ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: MaryCPereira on September 20, 2012, 12:29:21 pm
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After becoming increasingly frustrated with my first AN doctor, I decided to seek a second opinion. I live in NH and was going to Mass Eye and Ear (one of the best, I know...), and went for a second opinion at DHMC in Hanover, NH. I saw Dr. Saunders as well as an APRN from neurosurgery. I felt much more comfortable and free to advocate for myself. The other doctor I felt so stupid around, and felt as though he didn't believe a word I was saying.
Dr. Saunders really listened to everything, and set me up with two new referals. He mostly agreed with the doctor in Boston, but he took the time to explain the whys and wheres and whats, etc. He had a pad of paper with the inner ear on them, and he drew out where my tumor is and explained the different options and how they relate to my tumor specifically. He explaned why it's best now to W&W, and what would happen with surgery now vs later. I felt so much more comfortable with him that I am going to go to see him full time now, and I'm not going to go to Boston anymore.
Also - as for the whole "dyslexia" issue that I've been having - Dr. Saunders thinks it might be migraine related, and is going to set me up with neurology and neuropsych to see what's going on. But, I didn't have to ASK for referrals...he and the nurse discussed it and thought of where I could go for the best help, and set it all up. I am so happy right now. Also, he wants me to go to physical therapy for vestibular/balance issues....Has anyone else done this? And has it been helpful?
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Mary,
I am so happy that you found a doctor you are happy with. I am new on this forum, have been trying to login for a few weeks, but that's a different story. What I wanted to contribute is that you do need to become your own best advocate and expert on this. I went into denial for a period of time which I didn't realize I didn't have the time for. In my situation, I was diagnosed two years ago, I chose wait and see and did not follow up for 12 months. The AN was small, 7mm, however grew almost twice its size to 13mm. The realization that I needed to act snapped me into action finally. Long story short, I decided for translab and went through the process of due diligence on radiology and second opinions to confirm my decision. Though I am a highly anxious person, the process of taking charge and thoroughly researching all possibilities, in addition to speaking to patients who underwent all treatment types, gave me a great sense of peace about what needed to be done in my case. I had translab one week ago today. Recovery should be 4 to 6 weeks according to my dr (they have been wonderful) and so far doing relatively well. I apparently already had adapted to loss of balance and hearing on the right side. I prepared myself for this as best I could and called on my friends and family to be my prayer warriors. I am extremely grateful and hope there is some benefit to my experience to you or anyone who reads this forum. Just want to encourage you to get your MRI on disc so you can seek the opinions you need on all the treatments for your situation. Adding you to my prayer list.
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Hi Mary - so glad you found a doc and hospital you feel comfortable with. We have been going to Boston and the drive back and forth from Cape Cod is tiring and difficult for me as my husband isn't driving. We were able to have his radiation (for a meningioma regrowth) done locally and actually recommended and referred by the Boston doctors here. I've been telling people that an 8 mile ride sure beats an 80 mile, one-way trip.
As to the vestibular therapy - he had it done about a year ago and it helped tremendously. You do have to find a therapist specially trained and knowing what they are doing PLUS you tend to feel worse before you feel better.
I have been a W&W patient for 11 years for a 9th cranial nerve schwannoma - like an AN but on a different nerve. It has only changed about 4 mm in that amount of time with no discernible symptoms. I still see a doctor once a year at the Brigham for an MRI and exam but may switch to a local M.D.
Good luck,
Keep us posted,
Sheryl
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It's wonderful to hear you have found a doctor who is a much better fit for you. Hooray! Prayers coming your way.
Karen