I hallo have clawed hand and arms jerk and move where they want but as long as my daughter Is there it's great going in our pool helps a lot and I'm 40 by the was was 39 when diagnosed but I still enjoy my time with him as u with urs
Hi im from Glasgow! I'm just newly diagnosed but so glad to see someone nearby who also has chiari. R u at the southern/qeuh?
Thanks Helen, you give me hope and enthusiasm!
I'll be the nanny storyteller and mischief maker that's for sure.
Haha yes for sure Julia.
The boys asked there mum for a game once and she told them no! She overheard them whisper to each other - ask nana she will ', got me wrapped round there little fingers lol
We still have our uses.
I have just been to see my chiari nurse today as I'm getting awful tintinus and tight head ache, my jaw and face feel bit weird too. Seeing consultant and discuss if need scan as not had one since before op.
Thank you for your input.
Luckily I have my mom taking care of me for the 2 wks after surgery. My kids are old enough to help out now. Hopefully that doesn't change after I come home lol. Just nervous my surgery is coming up.
Thank you for your response. Just a Lil eager to get this surgery done. I have the best support system my family, friends, co- workers. They all say I have to take care of myself and not worry about everybody else. It's me time... it's been stressful to my daughter being due in Aug... I'm hoping I can heal quickly but you never know what can happened. Everyday I think about my surgery coming up and get mixed emotions.
I will get through this.
Thank you for your kind words. I have gone shopping for my fluffy slippers and comfortable pj's. My oldest children understand and want me to recover quickly.
I just need to get well soon so I can be there when my granddaughter is born. I know I won't be able to lift and hold my baby for long. Just waiting for the day and put all this behind me. I'm not looking forward to the pain.
Thank you.
I will take advantage of someone else taking care of me for once.
I will have to learn patience lol...
Counting down the days.
Thank You for your input.
I will surely take it easy. Just not looking forward to the pain. As for now they have me of work for 2 months.
I can't wait to get the surgery out of the way. I want to feel normal again. I forgot how that is. Just thankful that my job has been understanding on my symptoms ...
I expect you'll be sent for another mri, maybe you have a little fluid build up that they can sort out. I'm trying to drink veg juices to reduce fluid build up and also to lose some weight as I'm sure being so fat isn't helping things.
It might be reassuring for you to have a scan to rule out the obvious worries. The head tightness is horrible. I often find that when I get that I subconsciously clench my jaw which leads to aching face etc. I hope they get it sorted for you Helen x
Yes I'm wandering if I'm clenching my teeth sleeping , but as you say may be bit of a leak. I'm usually really positive and try to look on the bright side but found myself getting upset when i was speaking to the nurse! Didn't know where that came from!
I was explaining about the situation with the bulging disc and bursitis, bladder prolapse ect... Must have all got bit too much.
I'm trying to keep active to stop weight creeping up, but it's hard. Still managing my few hrs as domestic at the hospital but some times I really struggle. Will see what consultant says Julia and let you know. X
I think I know why you got upset. We try, as mums, wives, grannies to be the strong ones and don't let people see what's really happening or we feel like we're always moaning about aches and pains. I think you use humour to mask your feelings like I do. Occasionally, when I'm seeing someone I don't know well like a phisio for my hand splints they ask about my problems and I burst into tears! Then all this stuff I've been holding back comes blurting out. I feel embarrased afterwards.
My weight is out of control. I stopped smoking two years ago and although I feel better for it am now about three stones over what I should be. Trouble is when everything hurts it's hard to exercise, then I'll sit around eating because I'm so bored with everything (hence why I'm always on this computer). Never mind, I'm going to get the dogs out now and walk off some calories xx
Yes your spot on Julia. I must admit when I have walked a bit I do feel better, I used to have a border collie for 16 yrs, but was so upset after he died I couldn't have another just yet. But best thing in the world to get you off the couch, and we'll done for packing in smoking I know it's not easy. And it's so easy to munch all day, if I don't keep myself occupied I'm the same. X
Gem, I promise you, its better to get more months each one each different, but Mr FLINT is the UK no 1 chiari specialist, ideally you should not go back to work that early even though outside (stitches, hair) look ok, but inside underneath the skull it could be still raw/not recovering yet, so if I were you, hold your fire..wait how you are getting on, I am on my 6th weeks, but still take it easy..not even hovering nor shopping...just dusting and cooking a small meal
All the best for Tuesday Gemini, we'll all be thinking of you. I know it'll be a few weeks before you're back on here but pop in asap to let us know how things went. Fill your thoughts with having the summer months off work and relaxing and before you realise, you'll be back home again and on the mend xx
Hi,
I was a patient of Dr Mathieson at the QEUH/southern, in the Neurological department. I was in hospital 2 weeks before my Decompresion Surgery on Jan 18th 2016, and stayed 10 days after my surgery. I was ready to go home to my own bed and fiancĂ©. It was a rough 3mths before I started to make real progress, but then had a setback and had to be admitted to QEUH again, I collapsed (I have an Adrenal problem too, caught infection but it floored me (literallyđ€). Made some more progress and then a further set back, admitted to get pain under control, another week in hospital. But 5 and half months on , I'm back at work which has helped me mentally make even more progress.
I hope you are doing well also.
It's so strange that when my first diagnosis happened sept'15 I felt like I was on my own and that no one could possibly feel how I feel or understand that I might look ok on the outside but feeling like I'm dying on the inside.
As much as I would never wish this illness on anyone, it's also comforting to know that there are people who do understand.
If you feel like talking don't hesitate to get in touch.As hard as it seems, try to stay positive, are you booked for surgery?