There is a lot of information out there on the importance of seeking a second opinion if you’re unsure of a diagnosis, and at Isabel we blog about it all the time. We stress the need to use validated, professional symptom checker tools to open up the conversation with your doctor and ensure many possible diagnoses have been considered.
But reaching the right diagnosis is just the beginning of the journey - what about the treatment? For many conditions, such as tonsillitis or even something more serious such as diabetes, there is only one or two medical routes to take. These treatments have been validated, tried and tested around the world, and there are no further questions to ask. However, what happens when the treatment options are as varied as the diagnoses you and your doctor discussed, as with diseases such as cancer or complex infections? As the internet enables us to research our diagnoses, so it should also be used to query different treatment options. Treatments will inevitably depend on many factors out of your control, like budget, where you live and when the treatment needs to start. If you’re prepared to look further than the options offered by your local clinician though, the results can be surprising.
Googling is the starting point for most questions in life nowadays, be that “how do you treat asthma” or “where can I buy stamps.” Often the most reliable and patient-appropriate advice for diagnoses, however, come from the numerous Patient Forums, advocate groups and charities out there. No one can understand your anguish, pain, frustration or confusion more than a fellow sufferer, and friendships have been struck up as a result of the online sharing of (often very personal) health information. Posting a question on a Patient Forum connected with your particular condition will frequently result in a plethora of replies, sympathy and support. And while you can’t rely on this information in the same way you can rely on a medically validated and published paper, with a bit more hunting you’ll soon find a consensus of opinion to help you make your mind up, which you can then take to your doctor and discuss as an option going forwards with your treatment.
Pilonidal Sinus is a small cyst which occurs in the cleft at the top of the buttocks, and due to its location, it can cause extreme pain and render the patient virtually bed bound as sitting or standing are just too painful. When my son suffered with this painful condition, I wanted to make sure he received the best treatment for his diagnosis.
The standard treatment offered is drainage under anaesthetic followed by daily wound packing. Packing seems nothing short of barbaric, requiring the patient to visit a nurse daily for 6 weeks to have gauze removed and replaced. For some, this simple procedure is so painful, the patient needs a local anaesthetic. The theory goes that if the sinus heals from the inside out, recurrence should be minimal. It’s only when you look on the internet and find out that some patients undergo this barbarism at least once a year when the sinus repeatedly rears its ugly head - sitting or walking during this 6 week period is virtually impossible so life goes on hold - that you start to question whether there are alternatives.
And so two years on, when the sinus did return, we ignored the standard advice from our doctor (more drainage and packing) and sought alternatives. But we needed a thick skin. When the majority of the clinicians you speak to confirm drainage and packing, it’s hard to ignore…until you ask them why? And the general consensus is “well that’s what we’ve always done and that’s what we were trained to do”.
In an article about abscess packing, Jillian Knowles, an emergency medicine physician assistant in the Philadelphia area comments: “There is something so barbaric to the idea of shoving a foreign object into someone and telling them to come back again in 48 hours to have it pulled out again…..in the world of so many medical advances, are we really still at this point?” In a review by the American Journal of Emergency Medicine, it was demonstrated that packed wounds do result in delayed wound closure, with closure times basically doubled. However they also found that the rate of wound reoccurrence was equal.
So where to now? This was when we turned to the Patient Forums and Charity helplines. Suddenly a whole new world of real life experiences opened up to us. On Pilonidal.org I posted queries and read up about all the different treatments available. And from this I got opinions that mattered: I got feedback on whether or not to pack, on different surgical options, recovery time, on causation, on scar appearance and, at last, a Colo-rectal surgeon who tells us what we want to hear: that in my son’s case, packing, is a waste of time: "get it drained and healed and once it calms down, start investigating surgical options”. Well that’s another journey but at least now we were on the right track.
The moral of the tale? Don’t necessarily opt for the first treatment offered: investing time in researching your treatment could, in the long run, save you time, pain, money….even packing!
If you're concerned about your diagnosis or the treatment options available, use the Isabel Symptom Checker to check out your symptoms, and once you have discussed the findings with your doctor and reached a diagnosis, research the condition.