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Shazanne - New Member


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Hi everyone!

Shane and Zanne here.

Shane had this super duper bad headache March 3,2015 while doing a deuce which he thought was caused by eating a burger which he thought caused him a stomach ache. The headache, as he describes it be,would come from the lower part of his head/occiput and would rush up the back of his head and over to the back of his eyes. He describes that his brain feels like wanting to get out of his skull. it went away a little after a tylenol. He still had the throbbing pain at the back of his head.

March 5,2015 - during "domeatic activities" he had the same experience again. So bad that he curled up on the floor. I gave him an aspirin ( which was not a good idea because it did not help any) and had ice compress and gave him a head massage till he fell asleep.

March 6,2015 - he woke up okay still with the throbbing pain at the back of his head. He got ready for work. He rushed back tk the bed when he felt the same onset of a headache while he was about to brush his teeth. We drove to the ER. They did the CT scan And CT angio and a spinal tap. Spinal tap showed possible bleeding (2 of 4 tubes were pink) they wanted to airlift him to another hospital with neurologists.

March 7,2015 - We did end up at another hospital. They did the MRI and found similar results to the CT scan (possible brain bleed). He was given Kepra and Zocor.

March 8,2015 - the doctor said the result of the tests showed either vasculitis or RCVS. First time I heard of it. They were leaning towards RCVS than the other diagnosis.

March 10, 2015 - they did an Cerebral Angiogram. The doctors said it was a clamping of vessel in his brain and its showing more signs of RCVS than vasculitis. He does not have any vision impairment or weakness in the lower extremities. That night he got the same onset and headache again. He was given his regular Kepra and Zocor dose. I asked for an ice compress and massaged his head till he fell asleep. The pain subsided after an hour and a half but the throbbing at the back of his neck was still there.

March 11,2015 - We reported the headache again to the doctors. I guess they wanted to see if it was the same brain bleed and he had another CT scan with and without the contrast.

Basically, we looked everywhere about this RCVS and saw how little information we have on it.

Kate- how are you feeling after you were diagnosed with RCVS? How often do you experience it? Are you on maintenance medication for it?

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Hi Shane & Zanne :)

A very warm welcome to BTG !
How is Shane doing now, is he home from hospital yet?

I had pain at the back of my neck after my bleed for quite some time, I had a ruptured brain stem aneurysm and was told it was the blood dispersing.

Hopefully the links  posted under RCVS have been helpful to you both.


Look forward to hearing more from you.

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