Difficult Decisions.

I’m currently admitted in hospital ready for the second stage of my Sacral Nerve Stimulation operation which is being done tomorrow, but after a clinic appointment I had last week I have a very difficult decision to make about yet another surgery.

My knees and hips were the first joints I had issues with before I knew I had Ehlers-Danlos Syndrome, and my knees have become increasingly problematic over time. In particular my right knee is very painful and I have constant dislocations throughout the day and night, waking me when I’m asleep and really reducing my mobility. I had an MRI scan on it which showed a very lax Medial Patellofemoral Ligament (MPFL which holds the kneecap in place). It also showed my kneecap not being aligned and a very shallow femoral groove which is the space the kneecap sits in. This all results in the fact that my knee is extremely susceptible to dislocating.

I have tried everything and anything to help reduce the impact of my knee problems; I’ve seen countless physiotherapists, had hydrotherapy and exhausted orthotics departments, trying various supports and braces but just nothing has been able to stabilise it.

I saw an orthopaedic surgeon at Guy’s a while ago who felt my case was beyond his remit, and I was referred to a specialist at St. George’s. After waiting nearly a year for the appointment I finally saw this particular orthopaedic surgeon last week. She examined my knee and confirmed all of the issues with it, and said that there are a couple of types of surgery she is able to do, but due to other factors of my ill health, the most suitable one would be an MPFL reconstruction. This means using ligament from elsewhere to reconstruct the MPFL ligament to hold my knee in place, hopefully reducing the risk and frequency of dislocations. However, using my own ligament wouldn’t be ideal for me as whatever ligament is used from my body would still be faulty due to my EDS. Therefore, in my case, this operation would be using an ‘allograft’, meaning that donor tissue (from a deceased person) would be used to reconstruct my MPFL ligament. I wanted a chance to discuss things with my parents, and so I’ve been put on the list for this surgery, but I’m going back to see the consultant in a fortnight to make a final decision.

If it’s successful, having this done will make a huge difference as my knee dislocating in the night constantly wakes me up whenever I actually manage to get some sleep. However, I don’t know if it’s a problem I should prioritise with so much else going on, including my shoulders getting increasingly weaker and frequently dislocating. It’s such a difficult decision to make, especially with it having no guarantees, although the four EDS patients the surgeon has done this operation on before have found benefit from it.

I think for the time being I need to get through this admission and the surgery I’m facing tomorrow, but the knee operation is still something I’m going to need to have a serious think about in order to come to a decision about it that, either way, will have future implications on my quality of life.

7 thoughts on “Difficult Decisions.

  1. I’m a layperson, not a doctor. But are there any concerns about immune issues arising from the placement of this foreign tissue? Is your surgeon knowledgeable about people with EDS or other autoimmune issues undergoing transplants, aside from the risks of the procedure itself? Are there other experts with whom they can consult? I would be very cautious. Be well!

    Liked by 1 person

  2. Very best of luck with this surgery Ella, Iโ€™m genuinely praying for you here precious.๐Ÿ™ I think you need to concentrate fully on what is happening right now then concentrate on deciding about your knee – possibly get as many opinions from medics, family, friends, your carer and all the folk who know you best, break it down into manageable pros and cons then try to put it together with a view to how the difficulties of the procedure will weigh against your quality of life going forward. It just feels like you constantly have these massive decisions to make, it must be an enormous strain to work through alone.
    Wishing you a successful surgery, manageable pain and all the luck in the world.
    Heartfelt good wishes to the amazing person that you are ๐Ÿ’—

    Liked by 1 person

  3. The knee problems you are describing mirror mine exactly. 12 years ago I had a different surgery to the one you have mentioned above. The surgeon realigned my knee and tightened all the ligaments. It was life changing in terms of dislocations. Bottom line is my knee had no cartilage in places and that was 12 years ago and it is starting to fall apart again (but not dislocate). They gave the surgery 5-10 years so I know that Iโ€™m pushing it now and looking at my options again. Iโ€™m based in London. If you have any questions when you are out of the hospital please get in touch – you can find me @mystripylife

    Liked by 1 person

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