Help off people who’s aneurysm did not burst. But had coils fitted

[Peppy2]

I’m having headaches every morning on waking up top of head side of head and back of neck All just on one side. Pain behind one eye when reading. Goes after taking ibuprofen and paracetamol. But comes back four hours later. Also when I cough or bend forward hurts the top of my head???im worried sick. Going back to doctors tomorrow. I rang the ward I was in at hospital to try and speak to the person who did the coils. But the sister said my doctors will have to refer me back to him. Please let me no your experiences. Thanks so much.

[tillymint16]

Oh flippin heck good luck for a speedy referral Peppy. If you were really worried you could just go to hospital (know that’s a bit frightening!) but they could prob do a CT or MRI for you without having all the wait time!!! Let me know how you get on

Regards Andrea

[Peppy2 in reply to tillymint16]

That’s what I will do. If I can’t bare them no more. See what gp says today.

[tillymint16 in reply to Peppy2]

Hi Peppy

How did you get on at the docs hope you’ve got this thing sorted and your mind has been put at rest or the pain is easing😌xx

[Peppy2 in reply to tillymint16]

Hi. My doctor said (the pain) can’t be from the aneurysm as it’s over a week !!!!!!!! So headaches should have stopped. I couldn’t believe it. So I’m stuck with no answers and just taking painkillers. I rang hospital before I went to gp. They said gp has to refer me back. Well if gp thinks it’s not the operation/coiling I’m buggered. When I bend down I’ve a strange feeling in my head slight pain like u would if you have sinus problems. I got intouch with head way. They have sent me a lot of information. Also the lady I spoke to said what I’m suffering is normal. I’m so confused to where I go from her because I’m literally in so much pain at times the painkillers take the edge off. But I don’t want to take them as much xx

[tillymint16 in reply to Peppy2]

Hi Peppy

In my own personal experience of anerysms and my PKD I don’t think the GP’s really know all the facts but the people who have had this procedure do! Although non invasive you’ve still had brain surgery and there will be bruising that does take a while to go. Let the doctor refer you back. All this pain your having did you have non of it before the procedure! It couldnt be related to the car accident.

I guess you know your own body best but hang on in there as they say the headaches to last a bit afterwards... could you have caught one of the many bugs around.. I don’t suffer headaches!! But just had a horrible virus where I was popping the painkillers like smarties for the headaches! Let me know how you go ! Xx

[Peppy2 in reply to tillymint16]

Doctors not refer me back. She said this pain isn’t my coiling. Yet this typ of pain I’ve never had before She thinks it’s sinus 😳 r a nipped nerve in back of my neck !!I’m going to ride it out for another week if still in pain I’m going to just go to hospital. No this pain is different to my normal headaches. And the crash was Sep of last year don’t think it’s that x

[tillymint16 in reply to Peppy2]

Really weird and I guess it’s possible to have a trapped nerve.. strange!

If you’ve got this bug it should pass in a week or so... we’ve been so bad can’t remember feeling so rough though I’m on the mend now my hubbys terrible today

Yep I’d just go to hospital if it’s doesnt ease👍🏻Just hope it all settles down for you🙄let me know how you go xx

[Peppy2 in reply to tillymint16]

Aww hope you and ya hubby gets better soon. I think my doctors just doesn’t no enough about anrysms as before I had the opp she used to say. Sorry Karen I don’t no much of anrysm it’s not in my field!!!

[tillymint16 in reply to Peppy2]

Aww thanks he’s staying on the couch today but I’m much better👍🏻Having been going through this anerysm thing for the last few years.. we’ve moved about quite a bit up and down the country and therefore got a few different opinions from different GP’s 😌believe me their knowledge is minimal re this condition. I was diagnosed with a hereditary kidney disease 48 years ago and not at any point did any GP warn me that brain anerysms can be linked to it. Only when in 2013 went to a kidney specialist who referred me for an MRI.... I would never know!!! They are only a ‘general’ practitioner!

In my experience you have to do all the finding out yourself!!!

I reckon I could do my coiling myself I’ve read so much about it!!! My friend said she’s good with a needle and cotton! My husband was in the ambulance service and isn’t phased by much and my other friend was a nurse 30 years ago and said she’ll wear her uniform if she can find it!!

I know you gotta be in ICU for a night but it’s quiet round here so it’l be ok!!!!! 👍🏻Xx

[Peppy2 in reply to tillymint16]

If only. We could do it are self. Ha. You should ring headway’s they are sent me so much info. Where abouts are you from now. I’m in Newcastle upon Tyne

[tillymint16 in reply to Peppy2]

We’re now in Cheshire but have moved around a bit and about to move again to do a big downsize to do some house sitting/traveling. Retired in 2013 so trying to find our level... originally from Liverpool!

May give Headway a call but to be honest Ive read that much since I found out must have covered most things. It’s more speaking to someone who’s actually had it done.. I’m terrified! And even have to have diazepam for a blood test to calm me down!! Not a wimp normally but medical things I’m a jelly!!!! Xx

[Peppy2 in reply to tillymint16]

Well hope you find the place for u. I nowhat you mean being terrified. I was the same. But as soon as you go to the hospital everything happens so fast. They don’t give you time to think. Get in get blood pressure ect done. Gown on stockings measured and put on. Next thing your walking down to be operated on. You get on bed. Then the injection your now off to sleep. Wake up in my case bad head very sore throat. But u have sombody sitting right next to you. Who give me pain relief right away. They keep checking you talking about silly things. By then your thinking yes it’s done I no who I am I can talk I can remember everybody. I had a fear of not being able to do all this. Then after that u are so tired you sleep on and off. Honestly it was not as bad as I thought at all. But I will not lie to you I was not expecting sore throat and as big of a headache/pain. It’s being home I’ve had trouble with what you have read xx

[tillymint16 in reply to Peppy2]

I guess you feel like exchanged one worry for another but it still must be a great relief... can’t believe that catheter goes from groin to brain and back again.. eek it freaks me out!!! But glad that you say it wasn’t as bad as you thought... just got to get the pain sorted out now... still gotta be very proud of yourself😌👍🏻Xx

[Peppy2 in reply to tillymint16]

Hi just got back from hospital. The pain got that bad I couldn’t cope with it. Anyway they done cat scan. No bleed but all my sinuses r infected. Also the muscle at the base of my head has been damaged. Which hAs course most of the pain. So I’ve antibiotic for ten days and morphine to take four times a day. So I’m feeling very poorly but very happy there is no bleed and coil is fine 😁

[tillymint16 in reply to Peppy2]

Ah Peppy

So sorry you’ve got this extra problem but thank GOD it’s not a bleed you must be so relieved even though you really rough! Was it the accident that caused the damage.. you’ll take time to heal but so glad it’s not anything else👍🏻👍🏻Take very good care of yourself xxxxx

[Peppy2 in reply to tillymint16]

It’s like a huge relief and like it’s just hit me that the coil worked I think it’s coz they have checked it. That it’s made me some how just realise I’m going to be ok. And no they think it’s happened during the operation as I had neck pain right away. But I can deal with that no I no I’m safe. Xx

[tillymint16 in reply to Peppy2]

How weird it’s unfortunate but knowing your safe must mean the world to you🤗you’ll heal and at least your mind is peaceful... youve defo given me inspiration and reassurance even though you’ve had a blip. Keep taking the tablets!!! and take good care of yourself xxxx

[tillymint16 in reply to Peppy2]

Hiya Peppy

Just thought about you today and wondered how your getting along hopefully feeling better after your ordeal and hopefully the tablets are working!!!

Andrea xx

[Peppy2 in reply to tillymint16]

I wish I had good new. But no. No better. Had to stop taking morphine was making me be sick so only painkillers that take edge off things. Just to let u no. I’ve been told if u have an aneurysm you can’t take inbuprofen. Thanks for your msg xx

[tillymint16 in reply to Peppy2]

Hiya Peppy

What a pain for you and sorry you’ve not improved much I guess it’l take more time for sinuses to heal and there’s so many bugs still lurching about. Are you still going to get a referral back to surgeon? Guess it’ll all settle down in time. I can’t take those painkillers anyway because of my kidneys or anything else anti inflammatory. Really hope you start to make a good recovery xx

[Peppy2 in reply to tillymint16]

Won’t refer me back becti saw a trainee neurologist when I was at the hospital the other day she said she looked at the cat scan and my coil ect looked fine! I’m going to wait until next week to see my gp. I think I’m just unlucky to be honest and hope soon it will all go away. X

[tillymint16 in reply to Peppy2]

God you must be fed up but think you should still be referred as it was only since your coiling you’ve had a prob!! Sometimes you’ve gotta nag them and don’t settle for their explaination... your in pain and shouldn’t be!

Still early days though I guess but they must give you a solid reason xxx

[Peppy2 in reply to tillymint16]

I no what you’re saying I’ve just got to learn to be assertive some thing I find hard to do. Xx

[tillymint16 in reply to Peppy2]

Yes with you on that one 🙄but must admit the recent scenario we’ve had with my husbands Dad and the NHS has left us shell shocked and realising that you can’t leave anything to chance and hope... be a pain .. it’s your health.. you deserve a good quality of aftercare!!! Xx

[Peppy2 in reply to tillymint16]

Hi Tilly just popped on to say hope your ok n hanging in there. Been thinking about you xx

[tillymint16 in reply to Peppy2]

Aww thanks was going to send a message tomoz as been such a busy but very productive day indeed and lots has happened this week.

Went to see my lady in Walton Neuro today that had been recommended from Headway. I went on my own as thought I needed to be brave to meet this fear head on. We had such a fantastic talk, went up to the ward and to theatre and spoke to staff there also. She was such a massive help as she helps people who have Head traumas and supports their families, and talked me through the whole thing.

I feel that I no longer have that isolated feeling... and could speak from the heart..

It was so sunny when I came out of the hospital and felt a weight had been lifted.

I’ve got my op date now as 29th May. I changed it as we are in the middle of moving house... well completely packed up but delayed... it’s a long frustrating story😳but wanted to be in... unpacked and familiar with my surroundings when I had my procedure.

How are you doing? Hope your in a better place now and your pain has eased. I was telling her about you and that it was such a help to speak to someone who’s ‘been there’

Andrea xx

[Peppy2 in reply to tillymint16]

Awww I’m so pleased for u. It’s great you come away feeling a lot better. Really over the moon for you. Wish I had of had that opportunity. Lol. My pain it’s just about gone. On higher does of amatripline also propananol. Keep in touch and don’t forget I’m here if u need any answers. Xx

[tillymint16 in reply to Peppy2]

Hi Peppyglad your getting on top of your pain. Flippin feel for you having to go through all that when you should have been jubilant.

Have you felt lethargic and lots of fatigue. Alex said yesterday it takes about 2-3 weeks to recover but moods can be very up and down.

I do feel in a very ‘different place’ mentally today almost like I’ve had it done?!?! It assured me so much going onto the ward that all was calm and in control... so helped. She told me to make a list of what was bothering me, why I was scared and why I shouldn’t be scared. Feel like all those crazy streams of out of control terror have been pulled back in and put into a ball of reality that I can keep tightly together.

I would recommend to anyone a call to Headway if they’re struggling as their recommendation has really assisted me👌🏻

Will keep in touch and pre op is 16th May... but I’ve got this!!! Xx

Andrea

[Nettiefour]

Hi I had coils and stent for an unruptured aneurysm and headaches and pain was the normal for a long time, I was taking high strength cocodamol and morphine, told not to take ibuprofen . Remember you have had major brain surgery it will take a while, rest don't strain your eyes by to much reading and tv, hope this helps

[malalatete]

Hi Peppy

I was on the high dose codeine for about a month after the op - I wasn't discharged for about 5 days because of the head pain. It just takes to settle after all that poking about - it is brain surgery, after all. You will be ok soon and by Easter it will just be a memoty.

Great they have been able to reassure you with a CAT scan. The thing to look out for with a bleed is neurological signs (it is a stroke, essentially). It is very rare for that to happen as coiling is one of the most effective treatments.

Hope the sinus infection clears soon and you return to normality. Take it gently though...

[tillymint16]

Hiya Peppy

Couldn’t find my last message to you but thinking about you recently and wondered how your getting on. Have you been to Cumbria yet... and Spain?

I had my bloods done at the docs yesterday as 1st part of pre med. (Took my 3 diazepam!!)

The main bit is in hospital on the 16th May... ahhhh op day is looming. Been on Headway site and a few people have had coiling recently. We’ve been getting on with our house/pet sitting in the meantime. Went to Scotland and off to Marple in Stockport for a week tomorrow🐕🐕

Hope you doing ok💕xx

Andrea

[Peppy2 in reply to tillymint16]

Hi Tilly. That’s good your operation will be over soon ... thank god and then you can rest and then move on with your life. I’m away on the 11th this month to lakes then Spain end of June. I’ve also decided to write my notice to not go back to work. I just can’t face it. So I’m going to give myself time out for the summer then find a new job October. Fingers crossed! Thanks for letting me no how you are. If you don’t come on here before your operation please let me no your ok. After the opp Is done. Take care of your self. Xx

[tillymint16]

Hiya Peppy

Hope your doing well and looking forward to your Spanish hols. Just a few days to go now and finishing all my bye byes this weekend. Had my pre op. Bit difficult with the blood test/ fear thing but at least they got the measure of me and have ordered lots of diazepam I think!!!

Going on Monday but not sure what time I’m going down on Tuesday. Must admit the nurses have been so understanding and great .. feel like I’m in safer hands now.

Enjoy your bank holiday and will send you a message after it’s all over ahhhh!!!

Andrea xx

[Peppy2 in reply to tillymint16]

Awww good luck I’m sure everything will go great. And please do let me no how you are .. xx

[tillymint16 in reply to Peppy2]

Ah thanks and I will certainly be in touch xx