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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I feel defeated by my body.

Why does my body not work properly? How did I get so unlucky to have so many things wrong with it? Will I ever catch a break? Will I ever get any better?

These are questions at the minute I ask myself daily, I just feel defeated and worn down to the ground.I have an appointment booked with my GP on Friday and then on Monday I have an appointment with a immunologist. The 18 different extra symptoms I’ve been dealing with for over a year could be explained by a histamine intolerance/Mast Cell Activation Disorder, and they’ve been getting progressively worse. My neuro wants me to start some meds for it but I’d like it investigated further before starting any treatment which could mean any tests done for it would be inaccurate if I had already started the treatment. So hence the immunologist appointment on Monday. Hopefully it will go okay and might make me feel a little better about the whole thing but at the minute I’m still feeling distraught that there is probably yet another thing wrong with me.

My stimulator is being turned back on for Burst programming on the 24th of March, I’m not feeling too optimistic that it will be any better than the standard Tonic programming of before, but I’ll just have to see.

In other news in 23 days time it’s my birthday and I will be 23 years old, it doesn’t fill me with joy, instead it fills me with sadness. I’m going to be another year older yet I’m still no better, if not worse than I was when I was 15 and this all started. I’ll be another year older yet I have not achieved anything I’ve wanted to, I’ll probably never be able to hold down a job, I’ll probably never move out of my parents, probably never have a relationship or a family. All because I’m sick, all because of my stupid never ending headache which I loathe so much. So I ask you, what is the point? I just feel so unbelievably defeated by everything at the minute that I don’t know what to do anymore.

2 months of hell!

So it’s been 2 months since I had surgery and it’s been horrific. I’ve been sat at home in agony wishing I never had surgery in the first place. My normal headache has been way worse and it had been joined by a new friend; an extra headache at the back of my head. My head has also been very sensitive to touch, having my head against a pillow to sleep has been even more painful, thus my insomnia has made an reappearance. About 2 weeks ago now I decided to do a test and see what would happen if I turned the stimulator off for a bit, the result of this was that the extra headache went away, proving my theory that it is not surgical pain and actually the stimulation is causing an extra headache. I rang up my team in London and they said to turn the stimulator down really low and see if that made a difference, but there wasn’t any significant change after a few days so they decided they wanted to see me.

On Wednesday I trekked up to London and was first seen by my neurologists headache nurse who is a reprogramming wiz. She spent ages going through things with me and asking me about all the extra pain and looking at my stim system. She quickly came to the conclusion that my nerves had been severely overstimulated and I had developed allodynia in my head which is why it was painful to the touch. She said I seem to be very sensitive to the stimulation so we need to take things slow. She has changed the contact of the stimulation on my occipital nerves so I feel the stimulation in a different area of my head and the program is now one tenth of the strength it was before. As soon as she changed it I instantly felt some relief from all the extra pain, which felt bloody good. She is confident that this program will be a lot better for me and basically when my neurosurgeon reprogrammed it he only made it worse.

I then saw my neurologist for a few minutes to just catch up. I told him I had been wishing I never had the surgery and he said is is optimistic that this will be a lot better for me, and I still have 60/40 odds of some improvement of my normal condition. I mentioned that my psychologist wants to move me over to the ONS team psychologist when I get back from Christmas in Dubai in January. One of the nurses piped up saying he is fully booked till end of Feb, to which my neurologist insisted I be made a priority and have one soon after I get back. They rang me the next day after giving me an appointment 3 days after I get back from Dubai, so that’s good.

I left the appointment feeling so much better than I did when I went in, the extra headache has now been relieved and I never thought I would be so happy to have my normal headache back. Hopefully now that the programming is better the stim might be able to do the job it’s there for and help with my normal headache and not cause me any extra pain.

Post op update – please chop off my head!

First off I’m sorry it has taken me so long to give you all an update on the surgery I had which is now over a month ago and this update is going to be long. I’ll begin this update on how the surgery itself went…

I live quite a long distance from where the hospital is in London, actually it’s at least a 3 hour car journey away, so me and my family went up the day before surgery and stayed in a hotel as I had to be at the hospital for 7am on the 29th September. We had a nice dinner the night before and then an early night, not that I slept I was so nervous.
I arrived at the hospital at 7am with my Mum and was given a bed, turned out my surgery wasn’t scheduled till 2ish in the afternoon so I had a lot of waiting around to do and I wasn’t allowed to eat or drink. At 2ish I was taken down to the theatre and was prepped before going in. They then shaved quite a large chunk of hair at the back of my head, though it didn’t really matter much as I had my hair cut specially for surgery so that it wouldn’t matter. The surgical team said it was the best pre surgery hair cut they have ever seen. They marked up my head and chest of where they were going to cut and then I was put to sleep. Next thing I know I’m waking up in the recovery unit. I stayed there for a while and my surgeon popped in to say that surgery had gone well and there were no complications, and then they transferred me back to the ward. I wasn’t in much pain as they had me on morphine, and shortly after being back on the ward I got myself out of bed with some help to walk to the bathroom. The woman next to me on the ward also kept making me laugh which was really painful because of my incisions, and having my head resting against the pillow  was painful on the incision. They had me on oramorph whilst I was in hospital, the nurses kept laughing at me because I said it tasted like cough medicine and I actually happen to like the taste of cough medicine. The day after surgery one of the headache nurses came to visit me with someone from St Jude which is the company that made my stimulator, they turned it on and programmed the device and showed me how to use the remote and charging equipment. The feeling of the stim was strange, it’s like a tingling sensation, almost like when you get pins and needles in a body part that has gone to sleep, but without the pain that that gives you and it comes in waves of the sensation. I stayed in over the weekend and had some visitors each day which was nice and then my Dad picked me up on the Monday and I went home. On discharge they said my staples could be taken out in 10 days time and that just to take paracetamol and ibuprofen for the surgical pain.

I was nice to get home and things were going okay, I was in my usual amount of pain for a few days until it all went to hell. By the end of the week I developed an extra headache in the back of my head a place where my normal headache has never been, it has always been frontal but now I had pain at the back and sides of my head too. My normal headache had also increased to a whole new level of pain and I was in agony – I still am. This was the week after surgery but now it was the weekend so I had to wait till Monday to  speak to my neurologists team about it. I called first thing Monday and spoke to my lovely headache nurse who said she would talk to my neurologist about my extra pain and get back to me. Tuesday I saw my GP by this point I was desperate for some relief and asked if she would prescribe me something for the pain, but she said she wouldn’t give me anything without my neurologists say so, so to get them to contact her and tell her what to prescribe and then she would be happy to. By the end of the week I still hadn’t heard anything so rang again and my nurse said that my neuro had said that the issue had to go to my neurosurgeon so they had emailed him and they would get back to me. I continued to suffer with my normal headache being 5x worse and my extra headache  at the back of my head also. I heard nothing the beginning of the week and then I was at the hospital on the Thursday (3 weeks after the op on the 29th sept) to see my psychologist. Sat in the waiting room still in agony I bumped into my headache nurse, she said that she was going to call me later as she had heard back and my neurosurgeon wants to see me at 3pm Tuesday and to bring my remote encase he wants to reprogram me.

Fast forward to Tuesday – still in agony. I arrived at the hospital half an hour early and sat and waited by half 3 I went to ask reception what time they were expecting my surgeon they said that he usually doesn’t arrive till 4-5ish. He arrived at 6:15. I waited nearly 4 hours to see him by this point I was exhausted and in so much pain that I had forgotten practically everything I  wanted to talk to him about. I wasn’t annoyed at him after all the reason he wasn’t there was because he was in surgery saving lives so you can’t really be annoyed, but I was annoyed at the fact I was told to be there for 3 when they know he doesn’t normally arrive till much later. Anyway he basically reprogrammed me and said that should help, my remote is on a lower setting but I can feel the stim working more and covering a larger area which he said is good, however the sides are not equal one is stronger than the other so it’s still not right.

Despite all that I am still in agony and I don’t know what to do. I’ve spoken to a few people who had this surgery with my surgeon 4-5 years ago, and they have said being in this much pain a month after surgery doesn’t seem right, they didn’t have any surgical pain after leaving hospital and they didn’t experience a worsening in their normal condition. I know they’re not doctors and that a patients perspective but one of these people was completely cured by this surgery (though she had a slightly different headache condition to me) and another now has much lower pain levels after having surgery. A friend of mine who had this surgery and it didn’t help much developed pain in the back of the head after surgery where her normal pain had never been and it’s still there 4 years later and she is still in agony with her normal pain and has to use opiate medication just to get through the day. So hearing that scares me.

It’s over a week since I was reprogrammed and I’m still in agony with both sides of my head. I don’t believe that this is a normal reaction to surgery and I don’t know what to do. I’m back up in London tomorrow to see my psychologist which I really need because I’m going crazy with worry about being in so much extra pain and I really don’t know what to do. To be honest I’m really scared, scared that this is going to be my new normal, scared that surgery has made things worse and it’s not going to improve. Did I make the wrong decision in having this surgery? Was it a mistake and now I’m stuck with the consequences of now being in more pain than I was before surgery? I should probably talk to my neurologists nurse and discuss what is going on with them, but I feel that I need to talk out how I’m feeling with someone first and get someone else’s opinion about what I should do before I talk my neuros team.

Oh and I’m taking volunteers for someone to come and chop off my head for me, as this seems like the only logical solution right now. So if anyone fancies chopping it off, let me know!

It’s been a while, yet again.

I haven’t posted in a while, for a number of reasons, I had been doing okay and I decided I needed to take a break from blogging and focus on solely being okay. I did have a boyfriend but that ended unfortunately, I had, well have a job but the pain has been difficult. So much so that I have recently had to take quite a while off to try and recover from the horrific pain levels that it gives me. So is safe to say that it hasn’t been going great. Going to work with horrific pain levels is just awful, I sit at my desk feeling like my head is about to cave in, that my brain is being crushed or I am being stabbed in the head, and I just want the world swallow me up whole.

On a positive yet scary note I’m getting surgery soon, I don’t have a date yet but I have a psych evaluation and an appointment with the neurosurgeon next week and beyond that it will only be a matter of weeks till my surgery date; this is the ONS surgery I’ve been waiting 3 years for. I hope with all my heart that it works, it’s not a cure but it could be the next best thing. Obviously I am quite scared it won’t help and give me the relief it is meant to and that is playing on my mind a bit. I am scared of it working and what I will do my life if I am in less pain, and I am scared of it not working and me finding I can’t really do the job path I am currently in with this level of pain, which is proving to be quite difficult at the minute. What will I do then?

I’ve been quite lonely recently, it’s hard when you don’t really have any friends to talk to. Going through life with no friends is really quite difficult, I don’t know what I do wrong I don’t know why I find it so hard. But having no one is beyond horrible all I just want is one person to stick by me that’s my age and wants to be my friend. But there isn’t anyone and it tears me up inside and makes me feel like I’m just not worth being friends with, that no one likes me enough to stick by me, that maybe I’m just a horrible person. I just don’t have anyone, of course I have my family but that is really not the same. Is it too much to ask for to just have someone?!

I don’t want to give a time frame of when I will post next because that might not be the case, and I am sorry if I haven’t replied to comments or emails recently as I just haven’t checked them.I hope to post again soon and keep you updated with the surgery process.

So for now I will say bye, I hope to write again soon and I wish you all a low pain day.