I have a question and hope someone can shed some light please. Although I do not have an AVM, I am hoping to hear from others who may have been diagnosed with or heard of the terminology used below:
I would like to ask a question regarding bleeding please. Hope you are able to help me with this.
The interventional radiologist wrote: “Adjacent to the DVA, a small area of blooming is seen on hemosiderin imaging, probably related to a cavernoma” This is in my right cerebellum hemisphere. Does this sound like there is new and old bleeding? Should I be concerned? I have not been given sizes, grades or anything else that people mention. I am really struggling with severe headaches, nausea, high pitched ear ringing, dizziness etc. The symptoms mentioned here have been constant for the past 6 months. Another huge concern for me, in the past 2-3 months, has been my short term memory loss. Can this be related?
I was told that they do not want to do anything at present, unless there is a new bleed. I cannot have radiation, due to the proximity of the cavernoma to the DVA.
There are days where I get severe headaches, almost migraine type, which medication does not help. The headaches start in the right lower back region of the head, the same area as the DVA and cavernoma.
Any help understanding or advice would be greatly appreciated.
Hi. I’ve done a bit of Googling to try to piece together some information for you. DVAs and Cavernomas are less often seen on this site.
From what I’ve found out hemosiderin is often the remnant of a bleed. It is often formed from the body attacking leaked blood, so rather than the residue being seen as old blood, it can be seen as hemosiderin as a “blooming effect”. Wikipedia gives a good explanation of hemosiderin.
The other thing I’ve found is that DVAs quite commonly occur with cavernomas… I think something like 25% of DVAs. So, the radiologist is linking the hemosiderin to a historic bleed from the cavernoma. The combination of a DVA and a cavernoma is an example of a “mixed vascular malformation” and treatment is driven more by the cavernoma than by the DVA.
The final thing I found is that a DVA is a low pressure anomaly rather than an AVM which is a high pressure anomaly.
My conclusion is that the cavernoma is the item to find out more about, as treatment would be centred upon that rather than any DVA. But note, this is just me Googling stuff, not telling you from first hand knowledge.
Thank you so much for responding as well as all the research that you have done. I will take a look at Wikipedia, as suggested.
A DVA cannot be touched under any circumstances. If it is, this will cause a stroke or death. The cavernoma is what I have to focus on now, so yes I agree with you. I will try find out more from neurosurgeon. I have done a fair amount of research on DVA and cavernoma, individually as well as combined as in my case, but it was the terminology “hemosiderin” that I could not find out much about. I have seen different understandings of hemosiderin, hence my post. The neurosurgeon did mention that it is a low pressure anomaly, for which I am grateful for. He said that this is the reason that I did not know that I had a previous bleed. The headaches is what is a concern for me, as they are sometimes quite debilitating. One is never certain whether this is due to pressure from the previous bleed or whether it could be a new bleed. I also have herniated discs in the neck, which I guess could also cause the headaches???
Thank you once again for your kindness and explanation. I realise that you are not a doctor and that you can only provide me with research information, but I am extremely grateful. Also knowing that this site does not focus on DVA and cavernoma, it is great to have the support.
It is great to have you in the community. Just because DVAs and Cavernomas are not common in this community doesn’t mean you’re unwelcome. On the contrary, it is great to be able to help a bit. Cavernomas and AVMs seem similar in their issues and perhaps treatment, though I haven’t read enough about treatment, so great to be able to support each other.
I have a cavernous malformation 2.3 cm x 1.2 cm. Reports indicate hemosiderin deposition. This means a cloud can be seen around the malformation indicating some type of a bleed. A cavernous malformation is a lot like a black berry, with each thin walled globe, filled with blood. Sometimes a globe can burst, or weep. Blood pressure in a Cavernous malformation is static, meaning no pressure. Each time a Globe bursts, there can be some neurological deficit. I’m not a doc, but I’ve drilled the docs for answers over the years, and have done a bit of reading. I hope this helps.
Ed
Additionally, blood in a CM does not oxigenate and becomes stale. Eventually the blood calcifies as a result. When this happens, calcification can be seen at the site in imaging.
Hi Ed,
Wow, thank you so much for your response and valued input and understanding of CMs. I greatly appreciate the time you have afforded me to respond. I feel less concerned now that there has been a new bleed. Does not help with understanding the sudden memory loss issues, spelling issues etc., but possibly this is all part of the process.
Neurological deficit can occur with each bleed (causing memory & spelling issues, etc.)
As the malformation has multiple globes (like a blackberry) filled with stagnant blood, and the globes have very thin walls, the malformation is the gift that keeps on giving,
Sometimes the globes don’t just break open, sometimes they can weep.