I have some questions if anyone can answer I went to the er yesterday because I had blurred vision, dizziness, numb face, severe pressure in my right temple and severe headache. My AVM is on the left lobe. They did a ct but said I was just having a migrain and sent me home. I had 2 embolizations 2 years ago to close off 8 anurysms inside the AVM. They can’t do anything else with the AVM because the location and the size 6 cm. Is this just normal to have all of these symptoms from a migrain? I do have headaches daily and some times I get a numb face. I am having more and more symptoms more often lately. I do have an appointment at Johns Hopkins on the 28th.
I wish I had more answers for you but I will tell you my experience. Ever since I was about 8 years old I have been getting migraines where my whole left side goes numb, blurred vision, dizziness (basically what you described). I was always told it was normal for migraines to do this and not to worry. They never even gave me and MRI or a CT angiogram. I was finally diagnosed because one doctor was like it could be just a normal migraine but lets look into it. I THINK (although I am not a doctor) it is a symptom of the AVM but not NECESSARILY a serious one. Like I said I went to several doctors and they had all told me it was normal. I understand your frustration. Hopefully you will get more answers on the 28th! Good luck!
Alyssa
Thank you Alyssa, I hope the best for you also.
My son had a resection for one of his AVMs 14 years ago. He has had intermittent headaches and vomiting ever since. The doctors have always just fluffed us off. In the past 3 months, my son who’s now 25, has had an increase in the headaches, vomitting, and has added daily intermittent dizziness and visual loss. He had an MRI that showed a small amount of additional bleeding at one of his other AVM sights. The doctors are not taking it seriously and have given him meds for migraines which has only increased all of the symptoms. I’m working with our insurance company, Kaiser, to get approval to go to Mayo.
My thoughts are that even if the doctors cannot surgically resolve the problems, they should be able to effectively treat most or many of the symptoms. It is unacceptable that these doctors are poopooing clients!
My prayers are with you. Keep fighting.
Defiitely speak to your dr. but I am like the queen of migraines…I have a daily headache and migraine constantly with vomiing etc. I get a numbing sensation too and many of your symptoms but it would be foolisht to say it is “normal” you definiely need to speak to your dr. of these symptoms Brenda… could mean things are changing… And if really bad GO TO THE ER… better safe than sorry These are all so invididual you cannot discount them CT do Not show avms…trust me had many that never picked mine up … Please take and do not wait until the 28th if you do not feel well!!! Mare PS Never say nothing more can be done…get other opininons…you shouldnot be left in pain (like I am)…first make sure nothing in going on new though…I cannot emphasize it enough!
Mare, isn’t there anything that can be done for your headaches and vomitting?
I go to Johns Hopkins this Monday and hopefully they will give me some answers. I do have a question about having a CT scan, every time I go to the ER they just give me a CT scan and tell me i’m not having a bleed. Without an MRI how do they know that i’m not having a bleed?
My left side also feels numb in some instances. This happens when I am stressed or the weather is very cold. Hope this is helpful.
Before my AVM surgery when they did a follow up MRI on me and they thought they saw some potential bleeding on the MRI so they actually followed up with a CT scan, they told me the CT scan shows NEW BLOOD better than an MRI and it was with the CT scan that they determined the blood was actually old blood from my stroke that was still reaborbing. A few months later they did a second angiogram after the blood had reabsorbed and then they were able to see my “tiny” (less than 1 cm) AVM (which had caused quite a large stroke). I hope this is helpful! Feel free to ask me more on my page.