Tag: recovery

Posted in Archive, January 2023

Surgery 1 Done

Posted on by dystoniaandme

Well that’s the first surgery of the year done and dusted. After much anxiety over preop appointments falling through, fear of it being cancelled due to arriving on the ward and finding out that surprise surprise I had a temperature, and the team not being overly sure over the best way to handle my misbehaving jaw – to now be recovering on the ward is such a relief.

There had been some back and forth over how they were going to carry out the surgery due to my jaw having the potential to spasm and dislocate which could impact their management. My last surgery went fine until waking up when it dislocated and I needed to be sedated to have it relocated. A situation we all wanted to avoid repeating. One option presented was to have a spinal anaesthesia and be awake. I declined this as my neurology team have always stressed that they don’t want anything invasive being done to my spine due to all my health complications. This disappointed the team here and we chatted about this a few times, as understandably to them this was the safest way to proceed, however I chose to go ahead with the general as my neurologist was always very clear on the matter.

It went really well which is fantastic. They’ve inserted a suprapubic catheter; which is a catheter that is inserted through an incision in my lower abdomen and into a small incision in the bladder. I’ve had bladder issues for about eleven years now but over the last year these got severe. I reached the point in the summer where my bladder just stopped working and I was unable to void anymore. We tried intermittent catheterising but due to my tremors and spasms in my hands along with frequent dislocations in my fingers this was impossible on some days. Over the last few months I’ve ended up in hospital on multiple occasions with UTIs, kidney infections and retention.

When my consultant originally announced this next step I felt quite down. It seemed like such a spiral in health and I was overwhelmed. However I’ve had time to come around to it all and the relief I now feel having had the operation is significant. This should hopefully mean I start feeling much better, infections should stop being a regular occurrence and life should return to its usual level of uniqueness. So I’m embracing my new addition with a happy heart. Now to recover and get well enough for surgery no2 on my jaw.

Posted in Archive, november

The Little Improvements

Posted on by dystoniaandme

Every day I am noticing little improvements in myself. For example today I put my foot flat on the floor!! Normally this would have caused a spasm. I was absolutely thrilled that it didn’t spasm, it was yet another positive improvement. I am putting all my little improvements down to one of my medicines. I am currently on a variety of medicines but Gabapentin seems to be the only one that is making a huge difference. At the moment we are slowly upping my dosage, to see if it will help me any more than it already has.

I am clinging to the prospect that it could be a ‘miracle drug’ for me. That if I take enough I may eventually walk, have my sight all the time and be able to use my right hand again. My biggest hope is that it will be enough to enable me to return to my midwifery training. I would take anything right now if it would enable me to able to return to uni and start doing my training again.  With each improvement I make, I get more and more hopeful that I will return. I know that my chances of getting back on the course is slim, but I am still clinging to those chances. Hoping that if I push my body hard enough and stick with the meds, then just maybe I’ll get back to Midwifery.

I am however, bearing in mind that the chances of me making a full recovery is extremely slim, and slight improvements may be as good as it gets. If that is the case, then I shall still be happy as every little improvement is a big step forward.