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One Year Post NASAH Follow up Tests?


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Hi everyone.  It's a little over one year from my NASAH.  I have good days and bad days but I mostly keep busy and try not to think of the little symptoms I still have.  Everyone thinks after one year you are fine but I will always have these things they can't see (constant ringing in ears, metallic taste in mouth, headaches, exhaustion at times, etc.   I will be going to my Neurologist in a couple of weeks and I'm curious what if any tests have most of you had at the one year mark? 

 

Thank you!  Stay well!

Katy

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Hi Katy

I was discharged from the hospital about 3 months after my nasah. I had had an early MRI to rule out any further problems to enable me to go on  a pre booked holiday. That was the last test I had.

 

I was referred to a neuro-psychologist about 9 months later and started seeing her  about 15 months after the bleed. Very late, but the original  referral had been lost. I have been seeing her since (nearly a year now) and her input has been invaluable. I had a lot of testing done to see if I had any cognitive deficiencies (some but minor) and assistance with occupational health at work. 

 

I still suffer from fatigue when I do too much  but the headaches have subsided. My memory is never going to be the same, I just need to accept that, but I'm here and that deserves a celebration in itself!

 

Good luck in your appointment, keep us posted 

 

Clare xx

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Not had any contact or follow up since 18  months into SAH and that was just an MRI -no follow up after.  Basically set adrift after that - nearly 11 years since SAH and never been invited for another MRI or consultation!

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Hi Katy,

I had SAH 3 years ago, I had follow up MRI after 6 months and spoke to the Professor who did my coiling, then I went for another MRI just after my 2 years, got a phone call from his secretary to tell me, he didn't need to see me again and as all was fine with the scan he was discharging me.

She did say if I had any concerns at anytime about my head that I could ring her and an appointment would be made immediately for me to see him.

It was a bit of a double edge sword feeling for me, happy that all was ok, then concern that I felt like no one was looking after my head anymore.

It felt a bit strange.

 

Hope all goes well with your appointment

Love 

Michelle xx 

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  • 2 weeks later...

Hi,

I am a year and 3/4 post my NASAH.  I have had 6 monthly MRI scans to keep an eye on an area of my brain which is showing "high signalling".  They say they don't know why it is showing that, perhaps it has been there all my life.  

 

I still have headaches at the back of my head where I felt the pain during my bleed and also a pain behind the right ear which as someone perfectly mentioned, a feeling "like brain freeze".  

The neurosurgeon does not think any of this worrying or a problem and he can't say if this is due to bleed.  

 

They are virtual saying they are not and saying it could be my neck.  I never had headaches before so know that this is only since my haemorrhage.  

 

Just last week I got clearance to have a full year free from my brain MRI scans.  

I am pleased with not having to go back for a year and I realise I am really rather well, but I am not always happy with the response regarding my headaches and my struggles with finding words when I am anxious. If nothing can be found, age is brought into it.  

 

I went to my appointment with a headache and pushed directly on the spot but was told it could be neck and stress.  I also mentioned that I get headaches when the weather is rainy or air pressure change and again felt rather silly.  

 

Still I have seen my advancement and very happy and grateful so I can't complain and what progress to have a year free from my hospital visits.

Does anyone else have any of these issues?

 

Irene

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18 hours ago, Irene said:

 I also mentioned that I get headaches when the weather is rainy or air pressure change and again felt rather silly.  

 

 

Hi Irene

 

There are a few of us on here that get this and we refer to it as our Barometer Heads - unfortunately it does seem to be an after affect of SAH and can really be quite painful, so please don't feel silly about it - or anything else for that matter.  We have been through a very scary thing and unless you have experienced it (there is no text book that can explain it) you don't know what its like, only us,  just us!!

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  • Skippy changed the title to One Year Post NASAH Follow up Tests?

Hi Sami,

 

Thanks for your response to my message earlier in June.  It is so good to have others who understand, as I type this now I have the ache at the back of the head and as one person has said in a letter on this site, a "brain freeze" type headache behind my right ear.  I am not dreaming or imagining it, but just accept it.  I wish the consultants, etc would listen and at least accept that it is there post haemorrhage as I am sure others who go to their clinics must have similar issues.  I had no post hospital instructions or information regarding the bleed and just found out from other hospital websites some of the after issues.

 

When I mentioned something on the internet to the consultant, he rolled his eyes when I mentioned reading up information on the internet.  If I was brave enough I would have said, "i wouldn't have needed to look if I had information at hand to understand I would feel like, this, that or the other.  

Never-mind, that time has past and we deal with what we have to, but I feel better knowing everyone here is so supportive.

 

Irene

 

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  • 3 weeks later...

Hi Irene. Like you I never had a headache before my NASAH (at 47, 6 months ago) but now I have them regulary, almost always at the back of my head an down to the neck (where I felt my stroke). I've talked to my friend who is physiotherapist and he said almost all brain issues cause neck problems later on. I feel these two things are related.

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  • 2 weeks later...

Hi Matjaz,

I haven't been online for awhile and just checked in today and found your reply.  I was really interested to read what your friend said regarding the headaches.  

 

Just recently I was in with my mother who was having some physiotherapy done after a hip replacement and at the end of the session the physiotherapist turned to me and said, "if you book in with me I could sort out your neck and headaches".

 You could have blown me over!

 

 I asked her how did she know I was having problems.  I booked in with her two weeks ago and it was then she told me that it was the way my head was positioned and the way I was rubbing the back of my neck at the base of my skull that alerted her to my situation.  I have been given sets of exercises to concentrate on adjusting my upper neck and hopefully we will get it aligned.  

I was a dental nurse for most of my life and I realise that the position I have had to hold my head over that time probably has not helped, but I never had lots of pain, it has only manifested after the bleed, and when I am anxious, stressed, or concentrate too hard it must affect upper neck which in turn creates the headaches.

 

 She has explained the artery going up into the brain and if it is deviated it could restrict blood flow etc causing a number of issues.  

I am pleased she noticed as I think I may have carried on just accepting it.  I am correcting some bad habits and aware of my posture now so I will keep up the exercises and make some changes in the position of my head.  It is fascinating stuff just hearing how one thing can tip the balance, certainly though  the headaches came post bleed and in a whole area and in the exact area where I felt the trickling of blood over the surface of the right back of my head into my neck causing intense pain in seconds.

 

I am still having MRI scans on, I thought it was going to be yearly but have since been told it is still 6 monthly as they found an area showing up on the scan which is not meant to be there, but it is nothing sinister, has nothing to do with the bleed and which they think I have had since birth, a possible hamartoma , which is a collection of some sort of tissue, so the neuroradiologist thinks.  

 

They are not going to investigate it, they are just monitoring it.  I am not worried about it as the neurosurgeon isn't worried.  

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