DBS ANNIVERSARY – ONE YEAR

Hi , I just thought I’d share with you a few details of my year after having Deep brain Stimulation surgery,

As you know we’ve all been on lockdown and haven’t been able to do things as we should . Meaning appointments etc., so things haven’t gone as I hoped they would have. I’m sure all of you have been in the same situation.

When I first arrived home after the operation which I had on the 9th March 2020 , my symptoms were really bad, I was a lot worse than I was before the operation, I was shaking really bad on both sides and I had terrible dyskinesia and dystonia, and my pain was through the roof , I couldn’t walk so I was in a real state. But I was informed that when I got switched on all would change.

So after a few weeks we went for my switch on , I was really hoping that I would get my life back, to be able to cook and to be able to my photography, unfortunately that wasn’t to be, he had managed to calm my right side, but my left was not playing the game, it was still shaking badly. My walking had improved to an extent. I wasn’t doing that shuffle.

So after leaving Addenbrookes Cambridge, I thought maybe next time I go he could maybe get my left side calmer.

I went again for a further two times for tweaking and unfortunately he couldn’t fix my left side. So there was talk of going for a CT scan to see if my probes are in the right place. But because of COVID that hasn’t been possible yet. I’ve now had two telephone conversations with my neurologist three months apart and the next step is that I will be going to Addenbrookes Cambridge in April to see my surgeon and neurologist to have another tweak and if that doesn’t work, then I presume they will be discussing what to do next .

I would like to say at this point in my journey, I would definitely have the operation if I was offered it, because there are so many people that it has helped, I know I have been unfortunate to have had this not happen for me. But I’m still hoping that they can make me feel better….. I’m still smiling and hoping for the best 😊

DBS update – 31st December 2020 versus Covid-19

Well I thought I’d better write a piece about my recovery, I had my DBS surgery on the 9th March this year, and unfortunately It’s still a work in progress, so I guess recovery is not the right word to use.

There must be many of you out there who are now going through tests to have this operation and people waiting to go in and have it done. I must say to you that I would definitely recommend it. The operation is nothing to be worried about. Because if there is any chance of you feeling better, I say go for it! I know I’m going through problems but not every body is the same. At least I can say I’m taking half the medication I was taking before.

Because of the virus, and me having to travel to Addenbrookes hospital in Cambridge from Norwich, it really hasn’t been a steady road travelled, I suppose mustn’t complain, I’ve at least had a couple of sessions where I was tweaked, and of course a phone call. Which was not really worth it ,because nothing can be accomplished over the phone.

Now we are at the end of the year, I have been waiting to have a CT Scan since June or thereabouts, because my symptoms are still there and cannot be tweaked, I’ve still got my shakes on my left side and I’m still getting dystonia and dyskinesia and pain. Apparently they want to check if my probes are in the right place.

This could mean having to have the operation again to have a third probe put in or to move the one that is already in there. I can’t say I am looking forward to this but if needs must…..

I must say I have had my moments where I have felt quite okay, but they are very few and far between. I’m still hoping and praying that they can do something for me, and I’m still smiling.

So I guess that’s it, for now. I will keep you updated of my progress. I hope that next year will be better for us all. Thank you for reading.

DBS DILEMMA

DBS UPDATE 6th August 2020

It was Thursday morning and I was traveling to Addenbrookes hospital in Cambridge.

I was really hoping that my neurologist would be able to tweak my stimulator to get rid of my shakes on my left side.

My husband and I were ready and waiting for the transport to arrive at 9.15am . She arrived early which was good, as it can take a couple of hours to get there and my appointment was for 11.15 am .

We arrived at about 10.30am so nice and early, we booked in and thought maybe we would be seen earlier but that wasn’t the to be. We eventually went in at 12 noon .

I hadn’t had any tablet that morning as it’s best for him to be able to do it when I’m in an off state, better maybe for him but not for me.

He started tweaking the the stimulator and I started getting a weird feeling in my left eye and mouth, he tried and tried to get my left side to stop, unfortunately it wasn’t going to .

So now I’ve been told by my neurologist that the next step is going to be an MRI scan under general anaesthetic or heavy sedation for them to find out if the probes are in the right place. He then said to me that I might have to have a third probe fitted in my head to solely work on the tremor.

You can imagine how I felt at the time, I’m still feeling a bit sad that I might have to go through surgery again but obviously I guess I will have to get over it and get on with my life…..

So we arrived home and I was exhausted and my head ached and I felt quite sad. I couldn’t concentrate on anything or relax that evening. All I kept thinking was we’d got to go again and probably again……..

I will keep you updated on what happens next………

Watch this space…….

DBS Update 11th July 2020

I had a phone call from my neurologist, the other day and he asked me what was going on with me, I told him about my shakes on my left side, and that if I take too many Sinemet I get terrible dyskinesia and dystonia, I’m taking 3 – 62.5 a day , but because they cause this I have to half them and take them 6 times a day. So I’m not getting a lot of dystonia and dyskinesia , but that then means that I’m not getting a rest from the shakes . So he put me on Ropinerole last time I saw him and he wanted me to get up to 6 mg. which didn’t do any good, so he was saying that he would like me to get up to 10 mg. He also said would like to try another tweaking session. If that doesn’t work he will have to arrange for me a general anaesthetic to do an MRI scan on me. To see what is going on. To tell you the truth as I always do I’m a little bit fed up. I’m trying to stay strong but it’s getting harder by the day…. please forgive me for saying this, as I know some of you like my mdetermination and strength. But I can honestly say this Parkinson’s and the pain I’m in is really shit………..

Fed up, in pain and coping the best way I can!

ONE STEP FORWARD & ONE STEP BACK