What would you do about this advice from a neurosurgeon?
March 20, 2014 4:42 PM Subscribe
I was diagnosed with 90% stenosis of my carotid artery with dissection near the brain. The neurologist said I should immediately see a neurosurgeon to have a stent put in. The neurosurgeon had the opposite reaction and said I should just go on living my life as I always have, taking aspirin every day and if I have stroke symptoms to go directly to E.R. He also said I was high risk for stroke without the surgery, but if I would constantly worry about getting a stroke, I should just go ahead and have the surgery done.
I really don't want surgery, (does anyone) but everyone I talk to is stunned that the neurosurgeon had such a nonchalant attitude about this condition. Now I don't know what to do. Follow the neurosurgeons advice and just let it go or have the surgery?
Get a second opinion. About anything this important you MUST have a second opinion.
However, I wouldn't write off the surgeon's reaction as nonchalant. There is nothing benign about having a neurosurgical procedure. There are many risks. It's not like having the surgery means that you will not have a stroke. You need to get someone to explain more about the risks and benefits of both approaches.
posted by treehorn+bunny at 4:45 PM on March 20, 2014 [17 favorites]
However, I wouldn't write off the surgeon's reaction as nonchalant. There is nothing benign about having a neurosurgical procedure. There are many risks. It's not like having the surgery means that you will not have a stroke. You need to get someone to explain more about the risks and benefits of both approaches.
posted by treehorn+bunny at 4:45 PM on March 20, 2014 [17 favorites]
I'd get a second neurosurgeon's opinion.
posted by cecic at 4:46 PM on March 20, 2014 [2 favorites]
posted by cecic at 4:46 PM on March 20, 2014 [2 favorites]
I have had brain surgery, and I will nth getting a second opinion. You can ask either the neurologist or the neurosurgeon for a referral. In my experience, they are quite willing to do it. Surgery was definitely the right thing for me, and everyone agreed on it, so that was a positive. In your case, where there is a divided opinion, get more opinions. If you want more details on my surgery (for a condition somewhat different from yours), feel free to memail me.
posted by GenjiandProust at 4:52 PM on March 20, 2014
posted by GenjiandProust at 4:52 PM on March 20, 2014
I would get a third opinion, and then a fourth. Stroke and brain surgery are both too serious to not do so, and honestly if you don't get more opinions will you ever sleep soundly at night?
posted by Houstonian at 4:58 PM on March 20, 2014 [3 favorites]
posted by Houstonian at 4:58 PM on March 20, 2014 [3 favorites]
Second opinion. And, I'd probably also get a third.
posted by quince at 4:59 PM on March 20, 2014 [2 favorites]
posted by quince at 4:59 PM on March 20, 2014 [2 favorites]
You must get a second opinion and a thorough explanation of what the surgery would entail, what the risks are with and without surgery, etc. so that you have more information to base your decision on. You need LOTS of input.
posted by aryma at 5:03 PM on March 20, 2014 [2 favorites]
posted by aryma at 5:03 PM on March 20, 2014 [2 favorites]
And you need a **HUG**!
posted by aryma at 5:04 PM on March 20, 2014 [13 favorites]
posted by aryma at 5:04 PM on March 20, 2014 [13 favorites]
You really need to get a second and then third opinion from other neurosurgeons. I say third because if the second one says to do it, you'll still wonder who is right. The third opinion gives sway.
posted by PorcineWithMe at 5:08 PM on March 20, 2014 [2 favorites]
posted by PorcineWithMe at 5:08 PM on March 20, 2014 [2 favorites]
In case you are curious here is a published debate on whether surgery or medical management is better for asymptomatic carotid stenosis. The first half of the article is the argument from the surgeon saying that surgery is better, and second half is the argument that medical management using medications like statins and anti-platelet medicines like aspirin is better. This is all just for the sake of discussion and illustration and has nothing to do with your particular case and whether you need surgery or not.
As you can see, this is an area where highly educated people may differ in their opinions. Remember that surgeons who don't do surgery don't get paid, so doing more surgery/intervention is a current financial motivator (doesn't mean surgery is always bad, but does give you pause when a surgeon doesn't recommend surgery).
One of the key points in the debate is that in order for the surgery to be justified, the complication rate of surgery must be lower than a certain point. Stroke is a potential complication of this type of surgery (and so is death!), so obviously if you are causing as many or more strokes/deaths than you're preventing, the surgery isn't justified. So particularly for people who have many other medical problems that make surgery dangerous for them (heart failure, respiratory disease, kidney failure, etc), surgery may not be worthwhile. Thus no one can make a blanket statement that surgery is always better than no surgery - it all depends on the risk for a particular patient.
The first physician also argues both that medical management is unreliable (because doctors have to trust patients to take medications regularly for the rest of their lives, which is hard and costs money) where as at least with surgery, you don't have to worry about compliance. He additionally says that it will be psychologically difficult for patients to walk around knowing that they have a carotid blockage that could cause a stroke (something your surgeon alluded to). The second physician suggests that medical management has improved so much over the years that the risk of stroke without surgery is no longer as high as it was when prior research (that current protocols are based off) was done. He makes the point that if most asymptomatic patients were not going to have a stroke because of their carotid stenosis anyway, that surgery is only going to prevent a very small number of strokes and that does not justify all the surgery currently being recommended (ending by not-so-subtly accusing the first physician of being motivated by money).
Hopefully that may help to show you why it is difficult to answer this question, and why even neurosurgeons can have vastly differing opinions on this subject. For a shorter treatment of the subject, this abstract sums it up:
"In asymptomatic patients, or those whose symptoms occurred more than 6 months ago, the benefits of surgery are considerably less. Patients with asymptomatic stenosis treated medically only have a small risk of future stroke when treated medically of about 2% per annum.
If carotid endarterectomy can be performed safely with a perioperative stroke and death rate of no more than 3%, then the randomised trials showed a significant benefit of surgery over 5 years follow-up, with an overall reduction in the risk of stroke from about 11% over 5 years down to 6%. However, of 100 patients operated, only 5 will benefit from avoiding a stroke over 5 years. The majority of neurologists have concluded that this does not justify a policy of routine screening and endarterectomy for asymptomatic stenosis.
Patients known to have asymptomatic stenosis should be advised of the risks and benefits. The trials provide justification for surgery at centres with a proven low complication rate, in asymptomatic patients prepared to take a small immediate risk in exchange for a small longer term benefit. Those that opt for medical management alone should be advised to seek urgent medical attention should they become symptomatic in the future."
posted by treehorn+bunny at 5:20 PM on March 20, 2014 [38 favorites]
As you can see, this is an area where highly educated people may differ in their opinions. Remember that surgeons who don't do surgery don't get paid, so doing more surgery/intervention is a current financial motivator (doesn't mean surgery is always bad, but does give you pause when a surgeon doesn't recommend surgery).
One of the key points in the debate is that in order for the surgery to be justified, the complication rate of surgery must be lower than a certain point. Stroke is a potential complication of this type of surgery (and so is death!), so obviously if you are causing as many or more strokes/deaths than you're preventing, the surgery isn't justified. So particularly for people who have many other medical problems that make surgery dangerous for them (heart failure, respiratory disease, kidney failure, etc), surgery may not be worthwhile. Thus no one can make a blanket statement that surgery is always better than no surgery - it all depends on the risk for a particular patient.
The first physician also argues both that medical management is unreliable (because doctors have to trust patients to take medications regularly for the rest of their lives, which is hard and costs money) where as at least with surgery, you don't have to worry about compliance. He additionally says that it will be psychologically difficult for patients to walk around knowing that they have a carotid blockage that could cause a stroke (something your surgeon alluded to). The second physician suggests that medical management has improved so much over the years that the risk of stroke without surgery is no longer as high as it was when prior research (that current protocols are based off) was done. He makes the point that if most asymptomatic patients were not going to have a stroke because of their carotid stenosis anyway, that surgery is only going to prevent a very small number of strokes and that does not justify all the surgery currently being recommended (ending by not-so-subtly accusing the first physician of being motivated by money).
Hopefully that may help to show you why it is difficult to answer this question, and why even neurosurgeons can have vastly differing opinions on this subject. For a shorter treatment of the subject, this abstract sums it up:
"In asymptomatic patients, or those whose symptoms occurred more than 6 months ago, the benefits of surgery are considerably less. Patients with asymptomatic stenosis treated medically only have a small risk of future stroke when treated medically of about 2% per annum.
If carotid endarterectomy can be performed safely with a perioperative stroke and death rate of no more than 3%, then the randomised trials showed a significant benefit of surgery over 5 years follow-up, with an overall reduction in the risk of stroke from about 11% over 5 years down to 6%. However, of 100 patients operated, only 5 will benefit from avoiding a stroke over 5 years. The majority of neurologists have concluded that this does not justify a policy of routine screening and endarterectomy for asymptomatic stenosis.
Patients known to have asymptomatic stenosis should be advised of the risks and benefits. The trials provide justification for surgery at centres with a proven low complication rate, in asymptomatic patients prepared to take a small immediate risk in exchange for a small longer term benefit. Those that opt for medical management alone should be advised to seek urgent medical attention should they become symptomatic in the future."
posted by treehorn+bunny at 5:20 PM on March 20, 2014 [38 favorites]
I am not going to speak much to the stenosis... but about maybe 6 or 7 years ago I sustained a dissection of my carotid artery with maybe 1/3 closure. It was intra cranial and caused Horner's syndrome as well as severe pain; and I was immediately evaluated for surgery and was told to expect it, but then the path of the artery was found to be too "tortuous" (convoluted) for the surgeon to attempt it, I was told. But for several hours after diagnosis I waited to have the surgery in the late night as an emergency air hung over the place. I am SO glad that I didn't just "go with the flow," though I almost did.
I am glad that they did not do surgery that night, because I like many others have made a pretty good recovery. I urge you to get another opinion and to also do some research. I got a lot and shared a lot of information with a carotid artery dissection discussion group for physically active people, on medhelp.com. Also, there's this facebook group on carotid artery dissections that is a little, perhaps, less "sophisticated" but nevertheless has people from all over who will share their experiences.
I have a lot of links stored away on ICAD (interior carotid artery dissection), but there are surely new ones all the time. I found that the doctors I saw didn't have much experience with it at all.....
posted by randomfan at 7:02 PM on March 20, 2014 [2 favorites]
I am glad that they did not do surgery that night, because I like many others have made a pretty good recovery. I urge you to get another opinion and to also do some research. I got a lot and shared a lot of information with a carotid artery dissection discussion group for physically active people, on medhelp.com. Also, there's this facebook group on carotid artery dissections that is a little, perhaps, less "sophisticated" but nevertheless has people from all over who will share their experiences.
I have a lot of links stored away on ICAD (interior carotid artery dissection), but there are surely new ones all the time. I found that the doctors I saw didn't have much experience with it at all.....
posted by randomfan at 7:02 PM on March 20, 2014 [2 favorites]
It's not that uncommon to have a disagreement because surgeons are more likely to see the worse-off cases that are worth the risks of an operation and recovery, so what looks severe and worrying to your neurologist may be a routine medium-level matter to a neurosurgeon.
Definitely get some more opinions. Ask them about the risks of the surgery and what factors they are taking into account - it may be your age, that they haven't done that particular surgery often, or another health condition.
I had one awful early diagnosis that was ruled out later on by two other doctors and I am SO glad I pushed for more opinions.
I am on asprin and plavix to prevent a possible stroke in the future. The combination I'm on in my particular case is guesswork where the combined higher risk of bleeding probably is equal to the risk of having a massive stroke. However, with bleeding, there is quite a lot they can do to intervene and I'm likely if I survive to have a good quality of life. With a massive stroke, that's much less likely by comparison. If you have the surgery, will your stroke risk diminish enough to outweigh the lowered risk of medication alone? Do you have complications like weight, smoking, etc? These are all questions your doctor should walk you through to understand why.
Stroke risk is weird. There are some risk factors that can be controlled like smoking and diabetes, but there are a lot of risks that you just live with, and some strokes are currently idiopathic until research catches up. Sometimes your doctors are just making a judgement call.
posted by viggorlijah at 12:24 AM on March 21, 2014
Definitely get some more opinions. Ask them about the risks of the surgery and what factors they are taking into account - it may be your age, that they haven't done that particular surgery often, or another health condition.
I had one awful early diagnosis that was ruled out later on by two other doctors and I am SO glad I pushed for more opinions.
I am on asprin and plavix to prevent a possible stroke in the future. The combination I'm on in my particular case is guesswork where the combined higher risk of bleeding probably is equal to the risk of having a massive stroke. However, with bleeding, there is quite a lot they can do to intervene and I'm likely if I survive to have a good quality of life. With a massive stroke, that's much less likely by comparison. If you have the surgery, will your stroke risk diminish enough to outweigh the lowered risk of medication alone? Do you have complications like weight, smoking, etc? These are all questions your doctor should walk you through to understand why.
Stroke risk is weird. There are some risk factors that can be controlled like smoking and diabetes, but there are a lot of risks that you just live with, and some strokes are currently idiopathic until research catches up. Sometimes your doctors are just making a judgement call.
posted by viggorlijah at 12:24 AM on March 21, 2014
One link that I was most happy to find and share was to an article reporting an excellent and informative study on Aspirin vs anticoagulation in carotid artery dissection: A study of 298 patients. I took anticoagulants for three months and my dissection "healed" in six months, though I am still symptomatic. But I have run a few 10Ks since..... :)
posted by randomfan at 5:25 AM on March 21, 2014
posted by randomfan at 5:25 AM on March 21, 2014
Surgeons cut, that's their thing. If a surgeon says they don't want to cut, I personally would take that seriously. The reasons for not cutting may vary between surgeons so that's why another opinion could be valuable. This is not medical advice and I am not your doctor.
posted by meehawl at 10:25 AM on March 21, 2014 [3 favorites]
posted by meehawl at 10:25 AM on March 21, 2014 [3 favorites]
While contemplating this important decision, you should probably also ask any neurosurgeon who recommends surgery to connect you with an anesthesiologist who can talk to you about the effects of anesthesia and pain control. The surgeon will tell you the risks and benefits of the surgery, and may touch on the anesthesia side, but this isn't the full picture. The anesthesiologist's work* will likely be fairly extensive too, and you should incorporate all of what he/she tells you about that in your calculus.
* Can include blocks, spinals, central lines, A-lines, and other procedures. I have no idea what would be needed in your case, but an anesthesiologist would, and your surgeon may or may not know what would be done, and the risks and benefits of each (and their interactions).
posted by Capri at 11:00 AM on March 21, 2014
* Can include blocks, spinals, central lines, A-lines, and other procedures. I have no idea what would be needed in your case, but an anesthesiologist would, and your surgeon may or may not know what would be done, and the risks and benefits of each (and their interactions).
posted by Capri at 11:00 AM on March 21, 2014
As you can probably tell, informed opinion and the latest research on the treatment of carotid artery blockage is not clear-cut. You should try to have your physician (surgeon or neurologist) explain to you, in a way that you can understand, their reason for their approach to your condition. Do not be afraid to ask them to clarify or walk you through their reasoning.
It is also not clear in your post whether you are being offered a carotid stent or carotid endarterectomy. These are two procedures that are typically used to treat carotid stenosis and have different risks and benefits for different populations of patients. Whether these apply to your situation is a conversation you need to have with your physician or surgeon and the internet is no substitute for informed medical advice.
In addition to the neurosurgeon, you may want to talk to a vascular surgeon as well, as they are the surgeons who typically do the carotid endarterectomy surgery and may be able to provide an informed, third opinion on how to proceed.
Best of luck.
posted by scalespace at 10:23 PM on March 22, 2014 [1 favorite]
It is also not clear in your post whether you are being offered a carotid stent or carotid endarterectomy. These are two procedures that are typically used to treat carotid stenosis and have different risks and benefits for different populations of patients. Whether these apply to your situation is a conversation you need to have with your physician or surgeon and the internet is no substitute for informed medical advice.
In addition to the neurosurgeon, you may want to talk to a vascular surgeon as well, as they are the surgeons who typically do the carotid endarterectomy surgery and may be able to provide an informed, third opinion on how to proceed.
Best of luck.
posted by scalespace at 10:23 PM on March 22, 2014 [1 favorite]
'nthing the second, or even third, opinion.
Also, make sure you follow all directions and take any medication faithfully and properly. Good diet, exercise--you know, all the stuff we all should be doing ;)
Best of luck with your health research.
posted by BlueHorse at 4:29 PM on March 23, 2014
Also, make sure you follow all directions and take any medication faithfully and properly. Good diet, exercise--you know, all the stuff we all should be doing ;)
Best of luck with your health research.
posted by BlueHorse at 4:29 PM on March 23, 2014
This thread is closed to new comments.
posted by Hermione Granger at 4:45 PM on March 20, 2014 [18 favorites]