SAH- Unknown cause ??? Brain ? Spine ?

[Guest kjo]

Hello friends, it is touching to read the SAH stories. And my sincere thanks to Karen for helping out so many SAH victims with this site. My father recently- a fortnight back suffered SAH. After undergoing all the tests- CT Angio, Spine Angio, MRA of cerebral vessels the doctors could not detect the root cause of the SAH. But occurence of SAH was confirmed. I would request if anyone has similar experience with SAH with no root cause traced. My father is back home, but has intermittent headache and feels sleepy most of the day. Please let me know if anyone of you have faced similar experiences. He has been asked by doctors to visit and probably may have to undergo Brain Angio after 4- 6 weeks. I did some research on net and found that, in around 15% of people diagnosed with SAH, no cause/ origin of SAH could be traced. Is it the limitation of technology or a one time event. Doctors assume the origin of SAH in the spine. But none of the medical investigations could eiter prove brain or spine origin for SAH. Any inputs/ experiences will be highly appreciated.

[andyp]

Hi-well statistically as you say 15% have no cause found and I as well as many others who use this site am in that group.

It is a good group to be in as no medical intervention was necessary and it is less likely to ever occur again!

Far less now than for any "normal" person.

That said-it is still a haemourrhage and your father will still suffer all the things that go with it-emotional and physical.

It does leave a question mark over things and can make one anxious.

Understandably!

I guess we all want to know why something happened-and it can be rather unsettlng for us to have no real answer.

I was told it was probably a congenital weakness that burst and has left no trace.

I don't think it is a limitation of technology as such -simply that there is now nothing to find-although clearly it had to have occured somewhere in the brain.

I felt odd pain in a particular spot for many months and I was sure then that was where it must have happened-but now I can not be quite so sure.

In such cases 2 angios is the norm -and that is reassuring.

I had them within 2 weeks of each other and neither showed what had happened.

Not sure how old your father is or how it happened.

Age can be a factor in speed of overall recovery.

Head pain and overwhelming tiredness are classic symptoms after a bleed and they will vary with the individual.

I had 3 months off work and struggled to get back to normality-I did go back too quickly though.

Don't underestimate what this can do in terms of physical and emotional issues-but do hold out hope that it will get better and with your help your dad will I am sure pull through.

If you or your dad at any time feel that you want to discuss anything then please feel free to private message me and I will gladly arrange that.

It is important if he can a little later get in touch with a local support group-people who will understand and where common experience and concerns can be shared-where are you? -I am assuming uk but you never know on this site!

It is still early days and I hope the 2nd angio will also be negative.

If you want to borrow a patient experience DVD I am happy to send it to you-I am sure it would be useful to you and your dad.

Best Wishes

Andy P

[Guest kjo]

Hi,

Thanks for ur reply andy. I am India. My father is 65 yrs old.

In my father's case, doctors suspect the cause of the bleed in the spine. As the first pain he experienced from his ribs, which movee to the neck and back. It lasted for few minutes. My father was attending a conference then. But inspit of this strange pain he could sit through the conference the whole day. This happened on 12th March. But he was normal, none of his body function was affected. in the following week, he also delivered 2 training sessions but did not face any pain. We did consult physicians in that week, but they advised to take some pain killer. We had also consulted our Neurophysician who ruled out any neuro problem.

On 17th March he was particiapting in some conference, when he again experience this pain...this time it was stiff neck and back ache, he was unable to move his neck..we rushed to the ortho again as were advised so. Ortho figured out it was a spondylyosis in the neck which was causing the pain... X- Ray reports confirmed that. He also had vomitting that day..and terrible neck pain. The next 2- 3 days he had excruciating headache and back ache for one day. All this time he was taking physiotherapy and rtreatment for spondy...but headachewould occur almost every alternate day. ...

finally on 23rd, we called up our Neuro and insisted on seeing him again as he had vomitting again on that day...My father was immediately hospitalised...confirmed of bleed..SAH..the same night DSA Brain was performed but doctors could not find anything. He was in the ICU, but luckily none of his body function was affected. He was fine. They did some other tests like Lumbar puncture, 1 MRI for spine but could not find the source.

On 2nd April he underwent DSA Spine ..And on 3rd April- MRA Cerebral vessels and Spine. Doctors said in such cases we assume that it could have been a congenital thing, which got burst and the body has take care of it..

But nothing was found...He has been aked to come for a follow up checkup in the second week of May. So far he has been fine, hail n hearty..gets mild headache or neck pain which stops after he takes a pain killer. He has been advised rest for 3- 4 weeks, after which he can resume normal activities.

So far so good..

When did you experience SAH, and how old were you when it happened.

Could you write about that please. My father is not yet back to accessing web, but he will get in touch with you once he is back to his normal activities. As of now he feels tired and sleepy during the day and not so comfortable on the computer.

Best Regards,

Kirti

[Guest kjo]

Hi Andy, You wrote about patient experience DVD . What does it exactly contain

Regards,

Kirti

[Annie]

Hi Kjo,

And Hi Andy too! I am also in Andy's group of what we call non-aneurysm SAH. The professionals in the field call it perimesencephalic SAH. (spelling?) Anyway, I was also told that it was a congenital weakness. Two angios showed no aneurysm. So yes, it's a fortunate thing to be a member of this group, but as Andy said, the recovery is just about the same. You can search Non-A on this site and maybe hear of some other cases. I am also available to talk to you or your dad any time if you want to private message me here.

We're thinking of you and your dad. Like Andy said, expect fatigue and probably short term memory issues mainly, and you can expect the recovery to gradually improve over time, but how much time is pretty individual. I had my SAH in Oct. of 05 and I am still having days of sleepiness and some memory issues. Dizziness and headaches are rare for me now. He just needs to be patient and listen to his body. And if he returns to work they need to understand that he LOOKS fine but will have days when he needs to REST.

Best,

Annie

[andyp]

Hello Kirti-I was very interested to read your father's story-I guess a bleed in the spine is more unusual but it affects the brain all the same- it sounds like he is doing very well.

The DVD is a must see and was made by Southampton Hospital- you are likely to benefit more if in the first 6 months of recovery.

It includes footage of several patients who had bleeds due to different causes and the effect on their close family.

It will be difficult for you too-because it affects everyone who are close to the patient.

My friend is going to put in on an MPEg file for Annie and for you if you want to see it.

If you have broadband then I am told it can be seen on Media player but if not I will send it on a disc if you let me know your E-mail address and home address.

Please use the private message facility to me on this site and I will do the rest.

I was 45 when it happened-over 2 years ago-It happened after making love..which you will find is not uncommon but quite difficult to deal with!

the tiredness will be a problem for quite some time and as Annie says-he must listen to his body!!!!!

Take rest whenever he needs it.

Is he still working? you mentioned a conference?

I wish you and your family all the best and look forward to hearing from you.

Say Hello to your father from me!

Best wishes

Andy P

[Annie]

WOW Andy!!! Thanks AGAIN for all of your trouble!! Jack and I are both really looking forward to seeing the dvd (cd? file? thingie??). You're just super. Thanks to you friend too for doing that for me.

Do you want me to send the old one back to you? Or should I ask Karen for the address of someone else that's interested?

xo,

Annie

[Guest kjo]

Dear Annie and Andy, Thanks a lot for your best wishes for my dad. Really appreciate it.

He is fine so far, we will be going for a follow up check up after 2 weeks...should know about next plan of action from the doctors.

Hope all goes well...

Andy i have sent you my email address.

Best regards,

Kirti

[Annie]

Kirti,

I think Sue on this site is also a non-aneurysm SAH. I know there's others but (surprise!) memory fails me.

Annie

[sue]

Hello Kirti,

please accept my apologies for not saying hi sooner! Annie is right, I am another Non-A person, I had the SAH on 31st December 2006 and it was 4 days, with a visit to A & E and 4 G.P.'s later that I had a CT scan which gave my diagnosis.

Since that time I have had no follow up from my consultant but after much hassling on my part, now have an appointment to see him on 14th May! I had an MRA scan on 24thMarch and am hoping that when I see my consultant he will give me some good news!

I have lots of questions already written down to ask him.

It seems that whether you have an aneurism or a bleed without cause, the recovery proccess is still the same, the best bit of advice I can give your dad is like everyone else says really, that is to listen to his body! Kirti, can't emphasise just how important this is. Sometimes, especially when we are a few months down the line, we get this surge of energy that makes us feel like "hey! I'm really feeling better now!" Then we use that energy up,cos we are feeling good, then end up totally worn out. So it's best that we learn to pace ourselves (something I have found difficult, to say the least)

Anyway, i'll speak to you soon hopefully!

Did you say you were Indian Kirti? you have such a pretty name, 2 of my grandaughters are half Indian. I haven't heard your name before.

Anyway, speak soon,

love Suexx

[Guest kjo]

Hi Sue,

Hope everything is fine and all goes well with the meeting with your consultant.

We need to visit the Neurophysician next week, not sure if he will ask to do an MRA..lets see how it goes. My dad is fine as of now, has been asked to take medicines- for Blood pressure. He has got a a plak in Carotid artery, so has been asked to monitor that and takes medicines for that. And one tablet- for B12. He had got back to his schedule of walks in the evening and Yoga in the morning. But brisk walks are out..

Thanks for the compliment Sue... Kirti- means 'Fame' Yes, I am an Indian..Basically from Bombay, but settled in Pune.

Best regards,

Kirti

[Karen]

Hi Kirti,

Sounds as though your Dad is recovering well .... Hope that all goes well with the visit to the Neurophysician next week.

I agree with Sue, Kirti is a very pretty name.