Avascular Necrosis (AV)

[NikiA]

I wonder how many people realise that AV is one of common complications of SCD. 

My son has been complaining about pains in his back, hips and knees for almost 3 years, but it was always put down to sickling in those areas. Only once did one of the consultants he sees suggest he may be Vit D deficient but nothing was done about it. I started giving him Vit D and K supplements myself just in case he was truly Vit D deficient. 

He continued to struggle with walking up until late last year when he started to lose feeling his leg occasionally and would fall over. I knew something was wrong and asked for an MRI Scan from his paediatrician and then physiotherapy/hydrotherapy  appointments from the GP (based on  my google search which alluded to this been helpful to SCD patients). The MRI was done on his back and revealed a degeneration/compression which I was told was commonly seen in people with SCD but as his spine was healthy, no further action was taken. 

Last month my son got really bad and started screaming in pain due to pains in his hip region and I took him into hospital. His haematologist asked for an X-ray and this revealed AV. He has since been referred to Orthopaedics and now uses crutches to aid walking. We are having another MRI done on his hips and have been told he may need hip replacement at 14!

I just wonder if this could have been caught earlier and prevented if someone had thought to X-ray his hips when he first started complaining about 3 years ago. Why, if doctors know AV is common to SCD patients did no one think of this? 

He was already going into clinic every 4-6 weeks and now that might increase as the consultants he sees has increased to 3 - paediatrics, haematology and now orthopaedics. That's a lot for a young boy!

I just thought to let others know; don't ignore that pain in your hips or lower back. It may be AV developing. Get help now. 

[bluebug]

The NHS treats symptoms and signs rather than deals with preventative medicine.  You only have to look at other illnesses to see this.

With AV, if the blood supply is interrupted/dies than nothing can be done. In the case of SCD they can only treat the pain. 

In regards to the hip replacement if it's really bad then get it done otherwise wait as long as possible, as due to his age he will need repeated ones. 

How many? No one knows simply as there are no firm statistics on how long they last. 

They just say over 10 years simply because most are done in elderly people. I have got anecdotal evidence they last much longer in younger people, especially if the person is not over weight/obese, but the "younger people" were in their 40s so not as active as someone is in their teens.

[mmjegs12]

Hi sorry to hear about your sons suffering, I too suffer from Sickle cell, and suffer from AV to my hips, my consultant arranged from me to have a AV surgery which required no hip replacement , what they did was to drill holes in my hips to allow blood to flow back in, this has worked and this happened over 10 years ago. Your consultant has to be very good to able identity the perfect treatment for your son. Request the drilling and not hip replacement, I hope this help, 

Secondly due sickling in the bone, Necrosis is a common factor in sickle cell sufferers, this is has been duely noted in all medical books, but not only is necrosis known to damage the bone your doctor/ consultant should always offer an annual bone density scan also calcichew ( calcium supplements) should help to build up the bone. 

[NikiA in reply to mmjegs12]

Thanks for your reply. I will discuss this alternative with the Orthopaedic at his next appointment. I will also raise awareness of bone density scans with other parents at my clinic - this is the first time I've heard about it. 

[mmjegs12 in reply to NikiA]

Your welcome , ensure that your consultant refers him to a orthopaedics surgeon, hydrotherapy is just a temporary measure, once a bone shows signs of necrosis( death ) the only way is to drill on that part off of the bone that    Is dead. If that does not work hip replacement is usually the alternative. Don't give up hope. Also depending on where you live let them refer you to Royal free or UCLH, both brilliant hospital.  Let us know how it want with the consultant 

[bluebug in reply to mmjegs12]

Have you got your vitamin D tested? Only because vitamin D is important for remineralisation of the bone. In addition if you aren't well you tend to stay inside which means you won't get enough  sun on your skin in the summer months to make it. Making enough vitamin D is hard enough if you are black and healthy in the UK but even harder if you suffer bouts of illness.

Most people actually can get enough calcium by modifying their diet so don't need supplements even if they are lactose intolerant, but have difficulties getting vitamin D and magnesium. (For magnesium eat a handful of tree nuts e.g cashews, almonds a day or take a supplement.)

You can ask your GP for a vitamin D test pointing out you fall into the black and housebound category . The NHS is trying to avoid testing people as the large majority of the UK population regardless of skin colour and health state are insufficient or deficient.

One of the symptoms of vitamin D deficiency is bone pain but as you have that most of the time it is impossible to know if you are deficient. 

[NikiA in reply to bluebug]

He's never had the test, but as a precaution I have been giving him WellKid with Calcium, Magnesium, Zinc and Vit D since one of his consultants mentioned it. I moved him to Multivitamin and Omega 3 chewables and Vit D and Magnesium effervescent tablets when he turned 13. I also encourage him to stay out in the garden as much as possible whenever it's sunny. 

One of my challenges is that he's a really fussy eater, so no way will he eat almonds or cashews, only peanuts. I do however sneak a lot of vegetables into his food. 

Maybe it's time to ask for a test.

[myriuska]

Hi, I'm 47 and I have been diagnosed in Portugal with AV of the left femoral head about 7 years ago. Did an MRI to confirm it. My doctor advised to try to manage it as best as possible to delay the surgery as already mentioned.  Losing wait and exercising (especially swimming) have helped. Feel more pain when standing up or walking for a long time. About 6 months ago I have noticed some lingering pain in the left shoulder. Might be the same. Will repeat the MRI but the doctor told me about some kind of gas injection close to the bone to substitute the no longer existing gel cushion. Let's see.

[NikiA]

Thanks so much for your reply. I will ask about that injection at his next appointment. He has AV in exactly the same place as you. I think what's made it worse is the fact that it's been going on for about 3 years now without any diagnosis. I noticed that he was much better last year after 2 courses of hydrotherapy. I have been told there's a long waiting list unless I go private, so I guess I will go private if it will help him. 

[Wunmi]

Hi, 

This was my experience as well.

My AVN of both hips started during my 2nd year at University, but as I was studying away from home, I was using a different hospital and they comsistently treated SCD for the next 1.5 years. It wasn't until I came back home and saw my original Heamatologist that an MRI was ordered and AVN was diagnosed. Unfortunately by then, the damage has become permanent and all that could be done is stop the ongoing damage by operation (They did core decompression where 2 holes are drilled into the damaged hip bones, thereby collapsing the bone). 

At the moment sitting or lying down for up to an hour at a time makes the pain bad and I have to sleep face down at night and take psin killers before sleeping to prevent acute pain should I mistakenly roll on my hips in my sleep.

My advise to all is demand the service of a Diagnotician should they continue treating SCD everytime and the pain continues to come back at the same location.

[NikiA in reply to Wunmi]

It must be awful being in pain all the time, even while asleep. It must be terrible having to deal with AV pain while already dealing with SCD pain. That's my main concern for my son too. All SCD sufferers must stand to demand MRIs or bone compression tests more frequently to avoid problems like this. I will definitely be raising awareness in the clinic I attend. 

Keep hanging in there xx

[aida28]

i feeling the same pain doctors are not doing nothing about it

[NikiA]

Ask for an X-ray or MRI to be sure 

[svwilliams15]

I too have been suffering from AV. I am now 54 and was having pain in my right hip for many years, it was always put down to sickling. However many complaints to both my GP and to consultants during my regular visits at the sickle cell clinics I was finally sent to have an MRI which showed me to have AV. I am now scheduled for right hip replacement. As you stated you have to be persistent in forcing professionals to investigate our complaints further. Wishing your son all the best. God bless.

[SickleStrongMom]

I appreciate you coming forward with your son's experiences. I too and beginning to deal with a similar situation with my 9 year old son. He has been complaining of pain in his hip, radiating to his leg, sometimes his knee and has now been limping consistently for about 2 weeks. I noticed it was different from his typical crises because normally they go from moderate to pretty severe. This time its been going in between but we haven't needed to be admitted and its lingering. He is having trouble in school keeping up with the class, I definitely notice a difference everyday and have began to worry. We have an appt this week at Hematology and are going to schedule a MRI. I had no idea this was a regular complication. I'm going to be 1000% diligent in making sure they stay on top of everything.

[SociallyUrban]

I've had AV in my left hip since high school. They did surgery which took out a small piece of bone out of the core of my hip which was supposed to stimulate growth in the area that had eroded away. It did help for a while. They couldn't do a full replacement because I was too young and my bones were still growing. Now I'm in my 30's and have major pain in that hip. I've been putting off surgery for years because it's hard to find time to be incapacitated for months, and I'm use to pain so I deal with it. I had the same thing happen to my left shoulder but my doc caught it early and it got better with months of transfusions although there are some noticeable motion range restrictions when moving that arm.

I am going to get the hip replacement soon because it's beginning to effect my life in big ways. Sitting on a hard surface for longer than 3 minutes almost brings me to tears when I have to stand up and walk. I put it off long enough. I wouldn't reccomend anyone with sickle cell wait until they are in their 30's to get this surgery. My recovery time and prep time will double now because of my age. Waiting was not smart at all.