Does anyone have trouble with balance, memory, things that can be attributed to “stress” when we know it isnt? Does anyone here have trouble getting doctors to believe them because what we have is inside and cannot be seen on the outside so much? I have been going to a neuro-psych and he gave me that long test for evaluation. I passed most of the test so now everyone thinks my problems for the most part is stress related. I will give them some of it but not all of it. I am having problems with my eye as a result from my brain surgery and my brain surgeon sent me to Bascom-Palmer Eye Institute in FL which thankfully has a branch in Naples FL so it was only a 35 minute drive instead of a 3-4 hour drive. The neuro-opthomologist had never heard of AVM, had no idea what a “sling” was (I had resection surgery in 2002 and my rt eye is held in place with the sling as I have no bone there), but was all willing to give his opinions however was not the least bit interested in hearing me out nor getting in contact with my surgeon to hear what he did and how to fix it. I cant afford to go to NYC every time I need to see a doctor but I run into a brick wall every time I see anyone down here because they have no idea how to treat me but they sure are going to try. I am getting so depressed with nobody believing me when I know what I feel and how I am. I feel alone most of the time because my family has to weigh what a professional says and then what I say. I know they love me and believe in me but I also know its got to be hard when I keep saying I have trouble in areas and a test and a Dr says, “no you dont, its stress”. I would GLADLY give my head to anyone for the day. Then we will see. Walk a day in MY shoes then we will talk. Is there anyone out there that experiences these feelings and problems?
Beth Jeffries
■■■■■■■■■■■■■■■
Hello Beth . I am so sorry for your troubles , worries and woes .
I am confused that a Neuro-Op was unaware of what a sling was ( but I am not stunned by that ) and Bascom Palmer has a great rep ( to my knowledge ) but , it is impossible to explain to someone ( including physicians ) the intricasies and affects of what they are unfamiliar with . I understand it can be beyond frustrating and disheartening , yet you can not stop trying to find the help you need .
You are so very worthy of your efforts and of the best efforts of those who canassist you . There is a physician that is suited to your case you simply have not found her or him yet . You will have to remain the strong , determined and courageous person you are and use those traits to foster the desire that physicians typically possess to find the answers . You know you better than any one and you know you can do this work of finding the correct physician for your case even though it is a frustrating , lonely and disheartening road at tomes , it is your journey and you must be the lead trekker . You will find the mind and means …and you might want to inform those who loosely utilize the catch all "stress " ( which is real and taxing in every regard ) that they are now a part of the stress in your life .
Beth remember to be good to you . Take care of you . You are important in this world .
Hi Beth. The only thing I would recommend is to look for a hospital/physician that is affiliated with a university. Often times they are on the cutting-edge as far as knowledge and treatments. I sometimes have problems with balance (brainstem avm), especially if I’m moving from one level to another like steps, escalators, ramps or anytime I’m looking from one level to another like standing on a balcony. Noone has ever attributed it to stress, thankfully. I really don’t let myself get stressed, though. Take care.