Dr Guichet (June 2024) | Bilateral Femur | 172(cm) -> 179(cm)

Post Operative Day 34

Sorry for the delay, the website was down for me and kept saying my account was suspended.

I had my Cone Beam, DEXA, X-Ray and blood tests done on Thursday and had a lengthy consultation with Dr Guichet. The tests all confirmed I have slow healing, which is rare and is causing most of the issues.

Dr G went through scenario planning with me. It breaks down as follows:

1. We will only click 7 times per day (down from 21) - so only 0.47mm per day. This will put less pressure on my soft tissue. This is causing major issues as my legs are buckled in a 'Z' shape right now and I can't put any weight on them. This means I can't stand or do anything for myself. Dr G thinks with a slower lengthening rate and lighter exercise regime the soft tissue should release within 2-3 weeks. If it doesn't, he said this would be clinically inexplicable although they would try work out why. If there is no release despite all these measures then we'll probably have to stop lengthening as my body will have more or less rejected it.

2. Reduced exercise regime. I'm not longer doing maximal knee extensions, hamstring exercises, and all other exercises are dialled down to fewer reps and never forced. This is designed to give the soft tissue more rest. I've also been assigned a physio for deep tissue massage every 1-2 weeks.

3. Dr G has prescribed Hyalurofin to boost healing and Artifen for joints. The latest scans show a very small amount of healing has started, which is encouraging, although I can't feel any difference in terms of quality of life (pain, flexibility, etc).

4. If we see improvements in my soft tissue and healing in the next 2-3 weeks, Dr G thinks we may still get to 6cm by around 17 August. 7cm will take until early/mid September. Unfortunately, I can't detect any difference whatsoever in my height because I am (temporarily, I hope) crippled, so I don't feel taller and in fact probably present as shorter than I was before surgery because of the distortion in my legs. If I am able to stand straight at 6cm, I will seriously consider stopping. But I need to 'feel' what 6cm looks like, to stand next to people, to be outside, etc before I can decide. Right now the focus is just on getting my legs to work again, but just thinking ahead about the decision process assuming I do make it to 6cm. 6cm will mean I am comfortably 5'10, which I feel is a good average height.

So in short, all depends on my soft tissue releasing in the next 2-3 weeks and some measurable healing. The healing does seem to have started after a week of reduced clicks, but the soft tissue is completely f*cked, can't stand, and remain in lots of pain. Sleep continues to be impossible because my legs are forced into a really unnatural and painful position all the time - there is no position that exists which is not painful. The cycle seems to be 1-2 days without sleep, then exhausting will eventually take over and I might pass out for a couple hours during the day on the second or third day. Rinse repeat.

Clicking

The reduced clicking has really helped mentally - clicking 2 or 3 times in a session is a lot less intimidating. My delayed healing also means there is basically nothing inhibiting the nail, so I can click within 5 seconds on both sides with zero pain. Probably the only thing I haven't had major problems with - although it's actually a consequence of a complication (no healing!).

Independence

I continue to rely 100% on outside help. If I try stand to go to the bathroom from the sofa I am drenched in sweat, panting and exhausted by the time I make it to the toilet. This is because my arms and shoulders carry my entire body weight. I was a strong, fit person before this surgery that spent a lot of time working on upper body strength before the surgery but this doesn't really prepare you for carrying your whole body weight across distances. I can't safely go outside, or anywhere really without help other than the toilet. I can't cook or prepare food because I always need my hands to hold myself up.

I just moved out of my temporary accommodation in central London, back to my apartment in East London. Really happy to be back in my home and a familiar environment. It's only a one bedroom and relatively small though, so I need to figure out how to manage care when they can't stay over. There's a couch but it's not that comfortable for sleeping.

Next steps

I will carry on with light exercise from home and hope like hell that my soft tissue starts to release. I'm still on a lot of pain killers and probably quite addicted at this point so would like to get to a place where pain is not totally distracting and I can think about / do other things, like read or watch a movie.
 

With so fast rate of lengthening there is no wonder why you face so much problems. You should lengthen no more than 1mm per day.
But for another time, Guichet is butchering his patients. I can't believe  how this doctor, after so many years operating, still doesn't follow even basic rules of safety.
And I also wonder why people prefer this doctor to do LL and give so much money to someone who defies all the rules and have crippled so many patients.

For now, stop lengthening for 1-2 days for your soft tissues to chill a little and then lengthen at max 1mm per day. Not more!
You don't have any problem, anyone with 2mm lengthening rate would have been in such a bad situation. Thats why all sensible doctors suggest up to 1mm lengthening per day. But this doctor is for sure not a sensible one.

you had warned