Hello there to all on HealthUnlocked Cervical Myelopathy page. In the UK it is Boxing Day aka St Stephen's Day. To all those that celebrate, I just wanted to stop by & wish you all a very Merry Christmas - hope it's been a time of love & joy for you.
Seasons Greetings: Hello there to all on... - Cervical Myelopathy
It's been a very quiet one. I wasn't able to get everything fully prepared as I physically couldn't do it all. I went to see my eldest son who is working over Xmas & New Year in Scotland & can't come home but I had to do a roadtrip & stay overnight. SInce I got home I've paid for it, pain & stiffness wise, but it was worth it.
Apart from that it was just me & my other 2 boys for a basic Xmas lunch. I managed to cook & get the tree up. It wasn't how I was expecting it to turn out, but it was still good to be together.
That's the thing with myelopathy - you have to lower your standards somewhat. The good news is that it's ok to to be "good enough". I stopped doing perfection many years ago - far too stressful lol.
Hope you had a lovely time too & all the best with 2019 coming up.
Hi Shirley, I can't understand how symptoms ie bowels bladder legs can get worse after surgery my surgeon said it's possible I could end up in a wheelchair no guarantees my worry is the feeling of tightness in breathing even though I have had the lungs test and why parts of my bodys feeling is different to other parts numbness the only thing that got better was my mouth ulcers and sensitive teeth x
Hi Clive. It doesn't make sense, does it? Things "shouldn't" get worse after surgery, but I suppose it can do post operatively due to trauma & swelling from the op itself. However, once that settles, you should then find out what's going on & hopefully symptoms stabilise or possibly improve. Bear in mind not all damage is picked up on MRI scanning as it might not be sensitive enough & perhaps alteration in blood flow to the spinal cord might give rise to myelomalacia I.e. permanent damage to the cord. Post op swelling could possibly cause it too, but you wouldn't know unless the mri is repeated post op. It's a really mixed bag as far as symptoms go & although we have myelopathy in common, symptoms are unique to each patient as noone suffers the exact same damage. 😢
Hi Shirley, that is very true I look back at my journey and can't work things out I had gone from going toilet all time to going into retention and bowel problems which I still have ulcerative colitis to deal with ,if I eat big meal and drink to quickly I bloat badly and go into retention everything is to be done slowly , before op I would go from twitching to jerking I'm on baclofen top dose , anyway all the best to you and family for 2019 x
I'm ok thank you - pottering away gently & helping myelopathy.org raise their profile at the British Association of Spinal Surgeons in Brighton back in April, then they had their official charity launch in London at the beginning of May.
I'm so sorry to hear that you are having more difficulties. That sucks. I hope the Walton can help you out on that front.
Keep me posted how you're getting on.
Hi Shirley, did you find anything new at the Brighton conference , I know that everyone as a different journey ,I used to speak to a person who like me had a slow onset cervical myelopathy he was a ambulance driver who had a fall over time got worse because it wasn't picked up he ended up being cared for he's totally paralyzed now and found it hard to accept that it should have been found earlier he had acdf c4c5 but got worse after op I told about my issues about getting out of breath easily bowels and bladder problems he said all connected I said breathing yes told him it wasn't till later when he had a cardiac arrest . So really it's hard for them to say I suppose . When I go Walton I will see what they say about c,3 c6,7
I haven't heard form Traypod recently - unless they are on the FaceBook Myelopathy Support page under a different name.
Re the Brighton conference - as with the joint conference last year in September in London between The Society of British Neurological Surgeons sbns.org.uk/ and the Association of British Neurologists theabn.org/ which was our first foray as an exhibitor stand for myelopathy.org the welcome was amaxzing. The feedback we received was excellent - folk seemed genuinely pleased that we were there & there was finally somewhere to refer their patients to for more support.
What was interesting is one of the surgeons was emphatic that too many folk are being left too disabled as a result & that we with myelopathy should be treated as urgently as someone with a suspected brain tumour to avoid permanent nerve damage.
Very soon, there will be some more information coming out about the myelopathy.org charity launch back in May 7 I will post it as soon as I have received a link. I gave a speech reflecting the patients point of view, so you may well get o hear my dulcet tones lol.
Take care for now