Follow-up 6th March 2013

[KelBel]

Prior to my recent follow-up I will provide a quick run through of what happened to me and when;

I had my SAH 11th Dec 2009

I was admitted to hospital finally on 15th Dec 2009; at some point it was recorded that I had Chemical Meningitis, presumably following the 2nd CT scan with dye.

I was coiled 18th Dec 2009; severe vasospasm during the op.

I had an MRi/MRa Feb 2010 because of migraines & numbness in my left hand.

I had a catheter angiogram to check my coil Dec 2010.

I had a follow-up appointment Jan/Feb 2011 and everything was okay (didn't matter that I was having a lot of pain/burning sensation at the top of my head and in the top right hand side of my head, my annie was stable).

I had an MRi/MRa Jan 2012 and then had a follow-up appointment Mar 2012 and everything was okay (despite the fact I was still having a lot of pain/burning sensation at the top of my head and in the top right hand side of my head, my annie was stable).

I was informed at this appointment that I would be scanned again in a year and a follow-up appointment was made for Mar 2013.

I received a letter 2 weeks later to inform me that I would not need to be scanned until Dec 2014 (which was a bit of shock going from 1 year to 3 years).

2 weeks ago I emailed the hospital to ask if I still needed to go for the follow-up appointment, seeing as I did not get scanned this year. I was told that yes I should go as otherwise I will just get discharged.

I travelled up to London with my mum yesterday for this follow-up appointment.

I checked in and waited 40 minutes to be called in (which is really quick!) to then be told that I need not have come for this appointment; despite that fact it was still booked in, and despite the fact that the letter last year did not mention this appointment would or should be cancelled ()

As I suffered a spate of 6 migraines in 3 days a few weeks ago, resulting in a CT scan at my local hospital and an overnight stay in hospital, I mentioned this and he wasn’t really bothered. He just said that it won’t be anything to do with my aneurysm as this has been stable for 3 years so I need to not worry about that, but I will need to be referred to a Neurologist to discuss the migraines.

I asked how this will happen and he said I need to ask my GP to refer me. There isn’t a high chance of it just happening like that. My mum then asked if he would be able to write a letter with this recommendation so that it might happen.

I feel like they cannot wait to get me off their books. He said that it is likely they will be discharging me in Mar 2015 at my next follow-up appointment.

It is re-assuring in a way that they are convinced it is all okay, but as I have been suffering migraines and head pains, as well as trouble recalling the words I want to use, I am still a little worried. And I was checked for 2 years not 3 years, as I have not had an MRi check in the past year at that hospital.

Hopefully I will get a referral to a Neurologist and they can check me over and put my mind at rest.

Do you think I am being overly anxious or paranoid?

Is it not in our nature to feel this way about sudden head pains / migraines / vomiting / problems thinking of the right words to say...

Kel x

[Winb143]

Kel,

I was discharged from Hospital that done op, I had mine in 2009 also, shunt fitted in 2010.

I saw Surgeon in 2011 and he wrote a letter to me and Doc stating if I feel rough then to see him. as he thinks I am fine (my words). I had my last MRI then also.

I was relieved plus I talked the hind legs off a donkey when I saw him lol, nervous

All will be well xx

Love

Win xx No Stress Though xx Stress is a No No xx

[Sandi K]

Hi Kel!

I hope you get an opportunity to consult with a neuro regarding your recent migraines. Based on everything said in your SAH follow up appointment it's most likely nothing to do with SAH but it's obvious you are concerned and as we must advocate for ourselves you must keep pushing to get what you want.

Migraines can come for all sorts of reasons. One reason is peri menopause, I wonder if your GP would run some hormone tests for you while you wait for neuro appt? My GP has done this for me and all my numbers came back normal. I never had migraines until after my SAH, now I get some doozies that last days but thankfully not often. I've been getting them since right after SAH though and for you migraines just began recently if I remember right. We don't know why I get migraines but it must be associated with my head event.

I'm sorry you are having to go through this and I hope it is figured out soon.

Sandi K. Xoxoxo

[Gill C]

Kel I don't think you're over anxious, given that you were bad enough to admiatted to hospitals with your migraines I too would be concerned & wanting futher diagnosis or explanation.

Anything that happens to our heads now is scarey & we know what 'could' happen so we are extra wary. I would def see your GP & make sure she/he refers you for further investigations too, maybe a double whammy will result in you actually being seen?

I haven't had any migraines since my op, before I had 7 in 10 days & they weren't as bad as yours. I do someimes think I see the ghost of my aura if I move my eyes too fast when I'm really tired but it soon goes.

I really hope you get seen & get some reassurances that all is well, I know how important that is xxxx

[paul99]

hi kel

your not being over anxious you can go to your gp and sit and ask for an urgent refferal to a neurologist there are some that specialize in migrains and the treatment of them i know charing cross hospital and they do pass patients on as soon as they can lin now has a self refferal permission at both hospitals she is being seen at you could ask this when you get to see your neurologist good luck

[MaryB]

Kel Bel,

I think your reaction is perfectly normal. I think we all would like to be scanned every year the rest of our lives but I know that is not possible. I did not have annies & I imagine that anyone that does would be very worried that they are missing something big.

You are feeling well now? And back to normal? ( sorry I have to keep going back to reread what you wrote! jeezzzzzz).

I suffered 6 months or more b4 my NASAH and stroke - writing nonsence in charts, writing was falling off the line by end of sentence, fatigue then as bad as it is now, just was not feelign right. To this day no one can tell me what that was about. I am frustrated by that. I would like a conversation about those symptoms instead of well this is where you are now.

Sorry I am no help - jounaling has been helpful to me with my daily "where am I at?" Although I really need to add what I ate that day as well. But I just can't seem to muster up the energy for that much work. I know it would helpwith my painful head days as well as my fibro.

Big hugs to you for comign so far! Maryb

[KelBel]

Thanks Win - as much as I try not to stress, sometimes it just happens x

Thanks Sandi - I will definitely keep asking for a referral. I might wait a week to make an appointment with my GP, as the Registrar I saw at Charing Cross did say he would write to my GP and suggest I get seen for the migraines.

I have suffered with headaches of varying intensity since I was 11 yrs old. I used to get tension headaches, and my neck and right shoulder would always be really 'tight'. I then developed really bad headaches and a dislike of bright lights and strong perfumes at about the age of 20/21.

The migraines started when I was 30, and continued fairly regularly right up to my SAH, and I did get some after the SAH, and I had only had a few over the past few years until the migraines I had the other week, which were the worst I've ever had.

Thank you Gill & Paul - I knew I could come here and get some much-needed validation for how I feel.

Thanks Mary - I guess annie or no annie we are all going to be somewhat wary of symptoms in the future.

I am feeling head-achey most of the time, although I have not had another migraine since the other week.

I get a lot of 'hot' pains on the top of my head and aching in the top-right-hand-side of my head too.

(I don't know how many times I have had to scroll up and down to check again what you all have written! )

I need to try journaling, I think it would be useful.

Thanks everyone

I will keep you updated!

Kel x

[Gill C]

Kel I too had headaches from a young age, migraines starting at 13 & usually on a Tues as that was our French Oral test & I stressed so much about them. A few years later i got one whilst swimming in a cold outdoor pool on a very hot day & find that if I have a sauna & then a cold shower that sets them off too.

I have googled cluster headaches & I think I had them as well as migraines. I did ask the neurosurgeon at the Wessex meet a while back if there was a link between migraines & annis & he said no. I still think there is.

I hope you get seen soon & can relax a little knowing you are ok x

[kpaggett]

I can totally relate to being discharged when you feel the most vulnerable. My SAH was of unknown origins. No one could give me ANY answers and I had so many tests. I was so bad they did 2 CTs in the emergency room and I couldn't move or talk. I was Just aware of everything. Bluh. Anyway, they all said that I had beautiful arteries and I didn't need any follow-up after the 2nd angio. Every time I experienced any symptom, I'd call to make sure. Then at some point, I began to feel safe in my body again. I had to trust that what others were telling me was in fact true. I still get edgy whenever I get a headache of any size as I too am more sensitive to just about any sensory information coming in...like pain or sounds.

I hope you can become reassured that another SAH is rare. Maybe talk to the neurologist when you see her (probably he...) about giving you ACTUAL statistics for your case. The logical mind helps to alleviate the emotional one. Helps, not controls. You can decide what to do with the information when you're given it, but maybe you need to get some from him first. I have no idea what is causing your migraines and usually, no one can tell you...just offer you some choices to help relieve them. Even then, it's usually drugs or other techniques that can help.

Keep on looking, you'll find answers.

~Kris