Cavernoma and headaches

My 42 year old daughter has been having headaches on and off since her teens, we have always been fobbed off with various vague reasons such as growing pains, stress, sinus etc. She has had a constant pain in her head non stop for months, and has now had an MRI scan, they found Cavernomas in the front left of her brain. Her consultant doesn't accept that they are the cause of her headaches and has prescribed Amytriptylene and Pro Pranolol for the pain, which are having little effect on the pain. He has referred her to a Neorosurgeon for the Cavernomas, but so far she has had no appointment. Over the past few days she has been experiencing tingling and numbness on and off in her left hand and foot. Who does she contact? Her GP? The consultant at the hospital? Or does she try to get through to the Neuro department who haven't yet seen her?

7 Replies

  • Has she tried taking paracetemol and ibrupfen?I had exactly the same symptoms to your daughter when mine was bleeding.Did the Mri show if it was bleeding?ring consultants secretary and don't give up.I had to keep ringing every stage.I started off in march with symptoms and bleeding saw surgeon in june,then saw neurosurgeon at Gammaknife in sheffield in september and had treatment 21st september.Hope this helps.Don't give up keep ringing otherwise i would not have seen anybody.

  • She had the scan in May which showed up the Cavernoma, it wasn't bleeding at that time, so this looks like it must be her first bleed as this is a new sympton, I will tell her to try the Ibuprofen and Paracetemol, and hope we can get her an early appointment with the Neurosurgeon, it is all very worrying isn't it. Thank You.

  • If she has the tingling and any new symptoms take her straight back to gp and you should request another scan.I had a ct scan first which showed up the bleed.If gp does nothing go to the hospital if it is getting worse especially if there is numbness down one side,balance problems loss of hearing and strange vision.Hope this helps.

  • The worst has happened, on Sunday midnight, she collapsed and began to have mutiple convulsions, her husband rang the ambulance and she was taken to A and E. We arrived 30 minutes later and she was unable to speak, nothing showed on a CT scan, and after an hour her speech came back. Today she went for an MRI scan, and was told she had had this cavernoma since birth, and it is so embedded into her brain it is not possible to operate. All those years of being fobbed off by the medical profession, what does it take to get them to listen to their patients?

  • So sorry to hear this. Hope your daughter makes a full recovery. I have had recent brain bleed in brainstem and have been told to take no medication that thins blood. Ie no asprin or anti inflamitories.

  • I'm sorry to hear about your daughter and that the symptoms have escalated. I hope she is feeling better. I too had the same thing at end of September, and also suffered from migraines since I was 10, to be diagnosed two weeks ago with Cavernoma's one of which had bled in September when I experienced the tingling of my left hand, loss of speech etc. To be told I've had them since birth (after 34 years) and have been feeling crappy since the bleed, it's hard to take in and accept. I feel for your daughter and her husband.

  • How do the doctors tell from the mri that it bled ? Is there a way to notice ?

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