Introduction

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Introduction

Postby scorpion14 » Fri Feb 02, 2018 9:24 pm

Newly diagnosed 4mm cavernous malformation left frontal lobe. This was based on MRI and CT. Referred to a neurointerventionalist. Recommended to do a angiogram. Is this usually the next step? My neuro ordered the MRI in the first place due to headaches, mood issues, speech issues, slight vision at times. Im a long distance runner. The symptoms usually get bad after a run. Neurointerventionlist told me that these are things I'll have to deal with. I'm completely frustrated. Any advice would be appreciated?
scorpion14
 
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Re: Introduction

Postby Elizabeth » Sun Feb 04, 2018 2:26 am

Welcome,

You should check out the section for newly diagnosed people on the main site. There is lots of good information there. Angiogram or not? It sort of depends. 4mm is pretty small considering what size it could be in the frontal lobe. Size doesn't really matter on severity but matters somewhat by location. Frontal lobe is considered to be one of the "most forgiving" areas to have an abnormality in the brain. With a bigger cm, sometimes they want to do an angiogram to rule out an avm(which is a high blood flow) malformation. Interventional radiologists can treat avm by placing a coil or glue to stop them from bleeding...bleeding t that's not an option for cavernous angiomas if that's what you have. If they are not sure what you have, that's a reason for an angiogram, but from what I hear...they can get much of the same information as an angiogram with an MRA/MRV which is much less invasive. I had all of the above because mine was big (started at 2 cm grew to almost 4 cms), growing, and they suspected it might be an avm. Turned out to be a big cm and nothing more...but the angiogram was probably unnecessary. Angiogram was kind of scary but not too bad actually.

Finding good doctors can be really hard...where are you?
Also, about the running... There is a lot of disagreement on the topic of exercise...you can read the threads and decide what works for you I had always done intense high intensity high impact exercise but after my cm bled...I always felt sick with high intensity high impact. Some people run and do fine, others don't. You have to listen to your body. I was given no restrictions from my doctor. I tried to teach my son tho play hopscotch... After say 20 jumps or so...my vision went completely black. I got a bad headache, and when my vision returned it was weird for weeks...I went for an MRI the next day...it was fine...I don't jump anymore and its never happened again. I don't know...weird things happen...I just try to live as normally as I can and listen to my body.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Re: Introduction

Postby Michelle2000 » Tue Feb 06, 2018 1:47 am

Welcome, scorpion. I'm glad you found us, but sorry you have the need. I agree with Elizabeth on all counts. FInding a good doctor knowledgeable about CM can be difficult, but it is so necessary.

Also, my son is able to lift weights and he throws in track (he has a CM in his spine but had a brainstem lesion resected). He is no longer able to do any contact sports as they are too risky for the one in his spine (cervical). He does not report additional symptoms with exercise or exersion, but he was advised not to do anything that would spike his blood pressure (he has to be careful of his technique when lifting) and when they did yoga in PE he couldn't do all the positions with his head lowered.

Best wishes,

Michelle
17 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
Michelle2000
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Re: Introduction

Postby scorpion14 » Tue Feb 06, 2018 10:54 pm

Thank you for the welcome and insight. I have a appointment today, after a weekend of migraine headaches, and being persistent about having a talk face to face. My Dr. is a bit perplexed because 2 yrs ago my mri was normal and now this shows. The other day on the phone he tells me, "I don't know how long this has been there or if it will get bigger."

I need to manage these headaches a lot better, and the other symptoms. Do these usually grow / get bigger? Is it normal for some days to be fine, while others can be a nightmare with pain. Is it all blood pressure related?
I know mines at 5mm but it must have settled into a portion it shouldn't have, with the headache / issues.
scorpion14
 
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Joined: Fri Feb 02, 2018 9:14 pm

Re: Introduction

Postby Elizabeth » Wed Feb 07, 2018 7:22 am

Oh no...headaches!!! They are really common for people with angiomas. I'm not sure what causes the headaches, but a lot of people get them. I used to have really bad headaches until about my late 20s then they just went away...weird, strange, but very thankful. They told me if I had surgery, I would likely have really bad headaches... I had none...lucky I guess. But a lot of people do have them and sometimes doctors shrug them off and tell people, "cms don't cause headaches." I disagree, but I'm not a doctor. For the headaches though, you might want to ask your doctor for suggestions that might help because most commonly we advise everyone to avoid blood thinners which means no advil, no aspirin, no aleve, etc. Tylonol pretty much the only OTC med that's safe. Good luck at your appointment, let us know how it goes.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
Moderator
 
Posts: 1644
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: Introduction

Postby scorpion14 » Wed Feb 07, 2018 9:34 pm

Thank you all so much. Below are questions I asked my doctor (neuro) at yesterday's appointment.
1. Are you sure this is a cm?
Answer: We are 85% but mystified
2. Why are you mystified?
Answer: You have things that showed up on MRI but are now gone on CT.
3. What is gone?
Answer: Another lesion n per spaces / enlarged
4. If this is a cm: Will it get bigger?
Answer: I don't know
5. Will the angiogram give you any answers?
Answers: Maybe... It might
6. Why am I having migraines?
Answe: You shouldn't be there is no bleeding. He than looks at my MRI report and points to exact spots where headaches happen. I asked why did you do that. Answer: You have something there on your report but I don't know.
7. What's the treatment plan?
Answer: Try this prescription for migraine. I'll prescribe this other one to help too. Think about angio. If migraines kick in and it affects work take a sick day. Let's do another MRI in 6months.
7. That's it doctor.
Answer: I don't know. We r just trying things to see where to go from here.

Very frustrated n depressed. I've never gotten headaches like these and it's been happening off and on since a June 2017
scorpion14
 
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Joined: Fri Feb 02, 2018 9:14 pm

Re: Introduction

Postby Elizabeth » Thu Feb 08, 2018 5:34 am

Oh no!!! I'm sorry! That won't do...new doctor time...that guy/gal is lost. Unfortunately, that idiotic dialogue is all too common with neurologists. I saw 10 of them, and I finally gave up. The real answers I got were from respected neurosurgeons that specialize in cavernous angiomas. Where do you live? What did he/she give you for migraines? I don't have headaches, thankfully....so I don't really know what people use...but I think I've heard of some others using a drug that starts with an A?? Its a long word that also has a Y in it, I think....lol...sorry not helpful..something like amitriptyline??? I don't know for sure. Anyways, where are you? We will try to suggest an expert that might offer better answers.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
Moderator
 
Posts: 1644
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: Introduction

Postby Michelle2000 » Sat Feb 10, 2018 4:23 am

I completely agree with Elizabeth. Find another doctor. That dialogue has so much wrong with it. It shows up on MRI because of the unabsorbed hemosiderin (iron) from previous seepage. CT shows acute bleeds, but not old ones. It didn't "disappear" (sorry), it is just the wrong test.

You can search the forums (try the "questions about" or "living with" forums) for doctor recommendations near your location. You deserve someone who knows CM.

My son takes a low dose of topomax for migraine. It changed his life. He had 3-4 headache days a week and now he only complains every 2-3 months. The neurologist did wait quite awhile before determining that they weren't responding to normal home treatment, so you may want to start a headache diary so you have data for your doctor.

Best wishes,

Michelle
17 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
Michelle2000
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Joined: Thu Dec 02, 2010 7:40 pm

Re: Introduction

Postby scorpion14 » Fri Feb 23, 2018 11:19 pm

Thank you for the input. I am located in San Jose, The migraine medicine is supratin. Out of curiosity does anyone know if nystagmus occurs from a cavernous Mal. Since September my vision will go blurry for about 2 minutes off and on. Eye movement and than things turn back to normal.
scorpion14
 
Posts: 4
Joined: Fri Feb 02, 2018 9:14 pm

Re: Introduction

Postby Michelle2000 » Tue Mar 06, 2018 4:40 am

Yes, nystagmus is a problem for some. My son had it, but it went away after his surgery.
17 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
Michelle2000
Moderator
 
Posts: 709
Joined: Thu Dec 02, 2010 7:40 pm


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