John Hopkins Baltimore

Discussions of issues related to living with cavernous angiomas

John Hopkins Baltimore

Postby MarylandCM » Thu Apr 13, 2017 8:23 pm

Since I did not see much information about John Hopkins on the site, I thought I would share my experience. In order to see the neurology department, I needed to forward all of my documents regarding my condition to their office by fax, and about a week later, I received a call from the department. I was set up with an appointment at the end of May that was later moved up to April when a cancellation occurred.

It is a very busy department! They have kiosks that are used to check in, then you are called to a desk to receive your intake sheet. After a short wait, a intake nurse brought me back for the basics, height, weight, etc. I went back to the waiting room, and I noticed the doctors themselves come out, greet the patient, and bring them back to the exam room.

I saw a neurologist fellow, a fellow is someone studying a specific specialty in neurology at Hopkins. My fellow, Dr. Lin reviewed my history, and went over pretty much everything I have ever read about the condition. I only asked her one question from the list, because she covered all of it. She even covered things I don't care to know, but hey, there's a lot that can go wrong in there.

From there, she spoke separately with the staff neurologist, Dr. Fiagle. He came into the room, and essentially reviewed the condition again with me. He said they highly recommend a course of monitoring, but if I wanted surgery, they would make arrangements for that. I said I prefer to monitor due to other health issues. He said that since CM's can be located elsewhere, I would be getting a full brain and spinal MRI in June to check for any other possible lesions in the spine.

Dr. Lin said that I will see a fellow at Hopkins ever six months for two years, (the fellow always consults the staff neurologist), then once a year for five years, and then possible moving out to two years. I will receive an MRI also before each visit. I will also continue to see my optical neurologist to monitor my blind spot every six months. I was sad to learn I will never get the vision back.

Lastly, I will meet with their neurosurgeon just for a chat, in case anything should come up that would require surgery. I will have to update with the name, but I had looked him up and operating on CM is one of his specialties. They did say he has several CM patients that he is currently monitoring too. Overall, I was there for quite some time. I felt the doctors were knowledgeable, and interested in getting me the care I need.

I will keep you updated on further visits, but so far, I feel lucky to have a hospital like Hopkins within an hour from my home.
MarylandCM
 
Posts: 8
Joined: Mon Mar 13, 2017 12:40 am

Re: John Hopkins Baltimore

Postby Elizabeth » Fri Apr 14, 2017 5:57 am

Wow, great news! Finding good doctors can be so hard, but it sounds like you found some right away! As far as your vision, have you checked into www.Nora.cc I was lucky enough to go to a great eye MD from there. I had seen a bunch of eye MDS and they all said I was stuck with my messed up vision. I saw Dr. Garbus(past and maybe current president of Nora) and he helped me regain my vision everyone else said was lost forever. 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
Elizabeth
Moderator
 
Posts: 1631
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: John Hopkins Baltimore

Postby MarylandCM » Fri Apr 14, 2017 11:15 pm

I will definitely check on that! Thanks again for the info.
MarylandCM
 
Posts: 8
Joined: Mon Mar 13, 2017 12:40 am

Re: John Hopkins Baltimore

Postby Michelle2000 » Thu Apr 27, 2017 7:53 pm

Thank you for sharing such useful and helpful information. Knowing what to expect helps!

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
Moderator
 
Posts: 709
Joined: Thu Dec 02, 2010 7:40 pm


Return to Living With Cavernous Angioma

Who is online

Users browsing this forum: No registered users and 3 guests