I wanted to share my story to hopefully give some comfort to others who have recently been diagnosed with cavernoma, I vividly remember the fear and confusion in the weeks and months after my diagnosis.
My first symptoms began in May 2015, at the time I was 5 months pregnant with twins. I had a constant tingling in my right hand which was very slowly getting worse, but had been going on for a few weeks. The doctor thought it was probably carpal tunnel syndrome as this is a fairly common pregnancy side effect. Within another week the tingling had got stronger and my right cheek was now burning and my tongue felt strange. Again, the doctors and midwives thought it may just be pregnancy related, there are more side effects with twins and my son was sitting very low on the right hand (affected side) so we thought maybe he was pressing on a nerve.
The next event was that I started very slightly losing balance to the right, it was all very subtle but it had happened a few times. My mum always worries (thankfully!) so when I told her I was now off balance too she insisted we went to A & E. My doctor had referred me to a neurologist but that appointment wasn’t until September!
I had a fantastic A & E doctor examine me that day and he wasn’t giving up until he found the cause. After hours of examinations and tests he sent me for an MRI. This was very worrying as I had a large bump at this point and was concerned about side effects for the babies.
After waiting several hours waiting for the results the doctor came back and pulled the curtains around the bed, I thought then that this must be serious… He explained that I had a brainstem cavernoma, had likely been there all my life, and had recently had a medium/ large bleed.
It is difficult to say that my pregnancy definitely led to the bleed, but to me it seems likely. I have always been slim and had suddenly gained a lot of weight, the blood flow increases greatly during pregnancy and to top it off I had been prescribed Aspirin to help prevent pre-eclampsia. I have also read that the changing hormones experienced during pregnancy can be a factor, although this is still debatable.
When you are first diagnosed it is tempting to compare your symptoms with others, what I have learned is that we are all very different and a bleed in the brainstem that is a fraction of a millimetre different from someone else’s can give very different symptoms.
The next decision was a very difficult one, should we go with an early delivery for the twins in case I had another bleed? But without the babies needing breathing (and other) support due to prematurity. It was eventually decided I should have a Caesarean at 34 weeks gestation. I had to have a general anaesthetic as the doctors were concerned that if I had an epidural it would change the pressure in my spinal column and possibly affect the cavernoma.
All went well with the delivery, although I was petrified going down for the general. The twins were born weighing 4.4lb and 4.8lb which is pretty good for 34 weeks. They only had to spend two weeks in The Special Care unit being monitored.
My symptoms got quite a bit worse in the months afterwards. My whole right side was affected from tip to toe. I had a very thick tongue which lead to slurred speech, tingling and burning in my cheek . I lost the use of my right hand so couldn’t use cutlery, write or even safely hold the babies. My right arm felt very heavy and weak at the same time, my right leg and foot was also heavy and I walked with a pronounced limp for many months. My eyes were affected and would feel dizzy watching anything moving quickly on the TV or when in the car. The strange thing was throughout the whole thing I never had a headache which I believe is quite a common symptom.
I had MRI scans every three months initially, now they are yearly. The neurosurgeon didn’t think I’d had a further bleed and that it is often the case that symptoms get worse before they get better.
At the time with the fear and confusion it is easy to attribute everything to the bleed. One morning after a shower I started shaking violently and nearly collapsed. That turned out to be severe Anaemia due to blood loss after my caesarean.
Very slowly things start to improve. I walked for miles with the babies in the pushchair and the dog, I had physio which definitely helped although the neurosurgeons didn’t think it would be that beneficial, it definitely helped me.
Now, 16 months on, I am much improved. My remaining symptoms are; a slightly numb right hand that is slower than it used to be, I sometimes struggle with tasks that require dexterity. But, thankfully I can now write and do everything that I need to do which is a huge relief. My other symptoms come and go and occasionally I get a slightly heavy leg and numb feeling in the ball of my foot.
For me the hardest thing is coping with the worry, that constant assessment of my symptoms and wondering ‘is that a new or an old feeling’.
I have had acupuncture to ease the symptoms and relax me which helped with my sleeplessness. One of the most useful things I did was enrolling on a mindfulness course which helps you to live in the moment and not dwell on the past or worry about the future.
It was decided that due to the location of the cavernoma in the brainstem it is probably better to monitor it rather than operate. I went to Cavernoma Alliance’s UK’s CaverHub with Dr Paul Jarman and concluded that I had made the right decision for now which is to ‘watch and wait’ rather than have intrusive surgery. All cases are of course different.
I wish you all the best of luck on this journey and thank the Cavernoma Alliance UK for all their work and support.
Prior to her diagnosis Kate was a commercial airline pilot. Kate is attempting to get her licence back.