Good day all, hope you are all staying as safe and well as possible under the current global pandemic.
I was last on this site a long while back. The reason being that at the time there was no information or advice/assistance regarding DVA’s. I have a CCM with an adjacent DVA and am trying to obtain as much information as possible please.
If anyone can guide me in the right direction or provide some assistance/guidance, I would be most appreciative. I am based in South Africa and there does not seem to be much knowledge on these.
I’ve done a bit of a hunt around and there are quite a few folk here who have a CCM (I assume fewer with the associated DVA, per our previous conversations) so I hope some folk can chat with you.
I’ve created a @BrainCCM group for people with a CCM. I’ve added 13 people to the group. If anyone doesn’t feel they belong in the group, it is easy to leave: just go to Groups on the three-line menu, top right of the page (on the green banner) find the group and press Leave Group. However, for the rarer conditions, I hope it is helpful to know who your friends might be. If you have more than one condition, you can join more than one group.
All,
Please connect to the site and see Debs’ question. All input and support is very much appreciated.
Hey. I saw this early on. I don’t think I can be much help. I’m not familiar with DVA. my cavernous malformation was in my brain stem. I was told that they’re the low pressure return side version of an AVM. I was told that they sort of ooze out vs burst. I was told that I should avoid high blood pressure and blood thinners. My experience is that you want to make a lot of appointments and talk to a lot of people before you do anything. It was good to ask them their opinions of each other and who they would use if it was them.
It is quite odd as I am on blood thinners for my high blood pressure and the doc has mentioned that this should help with my DVA/CCM. It is quite odd how different doctors view this.
My DVA/CCM are in close proximity to each other in my right cerebellum. The headaches that I experience are very similar to a migraine. I have twice (since the discovery of the DVA/CCM) experienced a very sudden excrutiating pain and headache on the right side of my head. This can last for a few hours at a time and then seem to subside. My concern is that when I experienced this, whether this was possibly a bleed. I was advised that it is a venous bleed and not a gushing type of arterial bleed. I just wandered whether this was possibly due to extra pressure in the brain from a bleed. I also tend to get dizzy and nauseous at times.
The other symptom that I have presented with and nobody seems to be able to give me any answers, is that I have had tinnitus in my right ear for the past 4.5 years. My right ear sometimes turns a purple colour on the outer area, which is quite concerning for me and also makes me self conscious. I can almost feel it changing colour. Nobody seems to be able to pinpoint the cause of the tinnitus, which is constant.
My main concern here are the headaches and the constant tinnitus. The headaches are becoming more frequent too and between the two, can become quite debilitating at times.
Any advice from anyone would be greatly appreciated as well as if anyone has experienced similar symptoms to me and what the way forward could be for me. Which type of doctor should I try and see. I was a neurosurgeon and he referred me to a diagnostic radiologist. He advised that DVAs and CCMs are often associated.
Many thanks,
Take care, stay safe and stay well,
Debs
It’s definitely possible for a bleed to result in increased intracranial pressure. I think this is usually because the bleed reduces the brain’s area for absorbing cerebrospinal fluid at the rate that it is being produced, so if you’ve signs of raised intracranial pressure, I guess it could be to do with a bleed. So far as I know, the easiest test is the one where they shine a bright light in your eyes to see how your pupils react, so even your GP or your husband might be able to test that for you.
A bunch of us have tinnitus and I’ve never seen anywhere what is recommended to do about tinnitus at all. I’ve no idea what causes it and I’m not sure doctors do, either. If you ever get an answer on that one, do share!!
Hope some of this helps. I hope some of the cerebellum folk can help you with what their symptoms are generally.
I started with headaches that wouldn’t get better when I took something. Then light sensitivity. Then nausea/dizziness/vertigo. When I couldn’t keep food down I went to the hospital. CT w/contrast is what first saw it. A 4mm blood clot in my brain stem. At first I was told inoperable then found someone that fixed it with a little robot. I am now what’s left. But no headaches and nausea:) That was the worst. I have tinnitus in my left ear it’s rare and doesn’t last long.
My understanding of CCM is that they periodically ooze a little blood. It clots and the dissolves. This starves some tissues. I’m on metoprolol for blood pressure. I don’t think it’s a thinner?
There’s a lot of moving parts and I don’t know anything about DVAs.
You can’t go wrong getting more opinions. At least to ask these questions.
Eventually you’ll find someone you’re comfortable with. That seems to know what is going on.
The ear thing sounds like blood restriction. Like the blood is backing up in the ear and starving for oxygen.
I know that things are unpleasant but don’t jump at solutions. Believe that you’re going to be around for a long time and this too shall pass.
I’m definitely not qualified to give medical advice but I would ask if an alternative blood pressure medicine might be better. High blood pressure would be bad. Anticoagulants would be bad Blood thinners would be bad. I would think. I would think you’re looking for intervention. Be sure because it is sort of trading side effects usually. It’s called vascular neurosurgeon. And I would be prepared to farm it out to a lot of places. I’d ask everyone I met who they’d recommend.
Wow, you both are angels from above. You have certainly given me a fair amount of info here but also being very supportive.
Unfortunately, no husband to assist as I am a widow. However, I could ask my son. I am assuming that there should be the usual dilation and constriction of the pupil (if there is no additional pressure). I could then take the next step if this is not a normal response from my pupils.
The blood thinners that I am on are baby aspirin, prescribed by my GP. This is for a combination of the blood pressure as well as high cholesterol, to help keep the arteries in my body from blocking up. @JeremyH, was your tinnitus permanent prior to procedure or has it always been an on and off situation? If I ever find a solution to the tinnitus, I will certainly share as this is an extremely frustrating issue to cope with.
I will try and see if there are any vascular neurosurgeons close by that could possibly take a look (or at least listen to me) to see if there is a quick fix solution.
Once again gents, thank you from the bottom of my heart. Greatly appreciated.
I’ve had a quick look online for how you do this test – you may be as well to have a read yourself. Undoubtedly, it is best to get a doctor to look, as they will know exactly what they are looking for.
The other thing to be very careful of is not to shine one of the modern LED torches in your eye!!! Maybe I shouldn’t have suggested doing this at home…
Once again gents, thanks so much for sharing your knowledge and experiences/symptoms.
I have done some research and it seems as if there is a CCM with an associated DVA, this is not operable. The main reason is due to a DVA instability, which if tampered with, will cause a massive bleed out possibly resulting in death. So it seems as if in my case where I have both the CCM and associated adjacent DVA, the only treatment is to hopefully control the headaches and any other symptoms. I have managed to find a Vascular Surgeon who is a distance from me, so will need to try arrange to get an appointment and get another opinion. Possibly they can investigate whether there has been an additional bleed or any other changes.
Seems this may be the way of life going forward, but hopefully there is something that they can assist with the headaches, nausea, tinnitus etc.
Again, you are both angels from above and wish you both well in your respective recoveries.
Well, there are a number of people here with AVMs or aneurysms or CCMs or whatever in places where their surgeon is saying “yeah, we’re not going anywhere near that!” So you’re not alone if you find yourself in that situation.
It is a good idea to get a few opinions, if only to gain some consensus that it really is best to leave it alone.
The other thought I like is that my grandfather had migraines, nosebleeds and eventually some deficits from what are clear to me were haemorrhages. But he served as a soldier on the front in World War I and so many men came back from the trenches with the most unusual illnesses that the doctors ascribed it all to the war. I don’t know whether it was the war or an AVM or what but I do know that in 1921, when he started to have migraines, the technology may have existed to have a look but the technology to do anything about it was nowhere near. There was no point in even looking. However, today, we can do some amazing things for most patients and it is always possible that techniques may improve in the next ten or twenty years to offer more of us a safer future. I feel I have avoided the fate of my grandfather directly because of these revolutions in technology.