not good news

Perhaps I should leave this blog till tomorrow as I'm exhausted (long day), but I need to get these thoughts out of my system.

Today we went back to the Royal Orthopaedic for more x-rays, a consultation with the original consultant, Mr M, from there who we saw in June and cast number 8.

J hadn't had much of a nap at all (1pm for the x-rays cut right into his nap-time) and he found the whole afternoon very difficult. To the extent that a nurse took him away during the consultation because we couldn't hear ourselves talk... :-(   He cried a lot during the casting too. Poor thing.

J managed to stand still for the xray. Yay!  Standing gives the truest view of the curve because of gravity. I don't think anyone else in the room realised what an achievement that is for a 17 month old! Especially such a tired one. Grandad had one hand, I held the other and we put puppy (a very sweet cuddly toy from France) on top of the machine, so J was looking straight ahead. Phew. We'd had to wait for a long while for the x-ray because the consultant's handwriting wasn't clear and the radiographer wasn't sure whether J should be wearing a cast or not and wouldn't take my word for it - she wanted to hear the consultant tell her.

I've been going round the bushes so far... the crux of this blog is that the consultant said that J's curve is static. It hasn't improved (contrary to our last consultation). The consultant today thought it was good that both sides of the spine are growing at the same rate so even though J has grown in height, the curve hasn't increased with growth. However, the angles are the same. He still has a 30 ish degree curve (when pressed he said 32, but it can't be an exact measurement).

The whole story today was different from the previous consultations.

Initially Mr M had said in June that 85% of cases resolve and 15% of cases get worse (and might need surgery). Last time a different consultant, Mr G, thought J had improved. Now we find out he hasn't. I asked which category he is in. The answer: we don't know! So he might get worse. And that would mean surgery.

Originally we were told he'd have 3 or so casts then go into a brace until age 4. Today was his 8th cast. We will continue to cast for the next 4 months every 2 weeks until x-rays in February. And that's not the end of the story: the consultant said to carry on casting as long as he's growing. That's a LONG time. So when do we brace, we asked? That's depends on practicalities - as children get older they want time for other things eg swimming, plus there are practical issues like how hard it is to wash with a cast. It doesn't depend on a certain age or size. That's NOT what we were originally told!

Later, in the casting room, they were saying it takes 8 weeks to get a brace made, so by then J would be a different size/shape and then it wouldn't hold/help him, so it's best to do the casting rather than brace for as long as possible.

I asked Mr M about getting a second opinion. I didn't know how he'd take that - but he was fine - he said it was a reasonable request and he'd be happy to facilitate (ie write a letter). I'd like to see about Mehta (EDF) casting. We discussed places in England that do this and he said about Oxford because of getting there being easier than, say, Leeds or Great Ormond Street.

He spoke about the problems of Mehta casting - eg the original results achieved by Miss Mehta haven't been replicated elsewhere. Plus the child has to be put under general anaesthetic every 3-4 weeks (we'd have to go down to Oxford each time - and from what I've read on the web, it'd be a whole day each time to allow for recovery from the GA). Through applying more pressure, the spine might be straightened but it can deform the ribs/chest. This is why they have shied away from Mehta at Birmingham he said. They used to do it, but changed to soft casts in the mid 90's. He said that Miss Mehta was trained as a surgeon but put all her efforts into the casting, whereas anyone doing it here now has not refined their technique in the same way (I think he was saying that the results of the treatment depend on the person's skill doing it and there aren't people here who have the same level of skill as Miss Mehta managed to get through just concentrating on that).

The consultant was wanting to emphasise that not deteriorating is a positive (ie we don't need to intervene surgically at the moment). The change from one meeting to another is hard to deal with though.

His actual angle (well, the top one of the S shape) is 32 degrees. When I said that the previous consultant had seen a 3 degree improvement, this consultant said that you can't measure that accurately - you can't measure to better than 5 degrees (there is a 5 degree margin of error anyway) and he's looked at all the x rays and can't see any improvement.

He said that with a 30 degree angle there would not be any of the following problems: respiratory problems, heart problems, shortened life expectancy. If it's not in the lower back (and J's is in the thoracic area) then it would also not have an effect on jobs or family. This is from studies in Iowa looking at 60-70 years (perhaps 60-70 year olds? my notes aren't clear - need to check out the study). Iowa said that if a curve is under 40 degrees all the above are ok. If over 40 degrees there would be back ache.

I asked specifically about backache (see previous blog where found middle-aged person with chronic back pain after scoliosis had resolved) and he said that under 40 degrees, people have the same backache as people with no scoliosis.

[my thoughts on this since the meeting are: J's curve is 32 degrees, and that's nearer 40 than, say, 15 degrees. It wouldn't be logical to think that 39 degrees means there is no problem and with 40 degrees there's suddenly a problem, so it must be on a scale, so I would have thought logically that there might be more problems with J's curve (eg it could cause an imbalance - and Mr M agreed that that could happen)... does that make sense? I'll revisit that thought tomorrow when I'm feeling fresher and see if I can clarify what I mean]

He said that the aim of surgery or a brace is to ensure that lungs develop ok up to the age of 8 with the best balance between the spine and chest.

When we asked how long J would be in a cast, he said it depends on the curve and can be up to the teenage years... basically it's about managing the curve till J has finished growing.

Is there a possibility that J will have a straight spine? Unlikely - he said he had doubts about that. The best would be 10-15 degrees.

The facts are: J is growing and the curve is not correcting.

His caution about Mehta casting is that there needs to be enough care about the rib cage. (I've seen that some types have sections cut away).

He said that if J's curve deteriorates, there is no benefit to casting more and J would need surgery.

He is writing a letter so that we can have a meeting with Mr N (an Oxford consultant). You can't have 2 "masters" in the NHS system, so we would then have to decide whether to transfer to Oxford or stay at B'ham. He had no idea how long we'd have to wait. He said we could transfer back to B'ham if we wanted to later, but would then need to wait for an appointment (he was a bit funny about that - saying quite defensively that there isn't a waiting list, but then conceding that you may need to wait for an appointment. I got the feeling that waiting lists are such a sensitive issue that you can't call it that).

I asked about puberty - whether the curve would deteriorate then. He said the most rapid phase of growth is 0-6 years and if we can maintain the curve then, then it should be ok in puberty. Boys have slower growth in puberty (it's spread out over 3 years or so whereas girls' growth is over about 18 months and that can cause major issues).

So if we carry on in B'ham, we'll cast every 2 weeks for the next 4 months and have more x-rays in mid-February (and continue casting after that, but that would be the next look at how it's all going).

If we went down the Mehta route, there'd be casts and then probably a brace.

So it's not good news. Not exactly bad news either. But very different from how it felt after the last guy told us it was getting better.

There's a big, big decision ahead about whether we transfer to Oxford with all that that would entail. Regular general anaesthetic is a huge deal. Would it be more effective? Would we compromise J's ribcage in the pursuit of a straighter spine???

Time to dig deep. This is a marathon, not a sprint.

PS - I'm fed up with people trying to tell me that scoliosis isn't a big deal and that they know people (almost always women) who have it. It usually transpires that it's adolescent scoliosis. This whole issue about such well-meaning reassurances came up on a yahoo group I'm on recently. Infantile scoliosis IS a big deal. If the curve deteriorates, we're looking at possible problems with lung function etc - and maybe spinal surgery. We don't know yet. And yes, I am  fully aware that it's all relative - we see patients with leukemia each time we go to B'ham. J's problem isn't like that. But for me, as his mother, I'm carrying the responsibility of being his advocate and navigating the system as best I can. And the consequences for J could be huge. 

PPS When I kept pressing him about the current treatment, Mr M kept returning to talking about Mehta.I thought I hadn't made myself clear, but he then said that basically what J is getting with the soft casting (ie a bit of a squeeze, rather than anything more scientific) is as good as it gets with soft casting. Yes, the casts look different each time and it seems very haphazard with J squirming sometimes - and that's how it is. He didn't answer about results from other cases or evidence base for the soft casting.

PPS J has had 2 seizures over the last few weeks where his right hand went into spasm. It was painful and he rubbed his arm and wrist and looked sorry for himself afterwards. The consultant thought it might be a pinched nerve from the cast, but didn't think it was the scoliosis.

PPPS The consultant's notes from July are incomplete in the folder - apparently the tape didn't work. So the consultant today didn't even know about J's MRI scan results and was surprised when I told him that yes he'd had one and it'd come back clear... Doesn't exactly fill me with confidence. I wonder what IS in his notes??

I wonder what would be happening without the soft casts?? No way we can know. Would it already have deteriorated, and the soft casts are at least maintaining it??

Courage, ma fille, courage!

Et avec ca, bonne nuit!