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Family with vascular EDS but I have hypermobility...
Hello So on my mother's side there is Vascular type EDS unfortunately. My brother, who sadly passed away from a rupture inherited it from my mum who is thankfully still with us at a pretty good age of 62 and 2 pregnancies which seems like a miracle with this terrible defect. Anyway I wanted to ask
Hello So on my mother's side there is Vascular type EDS unfortunately. My brother, who sadly passed away from a rupture inherited it from my mum who is thankfully still with us at a pretty good age of 62 and 2 pregnancies which seems like a miracle with this terrible defect. Anyway I wanted to ask
Dumplinglife19
in
Ehlers-Danlos Support UK
5 years ago
Operation v ET
Just wondering has anyone on this forum had a joint replacement and later found out they had ET. I had a hip replacement 21 years ago and a year later found out that I had ET. On doing a bit of research I found that operations can cause this. I had a lot of blood tests before the op so they would have
Just wondering has anyone on this forum had a joint replacement and later found out they had ET. I had a hip replacement 21 years ago and a year later found out that I had ET. On doing a bit of research I found that operations can cause this. I had a lot of blood tests before the op so they would have
Pennypen
in
MPN Voice
5 years ago
Nerve pain
I had a Spinal fusion July 18 and the nerves from L4 L5 got damaged and I have been in chronic pain in my whole left leg. I have tried most things from Morphine based tablets then Pregabaline, Amitryptaline you name it I’ve been on it. I’ve tried loads of vitamins which I am still taking. I’m using Biofreeze
I had a Spinal fusion July 18 and the nerves from L4 L5 got damaged and I have been in chronic pain in my whole left leg. I have tried most things from Morphine based tablets then Pregabaline, Amitryptaline you name it I’ve been on it. I’ve tried loads of vitamins which I am still taking. I’m using Biofreeze
Christinecove
in
Pain Concern
5 years ago
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Tinnitus/Ginkgo biloba
Visited otorinolarilogos (ear nose and throat specialist) to check my ears and ask about my tinnitus. Ears were clean and uninfected - my hearing levels were a little below average. Anyway he has prescribed Lamberts ginkgo biloba 6000 to take for at least 6 months. Anyone tried this? I'm a bit concerned
Visited otorinolarilogos (ear nose and throat specialist) to check my ears and ask about my tinnitus. Ears were clean and uninfected - my hearing levels were a little below average. Anyway he has prescribed Lamberts ginkgo biloba 6000 to take for at least 6 months. Anyone tried this? I'm a bit concerned
Crete
in
Thyroid UK
5 years ago
When it rains it pours.
Ok so I had bad luck and tripped over a pot hole before Christmas, necessitating ball joint replacement in left shoulder. Op postponed due to projectile vomit of copious coffee grounds blood. Emergency endoscopy drained 800 mls coffee ground blood from stomach. Op on shoulder Christmas day, discharged
Ok so I had bad luck and tripped over a pot hole before Christmas, necessitating ball joint replacement in left shoulder. Op postponed due to projectile vomit of copious coffee grounds blood. Emergency endoscopy drained 800 mls coffee ground blood from stomach. Op on shoulder Christmas day, discharged
Marilyn1959
in
PMRGCAuk
5 years ago
Why is the vien where canulla was inserted in hand, sore I can feel vien is hard to touch from my hand to near elbow!! Any thoughts?
Had full spinal fusion April 2018 then a fall on concrete steps July same year, because of back pain from op I didn't realize I had done any damage had x-ray they found 6 screws and the metal hooks had come out, had an op 3rd Feb to put it right from about a week after my arm been hurting and can feel
Had full spinal fusion April 2018 then a fall on concrete steps July same year, because of back pain from op I didn't realize I had done any damage had x-ray they found 6 screws and the metal hooks had come out, had an op 3rd Feb to put it right from about a week after my arm been hurting and can feel
elvistait
in
Endometriosis UK
5 years ago
Confused
Hi all, I’m new here. Basically I’ve struggled for years with different ailments and was treated with so many different medications, my gps got fed up with me. Despite many obvious problems throughout my life I’ve always pushed on. My eldest daughter I nearly lost when I was pregnant. I was basically
Hi all, I’m new here. Basically I’ve struggled for years with different ailments and was treated with so many different medications, my gps got fed up with me. Despite many obvious problems throughout my life I’ve always pushed on. My eldest daughter I nearly lost when I was pregnant. I was basically
Oliveoi
in
LUPUS UK
5 years ago
EDS Patient Involvement Opportunity
***HeadsUp EDS Patients #InvolvementOpportunity*** ***Have your say in designing future research on childbearing with hypermobile Ehlers-Danlos syndrome*** Some researchers, including Dr Sally Pezaro, have recently been granted funding to do some research and professional & public engagement on the
***HeadsUp EDS Patients #InvolvementOpportunity*** ***Have your say in designing future research on childbearing with hypermobile Ehlers-Danlos syndrome*** Some researchers, including Dr Sally Pezaro, have recently been granted funding to do some research and professional & public engagement on the
Wendy39
in
LUPUS UK
5 years ago
Good voice recognition software is a helpful tool!
I am writing this post with my voice. It feels liberating to do so. One of the areas which Parkinson's disease affects the most is my right hand and my right arm. I am right-handed, so this is a significant handicap. Like many of you, I suffer from micrographia. I also have a hard time typing with
I am writing this post with my voice. It feels liberating to do so. One of the areas which Parkinson's disease affects the most is my right hand and my right arm. I am right-handed, so this is a significant handicap. Like many of you, I suffer from micrographia. I also have a hard time typing with
ElliotGreen
in
Cure Parkinson's
5 years ago
Nerve pain left leg 24/7
In 2015 left leg pain started. Diagnosis a year later via several MRIs was l4/l5 spondylolisthesis, disk herniation, central stenosis, pinched exiting nerves. Three surgeons sugested fusion, one suggested laminectomy. I elected the later in 2016. it did not work. Contrary, i had increased pain. i tried
In 2015 left leg pain started. Diagnosis a year later via several MRIs was l4/l5 spondylolisthesis, disk herniation, central stenosis, pinched exiting nerves. Three surgeons sugested fusion, one suggested laminectomy. I elected the later in 2016. it did not work. Contrary, i had increased pain. i tried
mngp
in
Pain Concern
5 years ago
GERD or not GERD that is the question?
Well five weeks on from shoulder joint replacement op on Christmas Day (!), following fall on 19th December I am starting to slowly see some small improvement. Bowels problems eliminated since stopping copious continued pain meds. What is still troubling me is my stomach. On my second day in hospital
Well five weeks on from shoulder joint replacement op on Christmas Day (!), following fall on 19th December I am starting to slowly see some small improvement. Bowels problems eliminated since stopping copious continued pain meds. What is still troubling me is my stomach. On my second day in hospital
Marilyn1959
in
PMRGCAuk
5 years ago
Do you have double vision?
Have monocular doplia aka double vision in one eye. Doctor wants to inject botox into my eye which he says may fix the problem. Anyone have this done or know of someone who did this? Need to know some information about this unknown procedure.
Have monocular doplia aka double vision in one eye. Doctor wants to inject botox into my eye which he says may fix the problem. Anyone have this done or know of someone who did this? Need to know some information about this unknown procedure.
Maxineto
in
Ataxia UK
5 years ago
Botox for double vision?
Went to eye specialist for my double vision. He wants to inject Botox into my eye. He says it should improve in a few months. I've never heard of putting Botox into an eye. I would hope that others reply to this so we all will know what we should, or should not do for double vision which could become
Went to eye specialist for my double vision. He wants to inject Botox into my eye. He says it should improve in a few months. I've never heard of putting Botox into an eye. I would hope that others reply to this so we all will know what we should, or should not do for double vision which could become
Maxineto
in
Ataxia UK
5 years ago
Lisuride (Dopergin)
Lisuride, sold under the brand names Dopergin, Proclacam, and Revanil, is an antiparkinson agent of the iso-ergoline class, chemically related to the dopaminergic ergoline Parkinson's drugs. Currently it is not available in the US I could not find any single post mentioning this medicine. Was wondering
Lisuride, sold under the brand names Dopergin, Proclacam, and Revanil, is an antiparkinson agent of the iso-ergoline class, chemically related to the dopaminergic ergoline Parkinson's drugs. Currently it is not available in the US I could not find any single post mentioning this medicine. Was wondering
Farooqji
in
Cure Parkinson's
5 years ago
Advice needed please - Retrognathia and jaw surgery
I'm looking for advice please. I'm 37 with Juvenile Arthritis and I need both of my jaw joints replaced. Has anyone else here had this surgery please and can you give me any advice? How long do they last? I've also been diagnosed recently with retrognathia even though its a problem I've had for years
I'm looking for advice please. I'm 37 with Juvenile Arthritis and I need both of my jaw joints replaced. Has anyone else here had this surgery please and can you give me any advice? How long do they last? I've also been diagnosed recently with retrognathia even though its a problem I've had for years
Arkyfox
in
Changing Faces
6 years ago
gleason 9?
im not for certain but let me give it a whirl. 5+4 grade 4,5o5 cores pos. tumor 80% of. perineural inv. Left side Adenocarcinomagleason 9, combined large duct and acinar types grade 5, 6of 6 cores up to 10mm tumor length, tumor volume 85% with perineral invasion present. cat scan showed incidental anyuerism
im not for certain but let me give it a whirl. 5+4 grade 4,5o5 cores pos. tumor 80% of. perineural inv. Left side Adenocarcinomagleason 9, combined large duct and acinar types grade 5, 6of 6 cores up to 10mm tumor length, tumor volume 85% with perineral invasion present. cat scan showed incidental anyuerism
duckman52
in
Advanced Prostate Cancer
6 years ago
Introduction
I have had one
joint
fusion
(talonavicular fusion) but fear my right elbow is beyond repair, too. I ache constantly, and of course worse in mornings or after periods of rest. After 10 years of diclofenac, infusions and every drug imaginable (thank goodness for the NHS!)
I have had one
joint
fusion
(talonavicular fusion) but fear my right elbow is beyond repair, too. I ache constantly, and of course worse in mornings or after periods of rest. After 10 years of diclofenac, infusions and every drug imaginable (thank goodness for the NHS!)
roisin84
in
NRAS
6 years ago
Micrographia therapy
I have recently had flu and pd symptoms have progressed at a jump especially micrographia, small and in my case very sloooooow writing. Googled for appropriate therapy / exercises to help and found several references to ‘Pico Tesla magnetic fields’ . Never heard of this, highly dubious about ‘miracle
I have recently had flu and pd symptoms have progressed at a jump especially micrographia, small and in my case very sloooooow writing. Googled for appropriate therapy / exercises to help and found several references to ‘Pico Tesla magnetic fields’ . Never heard of this, highly dubious about ‘miracle
Ratzkywatzky
in
Cure Parkinson's
6 years ago
Confused over diagnosis!
Hello all, I wonder if someone can help me, please? I went for an assessment at the local fatigue clinic yesterday, and was seen by an endocrinologist. He did a quick check of my symptoms (fatigue, generalised pain esp in lower quadrant, IBS, brain fog etc) and said, “I know what I think you have, but
Hello all, I wonder if someone can help me, please? I went for an assessment at the local fatigue clinic yesterday, and was seen by an endocrinologist. He did a quick check of my symptoms (fatigue, generalised pain esp in lower quadrant, IBS, brain fog etc) and said, “I know what I think you have, but
Stitchwitch94
in
Ehlers-Danlos Support UK
6 years ago
Vascular EDS gene testing in UK
Hello, I have a diagnosis of hypermobile EDS made clinically with no genetic testing, however two of my family members have features suggestive of vascular EDS (early prominent varicose veins, gingival recession, translucent skin, aortic aneurism (asymptomatic), easy large bruising and sparse thinning
Hello, I have a diagnosis of hypermobile EDS made clinically with no genetic testing, however two of my family members have features suggestive of vascular EDS (early prominent varicose veins, gingival recession, translucent skin, aortic aneurism (asymptomatic), easy large bruising and sparse thinning
bombsh3ll
in
Ehlers-Danlos Support UK
6 years ago
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