Experiences with

Cavernoma

I woke on day and brain had changed. 25 years years later and an unrelated MRI it was discovered I had a frontal lob cavernoma. But it was very small and some experts say incidental, other so no it is causing your problems.

I was just advised by my vascular surgery team that CLL greatly increases your risk of blood clots hence the need for a surgical intervention. I am just in the process of researching this further and was wondering if this community could shed further light on this for me. thanks

Hi me again. I had a normal ultrasound which detected a possible liver hemangioma. The hospital are sending me for a contrast ultrasound to confirm. Online it looks like an MRI is the usual way to confirm this. Is a contrast dye ultrasound as effective? Thanks.

I had an ultrasound today as my ALT levels have been elevated for the past month. The radiographer said she wants to send me for a contrast scan because it looks like I have a liver hemangioma just over 2cm in size. I asked if she thinks it’s cancer, she said she obviously can’t for certain rule this

Till his last one in March which showed epilepsy in the right front temporal region, they also did a MRI scan which showed a cavernoma. After having these tests he had another tonic seziure, which we have now started medication latramogine.

My doctor seems to think ablation is the best so that I can eventually come off anticoagulants and therefore reduce the risk with the cavernoma. Trish5

One of the doctors says it is out of the question to take anticoagulants with a cavernoma while a second opinion from a neuro surgeon says it is ok to have a low dosage tablet. Thanks Trish5

I found out about the cavernoma in 2016 but late 2023 my health declined and after an mri it was shown my cavernoma had doubled in size causing my brain bleeds.

I found some odd looking skin and discovered it was likely ichthyosis which apparently can develop in CLL patents. Anyone had any experience with this condition? Any suggestions or cautions?

Hi , happy Easter to the CLL community Can anyone offer any advise on the chances of TLS and neutropenic sepsis with V and O treatment? Are they rare or common with this treatment and how serious can they be? my consultant seems to think I am low risk for the TLS, but the sepsis seems to be bigger

Hi, all. IP6 (a form of inositol called inositol hexaphosphate readily available as a supplement) has been shown to be very anti-cancer, including at least one blood cancer, AML I think. However, as I read about how it works, it seems to indicate that it increases or activates Bruton Tyrosine Kinase

Hi , I have epilepsy due to a cavernoma on my left temporal lobe. I have suffered with epilepsy for over ten years and have found it very difficult to cope with. I have refractory epilepsy so many medication don’t work for me.

I was diagnosed with epilepsy approx 10 years ago due to a cavernoma on my left temporal lobe. The neurologists are very keen for me to have neurosurgery. I have done lots of research and have read articles on the positives and negatives.

Hi, I was recently diagnosed with a cavernoma. I've been told by the doctor that I can travel but wondering if anyone has any tips/ recommendations around travel insurance?

Do you think this cavernoma could be the reason for the auras?

Had brain surgery in 2014 (3rd Ventriculostomy) for Cavernoma on Brain Stem that had caused Hydrocephalus. Following which my previous good health deteriorated rapidly. The surgeon was and still is brilliant and supportive. Pity can’t say same about GPs.

Was diagnosed with CLL in 2018 at 45yrs old, started treatment in 2019 and just finished my 19th month of Obinituzamab, Venetoclax, and Ibrutinib trial. Had BMB and showed remaining small population of B-cells - dang! Also showed Trisomy 8? Seems very rare for CLL patient to have Trisomy 8. Oncologist

Hi everyone. I am 40 year old male in the UK and was diagnosed with CLL in Feb 2019. I have been on w&w for the entire time. I have had no real symptoms with the exception of swolen glands and fatigue. Also my Spleen is swollen. Over the last few days I'e noticed that the righ side of chin feels numb

http://ow.ly/ham450DnCvE Cavernoma Alliance UK - CAUK

I feel so alone and as though no one understands what I am going through, they pretend to listen and be concerned but then ask me questions like so what or the doctors giving you to treat the cavernoma is your eyesight still blurred?