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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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.

 

 

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.

 

Stimulator re-turn on day.

I’ve been a bit lax with my posts lately and I’ve been meaning to write this post since last week, but it’s been bit crazy.

Last Thursday it was my 23rd birthday, I had a nice day with my family and a meal out in the evening with them and some family friends. Overall the day was quite good and I didn’t feel too miserable despite often feeling a bit disheartened every year I get older and I’m no better if not worse health wise.

On Friday I had my reprogramming appointment at the hospital in London to turn my stimulator on and onto the burst settings. I had a bit of a tube dilemma getting there and ended up having to run from the tube station to the hospital, only to get there to find that the rep from the stimulation company had been told to come at 11am instead of 10am like me and my nurse thought. It was okay though as I caught up with my nurse and told her my normal headache had gone back to baseline which is still bad but not as bad has it was when the stimulator was on however I still had the extra headache at the back of my head. She said that she would talk to my neurologist in the week and discuss what to do and let me know as she said that if I still had the second headache despite the stimulator being off then there is another problem going on, but she couldn’t comment on what that could b, understandably. We then had a bit of a laugh and a joke about things whilst we were waiting for the rep and I was filing in some headache diaries. She then asked if I had been charging my stimulator this past month and I hadn’t been because I presumed that because it was off I wouldn’t have to, apparently that’s not the case but nobody told me. Anyway it had enough juice ton do the reprogramming thankfully otherwise the whole trip to London would have been a waste of everyones time. The rep turned up and it took all of 5 minutes to turn it on and program it, this burst setting means I’m not meant to feel the stimulation at all and if I do I just turn it down but otherwise I don’t need to do anything.
I then headed for a quick lunch with Jacqui who ran the Rock Bottom event that I wrote about it my last post, which was really nice. And then headed home because I knew I desperately needed to charge my stimulator battery. By the time I got home my pain levels were quite high but I hoped it was because I had had a busy and stressful day going to London.

On Saturday I wen back up to London via my Grandparents house in Surrey with my Mum and sister as last year my sister bought me tickets to see the Harry Potter and the Cursed Child West End show for my birthday; it books a year in advance so the tickets were for this year. Anyway the show was absolutely fantastic, the best show I have ever seen, great storyline, great special effects and costumes, just utterly spell-binding. We stayed in London over night and then my sister flew back up north in the morning and me and my mum went to have lunch with my grandparents for mothers day. Me and mum then spent the afternoon and night at my mums best friends with her family and had a really lovely time with them. My pain levels throughout all this were still not good, however I still was thinking that it was probably due to having a busy few days. On Monday my Mum flew to Dubai to spend 3 weeks with my Dad and I drove back home.

I decided to ensure that I had a quiet few days this week to try and see if my pain eases and rule out the possibility that it’s actually worse because my stimulator has been turned back on. Unfortunately it’s still quite bad and I’m not feeling too optimistic. My nurse called me yesterday after speaking to my neurologist and he has said he wants to move my next appointment which was mid June forward to the 25th April instead. I’m pleased and thankful he is going to see me soon but I’m worried and concerned that it’s not going to be good news about my extra headache. I haven’t told them that my normal headache is worse again since the turn on of the stimulator as I don’t want to be too presumptuous about it. But I’ve said to myself I will give it till my appointment on the 25th and if it is still bad and has not improved I will be asking for it to be turned off and will be asking about removal of it.

To be honest I’m starting to feel more and more upset about the fact that I really don’t think this surgery is going to be a success and so far it’s just been a complete nightmare. I fought so hard to be able to get this surgery for me and everyone else on the list at the hospital. I know in my heart that despite now regretting having the surgery, I know that if I hadn’t have had it I would have always been wondering if this was my answer. But unfortunately I don’t think it is and I feel completely heartbroken about it. It’s left me worse than before I had it and I was not prepared for this. I struggle to find the words to explain fully about how disappointed and heartbroken I feel right now and I haven’t really told anyone about how I’m feeling about any of this. I’m also very very good at pretending I’m okay and not talking about how I actually feel so nobody is none the wiser.

Anyway keep you updated on the stimulator issues.

Wishing you a low pain day!

 

Can you be ‘fixed’ in 8 sessions of therapy?

Along with having my surgery in September I was given psychological support form the hospital I am at in London. At first it was a temporary psychologist whilst the ONS surgery service employed a psychologist to be on their team. I saw the temporary one for 4 sessions and it was going okay, and then I got moved to the new ONS service one. I’ve been with him since the start of the year and I’ve spoken about it on here a bit before.
At my first appointment he asked me what my goal was, and I replied to feel better. By better I didn’t necessarily mean my headache would miraculously disappear, though that would be lovely, instead I meant to feel less miserable all the time. We agreed with a set of 4 sessions before reviewing it.

At the end of the initial 4 sessions I said I’d like to keep going and we agreed another 4 but then that would be the maximum they would be able to offer me. I know I won’t reach a goal of being less miserable, and I honestly don’t think that is possible in only 8 sessions, I also don’t think that most people with complex issues would be able to go from depressed to somewhat okay and ready to leave therapy in basically just over 8 weeks. I’ve been in therapy 7 years and I’m still not there. I know not everyones the same and people have different problems and yeah maybe 8 sessions would be enough for a small number of people, but for a lot it’s not and where do people go once they get discharged from their 8 sessions? It also makes me wonder why people wonder why we have a mental health crisis on our hands this day and age. With my experience with some NHS mental health care I completely understand it. People don’t get better, local mental health teams are often shocking, I know they are in my area, and then not enough therapy is offered (that’s if and when it is offered) so therefore people don’t get better. I get that the NHS is often overworked and understaffed and staff work really hard to look after patients, but often mental health care is lacking, trust me I know I’ve experienced it.

As I near the end of my 8 sessions I know I won’t cope well without therapy, so I’ll have to find an alternative. I also wonder if I will ever reach a goal of feeling less miserable, it seems like I’ve been trying for 7 years just to feel somewhat slightly better but I’ve never got there. I question whether being less miserable is possible for me, or whether I’m destined to just be the way I am for the rest of time? I actually feel like the total of 8 sessions I will have had will have been a waste of time when they can’t be continued to reap any possible long term positive effects. I’ll start again with someone else, maybe my old psychologist or maybe someone new and that could possibly mess up thought processes or any effects the past 8 sessions may have had because of another outside influence with different thoughts and ideas. What was the point in the past 8 sessions, because they’ve made me feel worse.

I get that maybe short term therapy works for some people, but I believe that for people with chronic pain or illness, which influences so many aspects of your life they may need longer term work. Especially if they’ve been sick a long time, perhaps there isn’t much hope of their health ever improving. I’m sorry but how can 8 sessions fix how you feel about spending the rest of your life sick and in pain, as someone who knows first hand and fully admits that they need psychological help and support, for me I know it’s not possible for in 8 sessions to be fixed and ready to be discharged.

I pride myself with always being honest on here, and that’s my honest opinion.