Tag Archives: neurosurgeons

#IIH life in the slow lane!

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!

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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!

THE SURGERY

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!

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2017-Looking amazing on oxygen all night due to low SATs

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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.

NEXT STEPS:

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.

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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!

Please check out my social media accounts and stores if you’re inspired:

http://www.facebook.com/Tearsofstrength

http://www.twitter.com/happyiihgirl

http://www.instagram.com/paprikajewellery2

http://www.pinterest.co.uk/PaprikaJeweller

SHOPS:

http://www.etsy.com/uk/shop/ThePaprikaJewellery

 

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My life with a #raredisease. All the emotions of the rainbow.

Firstly, I can’t believe I’ve not updated since June! It’s such a busy time of year, even not being a teacher anymore doesn’t seem to slow things down. So what have I been up to?: 

MEDICALLY- I’ve been getting more and more frustrated with the pace of the baby steps. The first stage of my care plan; the Styloidectomy (the bone removed from my skull in January) has worked. It’s opened the jugulat vein that was compressed and we have noticed some improvement in my ability to engage in conversations. More recently, we have noticed that I can cope with noise a little better, even managing to enjoy the whole of  Luca’s end of year play! Previously I’d sit outside the hall and just peep in for his part! 

However, as well as the right sided issues, I also have constriction on the left hand side; the pulsatile tinnitus moving to that side to ensure I don’t forget it. So, The Wizard (my ear and skull based surgeon) passed me over to The Boss (my neuroradiologist) and it was proposed that we proceed with the plan to insert a stent to open the blockage in left transverse sinus. This won’t solve everything as I have many other growths on my skull and more compressed veins that we cannot treat yet. This is due to the delicate nature of the surgery meaning it is not currently available; politics!! So the stent is not a solution but should hopefully (please)? give me some relief.

We were not told in January that this proposal had to be signed off by a neurosurgeon and the neuro in the team refused to sign off on the stent; advising us that he wanted to go through all the tests again, plus an ICP bolt (literally a bolt surgically implanted in your skull to measure the intracranial pressure more accurately). This meant that my surgeons couldn’t agree and reached an impasse. As you can imagine, I was devastated. The temptation of even a little relief is all consuming and I have been really struggling with my journey hitting yet another stumbling block! More on this to come….
EMOTIONALLY- I’ve not been in a good place, largely due to the medical frustrations. Life with chronic illness is tough and living with constant pain; mostly unbearable. My GP (and myself) are reluctant to use anti-depressants and I’ve already  had counselling sessions that were useful to a point, however, there is not much more that counselling can offer me at the moment. We decided, therefore, that I will have to find my way through this quagmire of pain, disappointment and loss of control, myself. I have mostly felt stuck in a sink hole: floundering and becoming more and more depressed.


 It’s been a dilemma for me whether to even write this post but instinctively I know that I need to portray the whole picture and that just showing the funny side or even just the factual day to day world of chronic pain is not coherent and may be slightly misleading to you the reader. So, the truth is that there have been awful days and nights; tears, panic and complete anger at the hand I and my boys, have been dealt. I’ve mostly felt that I have been left to rot. Guilt comes with dependence on others, especially leaving my husband to have to constantly fight all my battles. 

Ultimately it comes to this: I have had to cram my thoughts with how I have been shown more love than I ever deemed possible from friends old and new. This is hard as I go through the agitated emotions that come, each time someone I’ve relied on; lets me down. But, in my heart, the truth that I have a responsibility as a mother and a wife, ensures that I delve deeper than I ever believe is possible, to find the strength to continue this journey. 


PHYSICALLY: My mobility continues to deteriorate and any slight exertion: standing up,  brushing my teeth, wrapping a gift; leaves me out of breath and completely overthrown by my extreme and debilitating hyper-sensitivity. I’ve described before the pulsatile tinnitus and it has returned with a vengeance in the past months. It takes over with any exertion, making life disorientating and sometimes impossible to cope with being around others. I fall more often than everbefore and despite havuing THREE walkers, I have still managed to break a toe, sprain my ankle and hurt my back many times. 

So we decided that I could no longer continue to live the life of a princess (or more realistically, mad woman) trapped in the tower. You may have noticed on my page Tears of strength that we have had our driveway levelled, ramps put in two exits and the most amazing invention known to mankind: a stairlift, fitted so that I can twist amd turn my way down and round the corners and get to the lounge, my new day bed and craft room. It’s been great to be able to begin to reintegrate myself into family life. The independence of being able to choose where I go has been a real boost, just when I needed one. I still hate the stairlift and try and stare it out on days spent in bed; however the relief of knowing I never have to crawl the stairs again and despite it giving me motion sickness (of course) it is a real lifeline.


 (In my day room) 

So this whole journey, especially the last few months, have been a rainbow of emotions:


Resilient throughout incessant tests of strength; waiting for answers and hoping, always hoping.

Awestruck by the enduring love, positivity and energy, portrayed by those that feed my soul.

Irritated by the subservience I have to endure; my future always balancing in another’s hands.

Nervous about the the course of time; the unknown path and destination of this unplanned expedition.

Blundering through life, unable to get my bearings; everywhere I look, a stark reminder of what was.

Overwhelmed; humbled by the kindness, love, support and encouragement, that I feel I don’t deserve. 

Weakened; as delicate as a spider’s web, if one fragile strand fails; life tumbles into fragments.

Solidarity between my allies; my circle of support and the creators of my hope. Always hope.

So to the latest news: I imagine my The Boss having this kind of impact on others….t


I think he thoroughly but professionally destroyed my neurosurgeon (nameless as not worth the effort) and has managed to delicately persuade a more senior neurosurgeon to take on my case. Now we just wait to see what happens when we see him in the next few weeks. I hope  we will be able to prove how much I need this operation and have the tiniest amount of influence over my future. Thank you for your continued support in my journey. I will update you as soon as I can and will have a nickname for my new neurosurgeon very soon!