Living With Cavernous Angioma


Back to Living With Cavernous Angioma forum
Back to forum index

<-- Newer
Older -->

Hi Everybody,

With all this time to reflect....I have been thinking about the following.

The various neurological deficits I suffer from right now, and the many different neurological deficits I have been reading about from other forum members, made me wonder about all this. They are all the cause by lesions in our head, that leaked some blood. Why with these billions of neurons in our head would we suffer such deficits from a "tiny bit of blood"? Can our brain not use other - alternate - neurons to pass on the correct information?

I hear a lot of us getting different therapies to correct problems with our limbs, speech and what not, but all that we suffer from is problems in our head. Yes in our head, their is absolutely nothing wrong with our legs, arms etc. We need to address the real problem, our head.

I was thinking about how we try to fix heart problems, when an artery is blocked we bypass the blockage...Could be not bypass the ccm lesion? What if we just cut off the blood supply to the ccm? It's just a capillary, Would it not die off and shrink away, when we burn off the entrance to it?
I think we could use medications that prevent blood vessel growth, just as they are using them right now to attack cancer tumors.

How can we get specific ideas out to the researchers so they can ponder further...

I would love to hear how others are looking at aiding the scientific community so find a cure for ccm....

Please share it in this thread...  

Henk :cool:
Unfortunately, that "small amount of blood" can cause damage to nerves in a tightly packed area.  It may be our brains that are the problem, but if the nerves don't work properly to our limbs or other body parts/functions then those are problems, too.  

I am all for the assisting the researchers, but I am not a doctor.  I can guess all that I want as to what could fix a CA, but have no way to prove my theories.  I believe the researchers are doing the best that they can with the resources that they have.

Unfortunately, once the nerve damage is done after a bleed, the nerves either heals or they don't.  If they don't, then the deficits have to be treated as best as they can.

Thanks Kathy,

I know you are not a doctor, and nor am I. I am however a science teacher and science has been my passion. I was just trying to get people to think about the condition they have and sometimes people come up with great ideas, some of them researchers never thought of.

Keep thinking....

Henk :cool:
Well, there are two things to think of.

First, when you have a brainstem bleed, that "little bit of blood" is compressed in a very crowded area, and brainstem bleeds generally lead to much more serious deficits than bleeds elsewhere in the brain. But it's not just the blood itself; it's the iron (hemosiderin) that remains after the blood (the liquid and blood cells) is reabsorbed. It is both an irritant, and, I suspected, a conductor (electrical, that is). Hemosiderin _never_ goes away; it is due to the iron in your blood, and there's nothing that can remove it.

Second, the brain _does_ rewire itself, and you'll find that, over time, some of the deficits will go away. Brain plasticity - the ability for the brain to use new pathways - was long considered impossible, but scientists have found, in the past twenty years or so, that it is very common. For this reason, in the past, stroke patients often weren't given enough rehab; now doctors know that this needs to be continued.

There have been attempts to block CAs, either through cauterization or blockage (there's a specific term that I can't recall for the latter). (BTW, the gamma knife affects a CA by cauterizing it with radiation, sort of...) This is not very effective in most cases. Cauterization only works in the cortex; you would have the same issues accessing a CA in the brainstem as you would in removing it.

What you're probably thinking of is accessing a CA via blood vessels and doing something to it. That's not really possible, since these are capillary malformations, and you can't get anything into a blood vessel that small. In addition, there's the risk of actually cutting of some blood flow to important areas.

I'm not a doctor, and all that...

Like Kirk said, the brain does form new pathways (plasticity), it just takes its sweet time.

Also, in reference to the idea that, the problem is n the brain, therefore only the brain should be treated, I assert my personal experience - I have weakness and a lack of coordination in my left arm; two hours a day I tie down my right arm and do everything with my left hand. It's frustrating, but after I do it I find that I am more willing to use that arm. I'm not strengthening my arm so much as reminding my brain that it's there. In effect, I'm treating my brain the more I use my left arm.
I am well aware of the brain's plasticity, but the point I was making is as follows. If the brain consists of billions of neurons, why would it be that it has only one or a few  specific pathways for particular functions in the arm. Could it not have installed itself with thousands of different pathways for those functions so that if one is severed or damaged, it would just the other ones? It's like we know there are several different ways to Rome. If one is blocked by construction, we can take another.

I know that by using the arm you are teaching your brain that it is still important to you. By why would it (the brain) assume it is not? Did it not use it for all the years of your life?  

When we are punched in the arm, we see a bruise, which is blood that leaked from the damaged capillaries. In a few days the body has reabsorbed the blood and the pain has subsided. I don't see any hemosedrin left behind there that causes "permanent" damage. Why is brain tissue so much different that it would take months to years to clean up the spilled blood and leave hemosedrin that could cause long lasting or permanent damage? Can the healing mechanism in the arm not work in the brain? What part of the healing mechanism is missing there?

And Kirk, I know you are not a doctor and all, but you have read up on the brain and the many aspects of ccm's, and I truly admire you for that. I thank you for all the contributions to the forum. You are clearly a front runner in a search fo a cure. But what I want you to do, is step outside your current comfort zone on ccm's and the brain, and try to think of ideas, new thoughts that could assist the scientists in coming up with a solution. Do you know who in the scientific community could pick up on our ideas? Who in the scientific community has interest in reading our ideas, our stores and experiences in this forum? In many areas of medical and/or health care it has been the patients that have driven the research. Sometimes their ideas spark the breakthrough....

Why could we not be a driving force in the answer for a cure?

Henk :cool:
Where to begin... I'll try and go in order of your post.

First, I think you need to not think of the brain as a monolithic entity. There is the cortex - the part that we generally think of as "the brain," and then there's the brainstem. (There are, of course, other areas, which I'll ignore.) The brainstem is a sort of switching center for the nerves that leave the brain and go out to the body via the spine. There are a limited number of pathways in the brainstem; if you were to look at some anatomical drawings of the brainstem you'd see that each specific nerve (in a gross sense) is marked. Each of these nerves goes someplace very specific. For example, my larger CA is on the left side of the pons, and affects the right side of my body. However, it only affects the right side of the right side: the exterior of my arm and leg. If I recall correctly, my neurologist told me that that particular nerve controls the little finger and half of the ring finger (odd that two nerves can control one finger...). This matches with the pain I had shortly after my big bleed.

So, the point I'm making is that when you deal with a brainstem bleed, which is your case, the number of pathways is much more limited. Naturally, strokes or bleeds in the cortex can affect certain areas of the body as well, but they offer more chances for rewiring; the brainstem doesn't allow that, because the wires are already dedicated to specific areas. Plasticity will have an effect if the cortex is damaged; what controls the arm (the actual control, not the wire than carries the messages) can move to another section of the brain.

As for hemosiderin, it is simply not reabsorbed when the rest of the blood is reabsorbed. This is not the case in just the brain, but can occur in other organs as well. I'm guessing that it doesn't happen in muscles and fatty tissue (which is what you're talking about with bruises), but I don't know why. But hemosiderosis (an accumulation of hemosiderin) is a common enough problem. I asked my neurologist once if it would be possible to use chelation drugs for hemosiderin in the brain, and he said that while they work in other organs, they don't pass the blood-brain barrier.

I certainly understand your questions and curiosity, but I think you are underestimating the doctors and researchers who look at CAs in assuming they haven't asked these questions before. I'd certainly agree that thinking outside of the box is a good idea, but the brain is not something that doctors have just started looking at. Questions of brain hemorrhage are widely researched, and there's a wealth of knowledge about the mechanical aspects of CAs.

I think you also need to bear in mind that dealing with CAs leads to a number of issues:

What causes them, and can we prevent them from occurring?
In cases where people have multiples, can we prevent new CAs from occurring?
What causes bleeds, and can we prevent bleeds from occurring? (This is where current research is making the most headway.)
How do we treat people post-bleed? (This has little to do with CAs themselves, but is the same as for people with brain hemorrhages caused by other problems.)
Can we remove them?

So the search for a cure is unlikely to stop them from occurring, because they're not common enough to be the object of, say, a vaccine. It might try to block de novo appearances of CAs in people with multiples, but that seems pretty unlikely. What it is looking at, though, is how to prevent bleeds. Since most people who have CAs are not symptomatic, keeping them this way is useful, and preventing bleeds in those who have already had bleeds is essential.

There will certainly be continued research on removal techniques, and not just those that involve surgery: things like the gamma knife and other systems may improve to the point that their efficacy is sufficient to warrant their use.

Anyway, I don't know if this helps, but I think you need to understand that while we're dealing with a somewhat rare condition (see the latest newsletter for numbers, if you haven't read it yet), there is research looking for a cure. As for post-bleed effects, we're part of a much larger group of people who have had brain hemorrhages, and there's no want of research in that area.
   Sometimes you amuse me because you remind me of Kirk 5 years ago.  He was always trying to push the envelope.   We are so fortunate that Connie started the Angioma alliance.  The research didn't start until then.
    Keep fighting if it helps you, but you really just have to accept that you have a rare condition and we are all lucky that anyone looks into it.
   You are a well intentioned good man, Henk.
I often ponder why? there were 14 years between my first bleed & surgery (L. parietal) and 2nd bleed & surgery (R. parietal). Then 7 yrs. following I had a 3rd bleed & surgery in my L. temporal and not even 1 year later had a 4th bleed and surgery in my R. thalamus 3/9/10 of which I'm still recovering.

Presently there's no answers to the 'whys?' of our bleeds, so as patients we need to advocate for ourselves, support one another (cause no one else understands what it's like living with CM's) and whenever possible donate tissue and blood samples for research.
I totally agree with Kirk like with hemosiderin which is a product containing iron which is extremely neuro toxic and irritates the nerves.It also tattoes itself to the brain/brainstem etc.. and it can take years before it disolves if it ever does according to Spetzler.
You can remove brain tissue but in tight areas it isnīt as easy to do so I assume without causing damage.
Yes the brain can reroute  but brainstem as Kirk already mentioned is a whole other ballgame.
Iīm quite sure the scientists /NS would have tried it if it was possible.
And yes one should try to think outside the box but one should also then be very well informed about the anatomy of the brain and the functions of the nerves and how they travel and what they controll.
I have multiples and keep getting new oneīs all the time theyīve even stopped counting how many I have in my brain innumerable was the comment when I asked.
But as said before itīs not the amount nor the size that is the problem but the location.
And quoting the "famous surgeon" the deficits you have going into surgery are the oneīs you come out with....
I know that as a science teacher you want to find a cure as does everybody else!
But itīs a rare disease as Kirk said and as an ex.ER Nurse I know that there are priorities and weīre not on top of the list.
If you want to read on all the research that is done ,read what it says on AA and also google it on net.
For example :cerebral cavernous angioma and Spetzler or Issam Awad,Michael Lawton etc.....
And you will find tons of info what  they do know and what is unsure.
If you can and if itīs possible then ask Connie if thereīs a possibility to get the DVDīs from the 2006 family conference and also if there are later oneīs .
That would give you a bigger insight to this fickle illness....
LOL sorry Kirk no hard feelings but Vandy does remind us of a Kirk 5 yrs ago;)
Well there goes my "super glue" idea. I was hoping we could squirt some threw a needle and coat the outside of the CA.  :D  It's back to the lab in the basement.

Kidding a side this was interesting to read.

Go to the Angioma Alliance Community Hub

Go to the Angioma Alliance Forum

Go to the Angioma Alliance website