Many, many years ago I was diagnosed by Professor D’Cruz with carpal tunnel syndrome, something that’s quite common amongst lupus patients. It causes tingling, numbness and pain in the hands, fingers and wrists because of pressure being put on the nervous system. Lupus can cause joint pain (arthralgia) and inflammation in and around the joints, resulting in problems like arthritis, tendonitis and as mentioned carpal tunnel syndrome.
Initially it was annoying, but eventually it became very problematic in my right hand, I had constant numbness especially when doing repetitive tasks, I’d also wake in the night and first thing in the morning with a numb hand. It was taking longer and longer for the sensation to come back, so I decided it was time I sought further advice.
The 3 main treatments for carpal tunnel syndrome are: splint, steroid injections and finally, if they don’t work, surgery. Even though a splint helped relieve the symptoms they soon came back, so I was advised that surgery would be a good option for me as if left untreated it can lead to permanent nerve damage, cause loss of sensation and weakness in the hand and fingers. I was told I was at stage 4 with muscle loss at the base of the thumb, which is a severe level.
“This is my personal story and, as with lupus, every patient is different so the treatment will be different too, you should take the advice of your own doctor regarding the best treatment for you. ”
The surgery was done under local anaesthesia i.e. anaesthetic is injected around the sight of the procedure and you are awake during the operation. Local anaesthesia isn’t pleasant when it’s being injected but it kicks in quickly and I soon felt nothing. I lay down for the procedure and honestly didn’t feel a thing, it was over very quickly (it takes about 10-20 minutes) and I was then returned to the recovery area where I was offered food and drink. People react differently to procedures, I’m always raring to go home as soon as they will let me, but some people need to sit and recover for a longer period of time.
A little tip: if you haven’t had a procedure like this there is often a lot of waiting around, all patients having similar procedures are booked into the hospital at the same time, then the surgeon works his way through the list. Make sure you bring yourself some form of entertainment, a book/magazine/your phone and headphones so you can watch something/listen to music etc, it can sometimes be hours before you will have your operation. I also took food with me as I have a stomach issue and didn’t want to risk the sandwiches etc you are usually offered, so if you have dietary requirements make sure you take food/drink with you.
My wrist/hand had a plaster on and that was covered by an enormous bandage to protect the area. I was instructed on how long to leave the bandage and plaster on and to keep the area dry (long washing up gloves are great at keeping the area dry in the shower!). You will receive instructions on what to do to care for the area. In my case the stitches were dissolvable which meant I didn’t have to return to the hospital to have them removed, that seemed a good idea as it saved yet another appointment. Unfortunately things didn’t work out so well for me - more on that later!
You won’t be able to use your hand for quite a while so if you live alone prepare food so you can grab something from the freezer, I had pre organised myself for at least a week of having one hand out of action, making sure jar lids weren’t on too tight, fruit was chopped up, things were easy to reach etc etc. You also won’t be able to drive for at least a week, so again I had plenty of food ready at home so I didn’t have to go out to shop for anything.
My hand was numb for the whole day so I didn’t feel any pain whatsoever. The next day my hand was aching a bit, but nothing that was causing me an issue. Eventually I could remove the bandage and then later remove the plaster.
I was keeping the area scrupulously clean but after a few days I noticed an issue at the sight of the 8 stitches. Each of the areas was swollen, hot and very red, they also started to ooze. I have now discovered that I was ‘unlucky’ and reacted to the dissolvable stitches, as the doctor said I had a ‘classic reaction’. I wasn’t shocked as I seem to be reacting to pretty much everything at the moment, also this was considered by my body to be a ‘foreign object’ and as we know lupus rejects anything it considers to be that. I now have the fact I’m allergic to these types of stitches added to my medical history along with the ever growing list of medications that I react to!
I was told the result of the surgery should be almost immediate and in my case it was. I no longer had pins and needles or numbness. During the operation the surgeon said ‘wow the nerve is really squashed’ and called a doctor that was under training to look at it, I expected that once it was released there should be a vast improvement and there definitely was. I had tingling and numbness in all 5 of my fingers and the surgeon did tell me that it wouldn’t help my pinky finger, this is because another nerve, the ulnar nerve, gives feeling to the little finger and half of the ring finger, but since the operation I’m only having occasional minor issues with the other 2 fingers and no issue with the thumb and first two fingers.
2 months later
The surgery usually has a 75-90% success rate which means there is a small risk that it might not work for everyone. In my case I thought I should try as the damage was causing me real problems in my everyday life and in most patients, carpal tunnel syndrome gets worse over time. If untreated for too long, it can lead to permanent dysfunction of the hand, including loss of sensation in the fingers and weakness and I personally didn’t want to risk that happening.
So all in all am I glad I did it? Yes, it can take quite a while for your hand to recover totally, my hand was still a bit achy for a few weeks, but most importantly to me the numbness has gone away and I can now do repetitive tasks with no problems. My left hand is rapidly going down the same route so doubtless I will have to address that at some stage, but not before I have my left hand ‘trigger thumb’ operated on…...lupus the gift that keeps on giving!!
For further information about making a decision about Carpal Tunnel Syndrome please click here.
Angie Davidson
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