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.



9 thoughts on “Stimulator removal agreed!

  1. Really glad you had a good experience and that they’re happy to get it removed for you πŸ™‚ Fingers crossed the wait won’t be too long. Also well done on having the courage to send that post to your neuro, that must’ve been really hard so well done on managing to do it!

  2. So sad it didn’t work for you. If they did trials like I did then people wouldn’t have to have the permanent implanted without knowing whether it will work or not. You would not have to go thru the suffering you did. Don’t give up on finding out the cause of your migraines. It took me 19 years but I did and now I don’t need my implant as much. The first year in 19 years without a migraine-no drugs or implant. I’m happy about that. I have a long way to go to heal all my infections but I’m know the cause and I’m getting there. Good luck with the surgery!

      • Yes, places in the US that only do ONS and not the one I have do not do trials so I know others that have had their ONS taking out because it did not work. Try to see a Naturopathic Doctor because they will figure out the cause of your symptoms and treat the underlying problem.

  3. Oh my dear. I read your last post but was on my phone and couldn’t comment like I wanted.
    I’m glad your neurologist is so caring and is still trying. I always hope that things will get better for you.
    I didn’t know you had other health issues. Those are very difficult to deal with alone, not to mention with a persistent headache.
    I understand feeling relieved it will be gone, but devastated it didn’t work. You must be asking, how can you have hope after something like this? There is hope. Really there is.
    I had a moderate to severe headache for over 2 years and suddenly they are better. The meds that the dr gave me did not work. I started taking magnesium threonate. I’m not sure if that is what did it, but I know I feel so much better it is amazing. I took magnesium before and just had GI problems, but this was different. I’m just grateful my headaches are normally about a 3 or 4 now. I have about 5 bad migraines a month now. I want this for you. I know magnesium is not a cure all and I’m not saying it will help you. Just sharing that things got better for me. I don’t really know why, but it is. That gives me hope that other things will get better too.
    I hope that said what I wanted it too. in a nutshell, we just never know, there is always hope.

    I have a couple of friends with Gastroparesis. The symptoms sound similar to yours. it’s a very hard thing to deal with. and dangerous. I hope they can fix it soon. Please keep us posted.

    I care.

    • Hi, yeah I had two of them diagnosed (POTS and EDS) when I was searching for a diagnosis for my headache mainly. And now I’ve had recent complications with GI symptoms which the consultant thinks I susceptible to due to my EDS as can be common with EDS. But we are not sure exactly what yet, I’m due to have the test for Gastroparesis soon but was told today that the test for it is on hold at the hospital as they have some sort of issue they are trying to resolve with it. But they don’t know a time scale of when I will be able to have it. But I’m very very unwell with whatever is wrong with me, and my POTS is not happy and my head is not happy too.
      Yeah I’m struggling with the hope thing but my neuro was really positive in saying he hopes to eventually find something to help me and isn’t giving up. And there is hope with this new CGRP med hopefully being approved in the nest 1-2 years fingers crossed which has shown very promising results in the trials. So I’m trying not to get dragged too far into a completely dark hole with it. But with all my other health issues at the minute it’s hard, especially when I’m now concerned that I will never be able to eat again, as I can no longer tolerate food.
      I’m so glad you found something that helps you, that’s really great! Have been put on some chelated magnesium supplements however I’m having difficulty with the amount of meds I need be taking at the minute, so most of the time only manage the actual pharmaceutical ones and all the supplements I’m am supposed to be taking have tokens a slight back burner, due to my GI problems it’s been hard to take as many tablets. Keep trying to persist with them though.

      Thank you for caring, means a lot it really does πŸ™‚

      • Sweetie, you are going through a lot. Give yourself a break. Not only ae3 you having to deal with more health issues, you are mourning the failure of the stem.
        I hope you can get the tests soon, and you will be able to eat again.
        My thoughts are with you.

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