Saturday, 28 January 2012

Me?? My Heath etc

Me??My health problems are minor compared to Barry's, as I do not have cancer like he does.  So I truck on, we both do.

But I do have disabilities and conditions as well as HIV that affect my life. And all but the ankle fusion has happened since I got HIV

I have an ankle fusion so I have to walk with a stick and it affects my ability to do many things, high blood pressure and high cholesterol ( both common in people with HIV and on certain drugs and the drugs increase the liopids in your blood. Barry is on the same HIV meds and he has high cholesterol too and we are both on statins that gives us side effects)

I have psoriasis which is so very irritating and I did not have this before HIV.

But the most limiting thing is I have had  severe problems with my hands for the last couple of years.
This makes even typing this blog so very difficult - which is another reason I do not update it often.

I already knew I have carpel tunnel and cubital tunnel syndrome in my hands but also something more than this was going that affects my left hand and wrist mostly but also my right slightly,  but I could not get a diagnosis for a very long time.

But I have now found out what it is thankfully ? As I have been diagnosed with Kienbocks Disease at stage 3 in the last 15 months. Kienbocks is a very rare condition that is a form of avascula necrosis in your writs/s. Whereby a small bone, the lunate dies in your wrist or wrist due to restricted blood flow and the bone collapses which is painful and affects the use of your wrist and hand.
http://www.patient.co.uk/doctor/Kienbock's-Disease.htm

Above is an Xray of my wrist where you can plainly see the lumate bone is dead as it is very white.
This Xray was before it started to break down, it is worse now as it is breaking up.
You might think that one tiny bone can not be much of a problem??

But believe me you need EVERY!! bone in your wrists to work perfectly so as to have articulation and therefore proper use of your wrist and hands. Also you are constantly moving your wrist and hands and a dead bone is like having a permanently broken bone in your wrist and as it is forever you can not wear a cast forever and it would not heal anyway, so you are constantly moving a broken wrists and the pain is considerable.

It is not really known what causes it but a fall or blow to your wrist can set it off and also avascula necrosis of all kinds is a condition that people like me who had undiagnosed HIV for long enough for their immune system to be seriously damaged do get. But usually in the hips not in the wrist. So my Kibebocks could be due to this? Another reason everyone to be regularly tested for HIV and to know your status - its too late for me.

I had an operation to relieve the Kienbock pain and symptoms in November 2011, it did help a bit. I had denervation - a process whereby they cut some of the nerves to the bone so you do not feel the pain, but it did not do a lot and it is incurable - like HIV sadly - http://en.wikipedia.org/wiki/Kienbock's_disease

Untreated it will get worse and my wrist become misshapen and unusable and when this happens they said they will fuse it but for now want to keep the flexibility in my wrist as long as possible.

At the same time as this operation I also had decompression of the cubital nerve on my left wrists which has partially helped.

I do really need the carpel tunnel syndrome operation and the cubital nerve decompresed on my right. However it was suggested , and I agreed as I really do not want to have more operations and general anaesthetics than need be, to wait until I need my left wrist fused and have the carpel tunnel on my left done at the same time and then the right cubital and carpel at a later date once I have recovered from the wrist fusion.

I have been told that that in my case Kienbocks could be due to having undiagnosed HIV ? But who really knows? Not my doctors it seems?
All I know is I have HIV and now I have Kienbocks and life is now changed forever for me!!
Well that is all the sob story you will get here

Sorry if this is gloomy, but I wanted to put my blog up to date, but we both truck on
And I having done so I will resume by blog updates on a more positive theme from now on.

2 comments:

Anonymous said...

Hi! I found your blog while researching Kienbocks. I too have this lovely disease, and had radial shortening to treat stage 3a. So sorry you are dealing with this, no one who doesn't have it can quite understand the pain. My thoughts are with you.

Veritee said...

Hi Anon

I am sorry you are having to deal with Kienbocks as well. As you say unless you have it you don't realise how painful and debilitating a wrist problem like this can be.

I did last November have de-nervation, which thankfully has worked well to reduce the pain. I am trying to delay having a total wrist fusion which is the only solution offered to me as I am now a stage 4, but that will mean I have no flexibility in my wrist and I do crafts and sewing etc so prefer some flexibility as long as possible.

Do you know that there are two good supports groups for Kienbocks, one on Yahoo groups and one on Facebook?

I find them a help
https://www.facebook.com/groups/kienbockdiseasefriends/

http://health.groups.yahoo.com/group/kienbock/

There is also another on Facebook I do not use so much because I am in the UK and mos in this other group are in the US

But you may be in the US https://www.facebook.com/groups/Kienbocks/

Anyway good luck and let me know how you get on if you read this

Veritee XX