Newly Diagnosed Cavernous Malformation with Optical Migrane

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Newly Diagnosed Cavernous Malformation with Optical Migrane

Postby MarylandCM » Mon Mar 13, 2017 12:54 am

Hello, In December of 2016, I was under extreme stress at work and I began to experience optical migranes, visual disturbance without pain. I had thought, stress, it will go away. Then they increased, and in February it lasted six hours with the day ending with a terrible headache. I went to a retina specialist, worried my retina was detaching. Everything good, so off to a optical neurologist, where it was found I was blind in my right eye. Just a small spot. The dr felt it may be viral, but he would order an MRI because 1% of patients have a tumor or blood clot. I was in the 1%, with a bleed in my lower left brain. I was wisked off to the ER of a local university hospital where I was told, I had a cavernous malformations. It had bleed, and now I would be observed.

I have contacted John Hopkins in Baltimore for an evaluation, but that takes some time for my records to be reviewed. I am wondering if anyone has experience at Hopkins? Also wondering about anyone else with the optical migranes? When I'm having one, I'm wondering, does this mean it's actively bleeding? Thanks C in Maryland
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Re: Newly Diagnosed Cavernous Malformation with Optical Migr

Postby Elizabeth » Mon Mar 13, 2017 4:42 am

Welcome,
My angioma was not in the same place as urs and I had surgery....so hopefully mine is gone, but I did have some strange vision things after my surgery. I wasn't sure if mine was seizure related, so I went to the doctor after it happened and they called it an ocular migraine. Its only happened to me twice. Once my vision went completely black for like 5 mins or so...the next time I was getting bright sparkly lights for about 5 mins. It was in both eyes and remained the same with my eyes opened or closed. I didn't have a headache either time. With ur location and an accompanying headache I would be wondering if it was a bleed. Make sure to avoid blood thinners just in case...no advil, aleve, or aspirin. I'm not familiar with Hopkins but I think some peoples here have been there...do a search and read the old threads...I can't remember. You can also get an opinion from Dr. Spetzler in phoenix....u can mail ur stuff and they will call with an opinion. If u can make it to Chicago, Dr. Awad is another valuable option but u need to visit him in person. Good luck!
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
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Re: Newly Diagnosed Cavernous Malformation with Optical Migr

Postby MarylandCM » Mon Mar 13, 2017 4:13 pm

Thank you for the information. I did search for Hopkins, and there were only a few threads and most were negative, that the doctors were dismissive and unhelpful. I was surprised to see that, since they are ranked number two in the nation for neurology and neurosurgery. Then again, people will generally post a negative experience before good, so I thought I would put the question out there. My partner had a cornea transplant there and the care has been outstanding. So I will post how it goes when I go in.

I have other health complications, so if I can avoid surgery, I am willing to put up with the optical migranes. I will take it day by day, and see how it goes. Thank you for the forum. It's been good to read other experiences with the conditio .
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Re: Newly Diagnosed Cavernous Malformation with Optical Migr

Postby Elizabeth » Mon Mar 13, 2017 11:10 pm

I hope u have a good experience at Hopkins. The problem with cavernous angiomas is that many doctors, even at highly respected facilities, know little to nothing about our condition. I live in los Angeles and have access to several "good" facilities... UCLA, USC, cedars, etc...I saw several doctors and most knew nothing. I ended up going to phoenix to see Dr. Spetzler because of his reputation and known expertise.

Watch and wait is sometimes to best thing to do, and sounds like u would be willing to wait it out if that's recommended. I can't say what's better, but consulting with experts will lead u where u need to go. You should check out the newly dx section on the main site...lots of good general information and I think there's a list of questions to ask ur doctor...u might want to print it out or add ur own list to it. I've found writing everything down and going in with a list is always helpful to make sure I got it all before leaving. Good luck!
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: Newly Diagnosed Cavernous Malformation with Optical Migr

Postby MarylandCM » Mon Apr 10, 2017 11:49 am

Thank you for the tip about the questions for the doctor. Surprisingly, Dr. Aldrich at U of MD was very knowledgeable about the condition. In fact, he answered all of the questions on that list when I was first seen at the hospital before I even visited this website. I did not care at all for the rest of U of MD staff. Especially the night nurse that tried to give me a shot of Heprin! So that's why I decided to seek evaluation at Hopkins. My appointment is Wednesday of this week. If I feel the dr there isn't knowledgeable, I may go back to Dr. Aldrich since he was indeed quite familiar with the condition.
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Re: Newly Diagnosed Cavernous Malformation with Optical Migr

Postby Elizabeth » Mon Apr 10, 2017 11:44 pm

That's great if you can find a local knowledgeable doctor....we all long for that and are often disappointed by what we find. As far as the night nurse with heparin, yikes!!! Good thing you knew better to refuse. As a nurse myself, they are following the doctors orders in giving out medications that were ordered by the doctor...so who ordered it??? That's the person that needs the education. And the nurse too because nurses should know if a medication is safe to be given to a patient and call the ordering MD if he/she ordered something unsafe. As a patient, its so crazy that we have to be the experts, but its true. I hope you have a great appointment on Wednesday and you feel comfortable with the direction of your care. Let us know how it goes. People are always looking for good doctors so if you find one worth recommending...let us know. I always try to pass along good referrals.
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: Newly Diagnosed Cavernous Malformation with Optical Migr

Postby Michelle2000 » Thu Apr 27, 2017 6:40 pm

Maryland,

How was your experience at Johns Hopkins? Did you get the answers you were seeking?

Michelle
16 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH, MIL, & BIL with multiples in brain and spine
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