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Overall I am beginning to live well although I have been having reminders that I still have multiple chronic illnesses that need to be managed as well as a surgical fusion that needs to be respected and nurtured as it heals and hopefully the donor bone grows.
I have been struggling a little the last few days with some of my comorbid conditions which have made me feel a little low, my wound is still healing well and I am so much better than I was but I have been struggling to get enough sleep and been having some stomach and Endometriosis issues. They said it could take a year for things to settle and strength to build up and for more of my longer-standing issues to be in full remission (only the symptoms caused or exacerbated by the brain stem compression, which was honestly a lot more of my issues than expected and a lot more of my symptoms have improved than I ever could have imagined, although I am still monitoring this). Something I have seen and heard happens with many other patients. The team who I had my surgery with are getting me in to see a Gastroenterologist and an MCAS specialist and a geneticist so I can best manage my comorbid conditions and remain as symptom-free as possible.
Wound, fusion & dislocation update: the wound is crusty but looking good. It's okay to sleep on now, not as sore. Most of the pain seems to be referred pain on the top of my head and also in my shoulder blades, as my shoulder blades and collarbones have always been extremely unstable and have been dislocating since I was a preteen (although I didn't know they were dislocating at the time, I used to think they were knots in my muscles or as I called them, stress lumps but now I know I was popping my collarbones and shoulders in and out sometimes several times in a school day, its no wonder I found it difficult to focus, my collarbones and shoulders were always worse around exam time when I was carrying heavy school books for revision, hence I thought the cause of these painful lumps was stress).
So I need to work on all the muscles that will help stabilise these areas as the fusion is likely to put them under greater strain and from having to stop physio for so long when my neck became too dangerous a dislocation risks, I have lost a lot of the strength I had built up through 1:1 Pilates. Although I've only had 2 dislocations post surgery, whereas previous to surgery I would have had at least several subluxations and dislocations a week and even in a day when at my worst. I think this is because the neck/brain stem issues were causing my MCAS to flare and causing body-wide inflammation and inflammation was causing pressure in my joints so they would pop in and out frequently, often my joints would swell and get itchy before dislocating. So although my joints are just as unstable they aren't being triggered in the same way as before surgery.
I have a genetic condition and various co-morbid conditions some that may go into remission but many that will always need some level of management and will change at different stages in my life but this surgery has given me the hope of managing my illness well instead of struggling to survive. So thank you so much for giving me this opportunity to recover in an environment where I have ease of access to holistic treatment and can focus on all my medical issues whilst healing, hopefully coming back to the UK with the energy to help other patients and with a well-managed illness that I can live well with. Rather than having to prioritise my most serious or life-threatening health issue and just accept bad health or daily pain as my normal.
Now it's my turn to show how grateful I am to everyone who has helped me get this surgery and helped me to recover somewhere I have access to appropriate treatment by putting in the work of recovery and making the surgery count. Managing my medicine, nutrition, rest, physio, the needs of my new neck and posture. So thank you again so much. I will keep you updated on our progress.#Chance4Charlie
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