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Ehlers Danlos Syndrome

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Thursday, June 20th, 2013
1:40 am - Need advise have surgery scheduled in the am these are my two options surgery tomorrow at 10 am

devnxn
Option 1
Wrist denervation: The idea behind this operation is to cut the nerves taking pain signals from the wrist to the brain so the pain is either not felt or felt much less whilst also NOT damaging the important nerves that provide sensation and movement to the wrist and hand. To remove all the nerve supply (denervate) to the wrist fully is not really feasible. We, like many other surgeons, just divide the 2 small end nerves that lie in the middle of the end of the forearm and take the majority of the pain signals from the wrist to the brain. These nerves are called the anterior and posterior interosseous nerves. This is not a very reliable operation so the Hand specialist will typically inject local anaesthetic around these nerves at a clinic visit to assess the likelihood of success. If there is little or no benefit then the operation is unlikely to work. If the injections work for at least several hours then the operation has about a 70% chance of success. I have had two injections in 2 days no success

Option 2
Wrist fusion: This is a reliable operation that has stood the test of time. Most patients are pleased but few are thrilled for although they have lost their pain (in most cases0 they have also lost wrist movement. Typically the wrist is fused slightly cocked back. The best position can be gauged in part by holding the wrist in plaster of Paris in advance. This allows the patient to gain a better idea of what it is like to have a fused wrist and what position is best for them. We find this a useful step in guiding patients about a fusion if they are unclear.
The operation is performed under a regional (making the whole arm numb) or general anaesthetic. Via a 12-14 cm incision over the back of the wrist the surgeon opens the wrist removes a little bone to optimise healing and fixes the position with a long narrow metal plate and 6-8 screws. This is designed to stay in long term but sometimes (c. 10%) requires removal. The deep tissues are closed and the skin stitched with absorbable stitches. The wrist is supported in a plaster of Paris back slab for comfort.
The time in hospital is usually one night's stay

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Sunday, April 21st, 2013
8:59 am - New to this

nikkirenea92
Hey! I'm new to this. I was diagnosed with Ehlers Danlos in 2009 after having severe joint pain, frequent dislocations, torn shoulder muscles with no injury, upon other things. Soon after being diagnosed, I had to quit dance. I was a junior in highschool. I was told I have hypermobility and my geneticist believes I have strains of vascular which is extremeley rare for types to cross over. I am the first in my family to have it. I was tried on almost every medication (besides narcotics) to control pain. None worked. I passed out in the shower from one and got three ulcers from another. My rheumatologist told me I am one of the worst pain cases she has seen from Ehlers Danlos.Currently I am 20. Im married and I had a baby. My pregnancy was terrible. I was high risk. I was hospitilized with kidney stones. Besides that everyday was a challenge. I could barely get out of bed. I was in so much pain during my pregnancy. I had to have a c section and recovery was long. I have a nasty scar to prove it. Now I'm still battling daily chronic pain. My knees and back are the worst areas. I can barely get up and down from the floor to play with my son and I'm just twenty! I was just in the emergency room for chronic chest pain. Its been a long journey so far and it's going to continue to be an uphill battle!

current mood: determined

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Monday, February 4th, 2013
10:16 pm - Any advise on who to see for a diagnosis I am in Lancashire
shellpot1980 Hi I am new never been on here before I am looking for any advice on who to see for a diagnosis my gp has agreed to refer me to a rheumatologist but don't know who to choose
Any advice welcome
Hope you all well
Regards
Shell

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Thursday, April 19th, 2012
3:11 am - Vascular EDS newb
trev0333 Hello all,

Well now a 34 year old male with EDS, most likely vascular type. Its nice to see so much more out here for people to cope and find information about EDS being available thses days. I was diagnosed with EDS about 7 years ago. The doctor I was reffered to wasn't really well versed in EDS. Most of my symptoms were mild compared to others she had heard about and had me checked for Mittral valve prolapse but didnt want to diagnose me due to the fact I'd likely lose my insurance.

After blowing it off for a few years more recently I realized I actually had symptoms more in line with Vascular EDS. Hypermobility mainly just in the wrists/fingers/ankles/toes. Facial characteristics, thin nose/lips, larger protrudung eyes, lobeless ears, translucent skin (although not as distinct as most Ive seen), easy bruising, constant gigngivial bleeding & recession, places on my face and shoulders especially easy blood vessels burst very easily. Before I was diagnosed I also had to have my Uvula removed due to it stretching out and swelling to the size of my tongue in my sleep.   

Somewhat luckily I have very few if any issues with chronic pain altogether, maybe this is a symptom more associated with the other types of EDS? Has anyone with Vascular EDS also not had issues with chronic pain?

Anyways Im stuck in that catch 22 of if I went in to have my symptoms properly diagnosed for the type and severity of Vascuar EDS I'd basically lose my insurance. Being its a pre existing condition they wouldn't cover issues from it anyways. When the Obamacare went in I was ecstatic thinking I could finally get this diagnosed properly without being fearful of losing my insurance. 

I guess Im stuck thinking that if all they can do is tell me what it is and theres actually nothing that can be done besides manage the symptoms whats the point of being diagnosed now. Im curious how others have juggled this conundrum... 

current mood: blank

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Saturday, March 10th, 2012
10:34 am - Newbie!!

v_eds
Hi everyone!
Im new to this but so glad i found it!
Im 26 year old female from ireland. I was diagnosed with vascular type ehlers danlos many years ago.
it has truely been a rollercoaster ride of events for both myself and my family.
i look forward to getting to know you a

current mood: cheerful

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Saturday, February 25th, 2012
2:25 pm - And the verdict is.....

starrynight
Early onset osteoarthritis in the hands and knees due to Ehlers-Danlos III.

The rheumatologist that I saw yesterday told me that the osteroarhtritis in my hands resemble that of a 65-70 year old. I have osteophytes on both pointer fingers.

As for my knees, they bow in quite a bit, as seen here.

I didn't get any meds yet because I have to get a bunch of blood work done but at my next visit, I'm going to bring up pain management.

Should I brace or bandage my knee(s) in the meantime? I haven't exercised at all and I don't plan to until I can get the pain under control. Like I said, Motrin and Aleve aren't working for the pain, which really sucks. I don't want to have to keep taking Vicodin and I haven't taken it in two days because I only have so many pills left and I'd prefer not to go that route unless I'm in agonizing pain.

I don't know if anyone else is familiar with the sensation, but it feels as though my knee caps are being ripped open, and it gets worse with movement but not much better with rest.

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Monday, February 20th, 2012
10:42 pm - Frustrated

starrynight
I'm 99.99% sure I have Ehlers-Danlos Hypermobility type.

I went to my doctor because I've been in horrible pain. My ankles, knees, wrists, fingers, elbows, and occasionally hip hurt so damn much. I showed him my legs, they're always horribly bruised despite me not being anemic. I always look like I've been beaten up. I scar super easily, cut easily, and wounds take forever to heal. I have three sores on my feet because of carpet burn and it's been 3 weeks. They're starting to scab over and I know they'll scar.

I showed him that I can bend my fingers backward past 90 degrees, that I can touch each of my thumbs to my forearms, and that I can place my palms on the floor with my knees straight. I also showed him I could touch each of my shoulder blades with my arms crossed behind my back, I can make it look like I'm praying from behind, and I can clasp my fingers together with my right arm over my shoulder and the other arm goes behind. I also have the flying bird sign.

I was always flexible and I know normally children are, but I still am. I actually had no idea that doing this stuff was abnormal until someone with EDS pointed it out that I show the signs of it. My mom was also flexible. She's not anymore due to joint problems and her weight.

I asked my doc if it were EDS and he said he doesn't think so because I don't have stretchy skin, but I know that not everyone with EDS does. He suggested it's Marfan's because I do have a marfanoid build, but again, people with EDS tend to as well. I have arachnodactyly, positive wrist sign, positive thumb sign, mild pectus excavatum, myopia, MVP/heart murmur, etc. But, my wing span is 1.04, not 1.05 and as far as I know, I don't have any aortic involvement so I do not believe it's Marfan's. And I don't think I am unlucky enough to be in the 25% of people who has it without any family history.

I don't think I'll get any answers until I see a geneticist like my doc told me to, which sucks. I just want the pain to stop. Every time I move, something is cracking or popping and it's frustrating. The doc gave me Motrin but I told him I've tried it and it doesn't work.

Anyways, did it take a while to get your diagnosis of EDS? What helps the pain, if anything?

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Wednesday, January 11th, 2012
11:57 pm - :)

ext_978580
Hi my name Is Hollie-Rose, I havent been diagnosed with this disorder but since i was about 3, im 21 now, i have been overly flexable, i have no arch support in my feet at all and my knee caps dislocate to the point where i am now on disability, my hips have started to feel like they are slipping out and i can always feel my ligaments grinding over my feet and flopping around my knee caps.

Only recently my doctor told me my ligaments cant hold collagen, he did no tests he googled it. Hypermobile flexability, elongated ligaments and hyper extensive joints. When my knee caps come out they pop right back in but its very painfull and once i caught it before it slipped around the back of my leg. They swell up after they dislocate, I went surfing today and my knee is very swollen from laying flat on the board.

I have started doing my own research seems no one can help me and the hospital where i live has turned me away ( i have been seeing the orthotics department since i was very young) it seems they have given up on me so im on my own mission now.

I read the other day hypermobility syndrome can be linked to ovarian problems and sorts of things like that? Since i was young i have been  to hospital for un explained stomach problems, they thought my appendix was going to explode but turns out it wasnt it at all and they didnt know what it was. When i streatch i still get those pains, it feels like tearing, do these things sound familliar to anyone?

Does anyone know what Im talking about? Can anyone help me?
Thanks :)

current mood: sore

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Sunday, May 1st, 2011
8:46 am - Spread awareness!

jesscabessca


Hey guys! So, May is national Ehlers-Danlos month and i'm trying to do all I can to raise awareness! if you want to go all out to support this illness you can wear zebra striped ribbon and zebra striped clothing all month, but if that's too much to ask, you can all spread a litte awareness just by "liking" this facebook page and suggesting it to friends :) we can all help in little ways.
http://www.facebook.com/pages/Ehlers-Danlos-Awareness-Month/180899421960002

God bless,
Jessica

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Thursday, March 31st, 2011
3:51 pm - CaringBridge

jesscabessca


To all of my friends on ehlersdanlos,

I haven't been on this site for a while, and probably won't be anymore. However if you're still interested in following me on my journey, I've made a medical journal/blog that you can subscribe to.

http://www.caringbridge.com/visit/jessicac

There you will find my story and journal entries along the way. By going to journal and checking a checkbox, you can subscribe to my updates via email or text.

Feel free to say hi on my guestbook on CaringBridge, too, especially if you have a CaringBridge site and want to share your link with me!

Thanks for all the support all of you have given me so far.

-Jessica


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Tuesday, July 13th, 2010
12:46 am - Facebook Group

serenity151979
I would like to invite anyone with Hypermobility type EDS to come and join my Facebook group, Talking HEDS. This group is hoping to raise awareness and support and I now also have an online store where I'm hoping to raise funds towards research as well.

Talking HEDS

Thanks for your time :-)

current mood: grateful

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Friday, June 25th, 2010
7:37 pm - Do you have facebook? Then step this way.....

serenity151979
I'm asking everyone I know (and even those I don't who have happened to wander this way) to vote for EDS TODAY on Chase Community Giving's charity poll on Facebook. Chase will give at least $20,000 to every charity in the top 200 in the poll, but will give $100,000 to places five-two and $250,000 to the first-placed charity. EDS TODAY is trying to raise money for vital research, at the minute we are in third place but every vote counts as it is so close between second, third and forth right now. Please click on the link and vote, it means so much to me and every other sufferer out there.

Thank you xoxox

current mood: hopeful

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Saturday, February 27th, 2010
2:55 pm - Another 'stages of grief' post

serenity151979
You can catch up with how things are going for me and talk about depression here at my personal journal. Feel free to comment. =)

current mood: indifferent

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Tuesday, February 9th, 2010
11:30 am - Catharsis

serenity151979
I'm thinking about doing a series of posts on my livejournal about coming to terms with my EDS diagnosis and the emotional and physical journey I'll be going on. Would you guys be interested in something like that?

I've done one post so far, and you can find it in an unlocked post here at my personal journal.

Take care, everyone xox

current mood: curious

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Sunday, February 7th, 2010
10:29 am - Petition against closure of Leeds centre for treatment of HMS/HEDS.

blaadyblah
Ladies and gentlemen, I'd be very grateful if you'd visit the following site and take ten seconds to fill out the online petition to assist in the campaign to replace Professor Bird (who has done outstanding work in the field) after his retirement later this year and create new treatment centres around the UK. Many thanks on behalf of the HMSA/EDNF.

http://www.hypermobility.org/capetition.php?action=new


You will receive an e-mail with a link that must be clicked in order to confirm your signature.

If you're able to propagate the petition also we'd very much appreciate it.

UK Patients can also download a template letter from the HMSA website (http://www.hypermobility.org/forum/download/file.php?id=106) which can be sent to your local member of parliament (details available at the parliament website, or at www.theyworkforyou.com).

The following is a statement from Professor Bird:
------------------------------------------------------
DECEMBER 2009 ADVICE TO PATIENTS WITH INHERITED ABNORMALITIES OF CONNECTIVE TISSUE UPON THE RETIREMENT OF PROFESSOR HOWARD BIRD

Professor Howard Bird’s contracted retirement date falls at the end of September 2010. Since a large number of his patients attend his clinics because of the specialist service provided for inherited abnormalities of connective tissue, including hypermobility, it seems appropriate to notify patients and their general practitioners of any future provision for their continued care.

Provision is informed by a recent postcode analysis of 300 new patients attending Professor Bird’s clinic with an inherited abnormality over the last two years. 141 patients came from the greater Leeds area and 140 patients came from the whole of the rest of Yorkshire. About 100 patients came from Lancashire and the North West and another 100 from Newcastle and the North East. The remaining 100+ patients travelled from all over the country.

In spite of Professor Bird’s continued offers to train a successor, it is not at present the intention to provide a service for patients living in the Leeds area or for those from anywhere else in Yorkshire. Sadly, significant local expertise in physiotherapy, occupational therapy, nursing, education and podiatry will also be lost. At present the best alternative option for patients from Leeds and Yorkshire would seem to be referral to the clinics devoted to inherited abnormalities of connective tissue, either at University College Hospital, London (Professor Rodney Grahame and Dr Alan Hakim) or at Glasgow Royal Infirmary (Professor Bill Ferrell), even though patients with these particular ailments will find travel there both difficult and expensive.

Patients living in Lancashire and the North East fare better. Both Manchester and Newcastle anticipated the forthcoming deficiency in the service and have been sending their clinicians to Leeds for training over the last year. At the time of Professor Bird’s retirement, it is almost certain that a specialist clinic will be established at Manchester Royal Infirmary (Dr PH) and at Queen Elizabeth Hospital, Gateshead (Dr SV), each with paramedical support. Professor Bird has also indicated his willingness to visit these clinics a few times each year to provide continuing advice on the most complex of the patients.

For those from even further afield, Professor Bird will try to see each patient in this group prior to his retirement to provide individual advice in the hope that some care, even salvage, will be continued. The dream might be a formal national centre for patients of this type but it is Professor Bird’s personal view that if this materialises in the near future, neither this department nor Trust could be considered fit for this service.

It is possible that you have also been offered a further appointment in Leeds but this simply represents my wish not to cut off your care completely and is therefore offered more in hope than expectation.

H A BIRD MA MD FRCP
Professor of Pharmacological Rheumatology
University of Leeds, The General Infirmary at
Leeds and Chapel Allerton Hospital, Leeds

24 December 2009
-----------------------------------------------------------------

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Sunday, January 24th, 2010
3:03 pm - Um... hi everyone!

serenity151979
Just found this place, joined up straight away. I'm a 30 year old female from Northern Ireland and I've just been diagnosed with EDS hypermobility by Professor Grahame. I also have CFS and Fibromyalgia, amongst other heath issues. I've always known there was something 'not quite right' going on, my childhood was spent going to doctors with pain that was dismissed as so-called 'growing pains', then I was hit with CFS at 11 and every pain I've had since was always attributed to that, even though I felt there was something else going on. Found out about EDS purely by happenstance, when my brother in law was chatting with a doctor in the course of his work, and it seemed to fit my symptoms. So I went back to my GP (who didn't seem to have heard of it) and asked him to refer me to a rheumatologist, who diagnosed me with hypermobility syndrome. I still didn't think this was the full story so I went private to Professor G. who diagnosed me with EDS hypermobility and autonomic dysfunction, possibly POTS. I'm now on waiting lists for neurologists and cardiologists, something that would never have happened without that chance conversation! It's a relief to finally have a definitive diagnosis.

current mood: sore

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Tuesday, December 8th, 2009
11:22 pm - Surgery advice

magical_surge
I have a question about how you decide when to have surgery or to try managing without.

I've been having severe hip pain for almost 4 months now. After frustrating my doctors, I was sent to the head doctor at the Orthopaedic Center of our local research hospital. He confirmed what I felt - that my hip is subluxing. It's causing damage inside of the joint so my bones and cartilage are really bruised. If it's not better by February, he wants to scope it.

My physical therapists think surgery is the only way I will see improvement. I have been getting progressively worse to where I can't walk to the back of the grocery store or drive.

The problem is, the doctor intends to clean out the joint, but not make any repairs because nothing is torn or broken. I hardly see the point in doing that. It won't make my hip any tighter and I'm afraid I'm just going to continue beating up the inside of my joint. I know my history, and my hip isn't going to be tightening itself any time soon.

I scheduled an appointment to discuss it with the orthoped who diagnosed my hypermobility and did my first surgery. I'm just afraid of falling into a surgery trap. I have 2 other surgeries that I've been told I need (shoulder and hand), but I've learned to manage without. I've been reading about the low success rates of surgeries with joint laxity and it has me nervous. So I'm wondering, where do you draw the line? How do you decide if surgery is the best option?

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Sunday, November 29th, 2009
4:26 am - Itchy skin?

djonma
I have mild psoriasis and mile excsma. They're both very mild though. But the combination along with eds skin issues seems to just result in horrific itching non-stop. My legs in particular are terrible now it's gone cold and wet.
I scratch subconsciously and in my sleep and I wake up with blood all over my bedding and my legs scratched to shreds. I keep my toe nails short as I do it with those primarily, but I still manage to shred myself. I can't wear socks in bed as my feet overheat easily.

Is this just me or is it an eds skin thing?
The other skin conditions are so mild they shouldn't be causing a problem really, but I literally can't sleep I'm itching so damn much!

My lower back / top of my bum is terrible for it too.

Is there anything I can do to prevent the itching if it's an eds thing? Or is it not eds at all and I should get psoriasis or excsma treatment from the doctor?

It doesn't help that with my eds and bad circulation I have to keep the heating on all the time.

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Friday, November 20th, 2009
3:58 pm - Swelling?

djonma
I've noticed that when I damage somewhere, really badly dislocate something, I barely swell.
I had a terrible knee dislocation last year, had me in a brace for months, and I couldn't put weight on it for ages. They were considering surgery, but it barely swelled at all, which confused them so much.

I have problems with my left wrist a lot, and I managed to go over on it twice today in quick succession. My immediate reaction is still to look for swelling, even though I don't swell when I hurt things.

Is this just me?
Or is this a weird EDS thing?
It would be nice to be able to say to doctors... actually it's not swollen because I don't swell, it's because of the EDS... if it was.
Rather than Oh ok, it doesn't look bad because it's not swollen... shame it feels like it's broken!!!

current mood: sore

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Sunday, November 8th, 2009
9:21 am - Meniscal repair and weight bearing?

ghymoreid
Hi guys. I need some advice/help. My orthopod is taking the "softly softly" approach to my knee, so rather than leap straight into a reconstruction, he's going to do an arthroscopic meniscal repair on it this Friday. He's said he won't know until he's in there whether he'll be able to stitch the gaping hole in it or if he'll just have to remove the damaged area, but either way I'm looking for advice or experiences regarding when it'll be safe to put weight on the joint again, especially if he stitches it given our problem with suturing. I've got hypermobility type, but my skin is pretty fragile with it, and with almost every skin lesion I've had removed, within 24 hours of having the stitches removed the wound's popped open again. I know internal stitches are different, but how long do I have to be paranoid about ripping them open? Any and all help appreciated, especially anecdata.

(x-posted to ehlers_danlos and ehlersdanlos)

current mood: anxious

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