Headaches and visual disturbances have returned!

General
1

Hi all,

I was in A&E last night with a frightening headache and large silver swirls before my eyes. The visual disturbances had settled but they have returned with a vengeance. Could it be linked to having the MR angio two weeks ago, or is it just a coincidence? I am worried as I won't have my angio results until the 10th of Dec and my mind is thinking all sorts.I am worried the coils could have slipped. It's been 6 months since my surgery.

I have noticed I am still forgetful and even forgot my cash point pin number on Friday.! Sometimes, especially this past week,it's like my brain gets stuck.I know what I want to say but I repeat a word, maybe three times until the sentence flows again. Very embarrassing when it happens while you are out shopping. I think the assistant who served me last week thought I was crazy, judging by the way she looked at me!

A&E told me last night that I probably had focal migraine but this has only been happening since I had my unruptured aneurysm coiled. I have never been one to suffer from headaches. The professor I saw last August, told me my symptoms 3 days after my surgery,was down to mild vasospasm ! The neurosurgeon disagreed!He said it was not connected to my surgery but I feel it is. Back then, I was admitted to Hospital with a headache,visual disturbances and then after both subsided, I had an odd sensation deep inside my head,no pain ( same side as my aneurysm ) like it was being squeezed, followed by a spasm on my left side affecting my left arm and leg.

I am still not back driving. My husband says by now I should be back to normal and I am made to feel like I am a malingerer.

I went to have my MRI last Thursday to check the size of my tumor. I decided against the gadolinium contrast. It was so hot in the scanner, after ten minutes I had to be released. The radiographer told me it was hot because she had previously scanned a patients spine! Is this correct? All the scans I have had previously, have been really cool. I probably won't have another appointment until next year.

Thanks

Eve

2

Hi Eve...I never suffered headaches / esp migraines until after coiling...they started in NICU after coiling...other than the "big bad one"... could this be a coincident for both of us ...? I think not...I pray that Surgeons will start to see the recurring symptoms...

Not sure about your husband...I still don't drive after 3 years...how could I? My balance and dizzy is enough to cause a problem...let alone my droopy eye since my coiling...causes not the best vision out of one eye...I think you need to wait till you get your results...if you can't wait till the 10th...call the Doctor's office and get his nurse and tell them your feelings...see if this will change the appointment...Gotcha in my Thoughts ~ Colleen

3

Hi Eve! so sorry you're experiencing this, I would be inclined to believe the surgeon over the proff. wow my scans were cold and I needed a blankie!!!lol. Do not believe others who say you should be healed by now- I heard up to two years but I think that was ruptured only. Keeping you in thoughts and prayers!

4

Hi Collen,

I was back in A&E again last night! I suddenly felt very strange and my legs went all weak. It was the odd feeling in my head that alarmed me. I waited for four hours and then was only seen by a nurse and not a doctor! I was told that anyone can have a seizure after having brain surgery and that I needed an MRI to determine if I had had a seizure, but I couldn't have the scan there. I was told I had to return to my Doctor for them to arrange it. It was a frightening feeling but if I am told this is how it will be after having surgery, I can cope with that. It's the neurosurgeon and nueroradiologist ,saying my symptoms are not connected that makes me concerned that something is wrong. Have you had similar?

Thanks

Eve

5

Hi Ron,

I seem to have taken a few steps backward lately. About a month ago, while out shopping I had to return home because I felt really odd and was afraid I may collapse. Then again about two weeks ago I felt odd and lost my balance on an escalator. I had an unpleasant sensation in my head. Good to know I'm not alone and I can come here.

Thanks

Eve

6

Hi Eve...

I haven't had any seizure's that I know of to date...I have had the awful feeling and dizziness and have gotten weak...but usually it passes in time...

I had to look where you were from because of your experience in the Hospital...and I am so sorry...here in the US ... you would be seen by a Doctor and it most likely would not take this long once they knew you were a brain aneurysm survivor...

Let us know if the MRI shows a seizure...~ Colleen

7

Thanks Collen,

I'm just getting panicky. I think it will be a while before I receive an appointment for an MRI. I called the Endocrinologist secretary again today. I explained what had happened regarding my last two MRI appointments, to check on my pituitary tumor and had asked if he would expedite my MRI. I explained I had been into A&E twice and was then told this MRI would only be checking my pituitary tumor and no other part of my brain for other symptoms I may be suffering. I was told the Endocrinologist had informed them I needed a scan last summer, and it was up to the MRI department when they next send out an appointment! So, I think I will be waiting for sometime for an MRI to find out if I'm having seizures since my surgery, unless I pay for a scan. I won't have my MRA results to know if all is well with my aneurysm until December! The stress! Yes I'm in the UK.

Thanks Eve

Thanks Eve

8

Hi eve- omg yes- I cant do escalators either=look for handicap elevator-we had to ask for direcctions in Sears My sister said the same after brain surgery years ago and I secretely thought she was exaggerating!!! I know better now, also as I turned back light out in kitchen and changed directions quick = WOW dizzy! I was so dumb to try to pull that one off! Please take extra care as we are so vulnerable to accidents and injuries. Nooo we are not alone, thank you for interacting! see you around!ps-early on I had to go sit in car and be babysat by a 12 yr old!! I hate that overwhelming fear that accompanies that awful exhaustion with light head feeling but hang in there this will improve~~

9

Thanks Ron,

I thought I was recovered and over all the odd sensations! My balance has been terrible today. Since having my surgery, if I try to bend to pick something up,over I go! I can't turn around quickly either,if I do my head spins. My husband told me last night that this is how I will always be, so I had better get use to it. I'm hopeful things will get better.

Thanks Eve

10

hi eve

i was in a&e two months ago with the same symptoms. it was frightening. i was in for the day. did ct etc. nothing abnormal noted. they said could have been due to med increase otherwise par for the course. i tend to think it was meds as i have changed and 6 weeks later headaches are back. woops, change again. gp is reluctant to think this is the case but as he has no other annie patients he really does not know what he is talking about. mine has been 10 yrs btw.

noel

11

Thanks Noel for posting. It is really frightening isn't it? I was the only person to have an annie in my doctors surgery and most doctors have been there a considerable amount of years. I am not on any meds,what do you take and do they help with your balance as I'm all over the place some days and if I turn around too fast I'm on the floor!I am going to refuse any more CT scans as I have had 5 CT scan's since May. A brain angio, a heart angio before they would attempt my coiling and the others when I have gone into A&E.

Thanks Eve

12

hi eve

i take blood pressure and blood thinner meds, unrelated to my clipping. my surgery was on the left side and for the most part whilst walking i sway to the right. i do not turn around at a speedy rate as i get very dizzy. i have had to put myself on the floor at times preempting a fall.after 10 years you get used to it. i think thats enough cts for a while unless in emergency situation. i think i have only had 6 cts in the 10 years.

noel

13

Hi Eve

Nice to know there is someone out there from the UK. I had my unruptured aneurysm stented in October 2012. I had no probs with surgery and apart from getting over anaesthetic I was fine immediately after. I then after a few weeks started having awful headaches. Went to GP and he clearly had no idea what to do with me. Prescribed amitriptylline for nerve pains. My daughter phoned the neurosurgeons and they said to go to A/E and say they wanted me scanned (had surgery at Preston but live in Blackpool). A/E refused and said I needed to relax and suggested a hot stone massage!. Surgeons phoned me next day and arranged for me to have a scan with them. All was ok but they put me back on steroids which immediately resolved problems. I had never had migraine before surgery although I did suffer a lot of headaches- but not migraines. I had thought I was recovering as I've been getting headaches only every couple of months and my double vision had improved a lot, but for the last 3 weeks I have virtually had a constant headache. I have been reluctant to see anyone about it as GP's don't seem to know what to do. Surgeons seem to have abandoned me (not seen them since 6 week follow up) and neurologist says its 'normal' to have migraine after head surgery of any type so just need to learn to live with it. I am concerned because they seem to have started up since a few weeks after I stopped taking Aspirin and I worry that there are some clotting issues. I have today made an appointment to see GP next week and see if I can get some info about the scan I had in April as I have only been told it was looking good.

My thoughts for you are that it is life changing and despite being told we can do anything we want the reality is that we have to take each day as we find it. I am a year down the line and I am still having real (not imagined or due to anxiety) problems. I work full time. I am a nurse so I know quite a bit. I drive and I try to live the life I had before all this. But reality is I have memory problems, fatigue problems, double vision and headaches that have an impact on a lot of what I do.

Sorry this is so long. Just wanted you to know that you are not on your own x

14

Hi Jennifer,

Thanks for posting. I haven't been given any meds to take. A&E told me over the weekend that I needed an MRI to rule out seizures or mini strokes,which my GP had to arrange. They said that I'm am not to take aspirin, because it could cause my coiled annie to bleed? They said seizures were common after any type of brain surgery, but until I have the scan, which seems unlikely to happen unless I pay for it, I won't know. My GP said that she would have to contact the Hospital before arranging an MRI. After my GP contacted the Hospital I have been informed I "don't need one"!!

I too feel like I have been abandoned by the medical profession. I wish I knew my MR angio results was ok. I have never suffered with headaches before having my surgery. Like you, I felt great directly after my surgery, then a few days afterwards, I had a headache and severe visual disturbances after arriving home, then a spasm down my left side. I don't know why my symptoms settled for a few months, then started reoccurring again out of the blue. My headaches are on the right side of my head some days and because this is the side of my annie it concerns me. A&E said my symptoms could be related to my pituitary tumor, but I know the vision problems started when I woke up in recovery after my surgery.

My GPs don't have any answers either, so I hope when I see the professor of neuerolgy (who I have to pay to see) on Tuesday, I will have some answers. Today, my vision was blurred for hours and this has been happening on and off a lot lately, again no answers given. If I got told it's normal to have these symptoms, I would be fine about it and just cope with them. I paid to see the neurosurgeon, quite soon after being discharged (I wasn't due a follow up appointment with him until 6 months later this December) because I was worried about my symptoms, he said it had nothing to do with my procedure!

I am also suppose to have 6 monthly MRI scans to check on my pituitary tumor, but this hasn't happened, through no fault of my own. The Hospital couldn't find my details, which were faxed over to them on my first MRI appointment, on the second appointment, the scanner was so hot I asked to be released. I had no joy with the endocrinologist secretary, who I have rang several times to explain and asked if my appointment could be expedited. She just tells me to contact my GP! Even though the endocrinologist arranged the MRI (which I have been told is only to check on my tumor and nothing else). No one seems to care if it's grown to the size of a lemon!

I too suffer with and memory problems. I became alarmed when my words became stuck the other day. I knew what I wanted to say but the sentence wouldn't flow! I get fatigue also, but some nights, like tonight, I have difficulty sleeping. I go to sleep then wake up either with a pain in my head, or I am just not able to sleep.

It's so good to know I'm not alone but without this site I would be.

Eve x

15

Hi Eve

Thinking of you and hoping you get some answers at your appointment tomorrow x

Jennifer

16

Hi Jennifer,

Thank you. I have not had a good day, my vision has been constantly blurred. Will let you know how it all goes tomorrow.

Eve x

17

Hi everyone,

It's gone 2am and I am up at 6am for my neuro appointment. I haven't felt right all night and I can't sleep tonight. I just hope tomorrow I don't get told " your symptoms are nothing to do with your surgery". I intend to pay for an EEG to rule out seizures, but I'm just wondering, if what I had were a TIA or a seizure, how would they find out? My GP said that any stroke will not show up on an MRI, for some time afterwards.

Eve x

18

Hi all,

Today's appointment went well. The professor was lovely. After examining me, he said he could find no evidence of me having had a stroke. He said he would check on my November MR angio results, before ordering any more tests. My left reflexes worked today! He feels sure that I am suffering focal migraine since having my surgery and not mini strokes or siezures. He said this type of migraine would cause my words sometimes to stick, blurred vision, huge silver moving swirls, balance problems,feeling odd, and also weakness in arm, leg or face temporarily. He said he fully understood me being anxious with regards to my symptoms. He said if he had been through the same, he would be anxious too. He wanted to prescribe Beta Blockers at first but my blood pressure is too low! He then suggested I try amitriplyine to see if it helps. Anyone here tried this? If my results are OK, I am to have a follow up in four months. I do feel reassured. He told me to just lay down and rest when I get the next attack until it passes. x

19

Hi Eve

That sounds more promising. Make sure you get some rest now! I was prescribed amitriptylline by my GP the first time I had severe headaches- about 2 weeks after discharge from hospital but the neurosurgeons said not to take them and put me back on steroids as they felt it was just the ongoing inflammation from the surgery. They made me feel much better straight away so I can't comment on amitriptylline effects. However, as the professor seemed to "get" what is going on I would be confident in what they prescribed. Here's hoping you get improvement now xxx

20

Hi Jennifer,

I just wish there was better follow up for us all. A neuro nurse on hand to answer all our worries or concerns would be great after our surgeries, because a six month follow up is far too long to wait. GP's don't have much, if any, understanding of aneurysms.

Glad you had some joy with your GP today. I am worried about the white spots ( told TIA's) found on my recent MRI after telephoning the GP, but I am happy my MR angio is OK. I'm just confused as to why they didn't show up on my angio. I didn't have a contrast dye with either. I was expecting a contrast with the MRA but I was told none was required. Both scans were at different Hospitals. If this is a TIA I have had, then I am worried because usually a major stroke always follows. I have low blood pressure and low cholesterol so I know it will be linked to my aneurysm coiling.x