Hopkins Follow Up and Arteriovenous malformation

Discussions about the illness, treatments, doctors, etc.

Hopkins Follow Up and Arteriovenous malformation

Postby MarylandCM » Mon Jun 26, 2017 2:39 pm

For those interested in treatment at John Hopkins in Baltimore, I have a previous thread, detailing my experience with the neurology department. The neuro's there recommended me to speak with the neurosurgeon Dr. Tamargo. I had my appointment last Friday, and he was relaxed and reassuring, stating that it is a simple cavernous malformation, and that I need only one MRI a year, then another in two years, and so on until one every five years. He said even my primary care doctor can order this for me.

I was surprised to hear this, since the neurologists at the same hospital outlined a totally different course of monitoring, which was every six months for two years, then once a year for the next five years, then spreading it out.

So I said, "well, everyone else must of been 'freaked out' about nothing then, because of my last MRI." Then I pulled out my disk and he said, Oh, let me take a look at that! He left the room and was gone for a good bit of time. He came back and said, they were correct for 'freaking out.' He said I had a significant hemorrhage, and while the most recent MRI shows the blood has reabsorbed, it was such a large amount of blood, that he wants to do an angiograph to rule out the possibility of a Arteriovenous malformation.

I was a bit discouraged to need yet another test, but he said that if it is this other malformation, another bleed could be catastrophic. That's never good to hear.

I was quite thankful for this website though, noting that you should always have your MRI with you! Along with the list of questions. Thanks so much to the volunteers that make this site happen!~
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Re: Hopkins Follow Up and Arteriovenous malformation

Postby Michelle2000 » Mon Jul 03, 2017 9:30 pm

Wow. I'm surprised he didn't ask for all of your scans from the get-go. Good on you that you had it ready. Best wishes with the next test. It's important to know exactly what is going on so you are treated properly.

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)
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Re: Hopkins Follow Up and Arteriovenous malformation

Postby Elizabeth » Tue Jul 04, 2017 3:41 pm

Wow, great jib advocating for yourself! Scary that the doctor gave recommendations without looking at the scan first. I'm so picky, I learned to never even give them the reports. I only showed them the scans...if they couldn't "read the scan" themselves then they got fired straight away, which happened several times. Mine was a very big cm and some doctors suspected an avm for me as well. I got an angiogram too. It wasn't too scary or hard, except they forgot to tell me that I couldn't lift more than 10 lbs for a week or so. My baby was 20+lbs at the time so it was something they should have told me in advance, but we worked it out. For me, it ruled out avm. Hoping urs goes well and they see what they need to give you best treatment. You can also mail ur scans to some of the other experts if you need more opinions. Best wishes!
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: Hopkins Follow Up and Arteriovenous malformation

Postby var281 » Sat Feb 24, 2018 2:54 pm

I had a pretty bad experience with JHUH regarding my small thoracic CM at T4/T5. Doctors I saw were Jallo and Wolinsky. They didn't want to help nor did they want to do anything other than expensive MRI scans. I wasted a few years going there, being told that the CM can bleed, that they were not concerned about it, and that it is impossible for it to be removed surgically due to its location, that it was small and not a big deal. They told me it had not bled or oozed and was not the cause of my problems. I had been told by many that JHUH neurosurgery was the best of the best so I took their opinion seriously. I also had the angiogram done by the neuro-interventional radiology department. The doctors administering the angiogram were more compassionate but I felt like it was a waste of money and it is not the safest test. All the angiogram did was confirm that I had a CM. The angiogram was extremely unpleasant, painful, overall a bad experience and a good way to get a lot of exposure to X rays.

I sent my information to Barrow and Dr. Spetzler agreed to remove it ASAP with a 95% probability of success. Hopkins neurosurgery sent me repeated email and had my neurologist email me about how it was dangerous, I'd be paralyzed, etc. They did not want to talk to Dr. Spetzler and they acted like they had never heard of him. It was total BS. The CM came out and I was instantly much better. There was hemosiderin blood product indicating that it had been oozing for some time. It was smaller than expected but there was more hemosiderin than expected. I wish I had skipped Hopkins and gone straight to Barrow back in 2013 when I knew I had a CM. I think JHUH are a bunch of clowns when it comes to CM. My advise is to not waste your time with them and have it sent to the best at Barrow.
T4/T5 Spinal Cord Cavernous Malformation removed by Barrow 2016, some remaining hemosiderin
small T11 Syrinx
Spinal Cord Detether in 2013
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