Hello my name is Payson and I am new to the site

Hello my name is Payson and in June of 2015 I was diagnosed with a cavernous malformation in my Left Superior Frontal Gyros (say that fast five times). I feel very confused most days, and have a moderate to severe headache that is pretty much consistent through the extent of both the day and night. I seem to have issues with getting my mouth to convey the thoughts that I want to express. I have not had a seizure, but I have experienced many muscle spasms and twitches. If I am able to fall asleep I wake up every two hours like clock work. I am quite irritable and find it very hard to complete tasks. I am sure there are a couple more that I am forgetting ( oh yea, I am having memory problems). Basically, I do not feel like the same guy I was just 8 months ago. My doctor described the cm as very small and he said the bleed did not seem very significant. I was wondering if anyone else has experienced similar symptoms with such a small bleed, and if so what might I have to worry about or look forward to in the future. I just had another MRI (6 months later that the first) and the cm was not any bigger, but it was not any smaller according to the doctor determinations. I was hoping to also get a bit of advise any thing that might help get me through the day. I am very glad that I stumbled upon this wonderful site. The people stories here have made me cry and laugh. They have given my hope and inspiration.

Hi Payson , I was diagnosed in Oct/15 with a left occipital CM. I too experience almost daily headaches and I get these weird sensations in my head when I stand up. I am awaiting another MRI in Mar to confirm that there is no other thing in my head beside this CM then they will take it out so the doctors says.I have seen a number of posts about other complaining of headaches too. Is your CM not going to be operated on? My doctor has given me the choice so far to have surgery or not.I will be having surgery if he still gives me the choice in Mar. Hopefully this will get rid of the headaches. I know just what you are going through. I just take extra strength Tylenol during the day to help and Tylenol 2 at night when I can't take it anymore.I wish you the best and hope they can do something more for you . Take care.

Hey peyson. Glad you’re here. I was also a CM but in the brain stem. I can tell you don’t take blood thinners like Aleve. Unfortunately that’s what I did for the headaches. The problem finding the right words to say is called aphasia and we have a whole group for it. I would try there. I had a craniotomy to repair mine. I honestly don’t know how much I could have stood of the headaches. I started missing work. I can say that my headaches went away after surgery

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Thanks for the reply. These headaches are quite intense and I do not seem to get break from them. I also have been experiencing an odd sensation in the top of my head. It seems to occur when I stand up or even when I get a bit upset. It feels like a slight tingle or blood rushing up to the top of my head.. I really do not know what direction I am headed with my CM. The doc is leaning towards just sit and wait for another 6 months. I am going to get a couple more opinions and go from there. I hope all goes well with your upcoming surgery and MRI. Thank you for taking the time to reach out.

Thanks for the reply Jeremy. These headaches are not fun. I will check out the aphasia group. Thanks for pointing me in that direction. I also was popping blood thinners like Aleve before I was schooled on some of the don'ts with a CM. Now I am only taking a bit of Tylenol and mostly grinning and bearing the pain. How did you discover you had a CM. I started having headaches, tingles, memory, and speech problem and got a MRI and there it was. The doc said that it was quite small and had not bleed that much. How long were you down after having the craniotomy? Thanks for taking the time to reach out and share. Have a great one.

My headaches turned to intense vomitting and that’s when an Mri with contrast revealed the culprit. I guess you could say I’m still rehabbing. December made a year. I have permanent deficits. The brain stem is precious real estate. A CM could go your natural life and not bleed again. I’m glad I had mine out it was a bleeder. The things I would consider is the severity of symptoms. Ease of access to CM. what your life expectancy is. And what kind of person you are. I’m not the person today that I was before the headaches. I can live with that because I’m 39 and have three young sons to watch grow up. I can shake off the bad with a smile and a shrug. Best wishes.

I get the sensation in my head also when standing .It almost feels like I'm hearing a noise of an overhead fan spinning a wherring sound .It's almost like being dizzy hard to explain. My headaches are very intense at times too. Not that I wish anything bad on anyone but its nice to know this isn't all in my head so to speak.My first visit to see the neurosurgeon I didn't get to see the doctor I thought I was seeing it was an associate who I think is just recently starting out. He tried to tell me headaches are not associated with CM's .I guess we have proved him wrong. When I go back in March after my next MRI I will be informing him of this wondering group of people I have found and that yes the headaches are from this disorder.He told me when I was there last it was my dissision to have it removed or not well after these headaches that sucker is coming out.Good luck with your headaches I know just how your feeling.

Hi there,
I am glad that I have found others on this site with a CM. I have a cavernoma in the right cerebellum hemisphere. It is in close proximity to a DVA (Developmental Venous Anomaly). There is evidence of a previous bleed, which seems to be linked to the CM. They are not too keen to operate due to the proximity of the DVA (which cannot be touched under any circumstances!). I suffer from continuous headaches, sometimes migraine like, nausea, high pitched ringing in the ear, dizziness etc. My short term memory has become a major problem for me too. I am still a very young 52 year old. They have told me that sometimes radiation can be used to obliterate the CM, but in my case this is not an option due to the DVA. I am based in South Africa, so I am sure that we are not quite as advanced as some other countries as far as medicine is concerned. On my MRI, it showed “blooming on the hemosiderin imaging”. Reading other posts, this seems to be old and new bleeding. Not sure if I have understood this properly, but nervous about another bleed. One thing at least, is that a CM is a slow bleeder, therefore it can bleed and one is not even aware.

If anyone can shed any other light on the matter, that would be great please.

Wishing you all well with upcoming surgery and/or recovery.

Best wishes,