Chronic Pain, Disability, Ehlers-Danlos Syndrome, health

Major Knee Surgery? Been there, done that…

A few weeks ago, I was talking to my very good friend (and knee twin) Deb, who is about to also undergo a Tibial Tubercle Transfer (along with other procedures) on her right knee, and she suggested that I should write a blog post with all my tips for surviving major knee surgery, so, here we are. 

Before I get started, this post is based purely on my own experience and conversations with my medical team.

I’ve been told I need knee surgery, now what?

For me, research was key. From the moment Mr M told me that surgery was my only hope of stabilising my kneecaps, I spent ages researching the different procedures and different outcomes and I found it really useful to know what to expect. 

I also watched a lot of knee surgery vlogs and below are some people who I strongly recommend checking out on YouTube to watch their experiences with Tibial Tubercle Transfer surgery.

  • Izzy Kornblau (My favourite knee surgery vlogs, and particularly useful if you have EDS)
  • Sara Spaulding
  • Heather Merrick (mustloveicecream)

I have my pre-op assessment soon, what questions should I be asking my surgeon?

Everyone’s pre-op assessment will differ, but for me I had a video call with Mr M 6 weeks prior to surgery and that was my chance to ask every question I could think of and confirm that the operation was the right thing for me. I can’t tell you what questions you should be asking your surgeon, because everyone’s situation is different. For example, a lot of my questions were EDS based purely because that was my biggest concern. However, below is a list of questions I did ask and the answers I received, so hopefully they will help you come up with your own list. 

  • What exactly is going to be done to my knee in surgery?
  • A full patellofemoral joint reconstruction (MPFL reconstruction and VMO advancement) with a tibial tubercle transfer and lateral release.
  • What type of TTT will be performed?
  • Anteromedial Distalistaion, an L shaped block of bone cut out, moved inwards and forwards to correct the height of the kneecap.
  • How many incisions will be made and roughly how big will they be?
  • One long incision as the TTT has to be done as open surgery and therefore, there is no point doing the others as keyhole when the knee will already be cut open.
  • What anaesthetic will be used; general or spinal and will I be given a nerve block for the pain?
  • General anaesthetic first, then a nerve block placed in the femur and lastly local anaesthetic injected directly into the knee joint.
  • What is the post-surgery plan; when can I start putting weight through that leg, how long will I need to wear the brace for, how often will the flexion on the brace be increased, how often will I need follow up appointments?
  • Fully weight-bearing as tolerated from day 1 post-surgery with leg in brace, locked at 0 degrees flexion. Flexion to increase by 30 degrees every 2 weeks. Follow up appointment at 2 weeks and 8 weeks with x-rays taken at 8 weeks.
  • How soon after surgery can I start physiotherapy?
  • At 8 weeks, if the x-rays show sufficient bone healing.
  • How many screws am I likely to end up with?
  • Just one.
  • Will stitches need to be removed or will dissolvable ones be used?
  • Long-lasting dissolvable stitches, which will slowly dissolve over a few months. 

My surgery date is booked, should I self-isolate prior to surgery?

In all honesty, it depends on how desperate you are to have your surgery done. If you don’t mind potentially having your surgery cancelled and re-schedule then I would say there is no need for you to self-isolate. However, I would strongly advise everyone to self-isolate for at least a few days prior to surgery (regardless of whether there is a pandemic happening or not), purely because if you become unwell, your surgery will be cancelled and you could be left waiting for months for a new date. I personally self-isolated for a week, had a Covid swab, blood tests & an ECG and then went back into mandatory isolation for 72 hours prior to surgery. 

What was in my hospital bag?

  • My own pillow: I wanted to at least try and get some sleep. I had my surgery during a worldwide pandemic so did check I was allowed to bring my own in and they said it was fine as long as it was in a coloured pillow case. The pillow was also extremely useful on the journey home as I had to lie across the backseats of the car, so I propped myself up with it. 
  • Snacks: I debated for a while about this one but I am so glad I took some with me as I was really hungry but struggled to actually eat much, so my little snacks came in handy. I just took a few small packs of things like yoghurt covered raisins, small and easy to eat. 
  • Slippers: I just wore my slippers into hospital on the morning of my surgery as I knew I would need to wear them on my way out and didn’t want to waste any space by taking them as an extra. 
  • Comfy shorts and T-shirts: Getting dressed was an absolute chore, even with a nurse helping me so I was so glad I had packed easy things to get on and off. I debated taking baggy tracksuit bottoms with me but I’m glad I didn’t as my whole leg was almost double its usual size after surgery, due to swelling and I then had a bulky bandage and a brace on too, so there is no way any trackies would have fitted over my leg.
  • Loose, comfy cardigan: I didn’t want to faff around getting jumpers on and off after surgery, but I also get hot really easily (cheers for that one POTS…) so I didn’t want to take a dressing gown with me. I therefore packed the comfiest cardigan I own instead and it did the job perfectly.
  • Blanket: For me this was more of a comfort item than a necessity, but it came in so handy. I ended up asking my nurse to take the hospital duvet (if you can even call it that…) off and I just slept under my blanket as it was lighter and way more comfortable.
  • Airpods: As exhausted as I was when I got to the hospital (I had to wake up at 3am to get there in time), I could not sleep due to nerves so I was very grateful for my airpods, which allowed me to take my mind off things a little bit.
  • Kindle: I definitely wouldn’t pack this next time I have surgery as I can honestly say I did not touch it once. I was so nervous beforehand that I couldn’t concentrate on anything, and afterwards I was drugged up to my eyeballs and could barely keep my eyes open. 
  • Medical ID and my bank card: I had surgery done privately and I had no idea that I would have to give them my card details when I checked in, just in case I racked up extra charges so I was so glad I did pack it. I then had my medical ID cards with me that explain all of my illnesses and allergies and what to do if something happens with regards to them. I understandably wasn’t able to wear my medic alert bracelet into surgery so having these cards gave me a bit more peace of mind. 
  • Medicine pack: Similar to my medical ID cards, should the worst happen I went into anaphylactic shock, I didn’t want to rely on nurses having to go and find epi-pens, when I could just have them right next to my bed. I also had all of my prescribed medications in there (in their original packaging, otherwise the hospital staff won’t let you take them).
  • Crutches: Due to my EDS I already had my own crutches, which were far easier and comfier to use than the standard NHS ones you get given, so I took them with me. It also helped that they are bright and colourful so they made me smile, even when I was in agony whilst using them for the first time. 
  • My penguin: If you follow me on Instagram, then you will know that Penguin is a very important part of my chronic illness journey. He’s my one constant whenever I am in pain or feeling really unwell, so of course he came with me to hospital. I also wasn’t allowed any visitors or family members with me at all, so it was nice to have a tiny bit of home with me. 

What were my recovery essentials?

  • Game Ready Ice Machine: Hands down the absolute best things I got for recovery. When I spoke to Mr M back in August, he recommended this to me to help reduce my post-op swelling and so I rented it for the first 5 weeks. I was genuinely gutted when I had to send it back, as it provided more relief than all of my pain medication combined, and my swelling went down so quickly. 
  • Raised toilet seat: I wasn’t entirely convinced about this one, but Mum persuaded me that I would need it and thank god she did. There is not a chance I would have been able to go to the loo without it as I would have been in far too much pain. 
  • Bath stool: I already had this prior to surgery but for my recovery it had 3 different uses. For the first few weeks I used it as a leg rest when I went to the loo as I quickly realised that if my leg wasn’t elevated the pain was so intense that I became close to passing out. I then also used it in the shower, in conjunction with an actual shower stool for exactly the same reason. And lastly, I used for its actual purpose in the bath as it meant I could rest my operated leg on it to wash and shave, eliminating any need to bend my knee and hurt it. 
  • Shower stool: As I mentioned above, I used this in conjunction with the bath stool. Having a shower was absolute agony for the first couple of weeks and if I didn’t have a shower stool, I simply would have been completely reliant on freshening wipes until I was able to have a bath. 
  • Walking Frame: Whilst I had my lovely bright pink crutches from Cool Crutches, there were days where I was so weak, I could barely hold myself up, so I relied on my walking frame a lot. 
  • Over the bed table: I spent the whole first 2 weeks in bed and so this came in extremely handy. It meant I could eat meals in bed easily, I could stay lying down but still facetime people and I could keep things like my phone and laptop easily accessible at all times. 
  • Trolley cart on wheels: Probably my favourite thing I bought for recovery, so much so that even now my initial recovery is over, I refuse to get rid of it. For recovery, I kept a lot of snacks in it (I didn’t want to make my mum and brother keep running up and down the stairs to bring me things), all my medication, medical equipment etc.
  • Tabletop Fridge: As I mentioned earlier, I didn’t leave my bed for 2 weeks except to go to the bathroom. I therefore kept things like yoghurt, milk and iced coffee (yes, I count iced coffee as an essential food item) in my fridge, so that I could get my own breakfast etc.  

My biggest tip for this sort of surgery is to take things slowly, it is a major operation and it’s going to take a long time to recover. I am now 11 weeks’ post-op and I’m nowhere near recovered, but it does get better and progress begins to be made more often. 

Deb, this post is for you, you have got this surgery and recovery in the bag and I know you are going to be just fine. Remember our motto, “Stay in bed and don’t f**k it up”! Xx

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