Deep Pain in hip

[marineBLU28]

Hi

I am new to the board I found you guys whilst trawling the web.

Sorry this is a long post.

My name is Carolyn I am 45 (ouch) I was born with spina bifida I'm not sure which type, I had to have an operation when I was born to close the base of my spine as far as I remember from my mum, I don't think it was actually open I believe there was a thin covering, but it does protrude quite a bit with a lot of scarring I mostly have problems down my left side below the waist, numbness and lack of feeling in various parts of my leg I also have bladder and bowel problems which caused a lot of problems when I was young but are pretty controlled now apart from the odd UTI I also suffered a lot with pressure sores but again thanks to a great orthopedic surgeon I had some work done on my left foot/tendons to try and drop my foot down a bit and he also had this heel cup thing made for me that fits inside my shoe, this takes the weight off my heel and (touch wood) I haven't had any problems for several years.

The reason I am writing is to see if anyone has had the same problem as I'm having now. I had been having intermittent pain in my hip which is extremely painful like a throbbing it feels deep inside the hip, just to say as well that my hip bone is really prominent with a huge scar due to a dislocated hip I had when I was born which was 'repaired' I use the term loosely as when my last ortho guy looked at x-rays of it he asked if a plumber had done the work :-) as it is pretty messy inside it's kind of rough and there is a little bit of bone that seems to have become detached.

Anyway about 5 weeks ago I had a colonscopy and about say five six days after that I started to get this pain in my hip which eventually got so bad I had to go to the after hours doc he diagnosed something 'mechanical' inside my hip and gave me painkillers anyway several visits to my own GP later I am now on Diclofenac (an ibuprofen type medication) and in between that I can take another painkiller called Acupan which is similiar to Paracetamol anyway I'm finding that these are dulling the pain a bit but it's still pretty sore plus they don't seem to last long It's starting to wear me down a bit as I'm not sleeping very well, I fall asleep and then wake up about 3am it's not sore when I first wake but then within about ten minutes it builds up again to this throbbing pain and I can't sleep and then if I can I take more painkillers sometimes fall asleep again and wake up feeling lousy, It's not any more painful when I walk in fact I don't feel it that much until I stop walking or am standing it definatly seems worse when I'm sitting or lying down it's just a constant throbbing, I cant see any swellings or red areas and funnily enough when I have a couple of glasses of red wine it seems to ease off as well :-)

I'm wondering if when I had the colonoscopy they have turned me a certain way or moved my hip (I was sedated so can't really remember) all I know is I'm in agony my doc doesn't seem that worried she sent me for an x-ray but that just apparently showed the previous damage from the original surgery.

Has anyone suffered anything similiar? normally I would be able to see my ortho guy who has looked after me since I was 16, I was still seeing him until last year when he retired and the clinic I was attending that should have passed my notes etc to whomever took over from him seem to have 'lost' me in the system and I am currently trying to find someone myself that would have experience of spina bifida and then my GP can write to them to see if they will take me on it's all very frustrating, I guess I'm just worried that there is something 'going on' inside my hip that is getting missed 5 weeks seems a long time for something like this to not get any better. I mean are there things that wouldn't show up on a normal x-ray?

Any comments would be much appreciated

Sorry again the post is so long

best wishes

Carolyn

[ScienceNerd]

First of all, it sounds like you need to find a better ortho! You may be having problems with your hip, which you should be able to have treated in a better way than just painkillers (really, find another ortho).

Also, a few years ago I developed a stress fracture in my L5 vertabra, which at the time felt like it could have been originating in my hip. You probably will need xrays or a CT scan.

[Gymp]

Hi Carolyn,First off welcome to the board,I'm Gymp a 52 year old with SB.
You may have tethered cord and that won't show up on an x-ray,you need to get and mri or myleorgam to see if that's what it is.

Gymp

[Joy]

Hi,
I am new. I turned 40 recently and has had numerous problems with SB myself. Two years ago I went for a historectomy and were in and out of hospital for 3 months. After my 3month bedrest, I also had this painful hip and still have it. I went for a painblock last year and then trouble hit me. I had headaches for nearly 4 months 24 hours a day...the spinal fluid leaked and I had differences in pressure. The neurosurgeon agreed that he shouldn't have done the painblock on me. I battled through the headaches and still had the hip also. I nearly committed suicide. Today I still have the pain in the hip and from time to time when I can't seem to handle it I pop Diclofenac and painkillers. The doctor calls it Piriformis syndrome, something to do with the sciatic nerve. Check it out on the web. When I do stretches it helps, but then you will have to be consequent with it.

[hayley t]

HALLELUJAH! i have exactly the same problem ,i am a 26 yr old with spina bifida and up until recently had no major problems and then my right hip started acing and poppind sometimes.my gp also prescribed diclofenac to no avail.i have finally just got an appointment with an orthapedic surgeon who says nothing major has shown up on my x-ray,but they would like to do an mri scan with a steroid injection to find out what is going on! i am glad to hear it is not just me and i sympathise with u completely lol x

[Lifeisgood]

It could be lots of different things, definitely worth checking out and getting worked up. I had bad bursitis in my hip for a while, I could not do much at all. It was due to my one leg being shorter than the other and taking a lot of wear and tear. Good luck! And welcome to the gang! This is a great place to be!

[LisaJoy]

Hi -- I'm Lisa; also 45, with sb. Since you have a history of hip issues dating back to childhood, I think you definitely must see an orthopedist. If you don't mind posting your geographic location, someone might be able to recommend a good ortho for you.

You should also start trying to collect as many of your old medical records as possible; if you are in the UK, perhaps someone from there who has done this could tell you how to go about it. Many of us in our 30s and up have begun to discover that medical records have a tendency to vanish over time. About 7 years ago, I wrote to all of the hospitals where I've had treatment to get records. I was able to get everything except the records from my first surgery in 1966.

Good luck and keep us posted on what you learn!

[sean]

G'day MarineBLU28, I'm sean 51, SB. I get dreadful deep hip pain and they lock/stick a little. I have a tethered cord, but the deep bone pain I get I think is arthritis.
If the pain is less laying down, I too wake up fine 10min later it's on, and worse standing, the obvious is wieght bareing on the joints.
I too might have a glass or two of red, and it aaaalllll goes away. That suggest to me most of the pain I'm feeling is anxiety.

[debbieryals]

Find a GOOD ortho and neuro, preferrably someone with experience in dealing with adults with spina bifida or other spinal cord injury issues. Could be any of the things that have been suggested (tethered cord, bursitis, arthritis, etc). I've been having more problems with my left hip in the last few years and have come to find out that it has always had some "torsion (sp)" issues which have worsened. I was reading on another site where hip injury during birth with babies with sb is very common or some malformation before birth. Hope you can find an answer and get some help soon. By the way, I'm 56.

[haktagay]

Hi

I am new to the board I found you guys whilst trawling the web.

Sorry this is a long post.

My name is Carolyn I am 45 (ouch) I was born with spina bifida I'm not sure which type, I had to have an operation when I was born to close the base of my spine as far as I remember from my mum, I don't think it was actually open I believe there was a thin covering, but it does protrude quite a bit with a lot of scarring I mostly have problems down my left side below the waist, numbness and lack of feeling in various parts of my leg I also have bladder and bowel problems which caused a lot of problems when I was young but are pretty controlled now apart from the odd UTI I also suffered a lot with pressure sores but again thanks to a great orthopedic surgeon I had some work done on my left foot/tendons to try and drop my foot down a bit and he also had this heel cup thing made for me that fits inside my shoe, this takes the weight off my heel and (touch wood) I haven't had any problems for several years.

The reason I am writing is to see if anyone has had the same problem as I'm having now. I had been having intermittent pain in my hip which is extremely painful like a throbbing it feels deep inside the hip, just to say as well that my hip bone is really prominent with a huge scar due to a dislocated hip I had when I was born which was 'repaired' I use the term loosely as when my last ortho guy looked at x-rays of it he asked if a plumber had done the work :-) as it is pretty messy inside it's kind of rough and there is a little bit of bone that seems to have become detached.

Anyway about 5 weeks ago I had a colonscopy and about say five six days after that I started to get this pain in my hip which eventually got so bad I had to go to the after hours doc he diagnosed something 'mechanical' inside my hip and gave me painkillers anyway several visits to my own GP later I am now on Diclofenac (an ibuprofen type medication) and in between that I can take another painkiller called Acupan which is similiar to Paracetamol anyway I'm finding that these are dulling the pain a bit but it's still pretty sore plus they don't seem to last long It's starting to wear me down a bit as I'm not sleeping very well, I fall asleep and then wake up about 3am it's not sore when I first wake but then within about ten minutes it builds up again to this throbbing pain and I can't sleep and then if I can I take more painkillers sometimes fall asleep again and wake up feeling lousy, It's not any more painful when I walk in fact I don't feel it that much until I stop walking or am standing it definatly seems worse when I'm sitting or lying down it's just a constant throbbing, I cant see any swellings or red areas and funnily enough when I have a couple of glasses of red wine it seems to ease off as well :-)

I'm wondering if when I had the colonoscopy they have turned me a certain way or moved my hip (I was sedated so can't really remember) all I know is I'm in agony my doc doesn't seem that worried she sent me for an x-ray but that just apparently showed the previous damage from the original surgery.

Has anyone suffered anything similiar? normally I would be able to see my ortho guy who has looked after me since I was 16, I was still seeing him until last year when he retired and the clinic I was attending that should have passed my notes etc to whomever took over from him seem to have 'lost' me in the system and I am currently trying to find someone myself that would have experience of spina bifida and then my GP can write to them to see if they will take me on it's all very frustrating, I guess I'm just worried that there is something 'going on' inside my hip that is getting missed 5 weeks seems a long time for something like this to not get any better. I mean are there things that wouldn't show up on a normal x-ray?

Any comments would be much appreciated

Sorry again the post is so long

best wishes

Carolyn


Are you sure you don't suffer of allergy (Latex, diclofenac, Kiwi, banana, peach) ?

[Mustang Sal]

Hi Carolyn, welcome :) I'm Sally and I have SBO and Diastematomyelia in the thoracolumbar region. I get the feeling you're from the UK, if so, whereabouts?

I'm sorry you're in such pain. It sounds like you had a bit of a cowboy do your 'repair' :( So, I think you should seek a second opinion on your hip, because it's not acceptable for them just say 'oh it's damaged, here's some painkillers'. There could be other treatments that may help you, you just need to find the right doctor. The pain when resting but not so much during activity sounds like osteoarthritis to me. Diclofenac is good, but not for long term because of the risk of stomach ulcers - you should ask your GP to switch you to a COX-2 inhibitor such as Arcoxia (which I take and get on well with) or Celebrex, which is a newer generation of NSAID and is kinder on the stomach.
Having said all this, it is possible that this hip pain is a bit of a red herring, and that the pain could actually be coming from elsewhere (referred pain). The colonoscopy could have damaged some muscles or ligaments (there are several connecting the base of the spine/pelvis to the hip joint, or this could be a vertebral problem, or even a tethered cord problem. I think all of this needs to be investigated properly, because until you know what the exact problem is, you won't know how to deal with it, or what can be done about it.

Anyway, nice to 'meet' you and hope you like it here :)

[n3rdchik]

I wish I had some advice, but in lieu of that - Welcome to the board!

[Dodger67]

Take another look at the date of Carolyn's post...

[Mustang Sal]

Ha! Didn't notice that Dodger! I blame the gazillion drugs i'm on at the moment... :P