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Hi, I am new to this so I apologise if I am not writing in the correct forum. I already have a post in the SAH part. I am a 22 year old non smoking female.

 

Looking for some advice from people who have experienced Permiesencephalic Sah ??

 

I have recently been to A&E for a severe headache, it started off as a bad migraine. I thought nothing of it as I had a cold and thought it was turning into the flu, I could not walk or bare any light I had pins and needles in my left leg and they would often feel weak.  - diagnosis was sinusitis on my left side. However, a consultant noticed something on the CT scan and believe it to be a SAH on my right side.  I have been referred to a neurologist and am waiting for an appointment to become available.

 

I have been left in the dark, so to speak, with regards to what is happening and what will happen when I see the neurologist. It's on my right temporal area and I still get pressure headaches and  sensitivity to light on the odd occasion, I have also become a bit ditsy and forgetful and zone out a lot.

 

If anyone could tell me what to expect, or what could happen I would appreciate it. Would I be put on tablets? Is this very serious? Do I need an op? Can I travel abroad? Can I have a baby? Is this bleeding on the brain or an aneurysm?

 

The letter from hospital stated this word for word, if anyone could shed some light as to what this means?

 

Subtle areas of linear high density are demonstrated in the right temporal parietal region and could represent a small volume of SAH. Extensive inflammatory changes are demonstrated involving the left ethmodial sinus left sphenoid sinus and the maxillary antrum. GP to arrange urgent neurology appointment for SAH

 

My first visit to a&e was on the 19th December, I was given antibiotics for sinusitis.

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I know, its just so hard, they have confirmed a small bleed by ct and then left it as that. im hoping someone else has been through a similar process and can tell me "they did not rush the referral or act quickly as its not as serious or it heals it self in time" im looking into booking a holiday as well and I'm not sure where I stand with that.

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I would get your diagnosis from a professional doctor before you travel if I were you.

 

You will need travel insurance if you are contemplating going abroad, and if you declare your current state, where you do not know what is wrong, then you might not get insurance.  If you get a diagnosis and declare that, then you will get insurance but it will be slightly more expensive than normal insurance with no health problems. If you make a false declaration then any insurance company will refuse to pay out.

 

If you travel without insurance and something happens you will be left to pick up medical bills and the cost of getting you home yourself.  That may place a burden on you but also members of your family.  Do you really want to take that risk?

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Sophie,

 

I know it is unsettling, but until we know more about your diagnosis, it is difficult to provide much advice.  Plus, we are not qualified and cannot give medical advice.  Each instance is different, though similar.  Depending on the details of your bleed, it may be just a "time will heal' thing, or it could require one or more of several medical procedures.  Then, depending on what you go through, the journey to recovery can take a variety of paths.

 

Many on this site have been through difficult journeys and continue to deal with recovery daily.  Others are more lucky, like myself, who after having a NASAH, and then a EVD procedure (drain tube), recovered in about 6 months to mostly being as healthy as before, with just a few small occasional headaches and other occasional lingering effects.

 

I know you will worry until you know more.  Please know that I will pray for your health and your peace.  As you go through this, we will be here for you and offer as much help and support as we can.

 

Chris

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Hi all,

 

Thank you. I know I'm a right pain with all my questions. I'm just confused, worried and slightly annoyed. It has stopped my travel plans.

 

The GP phoned and told me the consultant should of made a internal referral so it has now been passed back to him to make an appointment. I'm starting to lose hope.

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No you are not being a pain with all your questions. It is understandable that you are feeling as you are.

 

We will all support you the best we can and if it means you pouring out your frustrations and worries on here, so be it. Just to have communication with people who can understand how you are feeling will help.

 

Pleased that common sense has prevailed about your travel plans, disappointing as that may be, it is much better to be safe than sorry. You should be able to travel once you have some definite answers, although possibly not in the immediate future

 

Hoping your appointment will come through soon.

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Don't you dare stop asking questions.  This is so important, that you get the answers you both need and deserve. 

 

If they want to stop you asking questions, then they need to give you the answers to them.

 

That's the best and only acceptable way and that's the way you should think about it.

 

Macca

 

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Hi again Sophie,

 

I continue to be astounded at the way in which this has all been dealt with. You have every right to be annoyed - I think we all are.  I and many others on here posted on your other thread our dismay that the consultant didn't refer you straight to a neuro unit.  

 

This is not a bruise on your little finger we're talking about, he saw something that made him think it could be a sah - a bleed on the brain as you know.  If a neuro specialist thought the same, I feel sure they would have either performed an MRI scan or an angiogram which gives a clearer picture of what has caused the bleed.

 

I had an angiogram after my ct scan and that's how they discovered it was an aneurysm in my case that had ruptured.  With aneurysms that have leaked or ruptured they would usually, if they can, either put coils in it or clip it with a view to stopping it bleeding again. Each case is individually assessed.

 

Personally I think whilst ct scans can spot the blood, it's possibly not always clear enough to determine whether it's a sah with or without an aneurysm being the cause.  If the neuro experts were also to determine it could be a sah, I feel sure they would investigate it further, plus they would look out for other possible complications.

 

 It appears they now realise their mistake in not referring you straight from your first trip to A&E, which given the delays with Christmas, New Year etc and now having to wait for that incompetent consultant to make a referral.....well it's just not acceptable as it may be a few more days for you to worry.  

 

I really don't know what to suggest now, but I know the Brain and Spine foundation have a free helpline run by neuro nurses -maybe you could ring them if you want to chat to someone with more knowledge than us before your appointment comes through. The number is on their website.

Sarah

 

 

 

 

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Hi all, - just an update.

 

I really appreciate your support, I feel like it has reassured me and helped me to understand and settle alot easier, I have had a phone call today from a bookings secretary who says she has not had anything come through and my GP should refer me as that's what was requested by the consultant.

 

So I phoned my GP and they said that's not the procedure anymore, if the consultant is aware I need a referral he should have made an internal one as it makes no sense to be passed from a consultant to the GP to be referred back to the consultant.. So I managed to phone the consultant's secretary as the GP gave me her number and I received this email..

 

Good afternoon,

 

Thank you for your email.

 

I have spoken to Dr Timperley’s secretary, who is aware of the situation, and has been in contact with your GP practice.  She has printed off the discharge summary for Dr Timperley to review, along with the information from your GP, and will ask him to look into the matter when he is out of clinic.  She will be able to contact you to offer some further advice when this has been done.

 

I am sorry that I am not able to offer you the information you need at this time but please rest assured that Dr Timperley will be able to offer further advice once he has had the opportunity to review the information.

 

Kind regards,

 

So its just a waiting game as I am sure he is a busy man and will not get time to read it for a while.

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Hi Sophie 

 

Glad to hear you have your appointment tomorrow. Hope you are feeling better.

As Irene said, you are in with the right team now so hopefully from now on in it will all be a little less confusing and worrying. Good luck and best wishes. X

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I've only just caught up with this great news.  About time after all the unneccessary hassle you have been through to get it.

 

I hope all goes well at your appointment today and look forward to hearing how it went.

 

We're always here for further support if needed, take care,

Sarah

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