19 August, 2012

Disastrous IPL in 2005


The only option left for me seemed IPL, Intense Pulse Light therapy, or laser therapy. This is used for vascular rosacea sometimes and aims to burn away some of the superficial blood vessels in the skin, therefore preventing the skin from becoming red. I was doom and gloom by then and fearful I would worsen matters even more. So I went through every post I could find online, all the forums. Emailed patients to ask for their experiences with laser or IPL. Tried to find out what my chances for success and failure were.

IPL and laser are rosacea treatment options that can help many patients to control or even eliminate facial redness and flushing. Many found good success with it, but there are risks involved as well and I seem to have been very unlucky so far with IPL and laser, because they either did nothing or made it worse. For many, this is not the case and they help control symptoms, but I write about my own experiences here and unfortunately, they weren't great so far. If you consider IPL or laser for your rosacea, it is always wise to read up on the procedure and the doctor doing it, and have test patches done, to see if your skin can handle the treatment and the settings the doctor wants to use on you.

I have had a couple of IPL treatments over time. My first full face treatment turned out very bad, unfortunately. In summary, I think I was treated with an older and outdated IPL machine (the quantum, whereas the later Lumenis One machine didn't give me worsening). My dermatologist also thinks that what went wrong as well with that first IPL treatment, is that a shallow filter was used (the 560 filter), which is good for superficial redness but I have a flushing problem, and very sensitive and hyper reactive skin. The 560 filter can work fine for some (also depending on the amount of joules/energy that is being used), but can trigger inflammation and in my case a lot of extra redness and blood vessel formation in some others. For my rosacea, it was the wrong treatment. I could and would have known this before having my whole face zapped if I had had test patches first.. I ended up with rosacea that was much worse than before, with redness and flushing all over my face where I was zapped with the IPL whereas I used to have it only on my upper cheeks before. BUT this very rare to happen. It is not the norm. Many people have good results with IPL or laser and a lot of improvement from it. Later I saw Dr Crouch in Swindon who took a lot of time and good care of me and did test patches, to fidn the right settings for my particular rosacea skin.
It's just important to have a good specialist and to take your time to test the right machines/settings I personally think... Find someone who has experience with rosacea treatment and always ask test patches first. Also, be prepared for the first 3 weeks after treatment to be a bit more flushy perhaps. That's normal and the bodies response to the mild injury often


As for my experience; I posted several times about this on the rosacea forum, and I would normally never talk negatively publicly about any professional doctor, but in this case it is so important to have a good practitioner who doesn't just gamble with our faces that I rather just tell things as they are. I went to the terrible Dr Mervyn Patterson from the Woodford medical clinic in Danbury, UK. I found good reviews on him on the internet and had been studying things for a few months before deciding to talk to him. I was very careful and flew over from Holland just for a consultation and to discuss any possible risks. I had mild to severe rosacea by then, playing up at least once a day but not as bad anymore as it had been in the past. But still enough obviously to really bother me. I told him: if there would be any chance of things becoming worse from the treatment, I didn't want to undergo the IPL. He ensured me he never ever had had a patient who had become worse, only people who responded well or not at all. Patterson also told me IPL was the only option left for me in his opinion and that he thought I was a very severe case anyway so I should just do it. Test patches were not necessary according to him, although I asked for some. BOY did I regret not pressing this request at the time.... I only had rosacea on my middle/upper cheeks at this point, but he found it necessary to treat my whole face (full cheeks, chin), the next time I came over.. He used the Quantum IPL (an older machine by now) and the shallow 560 filter, 2 passes I think. 


Before rosacea
While lying there, I felt an intense feeling of distress and doubt gushing over me, as the zapping was so incredibly painful and hot. I was half ways and about to tell him to stop with it, wondering how this could in any way improve things, this was near torture. How could this not cause damage? But my mum and sister had come with me and I didn’t want to look like I gave up. And on the forums people mentioned this sensation a lot, it didn't seem to influence their end outcome badly. If anything, when you felt nothing when a doctor zapped, th├ít would be worrisome as well because the treatment could be inefficient then. S, I reckoned, perhaps this was what I was meant to feel. But I didn’t feel comfortable or calm at all. We needed to buy packets of frozen peas on the way back to cool my face, and I was flushing uncontrollably. The plane trip back to Holland was a near nightmare, even the airport itself; I was redder than bright red, the flushing and intense heat and burning from my cheeks was immense, everybody stared at me and I kept putting the frozen peas and packets of ice cubes I asked at the drink counters all over my face. 

The next days I was very swollen and my skin looked more pale again, although it was still burning. But it was just the extra fluids that made the skin look more pale I found out soon. As soon as the swelling came down, the flushing came in full force, 10 times worse than before. It didn’t stop after the 3 week mark, nor after 4 or 5 weeks. I emailed dr Patterson many times and he kept saying it was all normal. I was depressed beyond words, I had expect to get rid of the annoying occasional flush and now I needed a fan on constantly and I was just cooling most of my day and night. When I went through the pains of flying back to Danbury to show him my purple and swollen face, I had some spark of hope that he would be able to fix this. But disappointingly he just gasped a bit, said I was indeed very red and very flushed, and that he didn’t want to treat me anymore. When I asked him what went wrong with the IPL and why this happened, he dismissed the IPL as the cause (!!!!) My sister had tragically died some months before and he said it must have come from the grief. I could only look at him in bewilderment and utter that this was just an outrage and the worst negligence I could imagine. He caused this, surely being the specialist he could come up with something to turn all this back? Or maybe even partly? And why blame it on some tragedy in my family life? It was directly related to that IPL treatment, only after it this reaction set in. In response: nope, nothing. He said he considered me not a good candidate for IPL after all and good luck with it all. I didn't even get a refund (asif that meant anything to me anyway, but just to stress the ridiculous situation). Now I remembered vividly the contract I had to sign in the waiting room, minutes before the procedure started; nice calming music in the background, testimonials from happy patients all over the walls and in reading files. 


During rosacea, 2005
To me it started to seem he had been after quick bucks and took his hands of it all when things got worse instead of better (or even no effect would have not bothered me). Perhaps some patients had done well with his approach, but there was clearly not a lot I could expect from the man anymore. The harsh treatment made my rosacea permanently worse. I read about people with a similar negative experience by now (why didn't I read those before the treatment??) and I focused my hope on some of them improving over many months. But mine didn’t settle down with time. In fact, that year (2005) was the most difficult one of all; I was cooling 24/7 and my face was one big red flushed mess. I could control it for an hour with a fan and airco on and as soon as I went outside, even to go to the shop for 5 minutes, it was a burning inferno again. So I took my cold packs with me and looked like an utter crazy person, and the looks and stares were just the most humiliating thing I have ever gone through. My relationship stranded, to make matters worse, some months after my sister died. Just one great year. I cut down on my diet, and lost weight and more weight. All I focused on was keeping my sanity, finishing my art history studies at university, keeping up with my friends as well as I could (but I found it hard to related to them -and vice versa- when their lives seemed all great and positive and they didn't really understand why all I was spending my energy on was this red face of mine).


I was about to fly to the US for a consultation with another rosacea doctor, desperate for new starting points to work on all this again, when a great friend from the forum, Peter, convinced me to try see, Prof. Tony Chu from Hammersmith hospital, a dermatologist with a vast experience with rosacea who -according to him- helped him tremendously with his rosacea and thought outside the strict medical box. I had already dreaded the long flight to Houston and the whole undertaking and was happy to give it a try. It was this doctor who prescribed me medication that finally took the worst part off the flushing and inflammation. The meds were clonidine (0,075 mg every 8 hours), remeron (15 mg) and propranolol (40 mg, every 8 hours). Within days of starting with the medication I felt the burning get less and I actually slept properly on the remeron for a change. It felt after a few weeks as if the threshold for my flushing was significantly heightened. It was such a relief. The remeron gave me back my apetite and I went from 48 kilo's to a more healthy 60 kilo's within a few months. 

I also saw Dr. Crouch (Swindon) who has been extremely helpful in the years afterwards, doing numerous Lumenis One test patches. Endless test patches I have to say, and he explained to me why he thought the IPL with Patterson had gone wrong. My skin is ultra sensitive and the 560 filter was way too shallow and too harsh for my delicate skin, heating the epidermis too much and causing much more flushing and inflammation and just sending me from mild rosacea straight to severe rosacea. After all this I went looking for more information on Patterson, like I had done just after the treatment, and I must have not done a proper job before seeing him (or having a preference for only the POSITIVE reviews prolly) , because again I read many testimonials from his patients who had similar deterioration. For me, medication did help to bend the severe post treatment flushing around. The test patches with IPL and laser all showed some improvement, but the full face treatments I had later gave worsening again, although this time only temporary. But they never gave me the same improvement as the small area tests. I therefore am having small area's treated at a time now, and spread over a long term plan. This is expensive and time consuming, but I can't deal with the stress and insecurity of another full face treatment again. 



For rosaceans who are looking into IPL or laser, I would just always go for (multiple if necessary) test patches to be sure a treatment or setting is helping. Test patches should at least show some improvement, or I wouldn't risk my face for it.. However, for a lot of people IPL and laser seems to work well and instantly, I still don't know exactly why some, like me, respond negative to it. It might be the practitioner, it might be the machine, the energy that's used, the state of our skin, sensitivity to light, medication use.... It remains very frustrating. Pls read my next blog post about IPL/laser for rosacea, and patient reviews here




Before and after:







Before

 









In London, early 2005, with my sister and mother to have my first IPL treatment




 





A few days after my first IPL treatment, skin still swollen





And then the redness sets in....








And it stays red, all year..



 


 









After a year of burning skin-hell, medications start to help cut down on the flushing and redness. This picture is taken in 2011



As you might see I basically went from mild and confined, limited redness to more severe redness over both of the full cheeks. (I usually never wear make up apart from occasional mascara or for special appointments), so the middle section of pictures show exactly what my skin looked like). The flushing increased tenfold, if not more. I used to think I had bad rosacea, because I would stay pale most of the day but start to flush badly from certain foods or stress or heat, but at least I had limited and temporary flushing then and my skin could look kind of normal in color for a long time, so in hindsight it was not that bad actually. Now I wished I could go back to that state every single day. I am almost always either pink or red and I flush much more easily, from more triggers and on many more occasions. Need to stay cool or cool my face most of the time. And worst, the severe burning and pain from it. I never have been able to cut fully back on the way that IPL treatment worsened things for me, but tried over 10 times to do laser test patches in the years ahead. Both in the local hospital under guidance of my local dermatologist (old fashioned pdl and IPL machines, I had little expectations from the start but my derm was adamant that it helped most of his patients- not me), and under the professional guidance of Dr Chrouch. He was great and very patient and careful with the testing and I later had eventually another full face IPL with him (Lumenis one triple pulse), but for some odd reason the test patches had shown some clearance, yet the full face treatment must have been 'too much' and gave only 3 weeks of massive red inflammation and then no change at all. We both thought that maybe it came down to us needing to do the IPL in very small sessions, so the skin can handle the small scale trauma. But test patches just don't do anything, or stir matters up, so the latest he said was that I might be photosensitive and just not a good candidate for IPL. I also went to a professor laser specialist in Melbourne (Dr. Goodman), Australia for v-beam laser treatments (twice) on the lower half of my cheeks. The same thing happened there.

I am still hoping in the future I can use laser or IPL (in small patches) to clean up this vascular mess I have but I am in no rush. Both Dr Chu and my German dermatologist are very weary to say the least about the treatment of reactive vascular rosacea with IPL or laser. I now find medication so far most helpful to constraint the flushing to a decent degree. Am still looking for the perfect anti inflammatory to suppress the redness but things look a lot better now. However, as soon as I stop taking my meds things go downhill fast again, I tried at least 3 times now to stop with them only to see the flushing come back with a vengeance.



In summary, IPL and laser can help a lot of patients, but its not a given and these machines are powerful and have the ability to make things worse as well. The more sensitive your skin is, the more severe your rosacea and flushing and redness, the more risk you have of IPL and laser either not working sufficiently or making matters worse. The aim is not to scare anyone away from IPL or laser, but to make a well informed decision, something I thought I did at the time, but in hindsight clearly didn't. Doctors might tell you IPL or laser is your only option left, that they never made a patient worse yadayadayada, but reality is that some people DO get worse from it. I would therefore always take your time to do test spots, with different machines and filters if possible, and not on your most sensitive inner cheek area, and take the time to get a clear image of what is working and what not. Don't let impatient doctors rush you, this is your face they are dealing with. Dr Mervyn Patterson in the UK said he never made a patient worse but he made my rosacea 10 times worse. I understand that doctors are no magicians and that no matter how good the care, treatments can not work out. What really infuriated and saddened me is that despite trying to take precautions, this doctor wove away my concerns and request for test patches, he ignored me wanting to have a (cheaper probably) partial face treatment and when things went into a nightmare, he offered nothing in return. No back up plan, no responsibility, and he said he had done nothing wrong, this couldn't have been the result of the IPL and had to be due to the stress of losing my sister a month earlier. It doesn't get any worse than that I think. Of course he didn't want to treat me any further. He withdrew from all responsibility and just shipped me off as a non treatable patient afterwards, 'Thank you, next patient!'  I remember wandering through Danbury with an almost maroon colored face, applying quickly bought bags of frozen pees to it and feeling depressed to the core. Awful times. I hope it was a one time misjudgment thing on his behalf and his patients are contend nowadays, but I got the impression he was only interested in cashing in and had absolutely zero interest or care for me once things messed up badly.


Most doctors won't be like that, but they will want to sell procedures and you are the only one responsible in the end for the decisions that are made and the consequences. Think wisely and limit your risks, always have test patches done first and if you want to try IPL or laser for rosacea, knowit helps a lot of patients, despite the horror stories out here on the net, but that you best find a doctor with experience in treating rosacea patients..



1 comment:

Please email comments to scarletnat@gmail.com or add me at http://www.facebook.com/scarlet.nat.3