I've been thinking lately about things that may relate to what led up to my finding out about having this cavernoma. I'm not sure if they have anything to do with it and I know everyone has different experiences but I'd like to ask if anyone has ever had any of these things happen that could relate to a cavernoma. For years I would go to the doctor and complain about ear pain, kind of like an ear infection pain but they would just dismiss it and say there was nothing wrong with me. Another thing I've noticed since my hemorrhage is that my eye sight has gotten worse and I stutter/stammer a lot. I also have been getting terrible heart burn which I never had before, although maybe that could be coming as a side effect from medications. Also I've always had really bad headaches ever since I can remember, another thing doctors would dismiss as well as dizzy spells I would get causing balance problems. It kind of bothers me that I would go to the doctor for help and would always be dismissed and once or twice been called a hypochondriac. I'm not one to go to the doctor all the time for things unless I really feel that something isn't right. I try to be strong and just get through the pains and what not through life on my own. Plus I've never been too fond of doctors in general anyway. If anyone can tell me if you've been through any of this I would appreciate it a lot, or even symptoms you had. Thank you so much. Peace and hugs :)
Your experience is unfortunately all too common for the majority of 'us.' And no, you're not alone!
I've experienced the same, especially among neurologists who often downplay or ignore what may or may not be CM-related issues.
Going to expert neurosurgeons & being my own advocate has saved my life.
In time, I hope more HCP's will become more knowledgeable in CMs & AVMs. Until then, it's essential to learn as much as possible about our disorder & be our own advocates.
wow the ear pain, definitely. That is all it all started for me. I even wrote about this in my blog not too long ago because people were asking me how it all started!!
I also know of how painful and frustrating it is to be dismissed. In February, I had my worse bleed yet and I was told by local neuros , that do not know anything about cavernous malformation, that my symptoms were not related, that it was anxiety, because if it was bleeding, I would be dead... I know how hard it is!!! You are not alone. My story is a bit complex and its hard for me to make sense of it in a quick conversation.. but here is a blog post I wrote about it. My cavernoma was in my brainstem.((hugs))
Thank you Blue Reef! This AVM dis-ease is frustrating. With nerve pain now slowly getting worse I only call a doctor's appointment if really bad (throat, kidney, all lymph nodes). Other wise, I stay home and I'm my own nurse. Money through to doctors is done. I amazingly qualified for Disability income 8 years ago for back pain with 12 doctors that did not diagnoses any problems with my body. It took a stroke and hemorrhage for doctors (any kind) to give it a name.
We are all on different medications. Here's my list that helps me:
Hydro-Codan (works great, not an addiction type, just live)
Ranitidine (great for stomach ache and nausea)
Lidoderm patch (good for my tail-bone back pain).
Doctors make the decisions. They do the best they can. My primary said they don't understand very much about AVM.
Prior to my stroke, Cymbalta helped with pain and took away depression. Now it made me worse, so not any more. This web site with similar folks keeps me going. You all, and a psychiatrist!