Yes, you. The last thing you want to think about or know? Oooo-er.... maybe I don’t want to read this, you say. I might give this a miss.
Don’t.
Statistically, the chances that you do have a brain tumour are small, so don’t get too agitated. Small, yes, insignificant, no. The stats do show that brain tumour detection is increasing in our society, right across the age spectrum. I hate to say this, but children are getting them too, at an increasing rate.
It just may be that some of the things I say here might strike a chord with you, and save your life - or if not your life, that of someone close to you, so it’s worth thinking about. If there is a problem, the earlier you know about it, the better chance you have to fight it.
Just this morning, I was woken by a fairly strong tremor in my right arm. This wasn’t a seizure, just a tremor. It was painless (as they always are), but odd-feeling, just as everyone gets once in a while when they’ve overdone some exercise, or sat in one position too long, or for no apparent reason at all.
It wasn’t the first time it’s happened to me lately, but it reminded me of something that meant little to me at the time, and looms rather larger now. I’m talking about early signals that mischief is brewing for you.
The first real indication that something might be amiss for me came not from anything I was aware of, but from Tracey’s observations. Sometimes in the night, she would be woken by a tremor or vibration in my right leg. As she put it, rather unattractively but accurately, it was a bit like you see when a dog is sleeping and having a dream, and its leg starts to kick.
It could go on for some time – minutes, and started to increase in strength and frequency as well. That was months before I got that first violent seizure in the right arm while pruning the hedge that told me I was in trouble.
It never occurred to me when Tracey mentioned these leg tremors that this might be a sign of irregular brain activity. And even if it had, I doubt I would have thought it could be life threatening.
Even before that, maybe a year or more earlier, I had a permanent sensation that the surface or skin across the whole band of muscle across the top of my right leg felt numb. It never interfered with sport, or walking or anything like that as far as I am aware; just that it was like it had been coated with anaesthetic.
I still have it, though the sensation is much milder since what could be removed of the tumour was destroyed 17 months ago. This change of feeling in those muscles might have absolutely nothing to do with my present condition; I’m just throwing it out there.
Since the first treatment of Avastin last September, we’ve had good control over the seizures that have done so much damage to motor skills down my right side. My fears always were that exercise set off seizures, because so often I had done some form of exercise just before a seizure happened.
So potent was this fear for much of last year that I allowed the strength of the muscles on that side of my body to deteriorate, to the point where the right arm and hand became worse than useless – they were a hindrance. Though the oncologist doesn’t think there’s any relationship between physical activity and seizures, I still do, but the difference is that the seizures are pretty much under control now, when they weren’t before the use of Avastin. Now I can exercise strongly with only minor fear of precipitating a seizure.
Why I mention this here and now is that with the exercise I have been doing to restore the arm’s usefulness, the tremors may actually be due to the fact that I have regained the strength to have the tremor in the arm. You don’t get tremors in a paralysed limb.
You’d think that the tremors I’m now experiencing might be because of increase tumour activity recently, rather than this more innocent explanation. Either or both might be true. Maybe neither, but from my experience I don’t think you can discount one or the other.
The thing is, everyone is so different. The moment you start making brain tumour rules, they tend to fall apart. Something happens to defy them and you have to think again.
The only reason I got these sorts of warnings that something was going awry was that the tumour was located in the left motor centre of my brain. If it had been elsewhere, the indicators would have been different. Somewhere else may have given earlier warning, or much later, when the tumour was out of control already.
Indications
The early indicators are often benign. Painless. That’s the case with a lot of different types of cancers in the early stages, and that’s both a curse and a blessing. A curse for detection, a blessing that there’s no immediate pain. With brain cancers, the added difficulty in detection is that the brain doesn’t have pain receptors in the way other parts of our bodies do. Were it not for the fact that the cranium has to be opened to perform brain operations, you could probably have brain surgery while conscious and not feel a thing.
I feel a bit queasy about that!
We only get the warning that something is amiss when other factors come into play. If, e.g., the tumour starts doing damage in the cranium then there will be inflammation, and pain and/or seizures may develop.
In other words, it’s the secondary symptoms that often give us the clue, not something primary. If you get something out of the ordinary starting to happen to you or a member of your family, anywhere in the body, think about it and get it checked out if possible. Your GP is the starting point. Document these odd events by time and date and symptoms. At some stage, this recording of symptoms over time might prove to be crucial to the survival of the person affected.
I would like to know what a doctor would say.
ReplyDeleteI've had leg cramps at night since I was 25, and in the last few years they have got violent at times. It's classic restless leg syndrome, and it tortures millions of people out of a good night's sleep every night. My father had it, and he didn't get a good sleep until I bought him some efforvescent calcium tablets, which were allowing me to sleep half decently.
Since then, I've learned to treat my symptoms with food supplements in addition to calcium -- magnesium, Vit D3, and most lately and most successfully, Horsechestnut.
Would a doctor recommend a brain scan for leg cramps?
An Armidale doctor I used to see had a patient who came to her with a stomach upset. They tried everything, and finally concluded it was a hard-to-shake virus, and the patient went off to the coast for rest and recuperation, where she dropped dead of a brain tumour.
The family blamed the doctor, of course, but could she send every complaint to Tamworth for a scan, just in case?
I think it's wise to see a doctor, of course, if unusual symptoms appear, but whether the diagnosis will be correct is another matter.
If there are any doctors on this blog, please answer.
Joan - you raise some good points, and what you said reminded me that I was going to make it clear that I'm not a medical doctor, and mine are comments from experience and not from a discplined study of medicine.
ReplyDeleteLeg cramps are very different from what I was talking about. I did experience them at nights on occasions and I know others who suffered from almost every night from leg cramps until they sorted out the remedies required, as you have. It’s not a pleasant condition.
I very much doubt a doctor would recommend a brain scan for leg cramps. I certainly wouldn’t suggest it! Tremors are very different as they are likely in my view to be connected with neural activity and not vitamin deficiency.
My point was to be on the lookout for unusual symptoms in life and not to be afraid of seeking proper medical advice for odd ones. That doesn’t mean the doctor will have a solution, but your symptoms might fit a medical condition well known to a GP.
And of course, doctors don’t always have the answers and we’ve seen many times when they have made an incorrect diagnosis, sometimes with fatal consequences. My plea was based on personal experience, and that ignoring unusual occurrences is unwise.
I totally agree. I just thought that a doctor might dismiss your symptoms as mere leg cramps. "Cramp" isn't really the right word to describe them. My leg jerks violently and will not stop -- very close to your description. Just like a sleeping dog, and sometimes a sleeping pussycat, although cats are far more delicate, refined, and dignified in their twitching.
ReplyDeleteI suspect Tracey just thought that her old dog was up to new tricks, chasing rabbits in his sleep.
I would like to know, though, whether your prognosis and treatment would have been different had you presented earlier, with a twitching leg and numbness. That's why I asked if there was a doctor in the blog.
Another reason that brain cancer can be exceptionally tricky - the uniqueness of each person's afflictions. My dad, who was in exceptional physical shape, set to compete in an Ironman triathlon after months of vigorous training at the age of 66 when he was diagnosed with GBM, had only one symptom until the day his tumor was discovered: slight loss of balance due to a gradual decrease of sensation on his left side over the course of a couple of months at most.
ReplyDeleteAs a caregiver and since my dad's passing, it's been a struggle for me not to get alarmed at every ache or bump I come across. For me, it's been really hard to shake a sense of foreboding for me personally, and I think it's because we were caught so completely off-guard by my dad's diagnosis as well as his rapid decline.
I especially appreciate your tip about documenting symptoms; I've heard people say a good rule of thumb is to wait and keep watching for a period of up to two weeks when something (not too drastic) is noticed, and I think good notes or even photos or videos of what's going on can result in a faster, more accurate diagnosis.
Stephanie: I was quite shocked when I read that I had a new blog comment on an old posting [this one, nearly a year ago.] because I had no idea I had already written in such detail about this. [The result of short-term memory loss – I blame medications more than age.] These are things I was ready to write about again, and not much has changed with my opinion, except that the tremor in the right arm mentioned above has developed much more strongly throughout the right side.
DeleteYou will probably be far more conscious of such possible symptoms for yourself because of your Dad's case, and caring for him over the terribly short time he lived afterwards. [I have gone a fair way through your blog but not finished yet.] I'd say keep the diary of any possible symptoms, but try not to be too concerned by them unless they recur and in your estimation could be connected to adverse neural activity. Specialists tend to have limited time so precise notes/photos are best I suspect, but by all means take the video as well. I'd also say if you really have a suspicion, make an appointment with your doctor and talk about it as soon as possible. Many a person has died of a heart attack waiting two weeks for further symptoms. I'll refer to this and give a clickable location in the latest postings.
Thank you! You have saved me some [self-inflicted] work. Typing one handed with constant arm pain [from a fall last month] is no easy task.
In answer to Joan's last comment, which I read but failed to respond to, I suspect most GPs would say, wait to see if this continues, but some would have ordered a CAT or MRI scan immediately. Their problem is accusations of over-prescribing and/or the consideration of cost for the patient. Hard for them as they cop criticism both ways if nothing is detected.