Parents, carers and disabled parents
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Multi Level Surgery

annkparkerannkparker Member Posts: 1
Is anyone able to share any experience or advice on this major operation? Potential surgeons would be Mr James Hunter in Nottingham or Mr Tim Theologis in Oxford. Again, any advice or experience of either of these two surgeons would be very helpful to this neurotic indecisive parent!

Replies

  • nicebootsniceboots Member Posts: 196 Pioneering
    hi I have spd cp, and had multi level surgery at 13, I'm now 25.
    Before the surgery my left leg (which is the worse) turned in quite severely, I had extremely tight hamstrings and calf muscles which made me walk slightly crouched, although I have always walked independently with the aid of splints and/ or piedro boots since about aged 3.
    The surgery took about 6-8 hours, During which the surgeons broke, rotated and pinned my left hip so the my leg no longer turned in, they lengthened the adductor muscles on the left so there was less inward pull, I had muscles transferred and my right leg stapled on the growth plate to even out my leg length. they also lengthened both sets of calf muscles.
    After the surgery my legs were in plaster from the toes to just below my knees, then kept straight with leg gaiters, that I had to wear 24 hours a day (except for physio) for the first few weeks, I also had to stay in bed for about two weeks. I was in hospital for about 6 weeks, Having an hour of physio everyday.
    When I had the casts taken off, I had lots of intensive physio, (twice a day with school nurse/ parents etc and once a week intensive with my physio) I also had hydrotherapy every fortnight.
    I was given GRO (ground reaction orthosis) splints that are very similar to AFO's with a plate at the front of the leg going over the knee to force it straight, and leg gaiters to wear over night, and to do standing excercises.

    I have always been very active, I cycle swim and horse ride among lots of other activities, as I became more mobile after the surgery I went back to doing these activities, starting with swimming, then horse riding as they are both great forms of physio.
    My walking has improved alot and I tend to use a lot less energy, however I wouldn't say the surgery is in any way a miracle cure (particularly as everyone with CP is different). It took alot of hard work and physio to get the best results from the surgery.
    hope this helps
    chris.
  • TPTP Member Posts: 8
    My son had multi-level surgery age 11. His surgery was done at Chelsea Westminster Hospital by Alison Hulme and Stewart Evans. They were fantastic and the surgery was very successful. Here are some criteria to consider: As NiceBoots has described, the physio after the surgery is critical to the surgery's success. Chel-West has a first rate paed physio department with excellent after care - hydro pools, gym, home visits. Our surgeons were clear that they could not contemplate the surgery without the full range of physio being in place. This is something you might want to look at when comparing Nottingham or Oxford. We lived very close to the hospital which made the hospital stay more manageable and the post-op physio easier. I can't emphasize enough how important the post-op physio was and how arduous it was to be diligent about it. Location and ease of getting to and from the hospital isn't just a convenience issue - it may effect your ability to get the appropriate amount of physio done. Something to consider if you are choosing between Nottingham and Oxford.
    We also spoke to families that had been through the surgery - this may be difficult because I'm told the surgery is realtively rare and each person will be different. Ask each of the surgeons if thay have a family you can call to discuss their experience. We certainly have spoken to families in London whop have considered it. Although we went into the surgery expecting bone work to be done - when they began operating they decided not to do the sort of bone work NiceBoots described - my son's was only soft tissue surgery in the end but it still was 6+ hours long. We found it important to know what the range of procedures were that the surgeons were proposing understanding that they might change their view once they began the surgery. Exactly what they intend to do will effect the recovery time and the amount of physio. I'm not sure of the professional ethics issues involved but I found that physios who had worked with patients post multi-level surgery had a pretty good idea which surgeons were successful and user friendly. (In our case our private physio knew by reputation and experience all the possible surgeons we considered for this surgery and she was able to tell us that all were good!) Our after surgery regime was very similar to NiceBoots in terms of gators etc. Because my son's was only soft tissue he was up and walking in the hospital within five days. Although we were anxious like you, we were I guess more anxious what would happen if we didn't do the surgery. For us it became about limiting the unknowns rather than getting rid of them altogether. Good luck and hopefully someone will reply on the board that has direct experience of the surgeons and hospitals you are considering.
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