pain in the neck (literally)

[janevo]

Hi, over the last few days the back of my neck has been painful and my head feels heavy. Can't seem to get comfy. Got my 3 month check up with neuro nurse 2morrow but wondered if anyone else had experienced this.

[Mace]

Hi, yes I have this too although it feels like pure tension, with my neck and shoulders painful and "seizing up". I told my GP about this (still haven't received a neuro follow up appointment...) and he said it was very likely to be caused by tension. Even though I have been off work since mid-June he says my body will be tense due to the major assault on it.

Hope that helps, but I would definitely mention it to the neuro nurses tomorrow as much depends on where you have your particular pain in the neck!

Good luck,

Mace x

[janevo]

thanks mace. I will mention it 2morrow - hope you get your app soon as don't know about you but it's only now that I'm up to asking questions. My hubby won't talk about what happened, he thinks that I'm back to normal now and should get on with looking after him and my daughter is still having flashbacks as she was the one who found me so I can't talk to her as she gets upset. I know I should be happy to be here but I still want to know what happened in those few weeks. Sorry to moan - having a blue day!

[Karen]

Hi Jan,

Yep, I had it for a long time. My head often felt too heavy for my neck to support. I suffered a lot of neck, back and leg pain after the SAH, I was told that it was the remnants of the blood draining and irritating the nerve endings down the spinal column and that this process can take up to 3 months.

Would check with your Specialist Nurse tomorrow and pose the question. They might be able to prescribe you something to help with the pain. If you haven't already got one, think about buying a V pillow ... it helps to support your neck and head and really useful if you're sitting on the sofa etc.

Good luck, I'm sure that everything will be alright! xx

[janevo]

Thanks for the advice karen, I've got a V pillow so will dig it out.

[Karen]

Jan,

I've not met one SAH'er that was back to normal at 3 months! The medics normally put a recovery time from the fall out of the bleed/surgery itself of 3-6 months at the earliest as a guide. However, there are normally a lot of other factors both physical and mental from the consequences of the haemorrhage/surgery that are ongoing for many years later and that need to be dealt with.

Think that you may need to sit your Husband down and have a chat with him. (By the way, my Husband was the same!) Hope that he's going to the appointment with you tomorrow, as it may help him to realise that 3 months is very early in terms of recovery and you won't be "over it" at this stage and you will need as much support and help as possible over the coming months.

Good luck Jan...xx

[Mace]

Thanks from me also Karen. It is three months approx. since my SAH and I think my employers are very disappointed that I have just been signed off work for a further month - they are used to me wearing my underpants on the outside of my trousers (and so am I to be honest) LOL

[Louise]

Hiya, possibly because you have a check up tomorrow,

Im with Karen sit your husband down & yes take him with you tomorrow, I know they have this 3-6mths but reality it is a lot longer....

How old is your daughter?

good luck for tomorrow not that you'll need it, been there nothing to it....

[Karen]

Hi Mace,

Glad that it's helped! To be honest and looking back at my own recovery and many others, 3 months is a ridiculous time scale to put on recovery and being expected to go back to work. I was told that it takes up to 3 months for the blood to fully drain from the brain and that this would be likely to still show up in a lumbar puncture.

Obviously, it also depends on the severity of bleed, the type of surgery and any complications or deficits that you are left with, if you also stroked or where the bleed was and what artery was affected and if the brain has been damaged and all that it entails. There are a huge amount of different deficits, both physical and mental .... coming to terms and adapting to life post SAH has been the toughest journey that I've had to make.

I tried to go back to work at 3 months (due to pressure, as I was self employed and sub contracted + money was tight) and only lasted 2 hours ... I took the medics at their word literally with the 3 month thing, but knew in my heart or my gut instinct that it was the wrong thing to do.

All I can say, is that you have to play things by ear and with what you're comfortable with at the time .... only you, will know what you're capable of managing at that point. It doesn't mean to say that it won't happen eventually and we all have to push ourselves now and again, to find out what we're capable of, but if I had been given a more reasonable or realistic time scale from the medics, I wouldn't have been quite so hard on myself... xx

[Lin-lin]

I agree with the inaccuracy of the 3-6 month timescale. I have no idea who came up with this in the first place, but I was told I'd be fine within 3-6 months, but I was not.

In fact, it was a timescale which contributed towards my depression early Summer, because six months had passed and I was not the same. I misinterpreted this as a 'failure' on my part. I thought I was doing something wrong.

We are entitled to take recovery at our own pace and it's vital that we do. My consultant says that recovery can take up to two years and even then I may not be exactly the same as before. Those around me simply have to accept that I can only recover at my rate and not in accordance with their expectations. I feel that I have become more assertive about this in recent months.

I used to get neck pain too. I felt as if a muscle had been pulled, running from the neck to the top of the head. It felt like a tendon had been shortened and moving my head forward was over stretching it. The pain has gone now.

Good luck with the appointment. Be sure to mention the neck pain.

Lynne xx

[Janet]

I found the first year really hard and my head also felt too heavy for my head a lot of the time. Good news iis it does improve with time and only get really painful neck and fatigue if I overdo things. Good luck with your appointment tomorrow and make a list of all the questions you want to ask.

[tracy]

Hi to all

I to have problems with my head feeling to heavy for my shoulders, which makes my neck hurt. It was actually worrying me a bit but im not at 3 month yet so I suppose im going to feel these strange things.

My husband is the same, thinks things are back to normal as I look the same and trying to do things I did before. I have to keep reminding him im still not right yet inside.

Tracy S

[Karen]

Life does get better guys! ... and yes, I think that the 3 -6 month time scale for many of us, is one that is not realistic and I would personally like to meet the person or persons that set it and put them right!

Lynne, you're right and mentally it can send you into depression or think that you're being lazy and a failure... it makes you question what you're achieving at that moment in time. When you have a partner, that isn't going through this and they've been told the same as you, then it's doubly hard ... it's not their fault is it? .. but, only you know, how you're coping.

When I was in the early stages of recovery, My Dad mentioned that a friend's daughter had the same and that it would take 2 years to reach an even...ish sort of keel .... At the time, I didn't want to know, but the words stayed with me and it was definitely true in my case and a much more realistic time scale. Just wish that the medics had told me the same ... whether I would have listened or not, who knows? .. as I've always been a person that kicks against the grain and like most on here, will push myself and drive forward...

[KelBel]

Hi Jan,

I am 9 months post-sah now and I definitely suffered from neck pain for at least the first 4 months. It did then start to get better.

At my follow-up appointment I was told it was nothing to do with the aneurysm...but the letter sent to my GP from the consultant I had seen explained that it could be the draining of blood which can last up to 6 months... and my GP had said it was most likely anxiety that was causing the neck pain poss a bit of both maybe?

I tend to get a bit of neck pain if I have over-done things a little and am getting tired.

Symptoms do get better with time.

Good luck with your appointment tomorrow. Write all the questions down that you want to ask and tyr to make notes whilst you're in there (or get someone to take notes for you) as it can be difficult to remember it all

Kel x