Friday, 7 February 2014

Yes You Have a Diagnosis, but No You Cant Have it Fixed - October 2013

My GP made a request for my open hip surgery  through the NHS choose and book system (C&B) and it was rejected. I don’t know why. The NHS state the following about Choose & Book:
  •  “You can choose any hospital in England funded by the NHS (this includes NHS hospitals and some independent hospitals). 
Although my surgeon of choice was located at a private hospital, he has done hundreds of similar surgeries through the C&B system on patients coming to him from as far a field as Scotland.
I will not go into the very dull details of how stressful the next few weeks were as I tried to get the bottom of this, suffice to say the C&B system obviously has some very complicated internal rules and pathways that means it does not work as straightforwardly as they like to make us the patient think.
The final outcome was that my request had been forwarded to “funding panel”  of my local  Care Commissioning Group (Formally know as Primary Care Trust) - This panel did not meet until just before Christmas ( it was now late September). They would review my case and decide whether or not to release funding for me to have the surgery in Truro. I would not get an answer until after Christmas, and the answer might still be no. In which case I would have to make an appeal, filling lengthy forms and about why I felt I needed the surgery etc.


It was pretty much like having the wind knocked straight out of you. I will admit to putting the phone down and crying - a lot. All these years trying to find out was wrong and how it could be fixed, and now we knew,  they didn’t want to fix me. I was gutted to say the least.
I spent until mid October trying find out more out about how the C&B system worked, trying to see if this was just some sort of computer error but I got nowhere. I could not face the thought of struggling in pain through the coming winter. I was getting worse. I was beginning to feel like if I did not get fixed soon, I would either have to modify my work severely – this would mean dropping some long standing clients (I am a self employed pet carer) or even give up work completely. They were both very real yet concerning options. The winter would be the best time for me to get this surgery as it is my quietest time of year. If I could spend December, January & February rehabbing, I would be all set for the rest of the year work wise. If I were to go through the funding panel malarkey, it could be at least 6 months until I get surgery - and that was if they said yes. If they said no, it could easily drag out to another year with an appeal. To have surgery in the spring would cause huge damage to my business, which I spent years building up.
After a lot of discussion, tears and general stress over the situation, we decided to self fund this surgery. I booked the surgery with Mr F for December 2nd 2013.


I did feel like I was letting the NHS get away with not helping me. Perhaps the most annoying thing about it all, is that by having hip preservation surgery now, it  means I should avoid needing a Total Hip Replacement in the future, so I am saving the NHS money again there

Now I don’t want to sound ungrateful for the NHS. The staff on the coal face of it are amazing people, and heaven only knows how much my friends & family have benefited greatly from their care over the years, and will continue to do so. We really are very fortunate to have “Free” health care here in UK. But when a family like us think of the £1000’s of pounds of taxes we have contributed to the NHS over the years, and also to think of some of the things they do  pay for, it really hurts that they are unwilling to help me

If you would like to know about a bit more about the government Quango that is the NHS and its beloved Choose and Book system, click here:

http://www.chooseandbook.nhs.uk/

If would like to read the very dull, but nonetheless informative polices on hip impingement surgery that the NHS and NICE (National Institute for Clinical Excellence)  use to base their decisions for funding upon, then, have a look here:

Open Surgical Debridement:
http://www.nice.org.uk/nicemedia/live/11181/55772/55772.pdf

Arthroscopic Surgery
http://www.nice.org.uk/nicemedia/live/11328/56417/56417.pdf


This is a table showing the surgeries and treatments that are not normally funded by my CCG. (Hip impingement is on page 5):

http://www.bristolccg.nhs.uk/media/14014/new%20branding%20-%20updated%20INNF%20LIST%20For%20Referrers.pdf

There was a policy relating to the above regarding the criteria that needed to be met for the surgery to be funded. The policy does not seem to be available at the moment

Other dull yet helpful pages:

A report of funding requests and results 2012/2013:

http://www.bristolccg.nhs.uk/media/18253/17%20-%2012-13%20Individual%20Funding%20Request%20Report%20240413%20-%20for%20information.pdf


Choose and Book Care Path Ways:
http://www.chooseandbook.nhs.uk/staff/communications/fact/carepathways.pdf

Article discussing on restriction on certain treatments offered by CCG's. Hip impingement is listed as being one most serious treatments (i.e for one that causes serious pain) to be restricted by 18 CCG's :

No doubt I shall have more to report on this delightful subject as I will have apply for funding for other hip to be done in the future!

Tuesday, 4 February 2014

Second Opinion On Hips - September 2013

 I was thoroughly depressed  at the thought of a 3rd lot of  excruciatingly painful facet joint injections, which I knew  would not work, just as the previous two from the pain clinic hadn't. And they weren't going to  happen until November anyway, another 4 months of limbo land.  I felt like my life was just racing away. I was 32 now. The years just kept ticking away and my pain was getting worse and worse and no one seemed to be able to help me. All these appointments and tests take months and months to come and go. I could go on like this forever, not doing the things I love until I am to old to do them anyway. I reluctantly decided that I must go ahead with these facet joint injections if that was what Mr H needed to do to move me further along his list. But in the mean time I decided to get a 2nd opinion on my hips

 I now had my images so I decided to put this x-ray from 2012 up on the Face Book hip group, expecting people to say my hips looked great, no FAI.



 What happened next had me lost for words. A hip surgeon in England who was a member of the group commented

 “Big diffuse cam both sides, deep sockets, over covered posterior wall. Barn door”

Ok. Just a few words, but seemed to say more than any other surgeon had about my hips.  What followed was brief exchange about what he meant by “barn door” turns out it is his northern term for “Blatantly Obvious” I asked him if he thought my situation could be helped by scope surgery, as suggested by Mr W.

“ The X-rays show deep over covered sockets with obvious impingement trough at the front of the femoral neck. I'd struggle to trim the back wall and reattach the labrum arthroscopically, and if you are the girl with the horse, you seem young enough to warrant complete correction of the deformities. I would offer open surgery if a patient of mine had appropriate symptoms and the X-rays shown. This is a general opinion based on my own experience, and not a recommendation ( disclaimer as I can't be a Facebook clinician!)”
Open surgery?! I didn’t even know what that involved but I could guess. On research I discovered it meant a long incision, dissection of the muscles and removal of the head of the greater trochanter to allow access to the hip joint, dislocation of the hip joint to allow the work to be done. Then putting me all back together with 3 screws to hold the top of my greater trochanter back on. It would mean at least 6 weeks non weight baring on crutches and probably a full year to recover completely. Scared? Yes I was, but in a good way. I needed to see this man!

So I tried to get a 2nd opinion appointment via the good all choose and book system, because he was located in Truro. That did not work, some question over funding. Fed up with hitting another brick wall,  I made an appointment to see him privately on the 10th September 2013, 3 days before our long awaited holiday in Cornwall.
I spent the 2 hour trip down to Truro in a fair amount of pain as I wanted Mr F to see me at my worst! I was pretty miserable, and stressed by the time we got to he hospital and I really did not feel I had the mental or physical strength to face yet another recital of my history of back pain. I was worrying about the physical exam too, as the tests that they do for impingement are really painful when you actually do have impingement!! I had been sore for 2 weeks after Mr P did the good old anteroposterior (AP) impingement test,
( you can see what this test is here: http://www.jaaos.org/content/15/9/561/F3.expansionr )
 I was pretty much a tight ball of  pain and anxiety by the time I went into his room.
Anyway I needn't have worried Mr F was fantastic. I could tell my husband liked him straight away, which is always a help. He spoke in plain English, was upbeat and enthusiastic. During the dreaded physical exam everything hurt, he started to do the AP impingement test on my right leg and it was actually shaking at the thought of the twist and pull he was about to do. And he noticed! "I don't think we need to do that test, it's pretty obvious what your reaction will be" Oh thank god! a surgeon who actually listened to me (and my body)!
I really cannot remember much about the consultation after that. I know he was talking about the fact I had deep sockets with posterior acetabula over coverage, which was what was causing my main impingement pain and that there was also cam impingement. He said both hips looked the similar but the right one had a bigger cam.  I know he got my x-rays up on the computer screen and was drawing lots of lines and angles showing us how rubbish my hips actually were. My husband loved that bit. They both spoke the same language, it sounded to me more like they were discussing an engineering project than my bones! He said he would only be able to do the surgery via open dislocation, and that both hips would need doing, probably about a year apart, he would start with the right one . I asked him what would happen if I didn't have the surgery "You will need hip replacement in your mid 40's" . He advised that if  I wanted him to do it, I should be able to get my GP to request it through the NHS choose and book system. He then suggested a hip joint injection, if I could hang around a few hours. Not particularly for diagnostic reasons as he could see the impingement from my x-rays, but to try and provide me with some pain relief.  How could I say no?!
So I was admitted as a day patient and Mr F performed  the  joint steroid injection into my right hip. It was VERY PAINFULL, I would say more painful than the MRA dye injections that I had. But the result? No pain in my right groin or lower back.
I was now up to about 11 years of chronic pain, and to be given relief from that honestly felt like one of the most kindest things anyone had ever done for me! I spent the next 3 weeks feeling like a huge weight was lifted from my shoulders. I could bend, twist, walk the dogs, do the hoovering, the laundry, muck out our small pony,  ride my horse with pretty much no pain. There was still a niggling pain in my left groin and  SI joint but the feeling like my back was constantly on the verge of spasming had gone. A small part of  me felt very cross that Mr W had virtually poo-pooed our questioning the benefit of  hip injection. But mostly I just enjoyed the feeling of being happy and relieved to be finally getting somewhere! 
Here is a copy of the x-ray that Mr F produced, showing how my hip looked then and the lines showing how he could make it look during surgery. Pretty neat! 
Hips September 2012, showing the excess bone causing my impingement


A bit from the letter  following the appointment:
"You have got some long standing low back and sacro iliac pain that has previously been investigated by my colleagues up in Bristol....The x-rays of your hips today are significantly abnormal; with pincer over coverage of both your hip joints with a very large over hanging posterior wall to your hip socket. On the right hip this is accompanied by a fairly significant cam deformity......clinically you have got very obvious signs of cam impingement with pain in what should be the normal arc of movements....I think open surgical hip dislocation and debridement gives you the best chance of having a significant improvement in your symptoms....I am very confident open surgery will give you improvement"
So there it was, in black and white, my second opinion, a bit different from the first! 




The Spinal Specialists Opinion May - July 2013

30th May 2013. Appointment Mr H, but it was actually his specialised physiotherapist. She did X rays and an exam. She said the  x-rays showed some degenerative disc disease (DDD) in the lumber region but  it was mild and did not relative to amount of pain I was reporting. She referred me for an MRI.

2nd July 2013.  Lumbar & thoracic MRI

31st July 2013 Appointment with Mr H's specialist physiotherapist for MRI results:
Shows some DDD in the lumbar region, she seemed surprised that the amount of pain I am in can be caused by this mild DDD. I actually start to feel like she is questioning whether I am making my pain up. She then goes on to  recommend some more facet joint injections. Yuk.  I explain that I have had these twice before, and they did not work. She says worth doing again, as Mr H likes to do them himself before continuing with any other treatment. I very reluctantly agree to the injections, and am already dreading the pain of them. She then goes on to discuss spinal surgery, but doesn’t seem to think my discs are bad enough, but she says I can have it if I want it...... What?! How does s that work then? Spinal surgery even they don’t think I need it? I am very confused now. I  do not like the idea of spinal surgery AT ALL. I beat a quick retreat from this lady, I did not want to discuss any further.
I get no following letters from this clinic as I did with the hip one. But I have now requested a copy of the records they hold from these appointments.
August 2013 : I receive a letter with a date for my 3rd lots of facet joint injection, 21st November 2013. Oh goody I can't wait. (sarcastic tone required for last sentence)

The Plan Going Forwards....


After the fully coming to terms with the thoroughly depressing thought  that nobody would ever be able to do anything for me and that I faced the rest of my life in this amount of chronic pain, which would probably only continue to get worse, I came up with a plan

1)      I would get a hold of my hospital records and copies of all my imaging. I needed to take control of my pain. I needed to have that information in my hands if I was to take control of this situation.

2)      I would ask the GP to refer me to the spinal specialist to see if there was anything that could be done about my back

3)      I would get a 2nd opinion from a hip specialist.
4) I would get back on my horse, stuff what Mr W says, I am sick of wasting my life not doing things I enjoy. I shall do them even though it hurts.

So I set the ball rolling to get hold my notes & images. This required submitting a Subject Access Release form  and paying £50 to the Medical Legal department at Frenchay. A very miserable and difficult  group of people to deal with. I eventually received my notes in mid may, 4 months after requesting them
I asked the GP to refer me to the spinal clinic, she chose Mr H at Frenchay.

 

My X- ray & MRI Images

These are the X- Ray  images  and a few of the MRI images that were provided on CD after I requested a copy of my notes history relating to hip and back. These are the images used by Mr W & Mr P to diagnose my "mild FAI" 
Hip & Pelvis 2010

Hips & Pelvis 2012
 
Left Hip 2012
 
Right Hip 2012
 
X Ray during injection of Dye into Joint, Nov 1012
 
MRI 2012
 MRI 2012
 MRI 2012
MRI 2012
 

Nine Months To Arrive At The Final 1st Opinion. May 2012 - Feb 2013


If the years running up to Donna, my new physiotherapist believing I have FAI were complicated, then the next 18 months were just as much so!. My advice when you are going through the GP referral process is that you keep a note of everything, just jot down in your diary or create a document on your computer. Record appointments (and cancelled ones) and a brief description of what was said. It makes it far easier to keep track of everything rather than relying on memory or leafing through the pile of paperwork you will inevitably collect! I recorded mine on my computer, which now makes explaining the shenanigans a little less taxing on my brain!
So here goes, I warn you, its a long story!

16TH May 2012 -  went to see new physiotherapist Donna, she suspects FAI in left my hip and would like it MRI’d

1st June 2012 Referral letter from Donna to GP

               “....she describes a constant lumbar pain, radiating into the left hip with a burning pain into the buttock and lateral thigh. She also complains of left hip pain.....she has a flat lumbar lordosis and poor muscular control around her pelvis. Her left ilium is slightly higher and rotated at the sacro iliac joint. Forward flexion is painful, limited and she compensates with side flexion to the right. She has a small degree if neural tension on slump and L4/5 S1 is painful on palpation. However, her hip pain is reproduced with impingement tests and brings on her buttock & thigh pain....I have referred her for clinical Pilates to deal with muscle deficiencies around her pelvis and I have started a gentle manual therapy programme to restore more natural movement in the spine. however I am concerned her left hip pain has never been investigated. In light of the strongly positive impingement signs and reduced movement, I think an MRI would be sensible”

8th June 2012 - Appointment with GP. I giver her the referral from the letter from the physio and ask for a private referral to someone at the private hospital. She recommends Mr W.

9th July 2012 - Private Appointment with Mr W,  following letter goes as follows

               “ ...At present lateral left hip and groin symptoms have become more troublesome. She can only walk for 30 minutes and will the experience more persisting low back and left hip pain. She has an occasional clunk in the groin on hip movement which appears to be related to the psoas muscle on provocation today....she walks with a slightly stooped forward gait. The leg lengths are equal and Trendelenburg test in normal in each hip. There is some discomfort on full flexion, restricted to 110° with positive anterior hip impingement test. The Psoas provocation test was positive, producing a clunk. Gilmore groin test did not produce any pain in either groin but did produce low back pain. Faber test produced pain in the low back and left sacroiliac are but not the hip. There was localised tenderness over the left sacro iliac joint, with no significant pain in the gluteal tendons or trochantic bursa area. There was no palpable inguinal hernia.....some of the pain in the lateral left hip and groin area could be related to impingement at the left hip. I have recommended further x-rays of her pelvis and left hip, to be followed by MRI arthrogram”

This was a private consultation that I  paid for, I was then referred on to Mr W's NHS clinic. This required an almost duplicate consultation as above, but at Mr W's NHS clinic, carried out by the his registrar Mr P. This appointment did not happen until the 12th October. 2012, 4 months after I initially saw Mr W.  
In the mean time I had an x-ray of my pelvis at our local hospital. Between seeing Mr W in June and Mr P in October  I began to get the same symptoms in my right hip. I struggled through with Donna trying her best to keep my back happy. We managed to get me into the gym and I was trying to use the static bike, wave machine and leg press equipment alongside Pilates with a colleague of hers to try and strengthen my back. But all these exercise only worsened my hip pain on both sides and we had to drop back to just very simple floor exercises. I had a little routine of clam shells, pelvic rolling/rotating from side to side, leg lift and “sit ups” that I could do at home, along with walking the dogs for work.

 12th October 2012 – Finally  I have my first NHS appointment with Mr W's understudy, Mr P. He had my Xrays that were taken during the summer. He  says the X rays look good but seemed surprised when he examined me and FAI tests were positive in both hips. His following letter read:

               “...on examination of the lumbar spine, there is only mild pain on facet joint compression active lumbar flexion is good. Examination of the hips revealed equal leg length. There was pain bilaterally on the anterior impingement test on flexion, adduction and rotation and there was also some clicking felt particularly on the right side...she reports the pain was felt in the groin rather than in the back. Range of external rotation in flexion bilaterally was 40° However there was less internal rotation of approximately 10° to 15° bilaterally....x-rays of her pelvis and left hip show no signs of degenerative arthritis. She does not appear to have a retroverted acetabulum on either side as evidenced by lack of cross over signs. There was a suggestion of small bilateral cam deformities...I have ordered bilateral MRI arthrograms. I have explained to her that should these scans show any labral pathology, then we may discuss the possibility of surgery. However, she also understands that the scans may be negative.”

27th November 2012 Hip Arthrogram on both hips. I found this very painful, though many people find it is not, my hips were injected with dye. As I had both hips done, I had to be pushed in the wheel chair and to the MRI machine. I was allowed home straight after, My hips joints had a weird “full” feeling which wore off after a few hours and I had no nasty side effects. I don’t know what sort of local anaesthetic was used, but I had no pain relief from it chronic-pain wise.

It took until the 19th January 2013 to get any results back regarding the MRA, and a variety of difficult phone calls to Mr W's secretary, one of which was on the 12th December and I was told a letter with the results was in the post!

29th December. Letter dated 24th December arrives with appointment see Mr W or  one of his team on 2nd Feb 2013.

19th Jan 2013 letter dated 11th January 2013 arrives from Mr W

               “I am writing to let you know the result of you MRA performed on the right hip on 20/11/12. This showed a minor split or tear in the labrum and a small bony lump on the femoral head that may be causing some impingement. The appearances were better in the left hip with no significant labral tear and minimal femoral bump....however the appearances are not sever and may not be the cause of your symptoms. I am mindful that your suffer with low back pain. Nonetheless, if you are keen to explore surgical treatment for your hip problems, we should consider arthroscropic surgery for the right hip and possible removal of the the bony lump and torn labrum at operation....if you wish to proceed with surgery, let me know and I will put you directly on the operating list at Southmead”

There it was in black and white. A diagnosis. I went through a range of emotions very quickly. First I was very upset at the thought I had something physically wrong and that I needed an operation. Then I was relieved that there was something wrong and I could have an operation to fix it. Then I was upset that he was saying the findings were actually quiet mild and might not be causing my pain, but that he was willing to do surgery. I didn’t want wasted surgery. And yet just by making a telephone call I could put myself on the list for scope surgery, and probably have it done in about 6 weeks time. I didn’t know what to do. At first I thought. Yes. I will have the surgery....but I cant have it yet, because work is getting busy for the summer, I could have it in the autumn. Could I last that long in pain? I asked a few questions on Face Book and the consensus was that by waiting I could make it worse. So I very nearly booked that surgery. And then, I don’t know why, I didn’t. I decided to wait for the follow up appointment that had come though for 2nd February, to discuss further.


2nd Feb 2013 Appointment with Mr Ward. We had to wait to 2.5 hours after our appointment time and so I was very sore by the time I got into see him. He was obviously having a very stressful morning clinic. I think we were in there with him for about 6minutes all together (after waiting a further 10 minutes in his room for him to appear). His computer was not on and so he had no MRI images to show me. The opinion from him was that I had only slight FAI symptoms and that it was unlikely my pain was due to the hips. He said he could still do a scope, but it would be unlikely to help as  he was certain my hip pain must be coming from my low back/facet joints. My husband asked him if a hip steroid injection might help, as the ones I had had in my back previous had not worked. He said there was no point in doing that, that it wouldn't make a difference to my pain. He suggested I do some Pilates to improve my core and get my GP to refer me to a spinal specialist and explore that route, if that was unsuccessful then return to him. Also said that I should stop horse riding, as it was not a wise thing to do with the issues I have in my lower back. This flattened me. My horse Charlie Brown is my life. I started to cry, not something I wanted to do in front of this patronizing man. He held my  hand and tried to comfort me (in a patronizing way). He made me feel like a child! I wanted to punch him! 
I left that clinic in floods of tears and have never felt so down, depressed or lost in my life. I had come full circle, from having undiagnosed back and hip, to a diagnosis of FAI, to a hip surgeon that was telling me my pain was probably all coming from my back,  and that I should go back to improving my core. I had been trying to improve my core for the last 10 years but can't because my back and hips wont let me. And I could not believe that after everything he had said, he thought may actually want to have a scope surgery from him one day. Although I did not know what to do next, I was certain that that man would never come near my hips with a surgical instrument.

Here is some of the content of his following letter:

               “Examination shows the right hip flexes to 120° with increasing discomfort beyond 100°, with similar findings in the left hip. In the right hip, there is restriction of internal rotation to 25°, with increased external rotation of 55° when the hip is extended, with positive anterior impingement test when the hip is flexed and internally rotated. The Psoas provocation tests were negative...MRI of the right hip has shown a possible small anterior labral tear in association with the recognised cam lesion or bump on the femoral head neck junction. The joint is otherwise well preserved, There is no sign of a labral tear in the left hip despite her symptoms....I offered arthroscopic surgery of the right hip, but stressed that most of her symptoms were related to the cam lesion on possible impingement. She describes further pain in both hips being possibly worse in the left at the moment. Clinically the symptoms to not really match with a primary impingement problem and I am concerned that her symptoms are probably driven in a large part by her chronic back pain, with increased sensitivity to pain in both hips and legs.....there is a chance we could make her worse with surgery, a chance we could make her better, and fairly high chance that we  won’t make much difference to her level of symptoms. It would be far better for her to spend time concentrating in improving core stability and condition of her back. She really wants to return to horse riding and I have tried to persuade her that it is not a realistic expectation given the extent of her back symptoms and problems.....I wait to hear if she would like to take up the offer of surgery after appropriate further rehabilitation.”
Interestingly he never mentioned seeing a referral to a spinal specialist in this letter.
 

Sunday, 2 February 2014

So What is Femoral Acetabulum Impingement (FAI)?

The basic meaning of FAI is that there are bony abnormalities of the acetabulum and/or femur which cause an impingement during movement of the hip. For the average person reading that for the first time, they are probably still none the wiser.
I have an enquiring mind , I like to know what doctors and physios are talking about,  so I got researching . I found the subject really interesting, if rather daunting when it came to  thinking about what might be wrong with me. But another part of me was feeling relieved to have finally found something that made sense and  I could research  and understand. The more I read, the more things made sense.
Here are some links to pages I first came across and which I feel explain FAI really well:
http://orthoinfo.aaos.org/topic.cfm?topic=A00571


The more I learnt about FAI, the more I felt that I needed to get a proper understanding of how the hip  works and what all these new words like labrum, abductors  & adductors, psoas etc meant. I found lots of helpful videos on YouTube but by far the best ones I found were from Anatomy Zone.  He uses 3D diagrams and has a good way of explaining things (for the way my head works anyway). Here are the links to his hip anatomy tutorials:
                              Anatomy of the Hip Joint (Anatomy Zone) -
            if the video  fails to show within this blog, please follow the link:
                 http://www.youtube.com/watch?v=ZWcdMj8wRos
 


Muscles of the Hip & gluteal - part 1 (Anatomy Zone)-
if the video does not show within the blog, follow the link:

Muscles of the Hip and gluteal region - part 2 (Anatomy Zone)-
if the video fails to show within the blog, follow the link:
 
If you are facing a diagnosis of FAI the most important piece advice I can offer is to do your research. The internet is an amazing resource. Keep typing in the key words like FAI, Hip Impingement  &  labral tears  into Google. Keep on clicking and keep on reading. Keep reading the FB group pages. Read blogs, there are lots of blogs by FAI patients, you can find them just by Googling “hip impingement FAI blog” You will find my favourite ones listed on my blog. Equip yourself with the knowledge of the anatomy of the hip and the muscles of the legs and lower back so that you know what doctors, surgeons physiotherapists are talking about. Don’t let them blind you with science. Its your body and you have a right to know what is wrong with it. Knowledge is power. It doesn’t happen overnight and takes some commitment ,but by doing it, you can take control of your FAI, be your own advocate!