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.

 

Last weeks neuro appointment.

I wish I could tell you I had the guts to show my neurologist what I wrote in my last post, but unfortunately I chickened out and didn’t, which I’m annoyed about. I really want to send them what I wrote but I’m not sure I have the courage to do that either.

I felt physically sick with nerves before my appointment, though I do feel sick quite a lot now so maybe it was a combination of the nerves and the other problem that causes me to feel sick. My nerves were calmed by having a lovely chat with a woman in the waiting room which is like a room where people go in for day infusions, and she was getting one for her MS. She was really nice and talking to her helped me feel slightly more calm and was a bit of a distraction.
I saw my nurse first and there was so much I wanted to say but like always words failed me and the best I could come up with which kind of got straight to the point anyway was something along the lines of ‘I’m so fed up I want you to remove the stimulator.’ After a bit of a discussion with her I then waited till my neurologist could see me.
I saw my neurologist after a short while and to cut a long story short we decided to keep the stimulator turned off for 3 months, to get my pain levels back down to baseline before stimulator. At which point I will see him again where it will be discussed what to do next, maybe another small stimulation attempt which I’m really not keen on, or the only infusion I haven’t had. To be honest I just want removal, I want this nightmare over, and the last thing I want is for them to turn it back on and send me back into even more agony. But I don’t want them to think that I’m not trying, that this was all for nothing, that I’ve wasted their time and resources.
We then discussed my histamine intolerance issue and the medications he put me on the last time I saw him which really really helped for a couple of weeks, and then some of my symptoms started returning, and now I have hardly been able to eat in probably over 3 weeks now. He wants me to up some of my medications and see this Professor for this type of issue at a different hospital in London, so I’m going to be sorting that out as well. I’m really struggling with being unable to eat, and I feel incredibly unwell.

He asked me how I was doing, and I wish I had been able to go into some more detail than I did but I felt if I said more than I did I was going to have a massive breakdown and there were a lot of people in the room I really didn’t want everyone to see me like that. So I just said ‘no not good at all’. He asked me if I was still seeing my psych who is practically on my neuros headache team and I told him he had discharged me a few weeks ago because I reached the maximum amount of sessions he could offer me. My neuro said he would see if he could sort something out, I really hope he can. I wish I had been able to tell him how much I really am struggling, or even just have shown him my previous post, but me being the idiot I am was unable to do any of that, so he doesn’t really know how much I need some help. And as usual I hide everything with a smile, a laugh or some sarcastic comment so nobody knows just how badly I feel or how much pain I’m in.

 

What I wish I could tell my neurologist tomorrow…

I’m not good at expressing myself to people in person, I’m never able to say what I want to or need to. I’m much better at writing it down, what I want to say and how I feel. I’m seeing my neurologist tomorrow and this is what I wish I was able to tell him…

I don’t want you to think I haven’t given this enough of a chance or that I haven’t tried hard enough with it. I wasn’t expecting any sort of relief yet when I only had surgery 7 months ago, but I’m so much worse it’s unbearable and I know it should not be this way. I can feel that my pain/head/brain does not like what is happening to it when the stimulator is on, I can feel it and it’s even more agony than I’ve been use to for the past 7 years. And if that wasn’t bad enough an extra headache has been created at the back of my head, which was never there before and I don’t understand what has happened for it to be there, but it’s really very painful and I just wish it would go away. I wish I never had the surgery,  I wish I had listened to the people who said not to go through with it. However I’m the type of person who will try anything within reason if there is the slightest possibility it could result in some relief, and I know if I had not gone through with it I would always be wondering if this could have been my answer.
I don’t often complain to you, I don’t often complain to anyone, I usually hide my pain with a brave face, a fake smile, a laugh or a sarcastic comment, mainly because I don’t want anyone to see just how badly I feel and just how much pain I’m actually in. But this is me complaining, when the stimulator is on it causes me so much agony it’s becoming unbearable. And I’ll be completely honest, I don’t want you to turn it back on and reprogram me which will probably send me back into even more agony, I want you to keep it turned off and then swiftly arrange for removal. I’m in agony and I don’t know what more to ask for other than this and hope that I can return to what it was like before surgery, which was also agony but it wasn’t quite as bad as this. I know you’ve tried so hard to help me and I appreciate everything you have done to try and help me over the past 6 years I have known you, I appreciate it more than you know, you were the only neurologist I have ever seen that didn’t dismiss my pain, that listened to me, that cared enough to want to help and for that I will always be grateful. But I’m not sure I can keep going with this stimulator and how much extra pain it is causing me, I’m completely fed up and done with it and I honestly don’t believe that reprogramming it any different is going to change the extra pain it causes me when it’s on, I know my pain better than anyone, I know what it does not like and it does not like this, I wish so badly it did and I wish this could have been my answer for some relief, but I really don’t think it is.

I know everyone was worried about what would happen to me if surgery turned out not to help and where I would be mentally if that was the case. I wish I could tell you I was okay, or that I will be okay. But the truth is I’m not okay, I’m so very far from okay, I’m completely heartbroken and devastated about this and completely unsure of how I’m even going to be able to move forward from here, of how I’m going to cope with the rest of my life with this pain. I’m probably in one of the worst states I’ve been in and I’m probably beyond anyones help anymore. I’m 23 years old it’s been over 7 years since this started and I have no clue how on earth I’m going to survive the rest of my life with this pain, I don’t know how to deal with the fact I will probably never have any sort of relief, that all hope for that is gone. And I feel that if all I’m ever going to be is sick and in pain, then what really is the point anymore? 

I know I won’t be able to say this to you tomorrow, I’m not even sure I have the courage to show you this post, but maybe I will surprise myself.

 

Heartbroken.

I’ve been a bit quiet on here again recently, writers block would be the wrong word. It’s more like I’m actually really struggling and I haven’t been sure how to express it to anyone, even on here.

My pain levels are still worse since my stimulator was turned on a few weeks ago, my 2nd extra headache is still raging and I’ve resigned myself to the fact that I really don’t think my brain likes what is happening to it. I feel completely and utterly devastated and I really do not know what to do anymore. I was hesitant to call my neurologists team because I didn’t want them to think that I haven’t tried hard enough, that I’m just giving up. When really I’m in agony, I obviously wanted this to help more than anyone and I’m heartbroken that it has been a complete disaster and I’m worried I am now going to be stuck worse. I did however call my team and spoke to one of my nurses, telling her it was worse again and how I wished they would take the stimulator out. She asked if I had told my neuro that and I said not yet but I would be telling him when I see him in 2 weeks time. She said she would talk to him this week and said she would call me with what he says, so hopefully I will hear something tomorrow.

I’m really struggling with the failure of this treatment which was a last resort and the complete and utter heartbreak it is causing me. The overwhelming fear of spending the rest of my life in agony, the sadness I feel that I will never be able to move forward with my life, that all I will ever be is sick and in pain. And I honestly don’t know how to let myself feel the grief that I know is there.

I’m really at a loss of what to do and how I could even hope to move forward from here because I really don’t think it’s possible.

The art of looking OK.

I’ve been in pain for over 7 years, but if you didn’t already know you probably wouldn’t be able to tell. It’s taken me a long time to perfect the art of looking okay even when I’m in agony. But now the majority of the time I look relatively normal but nobody see’s what I look like when the pain is at it’s absolute worst, because I stay at home and in bed.

My pain levels are always on the high side, but I am able to mostly function a portion of the time. Over the years I’ve learnt to deal with the pain better, but I’ve also learnt to hide the look of pain in my face and hide how I feel from the world. When my headache first started I had no idea how to deal with it and I was unable to hide the pain and how depressed and angry I felt, and it drove everybody away other than my family and Jo. I’m not saying that nobody in my life these days knows about my headache; they all do and I’m completely fine with that and telling them updates on my stimulator and medical issues. But when I’m with people they have no clue the extent of how actually I feel like my head is about to explode or that someone has stabbed me multiple times in the head. I hide my depression and just how badly I feel about the fact that I’m going to be in pain for the rest of my life, how surgery was my last attempt at a life with less pain and it’s been a complete and utter disaster that has only made me worse. I hide just how completely devastated I feel about that right now, and I don’t necessarily want to talk about it with anyone because I honestly don’t know what to say and I don’t want to see the disappointment in everyone else’s eyes, because they were all rooting for this to be my answer too. My body has let me down, it has let everyone down.

Everything I do is clouded by the pain – I go to training (my best relief and coping mechanism) and hang out with some of the most amazing people afterwards having a laugh and a joke which is hilarious and always makes my day and slightly distracts me from my pain and the thoughts in my head. The pain is not great whilst I’m there but I get home only to be engulfed by agony. And how my life is right now is really all I can manage, I wish so badly I could manage more and it breaks my heart every day that this is all I will ever be and I’m really not sure I will ever come to terms with that.

I’m really struggling at the minute, I’ve got some aspects of my life that keep me going, my training and the people there, they don’t know it but they keep me alive and make me laugh and smile a million times more than I use to. But theres a hole in my heart that the pain has created and a deep rooted depression that I hide so well but will probably never recover from.