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Surfer34

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Posts posted by Surfer34

  1. I don't know how they differ but I wonder if it has something to do with UK, US, and Canada using different terms for the same thing?

    Angiogram negative, does that mean nothing was found during the angiogram?

    I've found lots of US sites where they call any type of brain bleed a stroke. It's all very confusing. My neuro said I definitely did not have a stroke. But there are websites that call NASAHs a stroke.

    Perhaps it just depends on where you live ?

    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.

  2. Sorry folks.

    I have seen so many posts lately containing this word. I have tried looking it up, but, It's just too technical for me. Does anyone have a plain english, understandable translation.

    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.

  3. 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.

  4. 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.

  5. 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.

  6. 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.

  7. 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.

  8. Six months after my SAH I was back in hospital and after a scan they discovered I had hydrocephalus it was mild though and not bad enough to have a shunt fitted, also my ventricles were dilated. I seem to remember them saying that this was quite common after SAH but I'm not absolutely sure of this. I'm fine now, no more hydrocephalus.

    Do you have hydrocephalus?

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

  9. 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.

  10. 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.

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