Hope you are all ok. I’m new to this group; I came across the group when Googling about my new diagnosis. As I’m sure all of you have/had… I have so many questions and I can’t stop thinking about what may or may not happen. Heres my story:
I have had pressure like headaches for as long as I can remember and dizziness also - I thought this was normal, but since having my daughter in Aug 2017, I began to have a dramatic increase in pressure like headaches and dizziness, alongside new symptoms. In June last year, I started having visual disturbances - flashing black and white dots across my eyes and double vision (reading is quite hard now!) - so I just assumed I needed new glasses. But having seen the optician my prescription hadnt changed nor had my vision, she suggested going to my GP, for ?migraines. Whilst awaiting my GP appt, I began to lose clarity to my thought processes, and no short-term memory - literally the worst brain fog i have ever experienced. This, to me, is my absolute worst symptom, and is the reason I went to the GP. As dramatic as it sounds, I just felt like my brain wasn’t working properly - I have always been ‘on the ball’ and a ‘quick-thinker’ but now, its like I’m walking around in the dark 24/7, waiting for a light to be switched on - I know what I am trying to say or do, but everything is a delayed response, and day-to-day conversations are so draining now as I’m having to try and concentrate so hard. I find I am now very sensitive to light, and will have to hold on to things around me whilst my vision returns and the woozy feeling passes. For months when I have discussed my symptoms (pressure like headaches, literally feels like my head is being squeezed/dizziness/visual disturbances/brain fog/forgetfulness/memory loss/inability to concentrate/fatigue) people have put it down to ‘baby-brain’ but I just felt it was more than this. My GP initially treated me for migraines, all meds tried made no difference to any of my symptoms, so, to be thorough, he referred me for an MRI. My MRI scan in Nov 2018 showed a Chiari Malformation with a 15mm herniation. I then saw a Neurologist at Salford Hospital (I’m from Manchester, UK). He discussed my symptoms, and my MRI with me and stated that he feels I require surgery but that it is not his decision to make. Therefore, he referred me to Neurosurgery and requested a CSF Flow MRI, which I had last Saturday.
Do you think the Chiari malformation is causing these symptoms? And are my symptoms ‘significant’ enough to warrant surgery if the neurosurgeon agrees with the neurologist?
If I didn’t have surgery, is it likely these kind of symptons would progress?
Does anyone have experience of the waiting times of Neurosurgery appts, scan results and potential surgery in the UK?
I had an epidural with my daughter - could this have made the Chiari worse? Or at least made my symptoms worsen?
If my CSF flow is normal, is it unlikely that I will need surgery? Or is a 15mm herniation an indication for surgery?
We were hoping to have a second baby this year but obviously plans have changed whilst I await a neurosurgery opinion. But which is safer for me… to have surgery (if needed) then more babies, or to have babies then surgery? And will I have to have another caeserean section (I had an emergency cs with my daughter) and would I have to have General Anaesthetic?
Now I know about the Chiari, is there anything I can’t do? Is it ok to fly on planes?
Sorry for the essay of a message and sorry if any of these questions are daft! I just feel so clueless and the waiting in between appts when I have no idea on whats happening is driving me mad!!
Thank you so much for taking the time to read this.
Best wishes, Amy xxxx