Not sure if people still responding here; I do not see many recent posts, but thought I would share anyway. Positive side is I happen to live near Mayo Clinic, so I have a good team, but this all came about in such a weird way, still breaking myself in to the diagnosis. I started smelling smoke that was not there, phantosmia, and went to an ENT. From the inside of my nose visually, everything looked ok, so they ordered MRI and CT scan to rule out anything nefarious. DVA with microhemorrhage revealed in my MRI at UF, I set an appointment at Mayo Clinic, and the Neurologist saw a cavernoma by the DVA. The hemorrhage happened between the two and there is pressure from it being placed on a large vein, not a ton, not a major hemorrhage, but somehow that does not make me feel much better. Plan is to wait 6 months for a follow up MRI, this time on a 7tesla at Mayo with a Cavernoma specialist and my other Neurologist which specializes in Gamma knife etc. If I have seizures or a stroke, things move up hahaha. My BP is good, but I have changed all my foods etc. Eliminated emulsifiers, which can accelerate or cause bleeds, am taking magnesium and vitamin D, doing a 1/2 gallon minimum of water a day. Exercising, doing everything I can, although I am not sure how much everything will make a difference. Also decided to get a med bracelet stating “no blood thinners” just in case something happens. Neurologist said he has patients with many CCM’s so that is not a worry on its own, but these two in such close proximity can be problematic and we do not yet know which one bled. The phantom smell thing was so weird, but a big jump in such a short time to get here…thought sharing might help or bring insight into other people’s cases.
Hi! It’s really good to have you on board!
I think we have very few CCM and/or DVA members: you’re certainly the first newcomer in a long time that I remember. However, I am sure one or two of the others will see your post and say “hi!”
I don’t understand much about CCMs or DVAs, so I’ll be interested to understand what your doctors advise.
Welcome! You are fortunate to be close to the Mayo for sure! I am in Canada and while we are great at the urgent, the less urgent wait times are long! I, like Richard don’t know a lot about CCM or DVA, I did a quick read and find it interesting the clear indication of familial and sporadic. I have undergone genetic testing and have an abnormal gene that elevates my risk for certain cancers. So happens my dad ultimately passed with one of the two. I know go for further testing and set up regular screening. Now my kids will be tested as they are 50/50 on having the same. It will enable them to be prepared if positive to undergo screening and ensure precautions such as life style. As you say healthy lifestyle that is within our control.
Any family history for you? I would be interested if they have identified the specific genetic component to the familial piece. Mine is a long winded identifier that is quite rare, as I would think CCM would be. The geneticist I spoke too said it was the second time she has seen it in her 5 years. When I think of being that infrequent and my also having an AVM would put me in a class with few others! I just hope my kids were on the good 50%.
Thanks for being here, the more experience and information we can share benefits all of us with rare “things”! Take Care, John.
I have not had the genetic test, but I think just due to the close affiliation with the DVA they almost rule that out. It is interesting though because some of what i have read indicates the mutation of a gene PIK3CA during development to create the DVA, and a second mutation to create the cavernoma, but who knows the accuracy - lots of reading required and this was just released off of a study in March 2022 A 'perfect storm' of genetic mutations is behind rare sporadic brain malformations that cause stroke, seizures . The second mutation that coincides with the PIK3CA to create the CCM, according this this study, is the CCM3/PDCD10, which is the mutation you speak of - to me this sort of muddles the origination of the mutation, but I am no scientist. Makes a bit of a chicken and egg conundrum in my opinion, so I wonder what the impact of outside factors is on the mutation. You start to go over things with a fine tooth comb like a detective when presented with these situations. The emulsifier thing was really interesting, and they are in everything. The researchers on the emulsifiers go into lipopolysaccharides (LPS) research and its correlation to gut barriers, but state that cavernoma formation can happen when genetically susceptible. This video speaks plainly and has a lot of info on the CCM3 info Dr Shelly Stevens - The Gut - Cavernoma Connection Emulsifiers and More - YouTube There is a video somewhere I saw with the actual researcher, I think she is from Bosnia, which is a little harder video to watch, but very interesting on addition areas for which the LPS research is being used - vaccine components and drug delivery to break the blood/brain barrier. Gram negative bacteria also carry the LPS as a coating, and there are ways your body activates this in microbiomes of your gut - wild.
I had more links in this post with Emulsifier lists etc, but it limits me to 2; just wanted to share what I found so far or where I am looking for my ability to effect the outcome of my condition, if even possible at this point. Happy to expand upon any curiosity in the above, or clarify if it is jumbled. I go in September for the 7T MRI follow up to see if any progress or further hemorrhage is happening in the parietal lobe, but nice to be here among other unicorns
Since you’re a new user, the site imposes some limitations. As you read plenty around the site, give out some s, your status changes and you’ll get an automated email to tell you you’ve been promoted. Post within the limits for now and once you see that promotion, you’ll be a bit freer.
Share some more tomorrow should be ok.
It’s good to have these conversations around CCM and DVA. The CCM members should also have had a notification email that you posted, as well, so hopefully you’ll get some people who do know more about these things sharing their knowledge and experience.
Thanks Richard, I will poke around. I am an information vacuum these days, and hearing the stories of other unicorns makes this a bit easier to swallow. I completely relate to people feeling like they have a bomb in their head and learning to find a calm spot in a hurricane. Thanks for all the guidance and welcoming messages.
More to share soon,
If it stays quiet round here, I’ll see if I can find one or two other unicorns to nudge and answer you.
Regardless of the specifics of CCMs and DVAs I think we can all help you through the worries, which are basically the same for all of us. As you say the constant ticking of the bomb is a concern (I could actually hear my AVM, so that was a very real tick, or “whoosh”)
There are some things you can do, I think, to feel more protected. I think my key thing was getting a customisable medical wristband. I wanted it to be the case that if I was found by people out in the wide world and I was having something unusual or catastrophic go on that my medical id and my hospital details and my wife’s phone number were immediately to hand. I found some engraveable silicone bracelets which were perfectly comfortable to wear (24×7 if necessary) and getting those sorted helped me to feel better protected.
Talk to us about what you’re worried about: we may be able to help.
That’s so funny you said that Richard - it is amazing and refreshing so many of us seem to be the same or thinking the same thoughts. I happen to have a jeweler in Miami that casted an ID bracelet for me - I get it next week. It has mention of no blood thinners (ICH) casted and my doctor’s name lasered below (just incase it changes). I figured the first priority was if there is an incapacitated event, it would be an ICH; I have my husband set as emergency contact in my phone/watch (Apple), but I figured the doctor was priority. The doctor I see in September, which my Neurologist is bring on to the “team”, is a Telestroke specialist. Ready for some Star Trek freakiness? Apparently they can operate on you from Florida wherever you are that there is a Telestroke center. My travel will likely be more limited over the next 5 years, as I am in my riskiest period (I travel internationally with work sometimes), but that is completely freaky to me. I suppose it should be reassuring, but I am a bit of a control freak, so I am working on my “to do” and “to know” list for my instructions in case I am incapacitated. All on board with the bracelet!! I looked at ordering some, but they looked so small and unnoticeable. If I have to switch careers maybe I will launch a proper ID bracelet company.
Thanks a ton Richard!!
All the best,
By contrast, my bracelet cost £12 each time, so I had about three or four made up over time, as I learned my diagnosis or had had treatment, and at one point I had a bright red one and a navy blue one to choose which to wear in the mornings! If I was feeling out-and-proud about it (by which I mean of a mind to talk to people about my condition) I chose the red. If I was feeling less open for the day, I chose the blue.
It was an interesting thing to wear the red one. I think we are a more open society to discussing these things than perhaps in the US, despite our reputation for being “reserved” and it was interesting when people had seen the red bracelet who ventured to ask me about it. I felt it was a good thing to discuss it with those people about me with whom I spent much of my working day: if they should find me inspecting the carpet at close range without good cause to suspect a stroke, even if (in their understanding) “strokes are for old people?” They’re not.
I also put the details into my phone, though it was a few years ago and one of my phones (I had a work one and a personal one) didn’t have a medical info section, so I edited some text into my lock screen image to say “Richard’s phone” and “ICE 07123 456789” which is the basic set of info an ambulance crew in the UK would look for. “ICE” meaning “in case of emergency” to ring my wife’s mobile.
I have to say that doing these things helped me to relax a bit. It’s just normal to feel how you feel.
Hope this note finds you as well as can be expected. I am a DVA/CCM “patient”. I was originally diagnosed in 2017, which happened to be an incidental finding. I saw an ENT due to tinnitus in my right ear and an MRI was ordered. Having been referred to various Neurologists, Neurosurgeons and Interventional Radiodologists, it has finally been decided to stop repeating annual MRI’s. I had a haemorrhage and there is residual blood in the brain. My DVA/CCM is in my right cerebellum, which is quite a tricky area to reach. I have been told that the DVA is unlikely to have bled, but rather the CCM, which is also in close proximity. The DVA is an abnormal vein formation which is created whilst still in the womb. There are no specific genes, however there is a chance of other family members having the same issue.
I am in South Africa and gamma radiation is not very common, however i have been advised that surgery is completely out of the question. The reason is that although DVA/CCM involves veins and not arteries, the bleed is generally slower, hence there is not often the sudden massive haemorrhage. Surgery is likely to to result in death. The most recent neurosurgeon that I was referred to 2 months ago, has advised that I try forget about them and live my life to the best. His explanation is that a bleed could happen at any time, so it would be wise to “leave sleeping dogs lie”.
Agreed, if seizures occur, this could be a sign of a recent bleed, but until then, try enjoy your life to the fullest and not be concerned.
Hope this helps, but happy to discuss more on the subject.
Take care, Debs
Always such a trip for me to see how close everyone’s story is to the other. Do you still have tinnitus in your ear? Must be terribly annoying. I don’t smell smoke anymore, but have completely reorganized my food and priorities. Everything I have seen shows surgery seems like a last resort that should only happen during disaster. I have seen ultrasound emerging as the latest and greatest, but I do not know much yet. The alliance to cure foundation happens to have their annual conference in Miami next week, and one of the presenters is a researcher begin that, so I may drive down for the day to check it out. If anything accelerated I would like to be informed; I’m not as interested in medications. I think with the symptoms being only a few months ago i am not yet settled and awaiting the 7T MR; I am still in adjust mode, and working on setting up new patterns. I am a little concerned about location and blood buildup creating displacement or pressure on the main vein, and the smell thing may indicate
it’s on the edge of temporal and parietal lobes and I don’t want to have seizures (bit vain about my teeth ), but I think 7T MRI will help with those answers. Once I’ve done all I can, I will chill and ride the crazy stallion away from the burning barn, or hold on tight and let it roll.
Thanks for sharing your story, nice knowing there’s so many others feeling same, which I suppose is terrible to state.
All the best,
I’m not sure what a CCM and a DVA are? I had a Brain AVM ~5 years ago while taxing my plane to the runway, (cleared for takeoff) , as a Delta Air Lines Captain. I felt woozy, then dizzy, set the parking brake, and past out, and I am told was passed back by the passengers to people on the roof of an Ambulance that came onto the runway. I was rushed to the Hospital, the brain surgeon was there already working on a gunshot wound and worked on me for a long time. He came out of the surgery, looked at my wife and said, ”He’ll probably die, but if he lives he’ll most likely be brain dead”. Well, I apparently didn’t die, and since I never used my brain much, I’m not brain dead, (although my Wife say’s I am). Anyway, you’ll do fine!
They are low[er]-pressure vascular malformations that are essentially similar to an AVM and therefore we include these in our AVM community. From what I can see, they are less common or it could be that we attract fewer CCM or DVA members to the forum since we appear to be rather more focussed on AVMs. However, the worries are very much the same, the impacts can be the same, so it is important to put our arms around CCM and DVA patients.
LMAO. I happen to rely on my brain, and so do many others so I am FUBAR without it - sort of the instrument I need. I imagine you are retired from your career at this point, but I am going to do all I can to prevent that; I do not have a successor in my company at this point. I broke my back when I was 18 though, and I know those Dr’s were talking about me not being able to walk potentially, so it is not that i am freaking from the news, but I am damn sure going to try to get ahead of it and learn all I can. When I have exhausted all options I suppose I can put the old noodle out to pasture, but until then, and while it is working well still (I think), I am going to suck up information and do all I can to protect the egg from the time bomb. If there had not been a hemorrhage and symptoms already, maybe I could chalk it up to ‘it is what it is’, but not there yet. What a flight that must have been. Chicago connection? (gunshot wound humor). Better before takeoff then after I suppose, so lucky Glad you are with it enough to still have a sense of humor.
Thanks for your story!
Yes, rather frustratingly, the tinnitus is still very present. Some have thought that the tinnitus is caused by pressure on a nerve/s due to the previous haemorrhage, however nothing has been confirmed. The tinnitus is likely to be long term. Some have advised that a hearing aid may reduce the noise, however I am not yet ready to accept wearing a hearing aid.
The blood buildup that you refer to is hopefully small enough to not cause pressure in the brain, due to bleeds from CCMs being slow bleeds. This said, the headaches that I encounter on a daily basis are more of a concern for me. This too has not been confirmed as being due to the prior haemorrhage.
I would be very interested in hearing any more information that you are able to obtain from the Miami conference next week, should you manage to attend. In addition, any additional information would be most welcome, although I think I have come to the acceptance of “what will be, will be”.
Take care and have a wonderful weekend,
Yes I’m kinda retired, I can’t hold a pilot’s license with my double vision which seems permanent. My Delta Airlines Loss of License insurance pays me till I’m 65 and I get a Navy pensions for the 23 years I spent there, so I travel with my Wife. I wish you the best of luck, remember you’re not alone, many of us have gone thru this, and our lives have been altered. On a separate note, after my brain surgery and my 1 1/2 month coma. I was sitting on my couch one morning when I got home, and thought I heard the neighbor drilling at 0530 in the morning, I was mad as hell, until I realized it was my tinnitus returning, I got it from all those years around jet engines in the Navy and was kinda used to it, but when you don’t have it and all of a sudden it starts up again, it’s kinda weird!