Conditions with symptom: 'cleft'
How come surgeons and GP's continually ignore my plea's for help when asking them for an operation on my PS even when i tell them I have had a 5 month long infection brought on by the PS. I've had 6 operations in 4 years, i first went to see about it when i was 27, 9 years after i first felt the lump. The infections started soon after my first incision and drainage healed. Since then it has been non stop infections and operations, symptoms of infections are constant dizzy spells, high temp, sleeping a lot, jelly legs. I am feeling somewhat lost at the moment because I cant find a surgeon that will take me seriously. My PS has not been showing the usual redness associated with the problem which makes it harder to argue with surgeons. The redness stopped appearing after I had the cleft closure 2 years ago.My bloods are coming back normal too. When the cleft closer was done the hair was tracking 6 inch's through my buttock which lead to an abscess the size of a golf ball. When the sinus came back after the cleft closer it was 9 months before i found someone who would do the operation. I lasted 6 months before the sinus appeared again and the whole process is starting all over again. So according to the people I have seen so far they say its not serious enough to do anything yet, even though its only weeks away from bursting through a scar on top of a scar. The whole cleft closer is feeling very swollen and numb, it's aching all day too. The reason I think I am getting these infections is because all in all its been 13 years for me up to this point living with this continual problem.Its the infections I fear the most, I'd rather have the pain from operations than to be left living like this! CAN ANYONE PLEASE HELP WITH THIS MATTER BEFORE I KNOCK THE NEXT PERSON OUT THAT TRIES TO TELL ME ITS NOT SERIOUS???? P.s. At my wits end!!!!!
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My wife is in the same position. They have advised a procedure known as the Limburg flap, but again it's not 100% to cure it. She is also at her wits end, I personally think it is something that she will have to put up with for the rest of her life, I wish you luck for the future
I am 28 years old from the uk Is there any groups where i can meet there people like me i got a cleft plalete because i have no one else to talk about it
I was born with cleft lip and palate. I am 20 years old and had my jaw operation 2 weeks ago for under-bite and now I can't talk properly. When I talk Air is coming out through my nose so when I speak people can't understand what I am saying. I never had speech problem before the operation, I don't Know what to do, also when I drink something the liquid is coming through my nose.Someone please help me, I am 1st year medical student and I dont want my education being disturbed by this speech problem.
My daughter had the jaw surgery with no effects to her spoech but beforehand we were told there's a risk of speech changing but the surgeon said it happened to one patient in 20 years of him performing the procedure. Kavitha you need to contact the surgeon asap!!!
Hi, I'm a 25 year old female. I'm in general good health apart from my PS! I had my PS in 2009. It was initially treated with antibiotics, but then it burst, so I was admitted to hospital. I was admitted on the Tuesday, and was not operated on until the Friday so the PS just continued to fill up with puss!! When I eventually had it drained and debrided, I was left with a LARGE cavity starting at the top of my cleft and then deviating off upwards, downwards, and to the left!! It was packed daily for six and a half months with dry ribbon gauze, and despite strong, regular pain relief the daily packs were the most painful experience I've ever had. During the six and a half months I was on and off antibiotics for re-occurring infections, which naturally led to several bouts of thrush! I still experience pain in the area frequently when sitting for any longer than 30 mins, or if I wear tight clothing. I also experience regular infections! All in all, my PS is a real pleasure to live with. However, I do not fancy being admitted to hospital again and going through another six months plus of pure hell. I find it very hard to live with as it really gets me down. I also find it quite frightening in case I do end up needing more surgery (as has been previously suggested by my G.P.) Does any one else have any re-occurring problems like this? And any advice on how they deal with it? THANK YOU!!
Hi Lucy, I have suffered from this for 3 years now, and I have just had my 4th operation, but this one was different, usually it is removed, packed and left to heal from the inside out, but if you see your gp, ask if they can arrange an appointment with a surgeon in the colorectal unit in addenbrookes hospital, it has worked wonders for me so far, and they are the best surgeons I have had, they talk you through it, stay in contact after to make sure you are ok, it's a shame I didn't see them first.
ive had this condition for 5yrs an had 9 operations including draining an more servere. ive now had a seton cutting stich put in an was absolute horrendous pain at first it seems ok now although i have to go an get it tightened in 3 weeks. im hoping this will be the the end of my nightmare
I don't know if anyone will be able to help me or give me any advice on what I'm about to tell you , I am a Triple X female at the age of 27yrs and my doctors told my parents when I was a baby I would never walk sit or talk I proved them wrong my mum sent me to mainstream schools and I struggled from time to time but made it through .I have many symptoms which include OCD (checking) , Asthma, Chronic Depression and anxiety \ emotional issues , Stomach Problems, i have a smaller mouth than usual and i had 19 teeth took out all at once as my mouth wasn't big enough for my big teeth to come through i have Flat foot and also some Social Phobias. I had a operation at age 9 as i had a cleft pallet .I started puberty and my body started to change at around 12 yrs old where i put some weight on and at 14 had only 1 menstrual cycle since they my body has never really developed like any other what we call normal female .My bone structure is 3 years behind so my bones are 24 rather that 27 I have to take the pill daily as I do not produce oestrogen there for I have ovarian failure and I am unable to conceive naturally due to early menopause syndrome and i am also prone to osteoporosis . My main reason in contacting you is because of my weight i am obese and due to my ovarian failure and going through the menopause and my metabolism is very low therfor i find it very difficult in losing my weight i feel like my doctors basically don't care and i don't seem to receive enough support to help me it is like they don't understand . My BMI is at 41 and i need to lose weight not just for my self but also to get the one thing i can not do and that is to conceive naturally its so hard to find out that you will never have your own children but where there is help on the NHS you have to obied by there rules and be at a certain weight/BMI of 30 if and when i do reach my goal weight i will receive 3 free goes at IVF . i have found it very difficult over the years to lose weight and i don't know which way to turn for help next all i want is to conceive . i am hoping someone can help me in any way / advice . Also i have never come across any other female or male with an triple x syndrome / xxx chromosome until i met my partner David through my friend he is 31 and he also is a extra x hes syndrome is called Klinefelter syndrome which make things even more complicated for us both to conceive as he is unable to conceive naturally also . you can read about our syndromes by searching for them on any search engine Thank you for your time im sorry about the long essay Amanda Jane x
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