I’m finally posting an update after my 2nd surgery, nearly a year on, so thanks for your patience while I’ve been in the slow lane! I’ve been on a rollercoaster journey with my IIH (Idiopathic Intracranial Hypertension) over the last year.
WHAT’S BEEN HAPPENING?
In June 2017 I had my second skull surgery and 4 weeks ago I had the same operation on the left. They have removed the C1 vertebrae mass on both sides to make space for the jugular vein that was squashed; preventing blood draining from my brain. I use a plumbing analogy to explain this. If you think of the veins as the pipes, you’d remove the blockage at the top first, because if you remove the top blockage beforehand, you’ll just create a bigger blockage below. This is how my surgeons work, slowly and methodically to ensure that all surgeries are exacting.
The surgeries have been difficult for us all. I’m not scared of surgery, but I worry about how my boys and Joel will handle the added pressure. This time, I’ve asked for help from the wonderful Josie Brocksom of Worry Free who gave me strategies to help me deal with my concerns and trust that Joel would be able to cope with the additional pressure, which of course he has. She has also taught me that it’s ok to rest, so this time I have let myself stay in the slow lane so that I can heal!
I’m lucky enough to be covered by private healthcare. One of the biggest perks is having a private room of course, but I love the food too! Yes, really! I’ve been waiting to show you this photo of the yummy lunch I had the day after my surgery last year. Just look how good that was! I just had to order the same this year too!
Before I continue, I wanted to address a question Joel and I get asked so often:
HOW DO WE KEEP SO POSITIVE?
As with everything in life, we have some choice. Of course, I have no control over how the IIH affects me, apart from my pain relief. However, I do have control over how I manage to stop my high pain levels, from affecting my mood. Myself, Joel and my boys also choose how much we let IIH affect our own lives and time together.
I’ve been able to share over 20 years with my best friend. Joel is affected by IIH just as much as I am. However, amongst experiencing all my of pain, constant worry and looking after us; he works incredibly hard in a tough job. He is also an advocate for carers through the Family Matters team across the whole of Lloyds Banking Group! He keeps me going and picks me up when I fall. He makes me laugh til it hurts and ensures that the children have emotional, physical and comical needs met. I couldn’t ask for anything more and I know I’m lucky to have him by my side at every step.
I can’t say all is peachy, as of course it’s not: I still cry, get frustrated and have meltdowns-I’m only human! Joel and the boys keep me fighting this disease and get on every day. We’re open with each other and share our experiences with others who just get it.. We also have the opportunity to raise awareness of how to stay positive when chronic illness affects a family, and we are both very proud to do this!
When the wizard has (my ENT specialist surgeon) removed part of the C1 vertebrae, he gets as close to the nerve as possible; without it being dangerous. This is only done for the few like me, by the team in Cambridge. They’ve developed procedures to reduce unwanted side effects and they explain everything so well. They are now developing other studies and sharing their findings with the medical world.
I was only in overnight both times and have a drain in which helps to limit the chance of having unwanted side effects. These are shoulder weakness, trouble swallowing and a hoarse voice. It’s too gross to show, but here are my post op selfies!
2016-feeling warm and puffy!
2017-Looking amazing on oxygen all night due to low SATs
The operations have both been successful. The scans show that the jugular vein is no longer under pressure and the blood can flow freely through the veins there now.
During my pre-op testing (ct venoplasty/venogram), my neuro radiologist found arachnoid granulations pushing on my stent and narrowing the flow of blood. These are normal lesions found in the venous channels that allow the CSF to flow into the venous channels. These are rarely found in the transverse sinus, however, and unfortunately they are growing around and through the stent in the left side. This explains why I started to go down hill again a few months after last year’s surgery, so I will need a procedure to stretch the stent and push the granulation back.
Unfortunately, I also need a stent in the right transverse sinus, so I have been referred back to the neuro radiologist following our check up in Cambridge yesterday. It’s good to know that we are moving forward surgically and it means that I can focus on my goal of reducing the morphine even more. The transverse sinus is part of the venous system in the brain and allows the blood to drain from the back of the head. If you’d like to know more, I have a reference to this medical article here.
Last year’s surgery was such a success that I was able to travel abroad, have a 40th birthday party and generally spend more time with my family. This is my priority and as I was able to reduce the dose of morphine I take in the morning a few months ago, I now need to get back on track with that as I come out of the other side.
I’ve big plans with my family this year and although I always suffer, it’s so important that I try and enjoy my life as much as I can. I don’t know how much I will recover from this disease. This means making the most of life NOW! This is why we decided to visit the Imperial war museum yesterday on our trip to Cambridge. This was only my second trip out of my bedroom since surgery. Although I only managed half the visit in the museum and the other half lying down in the car, I’m amazed that I was able to do tbis and even though I’m exhausted today, I’m still finishing this blog!
As it’s only a month post op, I can’t say much has changed; although I haven’t passed out since, which was happening weekly beforehand. But, I feel like I’m turning the corner now and have every faith that symptoms will continue inproving quickly, as soon. I had such a positive response from last year’s surgery, I feel positive that I will continue making baby steps towards achieve my goal to reduce my meds and increase time with my loved ones. So, I’m still in the slow lane, but I’m happy here for now whilst I carry out my job of healing, and continuing to rest!
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