Monday, 8 February 2010

Joyful January continues into February but the end is in sight...

I am going back to my reasons for blogging in the first place and just using blogspot to record these crazy days or I will most likely forget them or blank them from my mind through a mixture of tiredness and preferring not to dwell on the memories of dreadful weeks.

Husband got back from Kazakhstan last week with back pain as chronic as I have ever seen him. He is a fighter and had managed the journey more or less unaided with two kids in tow (they had been brilliant despite it being a boring long day flight with no entertainment at all). But he cannot lie down, he cannot sit comfortably, he is in constant pain if he is standing up. There is no relief.

We had moved from my parents' house to a hotel nearby which had a two bedroom apartment for us to use, so that when the kids woke up at 2.15 on the first day (I was alerted to their wakefulness by the sound of our 6-year-old putting on her roller blades - nice one!) it would only be us who were totally knackered and not Granny and Grandpa as well. Also, this allowed us to have a few hours together as a family after weeks apart. It was so exciting to see the kids again after so long, such a lovely feeling to be back together again, and so wonderful to hear them gasp "Mummy!" as they finally arrived at our room.

I had scheduled several appointments for the day after he arrived back, and we went to see one orthopaedic consultant who was very good to talk to. We scheduled a special MRI scan for the next day, Thursday, which would show us everything we needed.  (The scans we got done in Kaz had not covered all the angles necessary to make a proper diagnosis and were not good quality or detailed enough for him to be able to use them).

The Thursday scan showed a huge leakage of disc material from between the vertebrae and into the canal in the middle of the spine which is the channel for the nerves and fluids etc. When husband had his first back operation in Brazil ten years ago, I remember the scans very clearly (I got myself into a right tizzy about him having a back op in Sao Paulo when our health insurance was pretty basic and we couldn't just go to the best that money could buy. Thank god that budget has, so far, not been an issue for this problem.) At that time, there was a tiny bit of disc material sticking out into the channel and clearly poking into the nerve lines. It was horrible to see and you could imagine why it hurt so much, and clearly see that it would likely be better taken out than remaining in. But just the thought of your loved one having his back cut open so far form home and in a second rate hospital by a doctor we didn't know very well was traumatic. This time round, there is a huge dollop of disc which has squidged out of the place it is supposed to be (between the two vertebrae) and is pretty much filling his nerve canal for the entire distance between the two discs. There is hardly any space for the nerves and other material that normally exists happily there to be there with this huge blockage, hence the extreme discomfort.

We saw our original consultant, and a second consultant for a another opinion about possible treatments, and both were pretty surprised at the size of his slippage. Both immediately said that he needed to have this slippage removed quite quickly because it could cause long term nerve damage. But as for the long term solution to the problem, the two consultants had quite different opinions. Once suggested fusing the bones together. The other recommended against fusing and said he thought a support between the bones called a Wallace Ligament would be enough.

It may or may not be the best route to take, but we have chosen the more extreme surgical option for his treatment. Tomorrow he will have a 3+ hour operation where they will cut into the middle of his spine and try to take out all the errant disc. They will then grind up the bone they have removed as they cut into the spine, put it inside a metal cage thing, and stick that in the space where the disc used to be. This apparently allows bones cells to be released which can then cause new bone to grow into the space and fill the gap. To hold it in place while this happens, they have to use several titanium screws and plates etc. The scans have also shown that the next disc up is showing signs of wear, and is pretty much about to go (maybe), so they will finish off their work by putting a support in (not a Wallace Ligament, but something similar but slightly more flexible) to try to help the rest of the lower back from also collapsing. Grim.

My poor husband has had a couple of especially dreadfully painful nights since this diagnosis was made. And on Friday night, he suddenly lost a lot of sensation in his lower left leg below the knee, and by morning on Saturday, he was getting tingling up his thigh and could not feel if his shoe was on. Loss of sensation is obviously never good, but if it gets up to your nether regions, it can lead to quite catastrophic consequences such as double incontinence and erectile disfunction. So this creeping numbness has been a major cause of concern.  He called the specialist to discuss, and his operation was moved from 'some time this week' to Monday at the first opportunity to get into the operating theatre. If the numbness continued to worsen, we were told to come straight to hospital. So far, it has not got worse, but the pain of the back in general seems to have intensified.

Husband does not really know where to put himself at the moment, he is in such a state of exhaustion, discomfort and general unhappiness. He is understandably pretty nervous about the operation, but also desperate to get away from these horrible sensations.

We moved from our hotel to a gorgeous little (tiny, tiny) cottage today which is much better than staying in a hotel for us in terms of relaxing and feeling that we can breathe out a bit, unpack for  few weeks and try to get on with life as best we can while waiting for the new baby to arrive (in less than 4 weeks' time!). Kids are behaving extremely well. Eldest is ecstatic that she has found her missing DS game in our camper van. Middle kid still has jet lag and was begging to go to bed tonight, but has been great today. Little one keeps saying "Daddy, he got sore back? My daddy, very sore back. Mummy baby in tummy. Mummy big baby in tummy. Me sit mummy baby in tummy" more or less like a scratched record! Her dolly is now sick (she has a sore back too!).

Camper van has started to be slightly more reliable about starting, but is still a long way from being reliable! Let's just say that the jump leads have been well used every day this week in the mornings. Father and uncle reckon it is damp points. I think it is damp points and weak battery. Husband is muttering about fundamental fault, but does not know enough about mechanics to be able to make a true diagnosis. So for the time being jump leads are in an easily accessible cupboard in the van for those early morning starting sessions.


  1. I hope it all goes well for your husband. Back pain is excruciating, anything that can be done to help ease it must be a good thing. What a couple of months for you all though. You'll be so relieved to get back to Kazahstan when this is all done. Big hugs, stay well. xxx

  2. Thinking of you and your family. Your poor DH, what pain he must have been in. Hope all goes well.