Surfer34

http://jnnp.bmj.com/content/early/2011/04/06/jnnp.2010.239335.full This study was just released last month. It investigates non aneurysmal SAH both short term and long term. The data includes and combined both perimesencephalic bleeds and diffuse patterns bleeds. Some interesting things - Known aneurysmal SAH has roughly a 50% mortality whereas non aneurysmal SAH has a mortality of about 4-10% Rebleeding in aneurysmal patients carries a mortality of 50-70% whereas rebleeding in non aneurysmal patients is about 5-15% For non aneurysmal patients, the rebleed risk after one year is less than 1% Long term morbidity for aneurysmal patients is about 60-70% whereas non aneurysmal patients its about 15%

Caroline - I had non aneurysmal SAH in Sept. I can assure you that your back pain is totally normal. I could barely walk for 2-3 weeks after mine SAH and the lower back pain lasted for about 3-4 months. I still have upper back muscle spasms 8 months later. Your recovery time will vary but I suggest you not worry or stress about how long it will take and just focus on each day and resting and go slow.

hey Sandi, there are some theories about "intramural hematoma" being a cause of the bleeds. Here is a good read.... http://171.67.112.83/content/75/11/1169.full.pdf+html Personally, I lean towards this theory.

I received different opinions from doctors about whether I needed a repeat catheter angiogram. 3 docs said no, 2 docs said yes. I had a follow up CTA 14 days after my bleed and it showed nothing. Even the doctors who said I should have a repeat catheter angiogram said the likelyhood of finding an aneurysm was 1 out of 100. I was willing to get the test done but it was such a hassle (and expensive) I decided to have an MRA as my long term follow up test. Its been 8 months since my bleed. The test was pretty easy to do, 10 minutes in the machine and it wasnt claustrophbic at all. No contrast was used. Results showed no evidence of intercranial aneurysms. My research seems to indicate new MRI machines (3t) are pretty good at small aneurysm detection. I feel a little more reassured since the test was done 8 months later which gives time for thrombosed anni's to resolve. I guess these PNASAH bleeds are just a mystery.

I guess they mean an aneurysm rupture rather than causing an aneurysm to appear

I am surprised they would have you take a CT scan for someone who no symptoms. CT scans with contrast expose you to large amounts of radiation and harmful effects of the iodine contrast material. Usually asympomatic people get MRI/MRA which wouldnt expose you to radiation and can be done without contrast. If I were you I would opt for the MRI/MRA. If you are an adult and your first scan comes up negative I wouldnt worry about ever developing an aneurysm or suffering a SAH.

I had a non aneurysmal bleed 8 months ago. My original neurosurgon said I could go back to rigorous workouts and have no restrictions. Another neurosurgon who is a marathon runner and triathlete and mountain climber said that if he had my exact same bleed that he would return to all of his previous activities. At this point I am too nervous to return to working out since the cause of my bleed wasnt found so I dont know what to think.

Remember that anytime your head is below your heart that your blood pressure will increase in your head. I think there are alot of positions in Yoga that would lead to elevated pressures in the head and reduced outflow. I personally would feel much more comfortable jogging than doing yoga.

When you have an MRI with contrast do they hook up an IV or just give you a shot ? My dad said when he got his they had an IV set up but when they gave the contrast it was just a shot and not the power booster drip bag like CT scans. Is that true ? I am supposed to go for an MRI soon and I was wondering how they give the contrast. Also, I heard that for MRI contrast you barely even feel it like the CT scan contrast, is that true ?

hey sandi, you were diagnosied with perimesencephalic SAH right ? did you have a repeat cerebral angiogram ?

Interesting article but not surprising at all. I find the majority of my friends and family dnt have any clue what I went through and what I am still going through. None of them have taken even 2 minutes of their time to research the subject. My sister thinks I am a hypocondriac and that nothing happened to me at all.

I didnt know she had a SAH but I kenw that Brett Micheals had. Apparently Micheals had a perimesencephalic bleed but Stone had a dissection of an artery and actually had surgery and according to her doctor an "aneurysmal pattern" of bleeding.

Kempse - you might want to consider a home blood pressure monitoring machine. I bought one for my dad and I use it all the time. They are sold at most drug stores and mine cost about $70 (american).

From the studies I have read there appears to be a link between high blood pressure and aneurysms and aneurysm rupture. Therefore, I think monitoring and controlling blood pressure for those patients is very important. However, there doesnt seem to be any link between blood pressure and non aneurysm perimesencephalic SAH. In fact, it appears there are NO identifiable risk factors for PMNASAH. There are a few studies on that specific topic, i'll try to find and post them. For me personally (i had non aneurysm SAH) I had normal blood pressure before my SAH (120/80) and since my SAH I have had even lower (110/70). I know that while in the hospital they almost always give BP lowering drugs because the stress alone from the event can raise BP significantly.

You should be fine taking the test. All you do is lay there for about 20-30 minutes and try not to move. I am a claustrophobic person but I didnt have problems being in the machine. It helps alot knowing that anytime you want to get out you can. About halfway through the test they will inject the contrast dye and the feeling is pretty slight. Nothing to worry about at all. The think the MRI/MRA is an easy test to take and will give you a great picture of any problems. Good luck !!

They told me the test would "take about 20 minutes" haha.

so you had all of your MRA's with no contrast ? hmm. i would have certainly liked to get mine without contrast, i didnt like the way it made my heart race and wanna pee, lol. mine was CTA though. i really like the no radiation from the MRI's and apparently the contrast dye they use is much safer for kidneys and stuff.

From what I know about this topic, MRI is often used for post op imaging of those who have already been treated for a ruptured or unruptured aneurysm. This is done to check the placement of a coil or clip. However, in pre-op assement of SAH with uknown location, MRA is only accurate in determining the location of a ruptured aneurysm in about 95 % of cases. I am no expert but I am not sure how the vascular structure of the brain or neck or spinal areas could be seen properly without a contrast agent. Since my SAH was angiogram negative (CTA and then DSA) the issue of the type of follow up test was very important. I had a CTA done for follow up instead of a DSA but later found out that most centers will order DSA because of its better sensitivty. In my case I was told DSA would pick up about 1-2% of the missed aneursyms from CTA or MRA.

Yeah I assumed she meant a cerebral catheter angiogram vs an MRI. However, not all of them would be angiography. That only refers to imaging of vascular structures like veins and arteries. Many times a CT or MRI, if done without a contrast agent, is not angiography. I would disagree with the MRA being the most detailed though. For the brain the cerebral angiogram is certainly more detailed as MRA/MRI has trouble detecting aneurysms smaller than about 5mm. Same with CTA as well. The good thing is that every year CT and MRI machines and software is getting better and hopefully soon will replace cerebral angiograms. Here is a good article about some new techonology http://www.healthimaging.com/index.php?option=com_articles&view=article&id=20379:study-mra--computer-aided-detection-can-better-detect-brain-aneurysms

Well an angiogram is a much better diagnostic test. It can see the smallest details that an MRI cant pick up. However, the test has serious risk of complication. Its approx 1-3% risk of permanent neurological disability (stroke, allergic reaction,blindness,heart attack) in addition to a massive radiation dose and contrast load. I didnt like my angio at all but had no problems with my MRI. Good luck on whatever test you take !!!

Hey there, if you are interested in a second opinion on your condition I posted a thread on the the topic. http://www.behindthegray.net/vbulletin/showthread.php?6716-A-Second-Opinion-U.S.A As you'll notice from stories on this board, its very common for doctors to tell us very little and to basically just say "get on with your life". Friends, family and co-workers assume since we didnt have surgery that there is nothing wrong with us and cant understand the issues we deal with, both physical and emotional. This site is a great resource for people with with SAH so feel free to ask questions. btw - the comment your nurse made about you returning the hospital could be related to whether you had a "diffuse" pattern SAH or a "perimesencephalic" pattern SAH. The diffuse pattern bleeds do carrying a small but significant risk of rebleed. Apparently its about 1-3% per year. That is opposed to almost no risk for the perimesencephalic bleeds. You might want to ask your doctors which one you had.

Well, they basically confirmed my original diagnosis of perimesencephalic SAH. First doctor said : perimesencephalic SAH Second doctor : perimesencephalic SAH Third doctor : "not typical" perimesencephalic SAH Fourth doctor (Johns Hopkins) : "classic perimesencephalic" SAH So basically doctors can disagree. One says "not typical" and the other says "classic", haha. I am now done with getting opinions and majority rules 3-1.

This program is available for anyone worldwide, not just in the USA. Not sure why the thread title was changed.

I just wanted to let everyone know about an option for second opinions on their neurological condition. Many major hospitals are now offering whats called "remote medical second opinions". I did mine through Johns Hopkins Hospital in Baltimore, Maryland. They are consistenly rated the best hospital in America. Many different areas of neurology and nuerosurgery are available for second opinions. In Sept 2010 I had a Perimesencephalic Non Aneurysmal Subarachnoid Hemorrhage here in Los Angeles and I was only moderately satisfied with my experience with the neurosurgons here. I was told I did not need any surgery so naturally I was cautious and wanted a second opinion. Basically what you do is go to the John Hopkins website and download all the necesarry forms. Fill them out and mail them in along with all of your written reports from your hospital stay and CD's of all your images of any radiological imaging you had like CT's, MRI or cerebral angiogram. I also included my discharge report as well. The information is then reviewed by the appropriate neurological specialist at the hospital. I received my written report back from them in 10 days. It was 3 pages long and very detailed and very informative. The cost for everything was $550 (american dollars). Here is the link to their website. http://www.hopkinsmedicine.org/second_opinion/neuro/index.html I highly recommend this program. If anyone has any questions please feel free to message me.

Sandi - It appears angiogram negative SAH are a controversial and not well understood area of neurology and medicine. I have read endless studys and debates on perimesencephalic bleeds and their lack of rebleeding and why it is so. There is no agreement by medical experts on what causes the bleeds and they cant explain why there is a lack of rebleeding among the perimesencephalic group. It seems that most doctors think the source of bleeding is a vein or capillary and not an artery like in most aneurysms. Its also believed that there is a drainage problem in perimesencephalic patients that can cause momentary back pressure against what should normally be low pressure veins, thus causing a burst. If you read up on it you'll get some very interesting theories. ** your comment about neurosurgons being rotten communicators is SPOT ON !!! haha when i was in the hospital my neurosurgon talked to me for about 12 seconds combined. when I asked what happened he said "your fine". my follow up neurosurgon wasnt any better. i noticed they seemed to get very offended when you ask them questions and they dont want to bother with answering them thats why i went on my quest for second, third and 4th opinions. most of what i learned though i learned from published studies on the internet.