The Mini Op and coming home

It went fantastically well, got to the Hospital by 7.30am Monday the 18th July My Mum's Birthday and my friends Kim's birthday. And by 12.30pm I had been down, given the injection of Marcaine into the joint, had my Arthogram, X-rays and Kenalog Steriod inside the joint and brought back to the ward. It was quick painless and I was treated fantastically by the staff. They were friendly and thorough and all you could ask for.

I had to stay for observations for at least 2 hours so it was around 3pm before we got to the car and ready to come home. Bit nervous as I normally have a day or two in Hospital to rest away from the Children and household chores, so not sure how this will pan out.

Got home and the journey was easy enough thankfully, and I had the first set of pain killers and I fell asleep straight away. In fact I slept all night, right the way through to 7.30am the next day!!

I was woke up with pain, a nagging toothache like pain in the pelvis. And on rising from bed I noticed how strangely stiff and cracking the Left hip was. The Right hip is sore too but thankfully the Marcaine is still in affect and will be for a few days. Once it wares off though I've been warned it can feel bad, and too be prepared by taking full doses of Painkillers every 4 hours rather than waiting for the pain to arrive and the deal with it. Got a bit more emotional and weak today, as I think the children think I'm better than I actually am and just bickering, arguing and generally being too loud and too much for me too cope with. I ended up crying my eyes out, mainly from sheer exhaustion and feeling pain. I just need to sleep and eat at the mo and not much more.

I slept perfectly again, I could get used to this, If only I didn't still feel worn out and like I've been hit by a train. I can feel the Groin pain more today and when I get up from seats, when the quad muscle contracts. So stocking up on doses and riding the waves as best as I can. I've had to do some chores, like washing and making drinks, breakfast and wrapping up parcels from things I've sold and after each small chore, I've felt like I've completed a marathon, the chest is all tight and I find it hard to breathe. And I'm still shaky when standing for too long. I know I have pushed it way too far today, so pulling back and I'm taking the rest of the day off.

Got to keep a diary about the pain, and whether the Kenalog kicks in, in around 2/3 weeks time and if so how long for etc.... As I have my post op appointment on the 13th Sept 2011 and hopefully we can find out the results and decide on the action plan. Fingers crossed the Kenalog will work and the femur ostestomy will go ahead come Christmas.

The Mini Op and coming home

It went fantastically well, got to the Hospital by 7.30am Monday the 18th July My Mum's Birthday and my friends Kim's birthday. And by 12.30pm I had been down, given the injection of Marcaine into the joint, had my Arthogram, X-rays and Kenalog Steriod inside the joint and brought back to the ward. It was quick painless and I was treated fantastically by the staff. They were friendly and thorough and all you could ask for.

I had to stay for observations for at least 2 hours so it was around 3pm before we got to the car and ready to come home. Bit nervous as I normally have a day or two in Hospital to rest away from the Children and household chores, so not sure how this will pan out.

Got home and the journey was easy enough thankfully, and I had the first set of pain killers and I fell asleep straight away. In fact I slept all night, right the way through to 7.30am the next day!!

I was woke up with pain, a nagging toothache like pain in the pelvis. And on rising from bed I noticed how strangely stiff and cracking the Left hip was. The Right hip is sore too but thankfully the Marcaine is still in affect and will be for a few days. Once it wares off though I've been warned it can feel bad, and too be prepared by taking full doses of Painkillers every 4 hours rather than waiting for the pain to arrive and the deal with it. Got a bit more emotional and weak today, as I think the children think I'm better than I actually am and just bickering, arguing and generally being too loud and too much for me too cope with. I ended up crying my eyes out, mainly from sheer exhaustion and feeling pain. I just need to sleep and eat at the mo and not much more.

I slept perfectly again, I could get used to this, If only I didn't still feel worn out and like I've been hit by a train. I can feel the Groin pain more today and when I get up from seats, when the quad muscle contracts. So stocking up on doses and riding the waves as best as I can. I've had to do some chores, like washing and making drinks, breakfast and wrapping up parcels from things I've sold and after each small chore, I've felt like I've completed a marathon, the chest is all tight and I find it hard to breathe. And I'm still shaky when standing for too long. I know I have pushed it way too far today, so pulling back and I'm taking the rest of the day off.

Got to keep a diary about the pain, and whether the Kenalog kicks in, in around 2/3 weeks time and if so how long for etc.... As I have my post op appointment on the 13th Sept 2011 and hopefully we can find out the results and decide on the action plan. Fingers crossed the Kenalog will work and the femur ostestomy will go ahead come Christmas.

DVT's PE's and Blood Clots in General.

Well I've now had my Pre-op and all is well, seems to be there are taking the past dvt seriously (thank goodess) after the BBC news peace I found, shame it wasn't screened or prevented as it should of been in the first place! Here is the link http://www.bbc.co.uk/news/health-14124441

I think you will find the results shocking, and depressing. We need to spread awareness of blood disorders more, especially when 25,000 deaths can be prevented. No one tells you that you will and can be forever changed after experiencing a blood clot. Most people know it can kill you, but most don't realise that some clots go symptomless (mine) for weeks and then kill you! In fact for obvious reasons the symptomless ones are the worse as it only takes one small knock to dislodge it. There isn't a day that goes by that I'm not grateful for being alive, and that it was discovered by chance at 6 weeks. By that time the clot had spread from my Pelvic cut, the join where the hip meets the pelvis down to the back of my ankle. It only started to swell ad get painful down near the ankle, prior to that the thigh was badly swollen anyway from the surgery, and it was painful behind my knee which was tendinitis which dvt's have the same symptoms as.

If I had been given the correct tablets and stockings at the hospital I know it wouldn't of got that bad. But in saying all that I understand that I'm young, likely to recover quicker (before we found out I've got EDS Type 3, that explains the slow healing now) and be mobile quicker, so resources would be better on an elderly patient and not me. But I didn't heal, Blood was thick and I got the dvt within the first night of hospital. After finding out that stockings alone can prevent a dvt 100%, this has driven it home that every patient should be getting them, even if in bed for one night, anything that makes them sit down for longer periods than normal and exercise or walk less needs these stockings. You can even find funky ones at www.happyhealthylegs.co.uk run by a funky young lady, which has suffered herself with dvt's and has to wear these compression stockings all day every day.

So campaign and campaign and more campaigning is the way forward. Get it trending on Twitter and hope some people are made more aware. DVT is NOT something you ever ever want to suffer with, as you will do exactly that, SUFFER if you LIVE!

DVT's PE's and Blood Clots in General.

Well I've now had my Pre-op and all is well, seems to be there are taking the past dvt seriously (thank goodess) after the BBC news peace I found, shame it wasn't screened or prevented as it should of been in the first place! Here is the link http://www.bbc.co.uk/news/health-14124441

I think you will find the results shocking, and depressing. We need to spread awareness of blood disorders more, especially when 25,000 deaths can be prevented. No one tells you that you will and can be forever changed after experiencing a blood clot. Most people know it can kill you, but most don't realise that some clots go symptomless (mine) for weeks and then kill you! In fact for obvious reasons the symptomless ones are the worse as it only takes one small knock to dislodge it. There isn't a day that goes by that I'm not grateful for being alive, and that it was discovered by chance at 6 weeks. By that time the clot had spread from my Pelvic cut, the join where the hip meets the pelvis down to the back of my ankle. It only started to swell ad get painful down near the ankle, prior to that the thigh was badly swollen anyway from the surgery, and it was painful behind my knee which was tendinitis which dvt's have the same symptoms as.

If I had been given the correct tablets and stockings at the hospital I know it wouldn't of got that bad. But in saying all that I understand that I'm young, likely to recover quicker (before we found out I've got EDS Type 3, that explains the slow healing now) and be mobile quicker, so resources would be better on an elderly patient and not me. But I didn't heal, Blood was thick and I got the dvt within the first night of hospital. After finding out that stockings alone can prevent a dvt 100%, this has driven it home that every patient should be getting them, even if in bed for one night, anything that makes them sit down for longer periods than normal and exercise or walk less needs these stockings. You can even find funky ones at www.happyhealthylegs.co.uk run by a funky young lady, which has suffered herself with dvt's and has to wear these compression stockings all day every day.

So campaign and campaign and more campaigning is the way forward. Get it trending on Twitter and hope some people are made more aware. DVT is NOT something you ever ever want to suffer with, as you will do exactly that, SUFFER if you LIVE!

Holiday Evissa Baby!!!!

The Holiday was totally amazeballs and just what the doctor ordered, In fact they should prescribe sunny holidays for those recovering!!! I feel like a new woman...... well not quite but it certainly lifted my spirits and cheered me up again. It was beautifully hot and warmed the old bones up, and we spent lots of lazy days on the beach or in the hotels garden. We pottered around the town a little a night for our late tea's and to visit the beach near the hotel for the best sunset views on the whole island. It was sheer heaven, and physically,mentally and spiritually i needed it. For 9 days we could forget chores,bills,medicals,doctors and hospitals and be pampered and catered for.

Although it's all there when you get back, you feel renewed so it takes the sting out. The hip played up every day but i took a full days dose of Tramadol and Co-codamol to help cope with the situation. And a sheer bloody mindedness really helped too.

Well the next appointment is the 18th July and i thought it was just for a Cortisone Injection and MRA but i have found out they are knocking me out for the entire time, so they can examine the hip and joint without the hinderance of me moaning and the pain. In one way i feel blessed that Mr O wants to examine the hip properly rather than open me up and see, and he is taking the problem seriously (something i have struggled with, with other doctors and physiotherapists) But the otherhand i'm terrified of going to sleep once again, fear the pain the examination will bring and the decisions to be made afterwards. I guess i will know more and i should have a better idea of what is going on. So catch you guys in a few weeks time when it's all done and i'll have something to tell you lol...........

Holiday Evissa Baby!!!!

The Holiday was totally amazeballs and just what the doctor ordered, In fact they should prescribe sunny holidays for those recovering!!! I feel like a new woman...... well not quite but it certainly lifted my spirits and cheered me up again. It was beautifully hot and warmed the old bones up, and we spent lots of lazy days on the beach or in the hotels garden. We pottered around the town a little a night for our late tea's and to visit the beach near the hotel for the best sunset views on the whole island. It was sheer heaven, and physically,mentally and spiritually i needed it. For 9 days we could forget chores,bills,medicals,doctors and hospitals and be pampered and catered for.

Although it's all there when you get back, you feel renewed so it takes the sting out. The hip played up every day but i took a full days dose of Tramadol and Co-codamol to help cope with the situation. And a sheer bloody mindedness really helped too.

Well the next appointment is the 18th July and i thought it was just for a Cortisone Injection and MRA but i have found out they are knocking me out for the entire time, so they can examine the hip and joint without the hinderance of me moaning and the pain. In one way i feel blessed that Mr O wants to examine the hip properly rather than open me up and see, and he is taking the problem seriously (something i have struggled with, with other doctors and physiotherapists) But the otherhand i'm terrified of going to sleep once again, fear the pain the examination will bring and the decisions to be made afterwards. I guess i will know more and i should have a better idea of what is going on. So catch you guys in a few weeks time when it's all done and i'll have something to tell you lol...........

Ehlers-Danlos Syndrome Results are in............................

I went to the Hospital yesterday for my test results over Hypermobility, and sadly it came back that it's positive for Type 3 Ehlers-Danlos Syndrome. This could explain why i took longer to heal, the bone to calcify and heal and why i constantly get joint pain?

Here's an explanation of it, The Dr said yesterday that Dyplasia Sufferers have Dyplasia generally because they have Ehlers-Danlos Syndrone, it misshapes the bones and causes shallow sockets.

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What is Ehlers-Danlos syndrome?

What are the types of Ehlers-Danlos syndromes?

How is Ehlers-Danlos diagnosed?

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What is Ehlers-Danlos syndrome?

Ehlers-Danlos syndromes are a group of disorders which share common features including easy bruising, joint hypermobility (loose joints), skin that stretches easily (skin hyperelasticity or laxity), and weakness of tissues.

The Ehlers-Danlos syndromes are inherited in the genes that are passed from parents to offspring. They are categorized according to the form of genetic transmission into different types with many features differing between patients in any given type. The fragile skin and loose joints is often a result of abnormal genes that produce abnormal proteins that confer an inherited frailty of collagen (the normal protein "glue" of our tissues).

In 2001, researchers discovered a new form of Ehlers-Danlos syndrome that is caused by an inherited abnormality in a protein other than collagen that also normally plays a role in binding together the cells of our tissues (including the skin, tendons, muscle, and blood vessels). Abnormalities in this protein, called tenascin, also lead to a form of Ehlers-Danlos syndrome. Researchers suspect that tenascin could play a role in regulating the normal distribution of collagen in the connective tissues of the body.

What are the types of Ehlers-Danlos syndromes?

Classical type

(formerly types I & II)

Marked joint hypermobility, skin hyperextensibility (laxity), and fragility are characteristic of the classic type of Ehlers-Danlos syndrome. The smooth, velvety skin is fragile and tears or bruises easily with minor trauma. Joint dislocations and scoliosis are common. Joint instability can lead to sprains and strains. This classical type is inherited as an autosomal dominant genetic trait (directly passed on from one parent to child).

Hypermobility type

(formerly type III)

Joint hypermobility is the major manifestation of this form of Ehlers-Danlos syndrome. Any joint can be affected, and dislocations are frequent. This type is also inherited as an autosomal dominant genetic trait.

Vascular type

(formerly type IV, the arterial form)

In this form of Ehlers-Danlos syndrome, spontaneous rupture of arteries and bowel is a serious manifestation that can lead to death. Clubfoot can be present at birth. Skin laxity is of varying degrees. Veins can be very visible through the skin. It is primarily inherited as an autosomal dominant (directly passed on from one parent to child) genetic trait, but recessive (not seen in family members or only in one generation of members of the same family, meaning that an individual must inherit two copies of the mutation, one from each parent) trait inheritance has been described.

Kyphoscoliosis type

(formerly type VI)

Fragile globe of the eyes, significant skin and joint laxity, and severe curvature of the spine (scoliosis) are typical features. Its inheritance pattern is autosomal recessive.

Arthrochalsia type

(formerly type VIIB, arthrochalasis multiplex congenita)

Patients are short in height and severely affected by joint laxity and dislocations. Skin involvement is variable. Both utosomal dominant and recessive inheritance is possible. A skin biopsy can be used to diagnose this disorder.

Dermatosparaxis type

(formerly type VIIC)

Patients have severely fragile skin that is soft and doughy with sagging and folding. This rare form of Ehlers-Danlos syndrome can be diagnosed with a skin biopsy.

Tenascin-X deficient type

Joint hypermobility, hyperelastic skin, and fragile tissue are seen. Patients with this type lack the multiple shrinking (atrophied) scars in the skin that are often seen in classic Ehlers-Danlos. It is inherited as an autosomal recessive genetic trait.

Other rare variant types have been reported in single families.