Snapping Hip Syndrome, Possible surgery?

[Athran]

(I'm copying/pasting my post here since different people look in different places and it's relevent for both.)

I have had snapping hip syndrome - in both hips, it got to the point where I couldn't walk because one step and one hip would go, I collapsed a little and had to put the weight on my other leg - not good with forward momentum because the other hip would then go and I'd be left stumbling forward trying to catch myself on something.
And it was painful after each hip with 5 times and I had to lay down for days, then the cycle would repeat. It was believed that my hips were dislocating because my shouders dislocated. One trip to the hospital and the dr said it was my tendons and may as well have said 'nice of you to waste my time, get lost'.
I was stuck in the house for about a year and had to give up a Spanish course becasue I just couldn't get there.

I only got seen about it when my mum had a fall at work and I had to help her with shopping and such. She held onto me rather than use a stick and we had to walk so slow that I ended up worse and ended up in hospital because they were so painful and I was given crutches. A few weeks later I got a letter to go back and I saw a great surgeon.

It CAN be cured. There IS an operation for it, it's called a z-plasty - what they do, is lengthen the tendon by cutting a long z shape in it so it doens't 'flick' over the bone. The op is a pretty quick one, I was only asleep for 3 hours.
If you have trouble demonstraiting this to the doctor (I did with one hip), I went onto tip-toe with the leg to be operated on so the knee was bent (leaving the other foot flat) and straightened the bent leg, and it flicked over.

But, I will mention :
- You're left with a 6-8 inch scar at the top of the leg on the side.
- The physio hurts, you NEED to keep stretching it, else the tendon will heal to how it was before.
- You'll be stuck in bed for a month and a half (except to do physio).
- You'll barely be able to move in bed, because the feeling of gravity opening the tendon hurts (ie, if you roll on the side).
- You won't be able to painlessly straighten your leg for several weeks (while upright).
- You won't be able to walk without cruches for up to 3 months.
- A z-plasty in the hip is a rather painful operation, I don't want to put you off, but the best way I can describle it is having demon claws in your leg to the bone and having it ripped apart sideways. It's easily taken care of with some morphine (and you go into a nice trance), I also had an anasethic in the leg the second time. Believe me, it's worth it to be able to walk. If I had to go through it a third time, I would.

- Everyone will have to wait on you hand and foot .

Yet I would suggest getting the op(s) - they changed my life.

[madclaire]

Have you had both of your hips done then Athran?

I was only on my Crutches for 2 weeks, and 8 weeks after my operation i'm doing well, and going on the exercise bike, swimming, and i even ran the other day and it felt great!
I also had my Bursa removed, did you have your removed?

[Athran]

Yup, both hips done about 5 months apart.
Bursa... I have no idea, it was never mentioned. I guess not, else something would have been said

[BEGM]

Hiya sorry if this has been suggested but if it hasn't it might be worth a try.

I have snapping hips causing bursitis in both legs. I say snap, it's more an almighty thunk that scared the bejesus out of the physio who thought he'd broken me lol

Anyhoos. Id gone initially with lower back and pelvis pain and this was a side issue.

The physio found that my pelvis is still very hypermobile from pregnancy and delivery and is very unstable, from this there ist he referal pain going down my legs and as i have flat feet and knock knees it's also referal pain from that too hence the snappy joints and pain.

I was given a lot of very intensive physio exercises to rebuild the core muscles in my back and abdomen, also have a support belt to pull my pelvis into place, at the beginning they also taped up my thighs to hold the tendons steady while i built up the muscles again in order to prevent the snapping.

This took a few months and helped out a great deal, no injections needed, no surgery just painkillers, strapping and a lot of hard work.

I hope this helps in some way and good luck! x

[JoSo]

Hey I'm really glad I found this thread I've been through the mill lately, I went to the Hypermobility Clinic at UCLH and got my joint hypermobility diagnosis, I also got some X-rays done for (what I thought) was a subluxing/dislocating hip, The Hypermobility consultant agreed with me that it was a sublux....anyway it turns out i have fairly severe Bilateral hip dysplasia (as well as the HMS) so I got a surgical referral and The orthopaedic surgeon declined to operate and diagnosed snapping hip syndrome instead of dislocations (good news I think), only problem is all this time I've been doing physiotherapy to tighten/strengthen the muscles on the outside of my hip to stop the sublux, could it be I've been making the snapping hip syndrome progressively worse with two years of physio? (the surgeon is seeing me again in 6 months to see how things are going)
so I came home and did some research, the only problem (as far as I can see) is that the physio to correct the hip dysplasia is exactly what I SHOULDN'T be doing for the snapping hip thing? what am I supposed to do?
Even if i manage to stretch the muscle causing the snapping hip syndrome what happens about the hip dysplasia? am I then at more risk of subluxing my hips? for anyone that speaks doctor the dysplasia score is 17 out of 24 on my good hip and 15 on my bad hip (the score is the measurement of how far over the ball and socket thing the acetabulum is) so I'm missing approximately a third of my acetabulum.
any way I'm in need of a physiotherapist who specialises in hip dysplasia and HMS and snapping hip syndrome preferably in the East of England
thanks in advance for any advice or help
x x

[lolly]

Hi have just found this link have been suffering with what I throught was just pain from the hypermobility. I now think it could be snapping hip syndrome from what you all say Have seen a rheumatologist but they were not much help. I have been suffering for about 10 years and have had to up my pain killers +++
now dont know what to do if any one has any advise would be very greatfull. Lolly

[JoSo]

I've been swimming and doing physio and its made a lot of difference (although its not great) i suggest you speak to a physiotherapist about it x x

[NeoMorph]

I've had the operations done on snapping hips FIVE TIMES... Four done on the left hip and one on the right.

This started back in December 1984 when I slipped down the stairs. I first thought it was my slippers going out from under me be afterwards I found out it was due to this stupid snapping hip syndrome. The fact that it was New Years Eve and I never managed to touch a drop because I was put into hospital because my left hip was a mess really annoyed me. Next day though the surgeon came around and told me he would operate the next day... "SAY WHAT?"

That started a whole series of operations and because it was before Joint Hypermobility was really understood the guy was just trying stuff to see if it would work (I didn't find this out until the third operation when they guy told me he was "Just experimenting to see if it would help"). I wish I had listened to the Ambulance attendant as we were pulling into the hospital. He asked me which specialist I was going to see... I told him "Mr ////". He replied "Oh, Mac the Knife eh?".

The first op went well and it was great for 6 months until "WHAM" the thing came back with a vengeance. The next op lasted a year, if I recall correctly, and the next one lasted about eight months.

At that point I said enough was enough and saw another surgeon. This one was awesome. He told me he wouldn't even touch me with a blade until he had done a lot of research... when he did (and it took him a while) he suggested the Z-Plasty and it only took him one op on the left to fix it enough for me to walk on again. Ironically though my RIGHT leg developed snapping hip while I was doing the physio for the left leg. He scheduled the op for that leg for later in the year and that one was amazing. Perfectly healed and no sign of snapping hip.

Unfortunately due to the damage the first surgeon caused the left leg deteriorated again but the snapping wasn't as bad as it was after the first surgeon's op. My main problem is that the levels of pain wasn't managed correctly and it ended up with my pain gate being stuck open... I do feel that if I had been seen by Mr //// first then I would be walking unaided and not be in the amount of pain I am in now... but then again I have pronounced JHS so that might be to blame as well. I do feel that the carrier bag full of pain meds (a 4 week supply) wouldn't be as necessary if Mr //// had done the ops because a lot of the pain comes from that abused left leg. In fact it looks like a whole chunk of my leg has been removed from the muscle wastage due to nerve damage. All I can say is THANK GOD FOR TENS MACHINES.

In fact the pain is so bad I have to take MST (morphine), Ibuprofen, Co-Dydramol and Gabapentin to enable me to have some sense of a normal life. Then there are the extra drugs to counteract the side effects of the first lot (like constipation, stomach acid, headache etc) that makes me want to go back in time and say "DON'T LET THAT SURGEON TOUCH YOU!".

The moral of this story... don't just research the condition... RESEARCH YOUR SURGEON AS WELL (especially if they are doing a major op).

Oh and finally, Athran is right about the physio hurting and that you need to strech it. In my case I think they did something else with the leg because the muscle memory that pulled my leg forward now made me swing my leg out sideways. Weird feeling to say the least. After nearly collapsing because of it (and the tiny nurse who was panicking a bit trying to hold me up and failing because I am over six foot tall) I had to re-learn how to walk. The worst thing though was being strapped into bed for the first two weeks after the operation and having a V shaped foam block between your legs to stop you putting strain on the him muscles... and don't talk to me about bed pans.. But if you have a good surgeon it is well worth it.

modnote: Names of surgeons removed, please read and follow site rules about naming professionals

[NeoMorph]

Ooops... I missed the bit about naming the surgeons... Sorry!

[lil_miffy]

I'm having major issues with my hips and wondering if its actually snapping hip syndrome.

My left hip has been very clunky for yers especually if I bring my knee up to my chest then straighten it. I can feel it clunk inside the joint too but it usually doesnt hurt...until 2 weeks ago...

I had my last hydro session which previously they had been going really well with my usual physio. this sesion however he wastn there. the stand in didnt know anything about eds and basically knackered my hip. It did its loudest 'clunk' and later in the evening it dislocated the worst its ever done.

Since then its ben in agony and clunking every step.

My physio saw me the other day and felt and heard the clunk and said that i might need ligament tightnenng surgey but i said no straight away becuase I know that doesnt work in EDS.
However haveing read this thread about hip snapping I will go back to him and mention this becuase this sounds alot more like what my hip usually feels like.
Im using my wheelchair more then my crutches now so its really important that I can sit for long periods which at the moment the pain in my hip means I can't (standing is worse and Im not walking at all) so this needs sorting!.

Does anyone have any literature on the A Z surgery I can print out and take to my net physio appointment as I might be seeing the hip physio.
Iv already had a year of physio which hasn't helped, the hip has gotten worse over the past 2 years and drastically worse the past fortnight since the 'hydro incident'.

cx

[louloutinks]

Hi

Just bumping this post up as I have a cracking noise when I lay and pull my knees toward my body. It also kind of clunks, if you see what I mean, whilst doing it.

Sometimes when it is really painful and it feels like my hip is in a funny place, I have to stand up and twist the whole of my leg round to the front of my body from the side (looks really wierd!) so that the sole of my foot is touching my chin area, in order for it to feel like it has gone back to its usual place. I have had this as far back as I can remember.

What could this be??

mod edit - acronym removed, please don't use them us oldies don't always understand them

[JoSo]

sorry for the late reply have been awol for a while. it sounds like you might be subluxing your hip inwards, the way youe sedcribe is how I get mine back in the right place, don't really know what to sugges as its always bee a problem for me too but compression shorts might help you keep your hips supported? I got mine from a hospital Orthotist so it might be worth a referal if you haven't already got one. x

[lil_miffy]

Saw the orthopaedic surgean last week. He can't work out where my clunking is coming from in the hip (it clunks when i lie on my back and pull my knee to my chin then lay my leg back down again but not when we do it with me laid on my side). My xrays and mris show my pelvis is very wonky with my right hip being alot further forward than my left but thats not causing the clunking.
I have to have an ultrasound on my left hip to try to find if its the joint of the muscles then he will operate occordingly. He said it may be the muscles and ligaments catching on the joint somewhere but he can't work out where. He said that if the ultrasound doesnt give him answers we can deicde if i trust him enough to take me into surgery, open me up and operate according to what he finds.

He was very honest and said that i wont get any walking or standing function back and that im not far off being fully dependant on my chair and soon i wont be able to stand becuase of how unstable my knees are now so its more about reducing the subluxations and pain so that i can be more comfortable in my wheelchair to get longer use out of it day to day.

[Flims]

Hi all,

I've got an appointment with Orthopaedics at the Nuffield, Oxford next Thursday. My right hip has cluncked in and out since I was about 12 (I'm now 27!) and has got more painful recently. Two physios reckon that it's hip dysplasia but from a bit of googling and reading the responses here it seems more likely to be snapping hip syndrome to me. I'm not sure exactly what they'll do at this initial appointment - x-rays, an examination, I suppose.

Can 'snapping hip syndrome' show up on an x-ray or is it something that would be thought of if the x-ray comes back normal?

I sounds like the operation for snapping hip is pretty painful....but I guess hip dysplasia operations are pretty nasty too!

I still haven't had my hypermobility syndrome confirmed by anyone other than the one physio who suggested it about a month ago (I'd never heard of it before). So I'll definitely be mentioning that too - and seems from what people have been saying here that snapping hip (of hip dysplasia) and hypermobility are very likely to be related.

Thanks for sharing your experiences. I'll keep you updated on how the appointmemt goes.

[Flims]

Hi All,

Just a quick update...

The Nuffield have diagnosed me with snapping hip and chronic bursitis. They seem to think that surgery might be the way forward, but they've suggested I try physio with their specialist physios first (I'm still awaiting a referral). They also seemed to indicate that the surgery hasn't got a great record of giving positive outcomes. Anyway... we'll just have to see what happens next!