Surfer34

The termnology is the same throughout the world. Angiogram negative does mean that no source of bleeding was found on imaging. From everything I have been told and read a spontaneous SAH is in fact a stroke. It is a rare form of stroke and not the common kind. I believe SAH make up about 10% of all strokes. I'm not sure why your doctor would have said you didnt have a stroke.

Perimesencephalic is basically an area of the brain. PERI means "around or surrouding" Mesencephalon is basically the midbrain or middle of the brain ( towards the bottom) For most people in this section of the forum its going to be used in the context of the area of their brain that their subarachnoid hemorrhage (bleed) was located. For people who have had a spontaneous SAH there is a group of patients who dont have an identifiable source of bleeding. These patients are called "angiogram negative" because radiological imaging (CT scans, cerebral angiograms, DSA) cant locate where the blood came from although the imaging can pinpoint where the blood from the bleed has settled. Among this group of angio negative patients is a a subset of two groups. One group is called "diffuse" NASAH and the other is "perimesencephalic" NASAH. Both groups are "non aneurysmal" subarachnoid hemorrhage but are differentiated by the pattern of distribution of their blood on their initial non contrast CT scan. A "perimesencephalic" pattern will basically be centered around the midbrain while a "diffuse" pattern will be spread out over more area and not as consentrated around the midbrain. Side note : to make matters more confusing, the term and diagnosis of perimesencephalic is NOT exclusive to non aneurysmal SAH. In about 5% of cases with a perimesecephalic pattern of bleeding it is caused by an aneurysm. Only after you have had at least one cerebral angiogram (preferbaly two) can the "non aneurysm" label be applied.

were you doing a specific exercise when it happened ?

I have read some data that shows a link between subarachnoid hemorraghes and strenous activity or exercise. However, the studies never say how long before the SAH was the activity or if it was during. Any info from your experience would be appreciated

I sought a 3rd opinion from John Hopkins and they said mine is in fact perimesencephalic. I guess doctors can disagree on these things. Scottish Lass - Did you have a second cerebral angiogram ?

wow, thats terrible. here is america you are entitled to them. do you know if you were perimesencephalic or angiogram negative ?

were you angiogram negative or perimesencephalic ?

Well, after my second opinion from Cedar Sinai I guess mine now changes to "angiogram negative". So thats 4-0 in favor of angiogram negative vs perimesencephalic.

I am just curious to compare the written reports and see other peoples and their blood distribution pattern compared to mine.

Yes I have all of my images on CD and the written reports. My diagnosis in the hospital was made by the neurosurgon there. Based on the blood distribution pattern and the absence of any source of bleeding by CT scans and cerebral angiogram he gave me the diagnosis of Perimesencephalic Subarachnoid Hemorrhage. I then did my follow up appointment with another neurosurgon 3 weeks later and a follow up CT scan. That neurosurgon also gave me the diagnosis of Perimesencephalic. I was told everything was fine and in 3 months I was free to go about every activity in life without any restrictions whatsoever and that NO follow up testing was needed. However, Cedar Sinai Hospital has a program where their neurosurgons will review all films and reports and give a second opinion. I mailed everything in and waited 3 weeks their neurosurgon there called me and said my initial diagnosis was wrong and that I should get another cerebral angiogram test. I am now going to UCLA medical center next week for another opinion and I assume they will order another cerebral angiogram. My first one was kinda traumatic and I really dont want a second one.

Yeah I am going back to my original neurosurgon to get his opinion on the second opinion. I really dont want to get a second cebreal angiogram but also now I am worried what the second test may show. Its also surprising that the different doctors have different opinions and they are both supposed to be very good specialists. I cant figure out how two doctors could disagree on something that appears to be pretty straight forward and easy to distinguish. BTW - Lin, I live in California.

So my original diagnosis in Sept was a Perimesencephalic Subarachnoid Hemorrhage. I had one CT scan with no contrast, one with contrast and a cebreal angiogram and then 3 weeks later another CT scan with contrast. My neurosurgeon said everything was fine and I was good to go. However, I sought a second opinion from Cedar Senai Hospital and the neurosurgon there said he wanted me to go for a second cerebral angiogram because he said my pattern was not a typical perimesencephalic pattern of blood distrbution. I am very upset and now kinda scared.

Did any of your doctors give you any advice on whether or not it was safe to exercise after your SAH ? Mine told me that after 3 months I would have NO restrictions whatsoever. I believe him when he says that but I think we all can agree it just doesnt FEEL right and I keep thinking I will cause another SAH but working out hard.

I am 3 months from my SAH and I still need a nap during the day. My sleep patterns have mostly returned to normal though. After leaving the hospital my sleep was terrible. I couldnt sleep for more than 45 minutes at a time but I would stay in bed and do that pattern for about 2 weeks. Then after about 3-4 weeks I got the jolting that many people experience. It lasted for about a week and half. It was so bad it would take me 3 hours to fall asleep at night. I get the jolts now too but only about every 2-4 days and just one jolt so its not really a problem. Another sleep issue that is just now resolving is due to my head and neck pain I couldnt sleep on my stomach or face like I have my whole life. It has caused to back pain that hipefully will get better. The last thing that I have is just as I am about to fall asleep I get a mini anxiety rush and I wake up. I guess I still have some emotional stuff I need to deal with.

How many people here exercise after their SAH ? My doctor said to wait 3 months which is now up so I am eager to get back into working out but to be honest I am afraid.

I had some very minor jaw pain for a few days which I thought was from stress at night sleeping. Also, I have bad back pains and muscle spasms. I dont know if they are related to my SAH though.

Just wanted to do a little poll and find out among those whose scans were negative if they have a confirmed perimesencephalic (pretruncal) SAH or an "angiogram negative" SAH. Mine was perimesencephalic.

Thank you for all the feedback. I dont think I have hydrocephalus but I have been feeling sick the last 7 days. Nausea and faitgue but I went to the emergency room and they thought I had a stomach bug. Hydrocephalus crossed my mind because I am only 3 months from my SAH but it seems like I dont have the symptoms of it. I will probably call my neurologists to see what he says. I just didnt feel like getting another CT scan or MRI right now.

Did you notice any symptoms from your hydrocephalus ? Also, did it just go away on its own ?

So is that the typical time it takes to develope ? I mean, compared with like 3 months or a year ?

Has anyone here gotten hydrocephalus as a result of their SAH ? If so, how long after the SAH did it develop?

I had a short bout of throwing up on the night of my SAH. However, after I got out of the hospital I was fine for a month and half. Now I have had two bouts of extreme nausea twice in the last month. I didnt think it was related to my SAH but I dont think its a stomach bug either. I went to the doctor and a urine test showed micro amount of blood in my urine so now I have to get some follow up tests on Monday. Not looking forward to it.

Thnks for all the feedback. So now, does anyone know how you can tell if you got a 4 vessel study vs. a 3 vessel study ? I am looking at my billing and its so confusing I have no idea.

When I had my test done I was pretty sure the doctor said they were going to insert a catheter into my right groin AND my left groin. However, they only did the right side. Did any of you have it done on both sides ? The reason I am asking is because I wanted to find out if I had a "4 vessel study" but it sounds like maybe I didnt.

Before I had my cerebral angiogram I was pretty sure the doctor said they were going to insert a catheter into my rgt side groin and THEN my left side groin. However, they only ended up dong the right side groin. I was wondering if its common to do both sides and if anyone here had their procedure done on both sides ? The reason I was wondering is because I have read alot about how important it is to have a "technically sufficient" angiogram performed and that means a "4 vessel" angiogram.