New with questions

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New with questions

Postby Sbre » Sun Feb 25, 2018 8:18 pm

Dear Connie,

I'm new to the forum and not sure if I have the correct thread to have my query answered.

My sister has been diagnosed with a cavernoma and was advised that surgery would be too risky. Our problem is that she is eating very very little and has lost a lot of weight.

A couple of questions....

1. Can loss of appetite be associated with a cavernoma? She experiences severe dizziness when she tries to move.

2. Will these symptoms ease with time? i.e Can the sickness be addressed independently of the dizziness or are they directly linked?

we are very concerned. Any input is appreciated.

thank you,
Sean
Sbre
 
Posts: 3
Joined: Sun Feb 25, 2018 8:05 pm

Re: Angioma Community Alliance Program

Postby Elizabeth » Wed Feb 28, 2018 2:32 pm

Welcome Sean,


I moved your post here so that others might see it and chime in too.
Im sorry your sister is having a hard time. I'll try to answer...no appetite? Is she really anxious? When I get nervous, I can't eat either and I lose weight. I always try to drink smoothies even when I can't eat because food is so important. Another food I usually can eat even when I'm nervous is scrambled eggs. Try to figure out if its nerves bothering her or something else. A psychologist might be helpful if she's having a hard time coping...I know I've been there.
Dizziness? Yes, that can be a symptom depending on the location of her angioma. You said the MD said no surgery because of location...is it in her brainstem? Dizziness from bleeds there are common. I had terrible dizziness...one of my first symptoms. Mine did not improve til after surgery and about a year recovery. It was terrible, I was throwing up all the time. I finally got vision therapy which helped a lot, and I would wear sea sick patches sometimes...they sort of helped a little.
If her symptoms are really bothering her, it might be a good idea to get more opinions from experts.
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
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Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: New with questions

Postby Michelle2000 » Tue Mar 06, 2018 5:10 am

Sean,

Depending on where your sister's lesion is, it could be affecting her appetite. There is a satiety center in the hypothalamus that can turn on or off appetite. Elizabeth mentioned a lot of other things that could be causing it, as well. Brainstem lesions also can directly cause nausea and vomiting. My son would eat, throw up, and be immediately hungry and eat again. He lost weight.

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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Posts: 705
Joined: Thu Dec 02, 2010 7:40 pm

Re: New with questions

Postby Sbre » Wed Mar 07, 2018 3:41 pm

Thank you Elizabeth and Michelle for your responses.

Yes, I believe the cavernoma my sister has in in the brainstem. I do believe that she is anxious about her weight. She has already lost approximately 20% of her body weight. Her direct family are trying to see if she can be referred to an eating disorder hospital as she is not making progress at home. She is currently trying her best to work with supplement drinks. I think her dizziness is easing ever so slowly and hopefully the appetite will follow suit. That said, she seems to get sick without the usual prior warning of an upset stomach.

thank you again,
Sean
Sbre
 
Posts: 3
Joined: Sun Feb 25, 2018 8:05 pm

Re: New with questions

Postby Elizabeth » Thu Mar 08, 2018 6:03 am

I'm sorry. I know the vomiting is no fun. I've been there...lost a lot of weight and I was already thin to start so the weight lose was not a good thing for me. I think finding an expert doctor is a good idea. They might be able to help her. Where does she live?
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: 1613
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: New with questions

Postby Sbre » Wed Mar 14, 2018 3:10 pm

We are in Ireland Elizabeth.
Some progress since my last message. She was admitted to hospital last week and received new anti-sickness medication which seems to be working more successfully. I think that coupled with a release from the anxiety she felt at home due to the continued sickness. She is being discharged today and will not go to for some care and respite away from the home environment for a while. I think its positive and hopefully the dizziness will also subside in time.

thank you for taking time to respond. It has been reassuring and comforting for me during a worrisome time.

kind regards,
Seán
Sbre
 
Posts: 3
Joined: Sun Feb 25, 2018 8:05 pm

Re: New with questions

Postby Michelle2000 » Wed Mar 28, 2018 3:01 am

I'm glad your sister is feeling a bit better, and I hope she continues to improve. When my son was sick, he'd just throw up if he moved his head to the side - no real warning. He was also nauseous a lot, so they gave him ondansetron (zofran), and dramamine combined. It helped some.
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: 705
Joined: Thu Dec 02, 2010 7:40 pm


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