Back to square one....

[Bev897056]

Hi everyone

So after my seizure i feel like im bk to square 1! I was having CBT theory and this has been put on hold until i find out some reasons WHY i have had this bleed and now seizures to follow!!!!

BUT as we have all said, will I ever find out where the blood has come from???? its a complete waiting game!!I am obsessed that there is a cause that hasn't been found yet - like a micro AVM or micro ani or micro tumor....:confused:

To date I have now had:

2 MRI'S -1 with dye

1 Angigram

3 CT scans - 1 with dye

Surley something would have showed up??????? I know all of us with a bleed with no cause are all in the same boat but its driving me crazy not having the answers and now to top it off i have the seizure!!??!!??!!??!!??

Please can you tell me what tests you had & are you now satisfied that the dr's have done enough???

Thanks

Bev

xx:frown:

[VanessaW]

Hi Bev,

I'm really sorry to hear about your latest developments, it must feel rubbish for you.

I had a perimesencephalic NASAH bleed with no explanation. The tests I had were:

one CT

one CT with contrast dye

one CT angiogram

one MRI of brain and spine - no contrast

The radiologists could find no reason for the bleed, they could see a congenital anomaly called a "fenestration" which is something that some people have in a big blood vessel leading into the brain and occasionally an aneurysm can hide in there, but there was no aneurysm in my case. They found an incidental aneurysm elsewhere in my brain which didn't cause the bleed. In the MRI they did the whole brain and spine to ensure there were no blood vessel oddities such as AVMs in the spinal vessels that could have caused a bleed. I hope this was done for you. If you had a permesencephalic bleed, your doctors should have been especially looking at the circulation at the back of your brain (the posterior circulation) and going down into the neck for causes. I imagine your doctors will have considered all these possibilities.

Overall I am satisfied that they looked thoroughly enough. I also largely accepted that there is no explanation. It's a bit rubbish isn't it. My neuro consultant said that he has only known one person in his entire career experience a second NASAH, so I am hanging on to that and assuming there is not going to be another one. It's natural though to have concern about a repeat bleed. I hope you can find a way towards accepting it all, though I know it's difficult, especially as you have experienced this seizure. Perhaps your medics will be amenable to further MRI studies to put your mind at rest.

I wish you all the best

Vanessa

x

[Bev897056]

Thanks for. Your reply vanessa. I just got all my notes out and they have put non traumatic. Spontenious intercrianal hemeridge. So I have not got a clue what the difference between the two are blood was adjacent to syvilian fissure! I feel as if in have just been left to get on living in fear:

X

[Louise]

Try not to stress up too much about it Bev - I know a lot easier said than done, but it wont help...

sorry cant help I had full blown SAH...

but we all have swings & roundabouts ups & downs...

take care.

[VanessaW]

Hi Bev

Sometimes people can have a SAH following a trauma to the head, that didn't happen to you so your bleed was non traumatic. As they haven't found a cause they call it a spontaneous bleed, i.e. there is no known cause such as an aneurysm, an AVM or other abnormality that they can detect by imaging such as CT and MRI. The Sylvian fissure is an area in the brain where if there is blood in it, the SAH is more likely to have been caused by an aneurysm. Your report says blood was adjacent to but not in the sylvian fissure. This all indicates a non aneurysm bleed and that is what the doctors are looking for, identifiable causes that can be treated. Most NASAH are caused by the rupture of a superficial blood vessel. I know it's frustrating because that's not a great explanation either.

It would certainly be reasonable to ask for a more detailed explanation than the one you have. There should be reports of all the imaging you have had done and it would be reasonable to ask for more details presented to you so you can be reassured that they have looked for everything possible. Perhaps your GP can assist in this as they will have copies of all the imaging reports. It might help to put your mind at rest if you have more details of what they have looked for.

best wishes

Vanessa

[Sandi K]

Vanessa, it's wonderful to have you here to explain some of this stuff.

Bev, I've reconciled the whole thing in my mind by believing that a blood vessel 'blew up' and when they went in (angiogram) to look for the aneurysm they found no cause and nothing to fix because the vessel ruptured and was no longer there. My bleeding stopped either on its own or more likely with the drugs I was given.

Sandi K.

[MaryB]

Bev, I have spent so much time readign my reports and I still cannot wrap my head around it all. I think they should us a coloring book and tell us what to color for what went wrong so maybe it will stick.

I had NASAH - I do not htink I have all my reports but this is my list.

I must of had scans from 9/16 to 9/21 with I have no copies of as my 9/21 talks about changes. NASAH was 9/16 at midnight.

CTA w&w/o contrast 9/21

Ct wo 9/24

CT wo constrast Nov.

MRA wo conrtrast 12/15

MRI with & W/O contrast twice one in 11/15 & another 2/15 to follow up the tumor they found.

I hope this helps. I had no reason for my NASAH. I did however feel ill all last summer prior to to my brain exploding. I was writing wrong sentences in charts at work, not finishing thoughts as I was talking, EXTREME fatigue.

I like my new neurologist but my GP speaks my language. Good luck, Maryb

[kpaggett]

When I initially came in the the ER with the worst headache of my life, they did a CT scan and labeled me Perimesencephalic. I had slight deficits in strength and balance, but that's it, then when they left the room to write up discharge/home care, I had another headache just like the initial one and it made me vomit and lay back completely paralyzed and unable to speak...so they did another CT scan and told my husband (NOT ME- even though I was completely aware and I was a neuro person!) that the SAH had progressed. I was sent to the ICU with a horrible doctor saying, 'She'll be fine'. Semantics matter. I was stable, not fine and I'm still not fine!

Anyway, I had:

6 total CTs (Because they couldn't figure out why I was unresponsive only sometimes. Duh, you're giving me too much Insulin! I had to tell them this specifically, apparently 'I'm sensitive to drugs' wasn't enough).

MRI

Doppler

2 Angios

I am satisfied that neither they or I have any idea what exactly happened, there are just some things that traditional medicine doesn't know yet. It doesn't mean there isn't a cause, just our tests can't identify one. However, since the stats show that it is unlikely to happen again, that is something they do know. Take comfort in this. The whys are beside the point.

No doctor can help me now. I need no tests. I need no treatment. I just need recovery time.

~Kris

[Louise]

Know its kinda not the same but just noticed a book called: If Walls Could Talk: Don't Let Epilepsy Control You

[Bev897056]

Well saw neuro surgeon today and they r sending me for another angiogram as he said that the blood clot could have been pressing on something not allowimg the dye to flow through an abnormality so they want to double check now ithe blood clot has nearly broken away....i thought it would have totally cleared by now but he says it takes a while and thats what causes me to feel odd and dizzy......anyone else heard of this? Also he said its a good thing they havent found anything yet and maybe it could have been something that blew itself up.....but if they do angio and find some little critter they can bolast itn away with gamma knife surgery.

I still question everything though coz I just never ever feel right. Its been 8 month now.....just wonder how long it will take to fully recover....any ideas?

[Skippy]

Hi bev, sorry to read about your problem. I had my sah in march, at first

I thought I was doing really well, I was coping with the head aches etc and

I was glad to still be alive. 8 months on, I seem much worse, I have

problems with my vision and balance, the optician says that it is not my

eyes but my head, she has referred me to a specialist at our hospital but as

yet no appointment. I am now losing my confidence about my ability to do

thi gs regardi g decisions. as my memory is poor also my balance. Having

lost my driving license, the DVLA. have now. Decided Ihave to a 3 hr

assesment before they decide whether I can drive. Did thet take your licence

away? I feel that loosing my independance. has really affected me. Best

wishes jillbb