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Surgery for my pilonidal disease /  Chirurgie pour mon kyste pilonidal

Surgery for my pilonidal disease / Chirurgie pour mon kyste pilonidal

*FRANÇAIS PLUS BAS* Hello and thank you for your interest I am a 21 year old veterinary medicine student. I live in Estonia where I get to study for my dream job. Everything seemed perfect until one day I started to experience pain around my tailbone area.  I later got diagnosed with pilonidal disease. What is it all about? It is a pretty unknown disease that causes a lot of pain in the lives of those who have to face it. It is a cyst that develops in the sacrum/tailbone area and opens on the skin through pits and sinuses.Basically it prevents me from sitting too long, walking too much, swimming, wearing tight clothes. The worst part about it is that it can stay dormant for a very long time until it flares up, causing excruciating pain.  The only somewhat effective treatment against it is surgery. Unfortunately since the disease is very unknown, surgeons do not always know how to remove it properly, leading to reoccurrence of the cyst. If treated wrongly it will come back. Some people had to get between 20 and 60 surgeries... There is one very effective treatment method, but it is still very rare in Europe and costs a lot (Cleft Lift). It has a 98% success rate if performed by an experienced surgeon. It would get me free of it for good.I will most likely have to go to a specialist in the USA. After contacting the surgeon it appears that the surgery will cost, all included, 15 000 euros. I already have a loan for my studies and can't afford to pay the surgery. This disease is causing me a great deal of stress on top of everything and I am trying hard not to let it come in the way of my studies. I would be immensely grateful if you could help me go back to health. Thank you so much ! It means a lot ! FRANÇAIS Bonjour et merci pour votre intérêt  J'ai 21 ans et j'étudie la médecine vétérinaire. J'habite en Estonie où j'étudie pour atteindre mon métier de rêve. Tout semblait parfait jusqu'au jour où j'ai commencé à ressentir une douleur au niveau de mon coccyx. J'ai été diagnostiquée avec une maladie pilonidale. Qu'est ce que c'est ?  Il s'agit d'une maladie peu connue qui cause beaucoup de douleur dans le quotidien des personnes qui en sont touché. C'est un kyste qui se développe aux niveau du saccrum/coccyx et est relié à la peau par des trous (sinus). En gros, cela m'empêche de m'asseoir ou de marcher trop longtemps, de nager, de porter des vêtements serrés. Mais le pire reste le fait que cela peut rester en dormance très longtemps et se reveiller à n'importe quel moment. Le seul traitement plus ou moins efficace reste la chirurgie. Malheureusement comme cette maladie reste peu connue, les chirurgiens ne savent pas toujours le retirer de la bonne manière, causant la réapparition du kyste. Si il est mal traité, le kyste reviendra. Certaines personnes ont dû avoir entre 20 et 60 chirurgies. Il existe une méthode très efficace mais qui reste rare en Europe et très chère également (technique de Bascom/cleft lift). Elle a un taux de succès de 98% si réalisée par un chirurgien expérimenté.Je devrais très certainement aller aux états unis où exerce un spécialiste de cette maladie. Après avoir contacté le chirurgien il s'avère que le coût total s'élève à environ 15 000 euros. J'ai déjà un crédit pour mes études et je ne peux malheureusement pas payer cette chirurgie seule. Cette maladie cause énormément de stress en plus de tout le reste et j'essaie de ne pas la laisser affecter mes études. Je serais immensément reconnaissante si vous pouviez m'aider à retrouver la santé Merci infiniment !





Hello and thanks for coming by. My name is Lexy, and the adorable pup by my side 24/7 is Jaxx.  About three years ago I was diagnosed with a rare genetic condition, called Ehlers Danlos Syndrome. I have the most common type of Hypermobile EDS. It's a horrible, multi-systemic condition that wreaks havoc on the sufferer, and can affect any number of things throughout the body. For me, personally, I experience a lot of pain and joint subluxations (partial dislocations) and often, full dislocations.  While living in the US I had sought treatment to find out why my neck was so constantly painful, why I had trouble supporting my head upright, and why I almost constantly had a headache, that was only relieved by laying down. While in the Us, I was also diagnosed with Postural orthostatic tachycardia syndrome, Chiari malformation and we still suspect Mast Cell activation syndrome.  With few answers, and a need to return home and escape my troubled marriage, I left the US. Upon returning home, shortly before Christmas, I started slipping in and out of consciousness. It was so quick and successive that I was unable to tell anyone what was happening or reach out for help. My blood pressure was tanking but we did not know why. I sought answers from doctors, neurologists and neurosurgeon team at Queen's square, I was sent for a supine MRI upon which they told me that I did have Chiari but that it was ''not symptomatic'' because of it's size.  Initially, I accepted these answers, why would they not be correct? But my condition declined further and after an incident with my University bed collapsing, I was left unable to lift my head from my pillow due to extreme pain and dizziness. I almost missed Christmas with my family as I was unable to travel for a two week period leading up to Christmas day.  I was frustrated and desperate to know what was going on. I emailed a doctor in Spain, a specialist within our EDS community and found the price for a consultation. In between raising that money and sending my imaging off, I started falling unconscious when lowering my head down. I attended the A&E in Barnet, where I was discharged because they couldn't work out why this was happening.  By the time I sent my images and received my report, my speech was impaired, fatigue was running rampant, and the period of time in which I can remain upright has greatly lessened (about two hours at a time without a break). My gait, breathing and eyesight are all impaired, sporadically too.  I opened the report expecting a few levels of my neck needing to be fused, what I read was shocking. My neck is very unstable, I have little to no spinal fluid flow. I was diagnosed with Chiari malformation and recommended a decompression surgery for those symptoms and the csf flow, Cervical cranial instability and Antalo-axial instability. What this means for me is that I need my whole neck fused, hard.  On the 8th of July I flew out, accompanied by my best friend, to Barcelona to have further imaging and meet with my surgeon. It was confirmed that I do need these surgeries urgently, or I will simply continue to decline at the rapid rate I have been.  I have been given a rough estimate of 50,000 gbp, and understandable, this isn't change I can grab from the sofa cushions, I need help to save my life. That isn't easy to say. Things have deteriorated rapidly since the bed incident, slipping in and out of conciousness, I lost control of my bladder and my spo2 stats drop frequently to below 90. I am terrified of how far I can decline, and what my body can come back from.  So please, if you have anything to spare, please consider helping.  Frequently asked questions: - Why wont the NHS fund this - The NHS have a few reasons, the first is that they don't like operating on people with connective tissue issues, due to the potential complications and risks we pose. They also dispute, despite numerous success stories, that the surgery is beneficial. They don't have a surgeon qualified





Hello everyone, there are two reasons this funding drive exists in chronological order and in opposite order of importance1. Red wine - which made me say yes to taking part in the challenge2. A visit to the children's dialysis unit in Leipzig's St George hospital Nr. 1: After quite a bit of good Italian red wine a former colleague mentioned in February that he will be cycling 900 km across the alps: Venice - Leipzig in the summer. Due to the inebriation I must have looked keen to join because he signed me up. Given that I did not remember this the next morning gives you an idea how the evening went... However I am not one to go back on my word no matter the blood-alcohol level. Overall not a good reason to spend 6 days straight in the saddle of a road bike if you ask me however. Nr. 2: And this is a very good reason to spend several months getting up at 4:30 am to train - a visit to the childrens' dialysis station in Leipzig.These kids' kidneys have failed.They have to show up there 3-4 times a week.They have to spend around 3 hours hooked up to a machine that cleans their blood.Else, without a kidney donor, they cannot survive.This intensive treatment that is required leads to their being unable to even enjoy a proper holiday. Our ride across the Alps is meant to raise money for some of the less well-off families to be able to take vacation together at Ederhof, a farm/ rehabilitation center in the Austrian Alps that has a dialysis unit attached and helps children and families recover from trauma due to chronic illness, organ transplant etc.. Part of the fundraiser comes from our starting fees which cover a bit more than the bare necessities. However this is by far not enough! This is where your support is needed. Please consider donating however much you find appropriate. So far I have spent 2.500 km in the saddle and ridden 18.000 m of elevation gain. The plan is to use the last few weeks to bring the distance up to 3.000/3.500km. Will this be enough to get me across the finish line? I have not idea because I have never ridden for 6 days straight let alone through the Alps. However, whether I fail or succeed is of no consequence to the brave children in Leipzig. So please consider making a donation even though the outcome of this effort is uncertain. I will give it my very best shot and will keep you informed with complete honesty how it goes, that I can promise. Disclaimer: The event is organized by Bike for Charity e.V. and funds raised will be donated to Förderkreis Kinderdialyse Leipzig e.V.. As leetchi is a third party, unfortunately donation receipts are not available. If you would like to make a substantial donation and require a receipt for your tax refund, talk to me and I can provide the account details for the charity directly.


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