Pain, Pain And More Pain...

Okay so I may be feeling a little sorry for myself today but we're entitled to do that someday a right?! 

Before I went to bed last night my right knee started to hurt a lot more than normal and I knew it was going to be a long night ahead. 

In 2014 I had a lot of problems with this particular knee. I had had a lot of previous dislocations, starting around 6-7 years ago but the in March 2014 I tripped over my beautiful dog Jessie. This caused my knee to dislocate and I was taken into accident and emergency. They gave me pain relief and reduce my patella back into place and they stuck me in a full leg cast for two weeks. 

When I went back to have the cast removed my leg felt so weak due to muscle loss. Muscle loss begins very soon after immobilisation. At this point Ehlers-Danlos Syndrome was very evident and doctors had discussed that this was what I may have due to my complex medical history and severe joint hypermobility but it wasn't a definitive diagnosis. So because of this and lack of understanding by professionals I was free to go home, still undiagnosed and without a brace or any other kind of support. 

Just one week later I had a fall in the shower due to my knee spontaneously dislocating, I hit my head and bruised all of my face and fractured my scaphoid in my wrist. Again I was taken to accident and emergency and X-rays were done. They showed that the patella was sat very low down so I was taken in resuss given lots of analgesics whilst a doctor put my knee cap back in its rightful place. I was having severe muscle spasms that were causes my kneecap to further sublux so they kept me in hospital over night. 

The next morning I was again put in a full leg cast (bright pink) and also my wrist in cast. This proved to be problematic as with my arm being in cast and me not being allowed to weight bare I needed to use my trusty crutches but this was not possible with my arm in cast so I had to see the physio therapists and occupational therapists and they supplied me with a walker but was told that I was only to walk when absolute neccessary. 

I spent the next 11 weeks bed bound with chronic pain and muscle spasms. There was a huge mix up at the hospital with my notes and doctors leaving and I was forgot about. I should only have been in cast for 6 weeks! 

When having the cast removed there was massive muscle loss and I couldn't do a straight leg raise, I had lost so much muscle that my leg just wouldn't work and I had to lift it to get in and out of bed.  This time I saw a Dr that actually listened to me and put me in a patella stabilising brace and was aloud to go home. It was less than a week until my knee dislocated again and I was back in a full leg cast. The doctor wouldn't listen to me when telling them how much pain I was in and my worries about my knee were dismissed and was told I would receive a letter in the post notifying me of a date to come and have an mri scan. 

The date of the Mri came around swiftly and I had the cast removed. The doctor would receive the tests results shortly. 

I never received a letter for an appointment to discuss the results and suprise suprise my knee dislocated again and I was taken into hospital, I saw the same doctor that had requested the me I scan and he was very rude and told me that there was nothing wrong, I was sent home in a brace. 

When my knee dislocated again I saw a different doctor in the fracture clinic and he asked if I would mind him taking a look at the Mri scans that were done and I said your more than welcome to as I feel I was treated unfairly and I don't actually know the results myself. He took some time looking over them and said that, the Mri scan has revealed a year of the MPFL, TGG distance was abnormal and the groove that the patella sits in was very shallow, this is causing the patella to flip out. Because of these findings a was referred to the Problem Knee Clinic. 

I saw an orthopaedic surgeon, Dr Kneedoff in the Knee Clinic on the 10th July. On arrival I was unfortunately in plaster again due to another dislocation so this was removed and I was examined. I could not perform a straight leg raise but the knee seemed stable. Around the patella there was discomfort medically and laterally and the was positive apprehension. Dr Kneedoff said that he would like to perform patella medial reefing and lateral release as this has a very good chance of helping the patella to stop dislocating. I was to come out of plaster and go into my knee brace again and come back in 4 weeks as the knee needed to settle down initially and regain some flexion before proceeding with surgery. 

I spent the next 4 weeks being extra vigilant and resting then I went back to clinic and was given the go ahead for surgery. I did mention that I had a questionable diagnosis of Ehlers-Danlos Syndrome but because this hadn't been confirmed it was dismissed. 

I went ahead with the surgery on the 24th September 2014, there was no significant bleed but the patella was still subluxing. Coming out of surgery I was in horrific pain because I had been talking morphine as a pain reliever for 7 months so it wasn't having the desired affect. I was put on a recovery ward and watching closely as my blood pressure was very low. They let me go home 3 days later in a immobilised brace and I was to rest. The pain was horrible and something I never want to experience again. 

Four weeks later I went back and my brace was removed, along with the staples. I was referred to physiotherapy, but after a few sessions I was discharged as my knee was again dislocation during session. The physio was appalling but I will leave that for another post. 

I never recieved a follow up appointment after then to see the surgeon and after a month of increasing pain I called the department and my surgeon had gone off sick so I saw a different doctor, Dr Machin. He was a lovely gentleman and after examining me and giving me a 9/9 Beighton score he said "have you ever heard of Ehlers-Danlos Sydrome" I said YES! There has been a questionable diagnosis since being diagnosed with joint hypermobility 6 years ago. 

He referred me to a Rheumatologist that had knowledge of EDS and she formally diagnosed me, stating that I had one of the most severe forms of hypermobility she had ever seen. She referred me to all the relevant people including a geneticist and gave me some information booklets . 

I am now back under another orthopeafic surgeon due to constant pain and swelling in my knee and abnormal muscle spasms. He says that surgery has made my situation worse and we are trying everything we can to try and get some relief but not getting anywhere at present. He said we could try surgery again but due to the EDS it's not likely that there will be a positive outcome. 

I have been having hydrotherapy but this is causing me dislocations in other areas and I will be back in clinic in a couple of weeks to discuss how we are going to proceed. I hope there comes a day when the pain is more bareable. 

For now I continue to use KT tape and knee braces to support my knees. 

Please don't ever jump into surgery, as I have learned it is not a quick fix and with EDS it is more likely to have complications than positive outcomes. 

I hope I haven't drowned on about my knee. I would just like to think that my experience may help someone in the same situation before thinking about surgery xxx