Tag Archives: surgery

#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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IIH and skull surgery: part 2 #IIH #brainandspine

Skull Surgery

It sounds much worse than it will be. This is the next step in of my treatment plan. I have Idiopathic Intracranial Hypertension (IIH) and this is my journey,

To prepare for surgery; I’m resting; well, resting as well as anyone with needtodoitis can! I am on strict instruction to allow my body to be in the best condition possible, for my surgery on Thursday (15th June 2017). I’m also owning up now, to not fully understanding the recommended medical document, at the end of this blog. 👀

Firstly, if you are new to my blog or need a recap please read this post,, written after my first skull operation; a Styloidectomy. (I just re-read it; I’d forgotten some of this-yikes)!! Please be aware that there’s a surgery scar in case you’re squeamish.

Background

In January 2016; I had a Styloidectomy; the removal of the bone behind your ear; called the Styloid Process (red area on the diagram). My right Styloid process was removed by The Wizard; my ear and skull surgeon and one of the magical team I’m under in Cambridge. I have constricted veins in my head, mainly the jugular vein; affecting blood flow from my brain; leading to a build up of pressure in my skull. Following that op, I was able to have a two way conversation again; after two years of complete brain fog. Everyone noticed a difference, but I was still in 24/7 pain and unable to walk unaided. My memory was still poor and I still struggle with words,

img_7354At the time, we thought that the next step was to have a stent placed here. Due to being one of the patients to have these procedures; immediately after the trial group; I have to be prepared for rules changes. I had stent surgery of the left transverse sinus in September 2016, whilst they waited for their paper to be published. This is now available and they are  the first team in the world to use these methods, for this rare brain condition. You can find out more about all of this, in the ABOUT/BIO drop down menu: what is IIH?  

I’m lucky enough to benefit from what they have learnt in the trial. They found that placing a stent in the jugular vein, after removing the Styloid processs; was less effective than expected. But, once a stent is in place it can’t be moved; so patients often had the mastoid process removed, to relieve some of the pressure on the vein.

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Mastoidectomy

This led the team to the conclusion that it would be more effective to perform a mastoidectomy before stenting here. This would make room for the jugular vein to take the stent more precisely and possibly mean that stenting wouldn’t be necessary. I’ve highlighted both the Styloid and Mastoid process, in the diagram above.

I have only found articles about mastoidectomys for other conditions; as both of the surgeries used; aren’t new procedures. What the Cambridge team have done, is to think outside the box and are use tested surgeries in new ways; helping IIH patients with restricted venous outflow. I am referencing one of the clearest (and least scary) articles, to try and explain the procedure; although this is for other conditions.

This procedure is usually performed when a patient has: had infections that have caused hearing loss, tumours or for patients being fitted with a cochlear implant. The mastoid cells and process form part of the temporal bone. A mastoidectomy traditionally removes an area of mastoid cells; which which has a honeycomb structure, due to bone being formed around air pockets. However, the mastoid process is below this area; highlighted in the first diagram. This bone is denser and  connected to the C1 vertebrae, therefore attached to the top of the spine. This video explains the anatomy of the C1 vertebrae. Cervical Spine anatomy

There are many veins, nerves and muscles attached to the C1 vertebrae, which is essentially a pivot; allowing us to extend our neck and nod. The mastoid process is the outer part of the skull; attached to the occipital area and provides attachment for many muscles. Thankfully, I have complete faith in The Wizard and he’s assured me, that if anything; he’s conservative with how much bone he removes. He will drill the bone just enough; to make room for my jugular vein to work more efficiently.

Risks and Further surgery

It’s a similar surgery to the styloiectomy and has the same risks: which aren’t life threatening. There’s a possibility of having a weak shoulder/arm or a hoarse voice  following surgery. Despite the serious nature of the operation; I will be only be kept in overnight; unless there are complications. I will have a drain in overnight; used to   try and prevent side effects. In the future, I may need a stent here; it’s been the plan since the start, after all; but we have to focus on one step at a time. If you wish to know more about the anatomy and a typical mastoidectomy; please read this article

I’m sure I will be back very soon with some amusing anecdotes from our little adventure. Thanks again for stopping by; please don’t hesitate to ask questions. Remember though, that this team are the only team in the world treating patients like myself in this way; so I may not know, or be able to find the answer.

 

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My 2 year anniversary and my forever attempt (fail) to explain to others…I could have (~~~) successful surgeries but still never make a full recovery. #Ihaveiih

Ask anyone with Chronic illness when they are going to get better and you are going to get daggers! Whether you notice them or not is another matter. In this post I am going to attempt (not to fail) to help you understand what having a ‘chronic’ illness means to me; why surgical options may still not be the final answer for me and what my hope for the future is. It’s your job to try and really take in what I’m writing about and digest it thoroughly,. I’m asking you not to skim read and then comment with a ‘you’re so brave, or you’re going to be fine or worst of all: ‘wishing you a speedy recovery’!! But, in the long run, all I can control is what I write….


I have Chronic Migraine (CM). ‘Chronic’ means that I’m never going to get better from it. The definition in the UK for having chronic migraines is to have them on 15 days a month or more.  I will probably always suffer with migraines and I have found out relatively recently, that I have suffered with them since I was about 12; having spells of CM that were misdiagnosed. Then it all stopped. At about 19, I stopped drinking and changed my diet. I didn’t know I had migraines; at this point in my life. I had been diagnosed by a nutritionist as being hypoglycaemic. The diet kind of worked, but made for a very boring Fresher’s week when I started University and I became the sensible housemate (sort of-I didn’t really need a drink, truth be told) 😜 So here I was back together. Laura. And it was here at Uni that I met Joel. I had occasional attacks still, so I was slightly ragged around the edges. Joel and I needed a little help from our friends to get together but once we started our journey  there was no stopping us. We moved in together, bought a flat, got married and had our two lovely boys.

And then one day, 7 years ago, after a visit to the dentist, when the boys were young, it all fell apart again. This time, we tried antibiotics for a range of diagnoses and eventually I was diagnosed with migraines and started on preventatives. I wasn’t satisfied with my treatment as I still suffered, so I tried all sorts of vitamins, special diets, different therapists etc. I mostly worked through it, just taking time off when the first bout was undiagnosed and then a few times when it worsened and I needed to increase/change the preventative. I was managing to work with a pain level of 2-4  most days and I feel that I owe that mostly to my fortnightly visits to a cranial osteopath.Let-down migraines took me away from my family for half the weekend anyway but we didn’t know how to get off of the merry-go-round. However, my point is..


I’m still trying to put myself back together. I still have CM but now I have IIH as well; another chronic illness. Two years ago,  a migraine attack started that just didn’t let up. In February, I started getting pulsatile tinnitus (PT) and that’s when I knew that this time, it was different. I had a big battle with doctors but luckily a supportive GP. Mr A’s speciality is in PT and that is how I found him. If I hadn’t done that then I would still be being treated, unsuccessfully, for migraine. It was eventually diagnosed as a intracranial venous outflow restricton and a lumbar puncture confirmed that I did have slightly raised amounts of Cerebral Spinal Fluid, putting me on the border line of having IIH. It’s a bit of a puzzle as to why my lumbar puncture results were really quite so low, when my symptoms (not papilledema) are so severe (mostly bedbound through pain, in a wheelchair if we ever do leave the house). Now I have TWO diseases that I will never ‘GET BETTER/WELL’ from. So, as I start this blog a week after my first surgery for IIH, starting to put myself together again; I want to try and help people understand, that even if my surgeries are successful (I can’t even let myself dream it) I will still always have IIH! However, there is a chance that I might be lucky enough to go into remission and not experience any of the symptoms! If this does happen, I would still always have to watch out for any symptoms recurring.


It is 9 days since my operation and I have been wondering why it is, that when I talk about it, people seem to assume that I am going to get my old life back again? A life free of pain, where walking is as easy as talking and waking every morning, is pain free. Wow, what an amazing dream; it’s been so long I can’tremember what not being in pain feels like now. It is only a dream though. Just going through the process of being this unwell has changed me as a person! I’ll never go back to being who I was 2 years ago, but I am enjoying being more ‘like myself’ again. My close friends and family that have visited have all noticed this in me. It’s a lovely thing to hear.

But something that I don’t understand is that some people are asking me already if the pain has gone?😳 It’s days after I’ve come home from hospital; days after a surgeon has hacked into my skull and removed 2-3cm of it (not that you’d know it from the 12-15cm scar)! How could that one operation, somehow fix everything that is wrong with the wiring in my brain? Yes, I have one of the top otologists (Mr A) in the country trying to sort out my ear and skull and an immensely experienced neuroradiologist (Dr H), who has imaged every vein in my brain. Dr H is in charge of fitting my stent(s) to open up the veins so that the blood can flow out of the brain. However, since they’ve carried out all the imaging of my brain, they are concerned that there are so many narrowings in my ‘tortuous’ brain. Don’t get me wrong, my Consultants and their Drs are the most amazing team of surgeons I’ve ever met, but they can only work with what they’ve got!  However much I’ve written this, it still seems to be, that some people think I’m on my way to a cure. I hope I’m making it clearer now!


So, the plan is for me to recover from the styloidectomy, which seems to be going well; my pain level are dramativally reduced in the daytime (of course I’m still on morphine), I’ve no dizziness or nausea and the brain fog is much better. I’m keeping a daily log of symptoms and then have a review with Mr A in 5 weeks then hopefully they will decide to insert this large stent in my jugular vein, where they’ve made room for it! After my first CT scan, the team had wanted to perform a  jugular foramen decompression (drilling holes to relieve pressure in a larger area of the skull; a 4 hour op)! However, these are deemed as unnecessary risks and are now not performed at Addenbrookes hospital and won’t be for the foreseeable future. So, to sum up how I feeI; I am hopeful that it may well be possible for me to live with lower pain on a constant basis and I still hope that my mobility will improve, but I’ve seen no evidence of this yet. My worries are that if I still have areas in the skull that they thought needed surgery; that now cannot be done; will they be able to fit enough stents for me to make a FULL recovery from all of my symptoms and what will happen to my migraine condition once my IIH is more controlled? I will also probably always have some form of migraine condition. Luckily, I feel that I can, at some point, discuss this with one of my many doctors.

So, there is progress and I have to try and believe I can get better whilst being told that none of the treatments are guaranteed to work. However, now I’ve had this operation the stakes of the stent working must have improved. I just don’t know though until I talk to Mr A in 5 weeks time. In the meantime, I have loads of people saying to me ‘when you get better you can,…. , and I sometimes even find myself saying it, but the thing is, I just can’t think like that, even though my GP seems to be a bit optimistic as to my prospects at getting to be up and about and possibly maybe even back at work in a couple of months! I don’t mean to sound like I don’t have faith in this process, I’ve made it clear that I do; I’m just being realistic not defeatist. It could take me years to get all the stents I need fitted. Even if I only need one, which would be amazing, I will still need rehabilitation. This fight is one full of the need for patience and time.


Finally, I want to say thank you to everyone who has taken the time to read my blogs and try and understand my situation. I can only thank you for trying. No one (even another iih patient) could understand my journey fully. I’ve waited 2 years for this phase to start and I’m incredibly grateful for every well wisher, please don’t misunderstand my words. However, I’d really appreciate not hearing that ‘I’ll be back to my old self soon’ or even that you ‘hope I’ll be pain free very soon’. Those things are REALLY UNLIKELY to happen. I appreciate the sentiment behind everyone’s words of encouragement; I’d just love it if you wished me happy times with my family; noticing that I’m more lucid, wishing me less/lower pain or just that you wish us peace and light on our journey. Thank you again for all your ongoing reassurance. I really couldn’t do this without your support and guidance through these hard times. I hope I’ve managed to explain to you that I am extremely unlikely to make a full recovery but that with your encouragement; I know a better future is on the horizon!

Lots of love to all, Laura x

THE #operation: How it’s only the beginning and that more operations are highly likely. Alternately titled #IIH and the #styloidectomy.

(Warning for the squeamish: this blog does include image of wound/scar)
It’s pretty scary stuff knowing they’re operating there. Yes there, in your skull; removing a piece of the actual skull. Scientifically a piece of bone called the styloid process, hence the name styloidectomy. The styloid process is a bone on the outside edges of the skull that is small and can actually move without it causing any problems, however, often this movement can be the part of the problems for a small number of people. Many of these people have ended up under the care of my consultants, who look at things a bit differently than the rest of the world! They look at the benefits that the patients identify verbally, as well as the numbers after the initial tests for IIH. (See previous posts) here

In my case, my LP opening pressure was relatively low but I instantly felt better and that continued for 5 days. When I had venoplasty the same thing happened. They can see from my scans that my intracranial veins are tortuous and I have many areas of compression. My styloid process had my jugular vein and some nerves  wrapped around it. Perfect for a really nice game of operation! 

  
 

(They really did have buzzers to warn them if they touched my nerves-⬆️⬇️⬅️➡️🔔🔕)! 😭😭 

  
 

The purpose of the styloidectomy is so that they can fit a large stent into my jugular vein in that area and now into the gap left by the removal of the bone. The diagram shows where that bone is so that you can picture it. Mr A has removed most of that bone, as you can see, it’s quite easy to get to; sticking down like that! He only took about 45 minutes to remove it. However, I can assure you that the hole he needed to make to get to that bone was much LARGER and I have a massive scar to prove it. 

  

Immediately after surgery I was in less pain (I guess I still had GA coursing through my veins), but I was put on reduced pain meds by a junior doctor who had different ideas to the anaesthetist and Mr A who were both happy for me to stay on my high doses of prescribed pain relief. Anyway, he also hadn’t signed off for me to have my morphine either that night! Grrr!! Amazingly, I managed on oramorph and slept most of the night and was woken at 6am by the nurse who had collared the dr and made him sign it off for me to have the morphine tablet with my other meds. After seeing Mr A at 7:20am!!!!!, the nurses removed the drain and cannula and discharged me without any dramas.

Next came the most surreal part of the experience; the journey home. Driving home and sleeping in the car was more bearable than I thought it would be, but we had to stop to use the facilities and get lunch. Joel wheeled me round to the disabled toilet- first we went down in the lift to the main loos as we were just trying to be quick, but they were on the main floor-so like a comedy act we went straight back up in the lift, in a daze. When we finally got to them, you needed a radar key to use them! This is the first time in my life, I’ve ever actually needed one! Once I actually got in the loo, I pulled down the rail and the panic alarm cord was wrapped around it; unreal! Quickly, Joel wheeled me out whilst we both giggled and I tried to cover my ears (that didn’t have my usual ear plugs in), so were fiercely objecting to the piercing buzzing! Finally I managed to actually go to the toilet, so Joel got me back to the car before I had a meltdown in the middle of Clacket Lane services! Needless to say, we ate lunch in the car. 

I’m so lucky to have my best friend to help me through every step of the way; not only major surgery but, to keep me laughing through it all; even toilet fiascos in a service station! 

  
Once home, I realised that the journey from the car to the stairs was a lot further than I’d managed so far; it felt like a trek to the South Pole! I was shaking all over when I got to my stool at the bottom of the stairs, but all I could think about was the fact that I still had to climb The Stair Mountain! Those stairs looked like impending doom, but all I wanted was my safe place; back in my bed! So here we were again;  this was going to be killer. I just knew. I prepared myself as best as I could. Oramorph and Joel to help me on my way (no migracaps allowed obviously) and I began the expedition. Oh. My. It was probably one of the worst climbs I’ve ever done. Every movement of my body hurt (my wound and my head) and having my head forward/down in crawl position was the worst position possible, but my legs were far too weak to even try to climb upright. I did however crawl as quickly as I could force myself to go, in between yelps. 

Finally I to came the realistion that I wasn’t going to be able to sleep on my side of the bed during my recovery. I usually sleep on the right, therefore my bedside table is on the right. But I can’t turn to the right to reach for things! So, once I’d recovered from the stair climb enough to pop to the loo, Joel moved all the pillows and then switched the bedside tables/cabinets. Now the left is where I will stay for my recovery. At the moment, all I can do is eat, sleep and watch TV. 
  

As you can imagine, I was absolutely exhausted by this point and slept all night and Saturday morning but by the afternoon I had started to be in more pain again. By. Sunday morning I was beginning to panic about detoxing at the same time as trying to heal from surgery-it just didn’t seem right. I asked on my FaceBook page and a couple of friends agreed with me and so did Joel. The consultants and my GP had all said that I’d stay on my medication cocktail and reduce it as I’m able to. I did feel torn because I wanted to stay off of the naproxen and I’m desperate to come off of morphine but I knew I had to stay on what I was on pre-op because the lower level of drugs just weren’t touching the pain and the pain from the op is generally lower than the pain I experience most days! Well, I guess it’s not that odd, this surgery wasn’t meant to fix ALL my pain and symptoms. It was primarily to make space for the stent. However, it can have an impact on symptoms which is why I’ve been asked to keep a symptom diary for a fortnight. 

Writing this has been tiring (although I have taken my time and done it in bits) but very cathartic and I think I needed to do this to get it all out of my system. I hope that it shows you why this isn’t going to fix everything, an insight into what it’s been like; as usual, the laughter and the tears and an understanding of what I’m going through at the moment. Thank you for reading and as always, Im sharing for understanding and awareness-not sympathy!