise to the body!). The dizziness and vomiting after that 24 hour period seems to vary with the individual. Again, I did not have surgery, so feedback from some one who has is better!
4. I don't know the figures, but I can say that you might not need a second surgery. From what I’ve read, the piece they leave behind sometimes does nothing. If it does grow, often a second surgery is not the only option at that time - you’ll read about many patients here who elected to have radiosurgery.
5. I make sure I get enough sleep and exercise, as well as try to minimize stress. Whether this helps the actual AN or simply helps my overall health I can’t say! I can tell you that directly after diagnosis my symptoms spiked due to stress and, consequently, loss of sleep. When I settled down, things got better.
6. I have not had a fatigue problem that I can attribute to the AN. However, there are folks here who do experience issues.
7. I don’t know the answer to this one, but I can say at 43 I forget things sometimes too! Like where I left my keys or phone. But in my case, that’s a normal part of life for a woman my age, and its incidence is not consistent. Sometimes I totally remember all the things, sometimes I don’t. I had more incidence of this sort of thing at and directly following diagnosis - but I had a lot on my mind and was distracted. However, there are folks here who do experience issues.
8. At diagnosis, I was so stressed, upset, and preoccupied with the shock of it all that for many weeks I was forgetful, inattentive, and dull. In my case, the AN did not cause that in a physical way - just that it was looming in my consciousness so much that it was taking up all my bandwidth. As time passed and I chose my path forward, all of that eased and things are back to normal
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All in all, know that you will be ok in the end. This part absolutely sucks. When diagnosed, as I wept on the couch and clung to my husband, I remember telling myself, “This time next year it will be better and this time will be behind me. I will be riding, writing, walking my dogs, and enjoying my life.” And I was right. Last year on February 15, I received confirmation of my AN. Now, I am post CK (CyberKnife) and things thus far are fine…I am doing all the things I promised myself I would. Things certainly quickly got better than they were that horrible day and time following diagnosis. And they will for you, too.
Warmly,
Jessica
