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  3. carolann

    Thanks for being here

    Ya it hurts - so my chiropractor said it’s a nerve pinched from when I hit my head. I think it sounds right and it’s not as bad as it was. I’m trying not to take pain reliever but just now had to because my ear started hurting again. I guess that’s why I think it’s a nerve pinch because the pain is in weird places and comes and goes. Still trying to get referral to neurosurgeon. But I do feel improved.
  4. Last week
  5. Pat, have a shunt as well and I found I had almost no sensation around it to the touch of the skin for a good while after it was placed. Once the initial scar healed it was totally numb but then as it started to regain some sensation in that area of my scalp I found it was tender and also had some vey strange sensations, like a creeping feeling sometimes and it also felt tight. That combined with being able to hear the mechanics of it , being barometrically sensitive and the tube sometimes aching means I don’t ever totally forget I have it ( I had mine placed 6 yrs ago) but equally I’m very grateful I have it. If you have pain, or sensations that are changes to previous or increasing for you and you are worried you should always get checked out. Any hospital will take it very seriously indeed as a shunt malfunction is not to be ignored but I’m sure this is not that. Main things is to educate yourself what a shunt malfunction would show up like; in extreme cases it is increasing dizziness, imbalance, eyesight deteriorating , vomiting. Other things to keep check of is make sure is no swelling around any of the pipe or shunt site and no redness or discolouration.
  6. Jan

    Acupuncture

    Clare, Thank you, I will try again, I was actually told that there was only a nurse specialist for patients with cancer!!! Odd? Yes. There was a neuro nurse specialist when I was discharged 3 years ago I will try again, Thank you. Jan xx
  7. ClareM

    Acupuncture

    Jan a consultants secretary has no right to tell you you can’t speak to a nurse specialist. You should be able to access one through the outpatients department. Or just try asking for the neuro nurse specialist through the switchboard. They will be able to give you the definitive answer so try again. Hope you get an answer. Clare xx
  8. Jan

    Acupuncture

    Tinaw, I think our posts crossed! Thank you for your reply, That helps to put my mind at ease 🙂
  9. Jan

    Acupuncture

    SM, Thank you, I have tried to phone my physio this afternoon but can’t get hold of her yet, she is aware that I’ve had a SAH so I’m sort of assuming from that it must be ok, To be honest, I think that because it’s something totally new to me I’m being over cautious. I was ok until I read the leaflet she gave me and this sentence jumped out at me . . . . . . Research shows that acupuncture stimulates the brain to produce natural pain relieving chemicals - Endorphins............... It’s the ‘stimulates the brain’ bit that had me worried. I am just being a great big Wuss!! Jess, I was treated by Mr Tzerakis ( Not mis spelt, I just checked)!!! John and my sons referred (& still do!) to him as Dr Nik, much easier!!! Jan xx
  10. Tinaw

    Acupuncture

    Hi, I specifically asked my consultant about this as I have found acupuncture really helpful in the past. She said it would be perfectly safe. Since then I forgot about it, so I never actually went to my physiotherapist to have it, though.
  11. Louise

    Feeling down

    Hiya Sorry to hear that I agree if your worried see your GP re headaches its more than likely stress.. Appeal it then, Id go to CAB (Citizens advice) I've found them really helpful they know who to contact and what you should get and do next. Don't just think oh well that's that because I reckon when they refuse its to put you off CAB aren't like that well not that I've found, and I've had a few visits to them. I'm sure I read on the Headway site that they were trying to educate the DWP about head injuries.
  12. Chelle C

    Feeling down

    Hi Ian, Sorry to hear you are having a rough time at the moment, did the DWP give a reason for stopping your ESA, If I were you I would go and speak to either Citizens Advice Bureau or if your local council have a Welfare Rights person you could maybe speak to them, I have used them in the past and have always found them very helpful. You maybe entitled to a Mandatory Reconsideration ( which means they look at your claim again ) if they don't change their decision then you are entitled to appeal, i think I have got that right, if not then I'm sure someone will put you right on that bit. Don't leave it to long though as you only have a certain length of time in which to do it. I really hope this helps, the headaches you are experiencing are probably stress related, had a similar experience myself very recently and that was to do with DWP. As always if you are worried about headaches speak to your GP. Hope you get things sorted out and things start looking better for you. Take care Love Michelle xx
  13. jess

    Acupuncture

    Jan I was told I could have it but not sure if it is safe who treated you at stoke I had Mr Dias he has gone private now xxx
  14. Catwoman23

    Acupuncture

    I don’t know much about it but many many patients swear it s very helpful but they don’t have SAH. They do it for rotator cuff, back pain, fibromyalgia, lupus, rheumatoid arthritis etc. some even come off pain meds which I m not complaining. Most insurances don’t cover it here so some even pay a fee upfront. 500$ for ten sessions I m told. Many clinics in big cities where Chinatown is. I just tell them it s ok as long as they take meds for lupus etc. Patients just seem to be upset that I look Asian and don’t know much about it. I think it has very few side effects .
  15. Skippy

    Acupuncture

    Sis - do not Google - it is not your best friend. Do as Super suggests and if they are unsure, then unfortunately you'll have to wait to speak to your guy.
  16. Super Mario

    Acupuncture

    Just a thought, have you asked the acupuncturist you are thinking of going to for their opinion? They may be able to give an indication, well a good one would anyway. Ethically they would not treat anyone who would be at risk. What opinion does your physio have?
  17. Jan

    Acupuncture

    Hi Sis Thank you for your quick reply and advice. I have just spoken to my consultant s secretary ( my consultant/ surgeon is on annual leave) I explained what I wanted to ask and asked if I could perhaps talk to another consultant or nurse specialist? Short answer was NO . . Advised to ring my GP which would be a waste of time as they won’t answer anything without speaking to N. Staffs hospital first 😡. Back to Dr. Google!! xx
  18. Skippy

    Acupuncture

    Hey Sis My daughter sees a chiropractor regularly and has acupuncture - she loves it and finds it really helps with her treatment. However, she's not had a SAH. I've never been told not to but I haven't raised the question directly. Can you contact your consultant / specialist to ask??
  19. Have any of you had acupuncture since your SAH? I am currently having physiotherapy for my shoulder pain (rotator cuff damage) My physio has suggested acupuncture as the muscles surrounding my shoulder are so knotted that the manlipulation that she’s doing isn’t relieving the pain. I know that everyone is different regarding pain threshold and how far they will go with a particular treatment etc.I just wondered if anyone has had acupuncture and could share their experience? By the way, I don’t have a fear of needles!! I suppose what I’m really asking ( in typical ‘Jan the Rambler’) fashion is . . . . . iS IT SAFE?? Thank you for reading Jan xx
  20. It's been a bad few days, got a phone call from the dwp saying my esa has been stopped,said I could apply for universal credit but not getting that either as my partner works full time. Headaches have come back with a vengeance now, back up to the same amount of painkillers as when I left hospital. People say I was lucky with my sah, but I don't feel like it right now,not sure what to do next,will it happen again as stress levels and worries increase.
  21. Such wise words from Macca! I think as he says that some of the problem lies in the fact that it is a sudden change, and a huge change. I am 3 years down the line and still trying to accept the new normal. I've had several job changes each throwing me new challenges which probably in hindsight I could have done without. Each job change brings new learning which I struggle with now. Please don't rush back to work, take your time and do it gradually. Hopefully you will have a sympathetic employer and if so take full advantage of what they can offer in support. I wish you all the best, please don't think you are abnormal in your recovery, - what you are experiencing is normal, just take your time. Clare xx
  22. My daughter in law had a shunt and I remember the doctor telling her once that a while after it is inserted the body can adhere to it - as if it is healing around it - so that it sticks and gives a pulling sensation. As usual if there is a problem the advice is to go and see the doctor or the team that put it in.
  23. I have a shunt too, and the weather effects it - only thing I can suggest is if your concerned see your neuro team - if yours is an adjustable one maybe it just needs a tweak.
  24. Hi, I think allowing your family to read some of the threads on here may give them some understanding of what you have been through. There appears to be no such thing as an easy brain injury. Recovery time - even when you make a good one, is notoriously slow in happening. It takes a long time and improvements are slow and happen in their own time, not the one you want them to.! The change happened to you suddenly whereas under normal circumstances, it happens over a period of time and you adjust to it as it happens. In this case, though the changes have happened abruptly and caught you unawares and you are having to deal with them whether you like it or not. Change has happened and you can't turn back the clock. But you can shape your future. That is what is making you emotional and I think we've all gone through that to a greater or lesser degree, so don't beat yourself up about it. It's natural and you are on your own individual journey. All we can do is try to prepare you for some of the things that happen along the way. So try and dry your eyes, take one thing at a time, slow down and do things in your own time. Some things will come back to you, others may come partially and others won't come at all, but what happens then is that you become creative and find another way of doing them. Do things now for yourself, not others. let them look after you for a while. You've earned the right to get better, you survived. Let others give you that chance and you just concentrate on getting better and recognise new or different opportunities when they come your way. Good luck.
  25. I thought I'd never get used to mine but I can hardly feel the tubes now and I pat my shunt for without it I'd still be in cuckoo land. It is good to be back in the land of the living as before the shunt I was lost in my own little world. I never made sense but I don't now, so nothings changed ha ha. Cheer up all who have a shunt we are survivors xxxx A smile please xxxx
  26. My shunt went in Oct 17. I hate it. Sounds like the sea in a seashell. I’m dizzy my headaches from when I sit up and so tired and my walking is wobbly but that could be the SAH. I have a big hollow down my neck behind my right ear and I can feel the tubing. ! Scary
  27. Kat, 4 to 6 weeks is such a bunch of rubbish! My heart goes out to you. I can tell you, for me, the last two weeks, #9 and #10, I have noticed improvement. It gives me hope. Hang in there. Everyone is different, but we will get better. Take care of you! And don't feel guilty about taking the time you need to heal. ❤
  28. K89, two months isn’t much time. This is a long haul. I had my nasah in 2012. Everyone is different it seems, some recover quickly and others (like me) take two steps forward and one back. I can relate to the noise. It is maddening. Mine sounds like an orchestra tuning sometimes. I have found that music helps me to take my mind off it. Some suggest keeping a journal to track your progress and also discover triggers that may cause bad days. Drink plenty of water. Staying well hydrated is important. And keep in touch. Come on here and let us know how you are coming along.
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