Nauseous and consistent vomiting

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Nauseous and consistent vomiting

Postby Carterst4 » Sun Dec 09, 2018 9:14 pm

My husband was diagnosed with CCM in the pons of his brainstem 4 years ago and the journey has been challenging to say the least. We often feel like we never move forward, but are consistent in a cyclical pattern of additional concerns and to no avail, cannot find relief. We have been to Mayo, Cleveland Clinic, U of M, U of Chicago, Barrow, Walter Reed and our local hospital.

My husband now is vomiting almost daily and has lost close to 20 pounds the past year. Is this normal the vomiting?

We are at a loss and need to get answers.
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Re: Nauseous and consistent vomiting

Postby Connie Lee » Thu Dec 20, 2018 4:33 pm

I have not heard of anyone with a pons lesion having vomiting from the lesion alone, but I am not a doctor. I have heard of people with lesions in the cerebellum having this trouble and people with lesions in the medulla having trouble with gagging because of impaired swallowing which can lead to vomiting. Has he had a recent MRI and a visit with a gastrointestinal specialist?
Connie Lee
President and CEO, Angioma Alliance
17-year-old daughter with CCM3 mutation who has had 4 brain surgeries, T2-L3 spinal fusion
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Re: Nauseous and consistent vomiting

Postby Michelle2000 » Thu Dec 27, 2018 2:49 am

That kind of vomiting is quite distressing. My son had a pons CM that bled into the cerobellar pontine angle and caused vomiting if he even moved his head to the side, but he had many other symptoms with it.
Does anything relieve your husband's symptoms, even for awhile?
18 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: Nauseous and consistent vomiting

Postby Carterst4 » Tue Jan 01, 2019 2:07 am

Thank you both for the response and help. We do notice the vomiting often occurs when his head pain is excessive, but he also has other deficits as well, to include ringing in his ears, metallic taste in his mouth, some numbness on his left. The last MRI we had was close to a year ago, and we honestly are on the fence about having more. as silly as that sounds when we have spoke with several of the neurosurgeons we consistently have feedback with concerns of significant permanent deficits since the lesion is deep in his brain stem. His head pain is very substantial and impacts him daily our objective is trying to find a way to control his head pain. Any feedback on either of these areas would be very helpful.
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Re: Nauseous and consistent vomiting

Postby Michelle2000 » Thu Jan 03, 2019 3:30 am

Does he have sensitivity to smells? Perhaps being surrounded by a more pleasant odor could bring some relief. My son was very sensitive for awhile, leading to vomiting. They had something called "Quease-ease" that he could sniff and it helped a bit. Also, not the same thing, but I had hyperemesis when pregnant, and burning a lemongrass candle did help somewhat.
18 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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