A very long awaited update – having major surgery soon.

I’ve been meaning to write this for quite some time, I’m really not very good at keeping up with this whole posting frequently thing anymore it seems – but was I ever?! To say a lot has happened since I was in hospital under my GI doctor in June is an understatement, and a very long story. From discharge on the nutritional drinks I continued to go downhill, loosing weight rapidly symptoms just worsening and not able to tolerate more than 800 calories of the drinks a day, and the amount I could tolerate of them was continually decreasing. Bed bound and needing a wheelchair for a combination of reasons in order to leave the house, which was generally only for doctors appointments. Constant abdominal pain, nausea and many other different unexplained pains and symptoms. By August I had lost 20kg since the beginning of April and was very underweight. However, in August I also found out what was wrong…

I have a couple of very rare vascular compression syndromes:
– Superior Mesenteric Artery Syndrome (SMAS), to simplify this is where the 3rd part of the duodenum (first part of the intestine) is compressed in-between the Superior Mesenteric Artery and the Abdominal Aorta. Which makes eating incredibly problematic as there is not much space for anything to get through your duodenum from your stomach.
– Nutcracker Syndrome – yes this is a real thing and yes this is actually its name. Nutcracker Syndrome is where your left renal vein is compressed in-between your SMA and Aorta. For me this has also caused Pelvic Congestion Syndrome due to the blood flow issues with having a compressed left renal vein. Both of these conditions cause me a significant amount of pain and problems too.

By September I just couldn’t keep going as I hadn’t been able to sustain myself nutritionally on the elemental drinks, I was continually losing weight and was down to only being able to do about 200-300 calories a day of them. I was admitted to hosptial under my GI again for him to try and stabilise me. I ended up having to have a nasojejunal tube feed put in, which actually ended up being a completely horrific experience of placing the tube. I ended up having to have it done in radiology rather than endoscopy which meant I was unable to have any sedation. It unfortunately was not a simple or quick procedure due to my compressed duodenum, it was incredibly painful and long, involving a lot of crying, my whole body shaking and passing out at the end. I was on the NJ tube for a week however I was not able to tolerate it, whilst feeding it caused me a significant increase of pain that was not bearable, and it was causing me a lot of tachycardia when on the feed too. I ended up having to be taken off and the only option was to put me on Total Parenteral Nutrition (TPN). TPN is IV nutrition which goes in through a central line (I have a PICC line), it completely bypasses the GI system, providing you with nutrition straight into your blood stream, the end of the catheter sits just outside the heart in the Superior Vena Cava. The fact that it means no nutrition is entering my GI system gives me relief from the increased amount of pain and symptoms I have when I have anything going in there.

We did some tests to confirm my diagnosis with another scan in order to send it to an experienced vascular surgeon. I met with the surgeon and really liked him, he was easy to talk to, understanding, I liked what he proposed and he had a sense of humour! He wanted me to have an angiogram and a venogram to assess things a bit further before discussing next steps. Not a pleasant test to have done, especially when you end up being able to feel the entire venogram happening inside of your abdomen – very painful and uncomfortable! Not to mention having to lie completely flat and still for 5 hours afterwards which is not Ehlers Danlos Syndrome friendly in the slightest, my unhappy and unstable joints were screaming at me in pain for the entire 5 hours begging me to move them.
The scan showed it all clearly and we went ahead with planning surgery to fix the SMAS and Nutcracker.

I’ve now been in hospital for the past 10 weeks on TPN waiting for surgery. Have had several complications including sepsis, and ongoing very abnormal haematology blood counts and liver enzymes through the roof. The last two being unrelated to the sepsis, and deemed incredibly odd to have happened for several different reasons. I had the lipids in the TPN reduced and switched to the old type as my liver enzymes at one stage went up to 37x the normal value. My haematology blood counts I ended up with thrombocytopenia and low WBC, RBC and Haemoglobin. Though platelets being the worst and were dropping each day, there is still no clear explanation for this, but it most likely is due to the TPN for some strange reason.

We have had to try and re-stabilise my PoTS prior to surgery to make sure I am safe enough for it with the anaesthetic and also post op. My PoTS has been getting progressively worse pretty much since I came off the medications that kept it stable, which was about a year and a half ago. Initially after coming off it wasn’t too hard to cope with, but things just started getting worse and worse to become in a really awful state. I’m back on two medications, which I was on previously, however they are not effective enough and I’ve got some very strange things going on with it all too, my PoTS professor did want me to get checked over by cardiology prior to surgery as well.
I have also had some incredibly weird things going on with my headache too, but don’t know what is going on with that and hopefully we can figure that out more once I have recovered from surgery for the compression syndromes.

Surgery is imminent, I am having two procedures in one operation. Vascular surgery to transpose my left renal vein and gastrojejunostomy for the SMAS to bypass the compressed section of the duodenum. Having surgery will hopefully allow me to eat again and relieve me of all the pain and symptoms that both these conditions cause. I have two very experienced surgeons and an incredibly supportive GI doctor and I feel completely comfortable with the plan. Just keeping my fingers crossed that it all goes smoothly and that I will be able to sustain myself nutritionally in order to go home, as I need to get off of TPN in order to go home from here. So fingers crossed I will be able to and will be home for Christmas!

It’s been a very long hospital stay, however I actually can’t believe it’s been 10 weeks. I’ve been incredibly lucky to not only be under some amazing doctors but to also have been looked after by the most incredible and lovely nurses I have ever met and I don’t think I will ever meet any as great as them all again! And despite pain and feeling really unwell, distraction in the form of incredible nurses to chat to, laugh and joke with has truly been the best medicine. I have managed to maintain being completely mentally stable, upbeat and positive – and I am very proud of myself for that.

Will write more about everything and my recent experiences once I’m able to after surgery.

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5 years ago…

5 year ago today (30th September – is actually the 1st October now as I publish, oops!)  I was rushed to the hospital after a very large overdose. I was done, couldn’t do it anymore, I didn’t want to live in pain for the rest of my life, I just wanted it all to be over. It was a large overdose and I had a lot of other medications in my system too as they were my regular meds. I don’t know how long it was between taking the meds and falling unconscious, but I don’t think it was long. Most of the rest is a complete blur, my family found me, I don’t know how soon after it happened but I was in a bad way. They didn’t want to wait for an ambulance as often ambulances there would take forever to turn up, so they carried me down the stairs and into the back of the car. My Dad ran every red light to get to the hospital as fast as possible, my mum was sat in the back slapping my face to try and keep me awake. All I remember is being slapped and me telling her a few times to ‘fuck off and let me die’ before slipping unconscious again. From here I don’t remember much more just a couple of brief flashes in and out of consciousness. My t-shirt being ripped open in A&E, a porter praying over me in the elevator, a catheter being inserted. They put a tube down my nose for activated charcoal but don’t remember that bit at all. I was unconscious in the ICU for quite a while before I finally came to late the next day I think and then I spent another full day in ICU before a night on a ward as well. Other than these few brief details I do not know what else occurred and I don’t bring it up with my family to ask about it. I don’t want them to have to remember it so vividly and live through it again in their mind.

It feels like that was a lifetime ago, that it was a different person. I’ve been in somewhat bad and suicidal places since, but nothing as severe as how suicidal I was before that attempt and haven’t had any plans since my attempt 5 years ago. Despite the continued pain and illness the past 5 years, I’m glad I survived and I don’t want to repeat that experience ever again. And yes there have been bad times since and lots of pain but I’ve had good times too, some happy times and time spent laughing. I like laughter and sarcasm and turning things into a joke, often this can actually help me cope. I have a great sense of humour and feel that if I didn’t have one, what would I have left? It’d be pretty god damn miserable if I couldn’t see the funny side to things and wasn’t able to laugh at myself and at things in life, which is how it has sometimes been in previous years.
I thought I may feel a bit weird or emotional today about it all, but actually I feel okay. I feel happy I’m still here and that luckily 5 years ago my attempt at taking my own life did not succeed.

Currently I feel very stable mental health wise to be honest. I did have a brief struggle earlier in the year with the whole failed ONS situation, but I’m doing much much better mentally now. Which was helped by changing back to my psychologist of 4 years after having a brief break where I had to see the headache psychologist after ONS surgery, which wasn’t right for me. I feel upbeat and positive, right now I feel like I’m fed up of being miserable as it doesn’t help. Which is a big achievement for me, especially given I’m actually very unwell at the moment. I’ve actually been in hospital the past 2 weeks. But despite the pain and being very sick I still feel positive, able to see the bright and funny side of things, to laugh and to joke. I’ve got an excellent team of doctors, I feel positive and optimistic about everything.  I will write more about it all soon, when everything is all sorted out. I’m in good spirits despite everything, which is pretty revolutionary for me.
However I really need to stop being in hospital on the 30th September. Three years out of the past 5 I have been,  last year was my ONS surgery – can you believe that was a year ago?! And now this year too, which is unrelated to my NDPH or my mental health.

 

P.S have majorly conquered my doctors appointment anxiety currently and am feeling very proud of myself about that.

 

Stimulator removal agreed!

I’m a very grateful to have a neurologist and his team who are incredibly supportive and who I genuinely believe care (as believe me not all the ones I’ve seen are like that in the slightest), they have tried very hard to help me since I started seeing my neuro back in 2011. Unfortunately all attempts have not worked out, my headache being unresponsive and resistant to all treatment; and as you know this latest one has caused me more pain (turns out my brain is weird but I think I already knew that anyway!). In April I wrote a post entitled ‘what I wish I could tell my neurologist tomorrow’, at the time when I saw him I wasn’t quite able to tell him much of what I wanted to and chickened out of showing him the post as well. However a week or so later I built up the courage to send it to him.
Last week I had a surprise appointment, it had been booked in ages ago and I had been aware of it however I thought it had been cancelled and was expecting to be seen in July instead. After ringing up to see about a July appointment they said to come to this one instead. I then ended up in my local hospital Monday-Tuesday but luckily managed to make my appointment on the Wednesday, before being admitted to a different hospital in London that afternoon under the neuro-gastroenterologist I’m seeing.

My appointment went well and I felt very supported by my neurologist and his team, we had a long discussion about a number of things. The main being my stimulator, my neuro said that if having my stimulator removed is what I want then that is more than okay and he will arrange it. We discussed some issues surrounding that but I still said that I would like it removed, so they should hopefully be placing me on the neurosurgeons waiting list and it will be a 2-3 month wait for surgery roughly. I asked whether removal would alleviate the extra headache in the back of my head or whether I am stuck with that now, he said that it should hopefully resolve with removal of the stimulator. We discussed some future treatments that are hopefully in the pipeline in a couple of years time, and my ongoing other health issues.

I left with a mixture of feelings – grateful that I had felt heard and supported by them which isn’t out of the norm. I also felt a mixture of happiness and relief but also heartbreak and depression. I feel happy and relieved that it won’t be long before I am hopefully rid of this stupid device inside my head, that has caused me so much pain and still continues to. But on the other hand I feel heartbroken and devastated it has come to this. This was meant to be my answer, my last resort, but it has failed and now I’m not sure what to do or how to move forward.

Have a lot going on at the minute health wise which is making my head spin a lot. But knowing that my stimulator will be removed in the near future, which may hopefully relieve the extra pain in the back of my head, is quite a relief and gives me one less thing to think about.

 

Had a week in hospital, am very unwell.

Been a while since I wrote a proper post, so thought I’d do a bit of an update before I get back to trying to regularly post. I’ve had a difficult time recently with a number of health related issues.
I haven’t been in a very good place at all for a while because of the failure of my stimulator and it has been getting to me quite a lot.
I spoke on here before about the fact my neurologist thought I had a histamine intolerance, I’ve had problems for years with different GI and eating related symptoms, but this year they’ve just got worse and worse. Since about the middle of March they have kept getting rapidly worse. Eating would cause me to feel full after one or two bites, along with intense abdominal pain and nausea which would persist long after I finished those two bites followed by other GI symptoms. I tried to power through and continue eating but it kept getting worse, and from mid April I survived on a couple of mouthfuls a day. It wasn’t that I didn’t want to eat, wasn’t hungry or that food didn’t look nice, believe me it does – I love food and love cooking. But it makes me so unwell and causes severe pain and it kept getting worse; eating became unbearable. I kept getting weaker and feeling more and more unwell, abdominal pain and nausea started to appear not only after eating, though if I tried to eat they would just become unbearable. Since end of March I’ve lost 13kg in weight. My POTS symptoms have also been getting progressively worse for quite some time, pretty much since I came off the meds just over a year ago but things didn’t get really bad straight away.

I saw a GI in London a couple of weeks ago, that my neuro recommended I see. He said that he thinks that Ehlers Danlos Syndrome which I suffer from (genetically faulty connective tissue) is effecting my gut and we would need to do some urgent tests to figure out exactly the problems it was causing. However I kept going downhill and 3 days after seeing him last Monday I ended up having to go to A&E at the advice of my GP surgery. I was on the verge of collapse and needed urgent IV fluids to treat severe dehydration; as it turns out I also had dangerously low blood sugar. They gave me fluids and glucose and kept me in as they were concerned, however the doctors at my local hospital where I was said they would be unable to help me as I was too complicated for them. After discharging myself for a number of reasons which I won’t go into now (maybe on another post) the GI in London admitted me up there, to try and get me a back on my feet slightly and to do the tests.
(I did also see my neurologist last week as well as I had a previously scheduled appointment that I managed to still make before I got admitted at the hospital where the professor is, however I feel this needs it’s own post so that will come soon!) 

I was given IV fluids, magnesium and vitamins, and because I am now completely unable to eat normal food without the pain I’m already in becoming unbearable, they have put me on these nutritional drinks called Elemental 028; which is basically a pre digested formula. They are more tolerable than food but do still cause me some pain which I hope won’t get worse. I had the tests but so far they have not figured out what is wrong. I was discharged on Saturday but still no better and am pretty much bed bound at home. Standing and walking for even a very short period of time e.g. walking to the bathroom, makes me feel like I am going to collapse. I’ve got another test to have but on an outpatient basis however I don’t know when that is going to be. But for now it’s predominately bed rest and nutritional drinks which aren’t very pleasant and cause me some pain but are tolerable and keeping me going for the time being. But I am pretty unwell to be honest.

I do have a theory that I am exploring but we will see how that goes.

 

 

Not long now…

In 17 days time I will be travelling to London with my family so that we can spend the night there before my surgery the following morning where I will become a human robot. Time has moved very fast and I can’t believe that it’s now less than 3 weeks before surgery, it’s both exciting and scary and I feel a whole host of emotions surrounding it. I’m not really scared for the actual surgery itself, more so the outcome; will the only treatment left to try be the one that actually helps? Sometimes it feels to me that it’s a huge long shot despite being 50/50 odds, but nothing else has helped and I have tried every treatment under the sun so will the only thing left be the answer I have been looking for? Maybe, maybe not. I hope it’s a good outcome, but if it’s not then I don’t know what I will do. I can’t work, the pain gets to bad, I can’t study because yet again the pain gets too bad, so what really can I do? The thought of surgery not helping is a very depressing thought and I’m trying not to think like that too much because I know if I get caught up in it it could drown me. That being said I’m trying not to think too much about if the outcome is good either, because I feel that if I plan for that the likelihood is that yet again I will be disappointed by another failed treatment. So therefore I’m trying not think at all, which believe me with my overactive anxious mind is very hard.

This Thursday I am getting my hair cut, and no not the usual wash and slight trim that I usually get. I’m getting my hair cut very very short. Because this is obviously a blog and you guys don’t know me and have never seen what I look like, I will give you a brief description, I have long shoulder length, brown, very curly hair which has to  be washed every morning and left to dry in order to look somewhat presentable to the outside world. Because for surgery they will shave some of the back of my head , and I also won’t be able to wash my hair for quite a while, you can probably start to imagine the state my lovely long curly hair will be in, one word; disgusting! So I have decided to be brave and get it cut short, so that it doesn’t matter how much they shave for surgery and it will also be much easier to manage post surgery. It is going to be a huge change and I am scared I will look like a boy, although my hairdresser has assured me I won’t. I think right now I’m probably more anxious about the hair cut rather than surgery itself. But you never know maybe it will actually look nice and I will like it! Keep you posted.

Wishing you a low pain day.
Sian AKA soon to be a human robot.

I’m having surgery!

So my posts are far from frequent and I apologise but sometimes I feel like I have said everything there is to say about having a constant headache and how it has continually destroyed my life over the past 7 years. There is no feeling I have not covered in my posts and sometimes I feel like it would just do more damage than good to myself by hashing them same feelings out over and over again. That being said I did want to update everyone that reads and finds my blog about what is going to be happening in two months time.

On the 29th of September I will  finally be undergoing Occipital Nerve Stimulation surgery (ONS). I’ve waited a long time for this surgery; over 3 and a half years to be exact. I’ve fought hard to get this surgery done and I’ve been through a lot of psych appointments to make sure that I am ready. Last week they finally gave me a date and I am thrilled to have one all be it very nervous now that it has suddenly become so real and soon.

My mind wonders to what happens after with each outcome of surgery. It’s only a 50/50 shot at helping and it’s not a cure. So I guess it’s only natural to worry about the outcomes. What happens if it helps? What would I do with my life if it worked to a degree that I could manage to be able to work or study, what do I want to do with my life? But, what if it doesn’t work? Will I be left in pieces or will I finally be able to fully accept my condition now that I have tried everything? Would I be able to move on emotionally from the pain that holds me down?

So as you can see everything in very uncertain, what is certain though is despite being nervous and scared and worried I will be having surgery on the 29th September. I hope for the best outcome possible.

I will let you know how I get on.
Wishing you a low pain day.

Sian AKA the never ending headache

My yearly appointment.

Today I traveled up to London from where I live to see my neurologist, it wasn't too positive really.

After filling in the usual questionnaires and a bit of a wait I was called in to see one of the Headache nurses, who is lovely. She gave me a letter from the clinical director that was addressed to me regarding the situation with ONS surgery being on hold, and basically just stated that it was still on hold and they are not sure if or when the problem will be resolved. She went through the medications I'm on, which is now only medications to control my POTS. And then asked me about what my pain levels have been like, which has been awful recently. She said that they had nothing more to offer me medications or procedures wise because I have ran out of options. She said that the only thing left was ONS surgery which obviously can't happen any time soon because of the issues with the NHS and them putting it on hold. But there were the more recent external simulators which have recently come on the market, like Cefaly and GammaCore, and that if I wanted to I could try them. She then said she would go and speak to my neuro in the other room and for me to go to the waiting room and wait.

I was then called to see my neurologist. He went through what the nurse had said and we had a discussion about it. I asked him a question, that I really wanted and needed to hear the answer to and only he could answer it for me. I asked him if I was going to be in pain for the rest of my life. He said that he wasn't going to make any promises but it's highly likely that I will be in pain for the rest of my life. I told him I was desperate, he said he knows and he knows that I needed relief yesterday/today/years ago and that I've been in pain a long time now, and he understands that I'm desperate. He is a really nice guy who I respect a lot and I truly believe he wants to help me, though there isn't anything more he can do for me at the minute.

Safe to say have a mixture of some lovely negative emotions about today. I feel defeated and helpless, and I also feel scared about how on earth I am meant to go on in pain for the rest of my life, and I really don't know what to do, because there is nothing I or anyone else can do to help me. Not to mention I feel beyond miserable and depressed about today and my life. I told my mum when we got home about the question I asked and she cried when I told her what he said, I haven't cried yet, but that's nothing out of the ordinary because I hardly ever cry, will probably break down some when soon about it, but for the minute I'm just feeling desperately depressed and helpless. I was feeling bad before today and now I'm just feeling even worse about everything.

Hope everyone else had a better day than I did!