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Surfer34

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Everything posted by Surfer34

  1. tell your doctor that if he is sick of seeing you then thats all the more reason to rule out an aneurysm, he'll never have to see you again
  2. I have learned that doctors dont always make the decision based on whats best for YOU. They have guideliness often based on cost. A CT angiogram here in America costs about $450 and a DSA costs about $3,500. If someone else if paying the bill then they are going to suggest a CT angio. There are a few reasons why an initial DSA would fail to reveal an aneurysm. Some of those reasns are vasospam, technical error, hematoma, or very small aneurysm or interpreter error. My doctor told me that the reason why they didnt repeat my DSA was because I had no vasospam, I didnt rebleed in the hospital and I had no loss of conscious or seizures (in addition to having a perimesecephalic pattern of bleeding). I would sit down with your doctor and raise all of thse questions and see what his answer is. neurosurgons have alot more experience and knowledge than we do. but at the end of the day its our bodies and life and not theirs.
  3. hey riane, the study you linked to wasnt for repeat testing, it was for initial testing in the acute phase (while in hospital). one thing i did was to look at my scans and read my reports to determine if i had a true perimesencephalic pattern of hemorrhage. the definition has changed a bit over the years and with different doctors. i had 4 doctors say i had perimesencephalic and one doctor say it wasnt the typical pattern. if its NOT perimesencephalic then the number of aneurysms revealed on repeat DSA is high, some studies showing over 20%.
  4. sandi - i have wondered before about what effects the radiation has on our brains. from what i have read it should have no effect in the short terms (0-10 years) but long term it will increase the risk of brain cancer, albiet a small increase. riane - i hope you understand that my opinion on which test to have is just an opinion based strictly on which test is better for detecting occult aneurysms. your doctor knows your condition and whatever choice they make you should put the most emphasis on that. there is much disagreement among doctors on follow up testing for angiogram negative patients. i sought 5 opinions for my case and 3 doctors said ct angio is best and 2 doctors said dsa is best. in america the policy varies from hospital to hospital and from doctor to doctor and patient to patient.
  5. digital subtraction angiography = intraarterial catheter angiography = the test you already had and want to have again, lol A few things I have learned from reading about CT and DSA - ct angiograms on the newest generation 64 slice machines are pretty darn accurate now. when compared to DSA for aneurysm detection they are roughly 100% for aneursms largers than 5mm and in the 90% for smaller ones. Even if you have ct as your follow up test you can be assured that your chances of having a missed aneurysm is about 1% or less. New generation MRI machines are now generally considered equal to CT for aneurysm detection but once again they fall off for sensitivity for smaller aneuryms, under 3 mm. However, they are roughly thought to be in the 80% range for those small sizes.
  6. Riane - I would say the catheter angiogram is the test you should get. However, there are risks involved. Therefore, I think you should research the risks of the test vs likely yield of information gleened from the test. In repeat DSA of all angiogram negative patients the yield rate of finding an aneurysm is about 1- 20% depending on various factors. To make a long story short, perimesencephalic SAH has a yield of about 1% and "diffuse pattern" has a yield of about 15%. The general risk of DSA for complications is 1.3 % but those numbers can be broken down into many many categories. The complications are "transient" meaning lasting less than 24 hours, "reversible" meaning between 24 hours and 3 days, and "permanent" meaning......forever, lol. For me personally, factoring in my age and lack of cardiovascular disease I fit into a bracket of .3 % risk of complication and no risk of "permanent" complication. Based on that I decided the DSA test was less risk than the probability of finding an aneurysm. However, the doctors here made it almost impossible for me to get one so instead I had an MRA at 8 month follow up (besides my CT angio at 14 days). There are many studies online about yield of repeat CT vs DSA and also many studies about risk of DSA. Also remember that DSA subjects you to an enormous amount of radiation but personally I dont think its a problem. As far as always wondering if you have an aneurysm, if your repeat DSA doesnt show an aneurysm that doesnt mean you dont have one. When reading the studies on repeat DSA you will see that many people who reveal aneurysms on repeat DSA were from 3rd and even 4th tests. (not to scare you, lol) Im sure though that someone will come on and say statistics dont mean anything though
  7. hey riane, you can head south of the border and get your CT angio the same day and your results the next day if you want.
  8. My orignal neurosurgon said after 1 month I could do "light to moderate" exercise and after 3 months then I would have NO restrictions whatsoever. The neurosurgon knew that I was a competitive bicycle racer and mountain clmiber and surfer and still said I could return to those activities. I just finished reading a book that was mentioned on this site about a doctor who suffered a non-aneurysmal SAH. He started running just a few weeks after his bleed and ran the London marathon on about his 1 year anniversery. Personally I think exercise is a great thing during recovery but I didnt do anything more than walk for about 2 months. Just short easy walks helped alot though. I am back on my bike and in the pool training for a triathlon in december.
  9. hey ericy, i had a perimesencephalic SAH about a year ago. everything you are experienceing sounds normal. you'll find most people on here have similiar stories. is your next angiogram the catheter type or a CT angio ? The chance of them finding an aneurysm is very very small so dont worry about taking either test. The good news is the long term prognosis of this type of bleed is excellent. The chance of it ever happending again is between 0 and less than 1%. Take everything very slowly for the next few weeks and rest alot and relax alot. The back pain will resolve over time, probably in the next 4-8 weeks. I found that short slow walks helped alot. Remember though that recovery from these bleeds is a long term process so dont get discouraged if you have some set backs. Good luck with everything.
  10. I bought the book and I was pretty dissappointed in the chapter about his SAH. He is a doctor so I was expecting a very detailed account of his medical course and such but it was all very vague. For instance he says he went to the hospital and "had scans done". Maybe the book was written for an audience who knows nothing about medicine and doesnt care but as someone who experienced a SAH I wanted more info and detail. Since I was an angiogram negative patient and so was he, I was VERY curious to hear his experiences and what his doctors advised and so forth. He mentions NOTHING except that no source of bleeding was revealed. He also mentions that it took him 8 days to get out of bed to use the bathroom, lol. If anyone is interested in getting the book for the SAH portion dont bother. If you want it for the mountain climbing section then its a good read.
  11. I just learned that my vice president Joe Biden had a ruptured aneurysm in 1988 which was treated by surgical clipping. He then was found to have another aneurysm (unruptured) a few months later which again was treated with surgery. 23 years later and he seems to be doing fine.
  12. I had a CT scan 5 days after my bleed and no remaining blood was detected. It had all been absorbed. Everything I have read says that the blood leaves pretty quickly (3-10 days). Hematomas can stay around for months though. My cousin had a remaining chunk of subdural blood that was pesent almost 6 months after a brain injury. However, I believe subarachnoid blood leaves quickly. Thats how we get the oh so pleasant back pain
  13. I am 10 months post SAH and I am still just doing easy, low intensity stuff. I have biked a few times but very slow and only a few miles. Last month I jogged for the first time since my SAH but it was only a mile, lol. My original doctor told me to wait 3 months before resuming exercise so if you are at 3 weeks then I would really wait and take some more time to recover. I know that at 2-3 months I kinda felt like I had recovered fully and was ready to start charging on the bike and stuff but then I had a few months of headaches and back problems and nausea. To be honest my main reason for not getting back into working out is due to fear of another episode of SAH. I am trying to buy the book of the mountain climber who had NASAH and apparently he ran a marathon about a year after his SAH.
  14. http://www.behindthegray.net/vbulletin/showthread.php?6716-A-Second-Opinion-U.S.A&highlight=second+opinion I posted previously about a remote second opinion I got from Johns Hopkins hospital. You can do it through them from anywhere in the world. If you have any questions just let me know.
  15. yes, or referred to as "non aneurysmal subarachnoid hemmorhage". he claims in the article that his doctors gave him the go ahead to resume all physical activities which is encouraging for people who are angio negative like me. i am skeptical though of his claim that tripping over his dogs caused the bleed. the singer bret micheals also had an agio negative bleed and he claims being hit in the head by some lighting equipement caused his. everything i have read doesnt seem to jive with those scenarios
  16. i suffered panic attacks starting at about month 3-4. they have mostly gone away but i think they were more chemically induced than emotional. the brain is very reliant on chemical balances and the blood dissolving in the brain has to cause imbalances and misfires.
  17. I had an abdominel ultra sound and they tested for aortic aneurysm. After getting 4 CT scans, a catheter angio and 2 MRI's and every vein I have been shot up with some material, the ultrasound was the only test I actually enjoyed lol Hope your test goes well
  18. Anne - I think it would be safe to say that your bleed was NOT caused by massage since you have a known cause which is an aneurysm. The studies I linked to were for NON aneurysmal bleeds.
  19. Waterball - The issue of massages has recently become of interest to me. It is known that neck manipulation and trauma of neck ateries can cause subarachnoid hemorrhages and hematomas. Here is a great research paper written by one of the worlds leading experts on non aneurysmal subarachnoid hemorrhages and his theory that "intramural hematomas" are a cause of some of the non aneurysmal bleeds. http://171.67.112.83/content/75/11/1169.full.pdf+html The reason why I found this so interesting was because a few weeks prior to my bleed I had a massage and the person was very rough with my neck, to the point where twice I told them to stop. Its well documented in medical literature that even minor trauma like a rough massage can cause damage to ateries and vessels. Here is another studt abstract that deals with a similar scenario. A man was put in a headlock while wrestling and it caused a perimesencephalic subarachnoid hemorrhage. http://www.ncbi.nlm.nih.gov/pubmed/19057284
  20. Hi, quick question...was his bleed non aneurysmal ? Also, if it was, did his doctor advise him that resuming lifting weights would be okay ?
  21. The long term morbidity for aneurysmal patients is taken from the studies he cites.
  22. I am trying to find the study right now but one was done to asses that similiar thesis. Basically they wanted to study volume of blood and the effects in known aneurysmal cases and known non aneurysmal. The conclusion was that even when NON aneurysmal patients had a greater volume of blood vs aneurysmal rupture patients, they experienced far fewer complications and disabilities. That has been a major factor in the belief that non aneurysmal bleeds are NOT from an arterial source but rather a low presure vein.
  23. I believe that figure stated differently is : Of all people who survive aneurysmal rupture, about 60-70% have long term morbidity and/or dont make complete recoveries. Its kind of a broad term. The figure of 50-70% is for people who have aneurysmal rupture and THEN rebleeding, the mortality upon rebleeding is 50-70%
  24. yeah i guess one problem is there arent very many people who are angio negative so it makes large studies at a single institution over many years difficult. alot of data is pooled from other studies. given the new technology in the last 10 years apparently fewer cases of angio negative are occuring, thus resulting in fewer missed aneurysms and therefore less rebleeding and mortality/morbidity.
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