Confused

So, I found out last Thursday that I had a bleed from what the doctor is calling a venous malformation, or a cavernous malformation.. Everything I am finding on Google groups it in with AVM, but is it different? Interested in this site, but not sure if I am in the right place.. I'm a 26 F, with 2 kids.. Definitly freaked out and interested in others experiences with this..

Thanks!

Steph

Where is your venous malformation? Does it hurt? Mine is also a venous malformation in the back of my right thigh. It is approx. 1" big. Read my blog under my name, Ana D’Agord from Panama.

HI!
I have an avm, on the brain left occipital area…Mine doesnt hurt…I was instructed By my neurologist not to let my high blood pressure go high…if that happend, I could have a bleeding…By the way the first time I had a headache painfull thats the way the I found out i have and avm…Please take care of yourself…Good luck…God Bless…

Mine is in my left brain, in the pareital area. I don’t think mine hurts, other than the headache from the bleeding. Also, right now, the blood is being re-absorbed, and the doc said some of it got into my nervous system, causing inflamation, so I was having tenderness all over my neck, chest, ribs, and back…

Hi Steph. you are certainly welcome here. Here is a section that kind of explains the difference between an AVM and a cavernous malformation. They are very similar:

“Cavernous malformations - These lesions are formed from groups of tightly packed, abnormally thin-walled, small blood vessels that displace normal neurological tissue in the brain or spinal cord. The vessels are filled with slow-moving or stagnant blood that is usually clotted or in a state of decomposition. Like AVMs, cavernous malformations can range in size from a few fractions of an inch to several inches in diameter, depending on the number of blood vessels involved. Some people develop multiple lesions. Although cavernous malformations usually do not hemorrhage as severely as AVMs do, they sometimes leak blood into surrounding neurological tissues because the walls of the involved blood vessels are extremely fragile. Although they are often not as symptomatic as AVMs, cavernous malformations can cause seizures in some people. After AVMs, cavernous malformations are the type of vascular lesion most likely to require treatment”. From http://www.ninds.nih.gov

Thanks for the info, James! There is so much to learn about all this… Not sure exactly where I fall in the spectrum of vascular lesions… Guess i’ll know more after my angiogram…

James Larken Smith said:

Hi Steph. you are certainly welcome here. Here is a section that kind of explains the difference between an AVM and a cavernous malformation. They are very similar:

“Cavernous malformations - These lesions are formed from groups of tightly packed, abnormally thin-walled, small blood vessels that displace normal neurological tissue in the brain or spinal cord. The vessels are filled with slow-moving or stagnant blood that is usually clotted or in a state of decomposition. Like AVMs, cavernous malformations can range in size from a few fractions of an inch to several inches in diameter, depending on the number of blood vessels involved. Some people develop multiple lesions. Although cavernous malformations usually do not hemorrhage as severely as AVMs do, they sometimes leak blood into surrounding neurological tissues because the walls of the involved blood vessels are extremely fragile. Although they are often not as symptomatic as AVMs, cavernous malformations can cause seizures in some people. After AVMs, cavernous malformations are the type of vascular lesion most likely to require treatment”. From http://www.ninds.nih.gov

Hi Steph,

A cavernous malformation is not the same thing as an AVM. A CA has a low blood flow, whereas an AVM has a higher blood flow, for one difference. But they are kind of in the same category of veinous type malformations.

Have you been to the website for the Angioma Alliance organization? http://www.angiomaalliance.org/

They have a lot of good information and you may be able to find some answers to your questions there too.

For the first 4 years after my bleed I had a mis-diagnosis of cavernous angioma (also called cavernous malformation). I spent a good bit of time at that website and got to know a few members of their forum. They have an annual conference that I attended just before I found out that what really bled was an AVM. There really is a good deal of information on their site, as well as a great group of people for support and information on their forum.

As a matter of fact, it was a member of that organization who told me about the Dr. at the Barrow Neurological Institute who removed her spinal cord AVM, which led me to send my stuff to them and that’s how I got the correct DX.

Good luck to you!

Thanks for the site, Tori! I’m a researching junkie right now… It is frustrating right now, just going through all the dr. appointments, and not really learning anything new. Hopefully i’ll find out some more soon. That’s good that they got you the correct diagnosis after all those years… Was it symptoms that led them to do further testing?

Tori said:

Hi Steph,

A cavernous malformation is not the same thing as an AVM. A CA has a low blood flow, whereas an AVM has a higher blood flow, for one difference. But they are kind of in the same category of veinous type malformations.

Have you been to the website for the Angioma Alliance organization? http://www.angiomaalliance.org/

They have a lot of good information and you may be able to find some answers to your questions there too.

For the first 4 years after my bleed I had a mis-diagnosis of cavernous angioma (also called cavernous malformation). I spent a good bit of time at that website and got to know a few members of their forum. They have an annual conference that I attended just before I found out that what really bled was an AVM. There really is a good deal of information on their site, as well as a great group of people for support and information on their forum.

As a matter of fact, it was a member of that organization who told me about the Dr. at the Barrow Neurological Institute who removed her spinal cord AVM, which led me to send my stuff to them and that’s how I got the correct DX.

Good luck to you!

Steph,

Yeah, being armed with as much information as you can get is essential.

My symptoms hit suddenly. One night I’d gone out to have dinner with a friend, after having not felt very well all day at work. Just as I was sitting down to the table at the restaurant I suddenly felt ‘something’ - to this day it’s hard to describe. I felt like something had happened to my back and my left leg. I felt the left side of my back and it was so incredibly numb. I kept touching my left side, all the way down my leg and foot, and everything was numb. When I tried to stand up I almost fell onto the floor, and that’s when I discovered the weakness in my left leg and foot. As the hours progressed I began having terrible pain - from just above my breast on the left side and all the way down. I also had a band of tightness and pain around my chest.

Like an idiot I first went to an urgent care instead of an emergency room. I had no idea what was happening to me. Naturally they were checking out my heart, even though I kept telling them it wasn’t ‘that kind’ of pain in my chest. From there it went downhill at the UC. They had no idea what to do. So they told me to contact my primary care Dr. if the symptoms continued. Now I know they should have sent me to an ER, or I should have gone straight there from the UC.

I called my Dr. the next day and they gave me an appt. right away. When she examined me and I told her what had happened (still had all the symptoms, and still do) she was very concerned, alarmed. She set up an MRI, thinking it might be MS, and from there the testing to rule in or out everything from MS to Lyme disease to transverse myelitis began. It took two months to get a dx of cavernous angioma.

And it’s been quite a trip since then. I was so happy and relieved when I got the correct dx (not even knowing, of course, that I’d had a wrong one for four years), especially since it seems like every time I see a Dr. around here I’m the one who educates them about my condition. These spinal cord AVMs and aneurysms are rare and I don’t encounter many Drs. that know much about them.

As I said before, during the time I thought I had a CA, the Angioma Alliance was such an incredible source of information, support and camaraderie for me. Connie Lee, the woman who founded the organization, and so many of the other members there gave me so much support when I found out I might not have a CA and I was getting set up to go to Barrow for my first angio.

When will you be having your angiogram Steph?

Steph C. said:

Thanks for the site, Tori! I’m a researching junkie right now… It is frustrating right now, just going through all the dr. appointments, and not really learning anything new. Hopefully i’ll find out some more soon. That’s good that they got you the correct diagnosis after all those years… Was it symptoms that led them to do further testing?


Tori said:
Hi Steph,

A cavernous malformation is not the same thing as an AVM. A CA has a low blood flow, whereas an AVM has a higher blood flow, for one difference. But they are kind of in the same category of veinous type malformations.

Have you been to the website for the Angioma Alliance organization? http://www.angiomaalliance.org/

They have a lot of good information and you may be able to find some answers to your questions there too.

For the first 4 years after my bleed I had a mis-diagnosis of cavernous angioma (also called cavernous malformation). I spent a good bit of time at that website and got to know a few members of their forum. They have an annual conference that I attended just before I found out that what really bled was an AVM. There really is a good deal of information on their site, as well as a great group of people for support and information on their forum.

As a matter of fact, it was a member of that organization who told me about the Dr. at the Barrow Neurological Institute who removed her spinal cord AVM, which led me to send my stuff to them and that’s how I got the correct DX.

Good luck to you!

Wow, that must have been terrifying! Especially getting so much run-around. I looked at the site, and it really did give some good information on the CM’s… Seemed to go a little more into them. A lot of what I have read has focused on the AVM’s, and when it comes to CM’s or VM’s, they basically say what they are, and that they rarely bleed. Kind of leaves me feeling confused, like mine bleed, so what now? It also says if it bleeds the dr. will discuss options, but mine aren’t really speaking about it until they have a difinitive diagnosis.

:frowning: I should have my angiogram within the next week. My post angiogram visit in on the 19th, and the hospital is supposed to set it up before then. Hopefully will schedule it tomorrow. I’m ready to get this thing figured out. I feel really lucky to not have had the severe neurological symptoms. However, it is kind of annoying how the dr’s are just rushing me through… I don’t know if they even listen to me… Today we went through my symptoms at the beginning of the appointment, and when we were leaving he said “so you feel back to normal now, right”? And I’m thinking, not even close… Oh well, I guess that’s the way dr’s can be sometimes… If something isn’t painfully obvious, they don’t seem to address it. Anyways, sorry for the vent… And thank you, Tori, for the information and kindness. I know i’m not technically in the same group as everyone here, but this site has been a huge help…

Steph

Tori said:

Steph,

Yeah, being armed with as much information as you can get is essential.

My symptoms hit suddenly. One night I’d gone out to have dinner with a friend, after having not felt very well all day at work. Just as I was sitting down to the table at the restaurant I suddenly felt ‘something’ - to this day it’s hard to describe. I felt like something had happened to my back and my left leg. I felt the left side of my back and it was so incredibly numb. I kept touching my left side, all the way down my leg and foot, and everything was numb. When I tried to stand up I almost fell onto the floor, and that’s when I discovered the weakness in my left leg and foot. As the hours progressed I began having terrible pain - from just above my breast on the left side and all the way down. I also had a band of tightness and pain around my chest.

Like an idiot I first went to an urgent care instead of an emergency room. I had no idea what was happening to me. Naturally they were checking out my heart, even though I kept telling them it wasn’t ‘that kind’ of pain in my chest. From there it went downhill at the UC. They had no idea what to do. So they told me to contact my primary care Dr. if the symptoms continued. Now I know they should have sent me to an ER, or I should have gone straight there from the UC.

I called my Dr. the next day and they gave me an appt. right away. When she examined me and I told her what had happened (still had all the symptoms, and still do) she was very concerned, alarmed. She set up an MRI, thinking it might be MS, and from there the testing to rule in or out everything from MS to Lyme disease to transverse myelitis began. It took two months to get a dx of cavernous angioma.

And it’s been quite a trip since then. I was so happy and relieved when I got the correct dx (not even knowing, of course, that I’d had a wrong one for four years), especially since it seems like every time I see a Dr. around here I’m the one who educates them about my condition. These spinal cord AVMs and aneurysms are rare and I don’t encounter many Drs. that know much about them.

As I said before, during the time I thought I had a CA, the Angioma Alliance was such an incredible source of information, support and camaraderie for me. Connie Lee, the woman who founded the organization, and so many of the other members there gave me so much support when I found out I might not have a CA and I was getting set up to go to Barrow for my first angio.

When will you be having your angiogram Steph?





Steph C. said:
Thanks for the site, Tori! I’m a researching junkie right now… It is frustrating right now, just going through all the dr. appointments, and not really learning anything new. Hopefully i’ll find out some more soon. That’s good that they got you the correct diagnosis after all those years… Was it symptoms that led them to do further testing?

Tori said:
Hi Steph,

A cavernous malformation is not the same thing as an AVM. A CA has a low blood flow, whereas an AVM has a higher blood flow, for one difference. But they are kind of in the same category of veinous type malformations.

Have you been to the website for the Angioma Alliance organization? http://www.angiomaalliance.org/

They have a lot of good information and you may be able to find some answers to your questions there too.

For the first 4 years after my bleed I had a mis-diagnosis of cavernous angioma (also called cavernous malformation). I spent a good bit of time at that website and got to know a few members of their forum. They have an annual conference that I attended just before I found out that what really bled was an AVM. There really is a good deal of information on their site, as well as a great group of people for support and information on their forum.

As a matter of fact, it was a member of that organization who told me about the Dr. at the Barrow Neurological Institute who removed her spinal cord AVM, which led me to send my stuff to them and that’s how I got the correct DX.

Good luck to you!

Steph, I jump in and out of AVM Survivors website, I have been told that my AVM is a Cavernous Hemangioma and between the surgeon who did the surgery and the pathologist who diagnose it and a doctor who I had a second opinon with all dis-agree about what it is. Since my surgery where my Right Temporal lobe was completely removed because of the malformation. I have been to several doctors who look at the mountain of paperwork (my medical records) between The National Institute of Health and Johns Hopkins Hospital. I ask doctors who is right? And what is the malformation? The answers I have
received are frustrating the doctors only reply with “I don’t want to answer that I only want to get your seizures under control.” FRUSTRATING! This link has been very helpful to me in the discription between the different malformations in the brain. Hope it helps you:

http://www.brain-aneurysm.com/cm.html

Also this looks like a interesting site, I have not had time to look around the site but any information is helpful.
This site be might helpful for people around the world because this is a hospital in India:

http://irtreatment.org/

Good information! Thanks for sharing the links!

Looking for now said:

Steph, I jump in and out of AVM Survivors website, I have been told that my AVM is a Cavernous Hemangioma and between the surgeon who did the surgery and the pathologist who diagnose it and a doctor who I had a second opinon with all dis-agree about what it is. Since my surgery where my Right Temporal lobe was completely removed because of the malformation. I have been to several doctors who look at the mountain of paperwork (my medical records) between The National Institute of Health and Johns Hopkins Hospital. I ask doctors who is right? And what is the malformation? The answers I have
received are frustrating the doctors only reply with “I don’t want to answer that I only want to get your seizures under control.” FRUSTRATING! This link has been very helpful to me in the discription between the different malformations in the brain. Hope it helps you:

http://www.brain-aneurysm.com/cm.html

Also this looks like a interesting site, I have not had time to look around the site but any information is helpful.
This site be might helpful for people around the world because this is a hospital in India:

http://irtreatment.org/