Hello…this is my first time posting on this forum. Over the last several months, my daughter has been experiencing chronic headaches, on and off blurred/double vision, nausea, and pulsatile tinnitus. We went to the ER one night when her headache was unbearable (this was prior to the start of the visual disturbances) and the doctors performed a CT scan which came back normal. However, once she started having visual problems I took her to see a neurologist who took what seemed like an extremely pointless medical history and then chalked her headaches up to migraines because she used to get car sick as a child, and apparently car sickness in childhood is linked to adult migraines. He didn’t seem to take her visual disturbances seriously at all and suggested that she go off her birth control pills and all would be solved. He did mention that there could be a problem with the blood vessels in her brain, but didn’t really get much further into it. However, the symptoms started getting worse about 2 weeks after she went off the pills and finally the neurologist ordered an MRA. Our insurance company would not approve the MRA, so we had to settle for an MRI. Everything came back normal on the MRI, but her symptoms still have not gotten any better. Although the MRI was normal, I cannot get it out of my head when he said there could be a problem with her blood vessels. We have an appointment in November for a second opinion, but the insurance company still will not approve the MRA. I am just wondering if people who have experienced this got their diagnoses from an MRI. Additionally, if any survivors experienced unilateral pulsatile tinnitus as part of their symptoms. The neurologist didn’t seem to think this was relevant to her case at all, but I am not convinced.
Thank you, and best wishes to all.
-Julia
Insurance companies are horrible. I was able to get mine approved because my doctor told them i had family history of Aneurysm. I was about to get a MRA and MRI. But from my understands if someone has a AVM and MRI would pick it up… keep us posted
HI!
That is sad about insurance that can be not helpful at all. Im sorry you have to go trough this It is gonna be stressful dealing with insurance and doctors, BUt have faith my friend… I started with a noise on my ear strong…I went to see an ear specialist, he order an MRI insurance didn’t approve the procedure we decided to leaved…Months later I had My first symptoms strong headache blurred vision , nausea, vomiting, seizure… In the ER they ordered a MRI and MRA, then they found out that I have an AVM located in left frontal lobe. and aneurysm behind my left eye…According to my understand. The MRA is the one that locates the avm. Well thats what my neurologist said. NOt the MRI. Well thats my experienced. ( you can also google the MRI and MRA to see what they do or what they looking for)Yes I have tinnitus as a part of the symptoms, even though I had the craniotomy done I still have the tinnitus with slight headaches… WIth craniotomy Part if was removed and a small part was left inside next treatment is radiation .Remember my friend always ask questions If you don’t like their answer ask them again. Wish you the best with you daughter treatment and good luck…GOd bless you too.
Hi Julie, I have suffered from chronic back pain for many years that my doctor referred me on to an orthapaedic consultant. In turn he organised for me to get a full spinal mri which incidentally found my AVM. I had a CT scan about 13 years ago which apparently didn’t pick it up then. Hope this helps. Susan
Hi Julia,
Have you considered connecting w/survivors in your region http://www.avmsurvivors.org/group/northeast to possibly find another specialist to send your daughter’s films, reports, etc. for another opinion(s)? I think most specialists don’t charge a fee to review films & give opinions, but you would need to first check.
Best wishes,
Patti
Thank you so much for all of the warm wishes. This really is a wonderful group of people. My daughter and I actually got a second opinion, and she will be having her MRA thus Thursday. I am trying to stay positive, but the anticipation of it is almost unbearable. I hope everyone is doing well!
Julia, all the very best to your daughter. Please let us know how this goes. This site is my life-line since my brain surgery; wonderful people here who will always support you. Thoughts & prayers with you both. xx
hello julia. Let me get this correct - your daughters scan, and the opinion from the doctor so far, has not said she has an AVM yet? So far all i can see - “Although the MRI was normal, I cannot get it out of my head when he said there could be a problem with her blood vessels” - so there COULD be problem, but there is no definite yet. I believe anyone with an AVM bleed on the brain with an MRI scan would show up pretty 100%? So i just do not quite understand what info u have got yet. So i hate to say this, but i could understand the opionon from the insurance company right now. I totally do not understand what the doctor said though - he would either tell u have an AVM or not, from an MRI scan (i certainly did). Im kinda shocked by the response of the doctor though - “…he said there could be a problem with her blood vessels” - a second opionion must be required…
tinnitus, yeah that reallt can be frustrating. When i first got it, i downloaded a ton of water flow sounds, the beach/sea sound…no music, just the sound of something on the back ground. That would help me go to sleep much better, and was also good in the office when i went back to work. Just the sound of a beach and the ripple of the water coming on and out, stops the sound of silence/tinnitus…