Laura Lynn,
I am thinking about you today and wondering how you are doing.
I can’ t help but keep thinking about the ophthalmologist yelling at you incident…
(I once had my Oregon ENT get too worked up when I told him I thought that I should have the translab instead of the retrosygmoid as he thought my tumor may not be an acoustic neuroma being that is was such an odd shape and I had such good hearing. Voices were raised by both parties as we were both pretty passionate about what we thought was right- but we seemed to have gotten through that … nevertheless his follow-up interest for my case has been poor since my surgery proved him wrong)
I guess I see both sides however that does not excuse his unprofessionalism ie yelling. He had it in his mind that you needed an eye weight “surgically implantedâ€. You presented him with the alternate temporary solution, ie the stick on blink-eze eye weight (or am I mistaken) , and he got his nose-out-of-joint as you questioned his expertise (which you should and all doctors should be receptive to hear their patients ideas and not let their egos get in the way) … So when you later walked in with a torn cornea he was frustrated as he feels "if" you had the surgery he recommended this would not have happened. However he needs to understand that the stick-on-eye weight would have prevented this also.
I won’t deny I have had frustrating moments with a few doctors who can be rather a stick-in-the-mud with their ideals -but you will also have to be forgiving if the patient-doctor relationship is to continue in a positive direction (Yet know when you are being mistreated and it is time to find a different practioner). Because you are in Arizona, where it is so arid, you have a higher chance of cornea damage due to the eye drying out (compared to us Oregonians who spend half the year in the rains.)
Your eye weight will make a big difference.
Are your ENT or neurologist offering you lots of follow up care and support? If you have just one good doctor, in the follow up team, than that can make all the difference. My neuroTOlogist/surgeon is in a different state and it took a while until I found one doctor who had the people skills and compassion -here in my locale. In this case it was my ocular-plastics / ophthalmologist. He has always treated me with respect- and that makes it so much easier to endure the other doctors who lack the positive social graces -to which he displays. My own PCP is pretty good as far as compassion goes but he is a generalist and not specifically trained in acoustic neuroma stuff. Fortunately I have found this ocular-plastics / ophthalmologist doctor who is on the same path of thinking as me as far as taking the least evasive approach to treatment (ie the lease amount of surgery we can do: the least amount of Botox we can inject … and wait and see how the nerves regenerate and how I can reeducate my face etc.) My neuromuscular facial retaining therapist is also terrific (but out-of state) and she is paring up with my ocular-plastics / ophthalmologist to start a new clinic here on Oregon. She has given me exercises to help me learn to close the eye (without involving the cheek). Her compassion and understanding has also made a huge difference for me- not just physically but mentally. Have you seen a facial therapist to help with eye closure etc?
Here is a list of therapists.
http://www.bellspalsy.ws/centers.htm If there is not one close to you perhaps contact Jackie Diels and see whom she recommends or has recently graduated from her program that might be closer to you. (Many of us ANA’ers see her as the facial guru)
Jacqueline Diels, OT; Facial Rehabilitation Specialist
Neuromuscular Retraining Clinic
Dept. of Rehabilitation Medicine,
University of Wisconsin Hospital and Clinics, Research Park Clinic,
Madison, Wisconsin
608-263-7271
A physician or therapist always has to keep in mind the balanced equilateral triangle with the equal sides being the body, the mind, and the spirit… as does the patient. Do what you can to keep your spirits up. You have much on your plate with being a single mom and no extended family close by to give you relief- heck knows adding acoustic neuroma complications on top of all that. A support group can offer you the support you need- that you doctor perhaps cannot. I really implore you to go to one of their meetings
Arizona leader contacts (cut & pasted from the ANA webpage
http://www.anausa.org/support_groups_by_state.shtml )
Phoenix
Leader: Mike Simon
480-621-6554mikesimon@1stphoenix.com
Tucson
Leader: Carol Franklin
520-722-8340
g-cfranklin@cox.net
Cyber HUGS to you.
DHM
