Surfer34

Sorry, I forgot to include that this data is NOT for all "angiogram negative" SAH, but rather ONLY those that were identified as perimesencephalic. Also, the data excludes rebleeds that occured in a 12 hour - 72 hour time period after initial bleed.

UPDATED : The first confirmed case of a perimesencephalic non aneurysmal rebleed was recently reported. I cant get the full report but here is the abstract. http://www.ncbi.nlm.nih.gov/pubmed/21663410 Its a 62 yr old male who rebleed 5 months after his initial bleed. When I started doing the math I came up with these general numbers......In America and Europe the number of PNASAH per year is about 2,000 combined. That means since the entity was first defined 30 years ago there should be about 60,000 cases in america and europe. That would mean that out of 60,000 people with PNASAH that only one has been confirmed to have rebleed. Averaged over 30 years that comes out to a number so low I wont even do the math. PNASAH is a condition that previsouly has been documented to never have had a confirmed case of a rebleed. All neurosurgons know this. Therefore, if there had been a suspected or confirmed case of a rebleed prior to this than surely it would have been reported. I wish I could read the entire study to get al the details but they arent available unless you pay. Either way, the rebleed risk in PNASAH is pretty darn low compared to aneurysmal risk (1-3% per year) and diffuse pattern non aneurysmal bleeds (.1 - .5% per year) So I am guessing all of us who have experienced a subarachnoid hemorrhage and survived are natually concered about the chances and risk of a bleed re-occuring. My doctor said the chance was "very low" and and it sounds like many people on this board have been told similiar things from their doctors. However, I wanted to research the issue myself and find out the true statistics and evidence. Here is what I came up with. 4 studies with approximately 250 study patients and a average follow up time of 3-5 years have found NO cases of a rebleed. The largest study is by Rinkel et al and their study had 160 patients. http://stroke.ahajournals.org/cgi/content/full/38/4/1222 http://www.uptodate.com/patients/content/abstract.do?topicKey=%7EkbxUbGmB8WXqiwH&refNum=30 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1388255/ Mayo Clinic Study short version http://www.mayoclinicproceedings.com/content/73/8/745.short long version http://www.mayoclinicproceedings.com/content/73/8/745.full.pdf+html I was very very encouraged that 4 studies found no cases of rebleeds and were confident enough to conclude that there is NO risk of rebleeding. Then I came across a small study of 21 patients that reported a male subject experienced a rebleed 31 months after his first bleed. This was surprising to me but still put the risk/chance of a rebleed at under 1%. http://jnnp.bmj.com/content/69/1/127.abstract?cited-by=yes&legid=jnnp;69/1/127 Upon further research though I found that the authors of previous studies had reviewed the smaller study and found some issues with it, namely the reported cases of the rebleed. They challenged whether it really happended or could be proved. For those who are interested here is a good back and forth between the two study authors. Short version http://jnnp.bmj.com/content/70/3/419.2?cited-by=yes&legid=jnnp;70/3/419a Long version http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1737243/pdf/v070p00419a.pdf In my opinion, after reading these exchanges I believe one can conclude that the authors who claimed to have a patient rebleed certainly did not prove such and it can be concluded that no study has ever found and confirmed a patient with a perimesencephalic bleed and rebleed or even an anuerysmal combination with perimesencepahlic.

Did you doctor ever give you a percentage chance of rebleeding ? I have researched all the studies I could find and by my calculations I found about 400 study patients comprising 5 studies with only ONE rebleeding that occured 31 months after initial bleed. This comes out to be a less than 1% chance of rebleed for perimesencephalic non-aneurysmal patients. 4 out of the 5 studies concluded there was "no" chance of rebleeding. I really hope this is true, lol.

Hello, I am new to this board and thought I would share my story of my Perimesencephalic Subarachnoid Hemorrhage. I am male, 34 yrs old with no previous medical problems. I woke up from a nap 46 days ago and got on the computer. All of a sudden I had a bad pain in the back of my head/neck. I thought maybe I had pulled a neck muscle so I tried to lay down for a minute. It didnt help. Soon I developed a bad headache, the worst I had ever had. After about 2-3 hours I started throwing up. I tried to sleep once again but the pain was too much. I went to the emergency room at the local hospital where a CT scanned showed blood in my brain. I was shocked. The ER doctor said "your scan shows blood in the brain, I have called the neurosurgeon and he'll be here in 20 minutes so we'll start prepping you for surgery right now" I couldnt believe what I was hearing. Before the surgeron arrived they sent me back for another CT scan, this time with the contrast. After that scan the surgeon came into my room and said they couldnt detect any anuerysm or source of bleeding so they wanted to do the cerebral angiogram test. Suffice to say the cerebral angiogram test was TOUGH. I honestly thought I was going to die during the test. My heart was doing crazy things and my limbs went numb twice. After the test they sent me to the ICU and a nurse casually said "oh, they didnt see anything on your tests so you are fine" The doctors and surgeon didnt even come by my room for 6 hours. I went from planning surgery and telling the nurse my next of kin information to just sitting in an ICU room alone with apparently everything being fine. I stayed in the ICU for 4 days and then was released. I had a follow up CT with contrast about 3 weeks later and the neurosurgeon said everything looked fine. The meeting lasted 10 minutes with basically no information from the doctors. Its now 46 days later and I am basically back to normal with a few exceptions. I have constant mild pain/discomformt in the back of my neck and mild short headaches. I tire easily as well. Apparently this last another 2-3 months from what I have read. Everything I know about my condition I have learned on the internet and I have tried to read every study I can find. I hope to gain some other knowledge from this board. The only instructions I got from my doctor was no strenous exercise for 3 months from the time of the bleed. I am a competive mountain biker and triathlete as well as active in my other sports. As of right now all I do is walk everyday for about 15-30 minutes. To be honest I am scared to do anything more. Hopefully some of you can chime in with information or studies about future risk of rebleeding. From what I can tell, there is almost no risk of rebleeding after about a week from initial bleed. Have you guys been told the same by your doctors or research ? http://stroke.ahajournals.org/cgi/content/full/38/4/1222 http://www.uptodate.com/patients/content/abstract.do?topicKey=%7EkbxUbGmB8WXqiwH&refNum=2%2C4-7