New here and looking for answers

Concerns specific to those in the United Kingdom

New here and looking for answers

Postby anna » Sun Jul 07, 2019 5:25 pm

Hello
I'm new here and as the title already suggests, I'm looking for some answers.
Last week, I was diagnosed with a 1,5x 1x 1,2 cm cavenoma in the cerebellum. However the doctor wasn't able to properly explain the medical picture to me.
Apparently, it is surrounded by gliosis and a hemosiderin rim. I have been struggeling with dizziness, slight balance problems and tingling in the neck as well as cramp-like "asthma"attacks for two years now. These attacks do not respond to salbuthamol. My symptoms have progressively getting worse, especially with physical activity. When I asked the doctor if any of my symptoms could be linked to the cavernoma, he responded to me that there was no connection, as there had not been a hemmorhage from the cavernoma. He also said that it has been there since my birth and that the dizziness could't possibly stem from the cavernoma as I didn't have symptoms as a child. When i asked whether the gliosis and hemosiderin were caused by slight micro-bleedings, he replyed that this wasn't the case.
He described my cavernoma as asymptomatic. I wanted to know what to do about my symptoms. His suggestions was to take it easy and to not take aspirin if i were to be in pain. He told me that everyone was experiencing my symptoms from time to time and that i would just have to live with it.
I know that my syptoms are quite mild in comparison with what others have to go through. I just have a hard time believing that none of them are linked to the cavernoma in any way. I also didn't get the part with the bleeding. Obviously there hasn't been a big hemmoraghe or anything of that kind. But I thought that the hemosiderin and gliosis present with my cavernoma are signs of micro-bleeding(s), which he denied?

I would very much appreciate if someone could help me clear the matter up. It helps to know that I'm not alone :) Maybe there's someone out there with a similar experience?
Have a nice day!
anna
 
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Joined: Sun Jul 07, 2019 4:52 pm

Re: New here and looking for answers

Postby Elizabeth » Sun Jul 21, 2019 7:17 am

Welcome,


I'm sorry that you are getting answers that don't seem right. I'm not a doctor, but I agree with you. Hemosider is the ring that remains after an angioma has bled... Maybe an ooze, maybe a bleed.. Hemosiderin is old blood. Your location and symptoms seem more than coincidental. Dizziness, loss of balance are very constant with that location. Perhaps the symptoms weren't present until your angioma bled that's why they weren't present at birth. Any way you look at it... This doctor sounds confused. I'd be looking for a new doctor. I like it better when I can trust my doctor to tell me what's really going on.more opinions, that's my opinion. 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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Location: Los Angeles

Re: New here and looking for answers

Postby anna » Sun Jul 21, 2019 12:26 pm

Thank you very much for your encouraging words. I will take your advice and seek a second opinion. From what I've heard it's pretty difficult to get an appointment with a doctor who really knows all the specifics of cavernoma. It helps so much to know that I'm not alone, though.
anna
 
Posts: 2
Joined: Sun Jul 07, 2019 4:52 pm


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