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Post by Deleted on Oct 17, 2010 5:04:06 GMT
Have any of you been in a medical conundrum where you went and sought out a second opinion? I am in a situation where I am having to make a decision as to whether or not have a cranial angiogram done that may involve a "highly suspicious possible brain aneurysm",2-3 mm, be "coiled",a procedure that is mildly invasive,and if unsuccessful at that,allow the neuro surgeon to open up my scalp and perform a procedure "clipping" the alleged aneurysm. I had the good fortune,I think,of being offered a second opinion by a team of doctors at the Mayo Clinic,(free of charge mind you),who so far,after talking to one of them,is advising me against the procedure being performed until he and a team of neuro surgeons there can view the disc from the MRI/MRI that was performed in late August,when I received this diagnosis(I had the MRA/MRI performed because I began having headaches,very intense in nature,and my primary physician wanted to rule out having a brain tumor or an aneurysm.) The test came back positive for the aforementioned small "possible" aneurysm. The Neuro surgeon I was then referred to strongly suggests that this cranial angiogram be performed,even though,it is not the cause of my headaches.I have been referred to a neurologist for that but,have not gone,because the headaches stopped right around the time of the imaging test,ironically enough,$750.00,deductible out of my pocket later... He also said that this "aneurysm" should not interfere with any of my daily activities,and that I should carry on as normal without worry and there is no urgency in having the procedure performed. I have sent the disc to the Mayo clinic,for further evaluation,but,the radiologist I spoke with has told me that from the report I read him on the phone,that this "thing" is so small as to not warrant such a procedure,and that 5% of the population walks around with small aneurysms that go undetected,and even the ones that are pose no major threat. The Neuro surgeon here in NOLA is highly regarded,top in his field here in the region,so,I really have no just cause to doubt his expertise. I have no symptoms whatsoever of an aneurysm. I have no idea at all of what to do.
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Post by bjd on Oct 17, 2010 7:00:49 GMT
I haven't been in a situation where I have needed a second opinion, but just because a doctor is at the top of his field in one region does not mean that he is infallible. On the contrary, his reputation might be such that nobody wants to contradict him, even if he is wrong.
As for the rest, my usual opinion is, "if it ain't broke, don't fix it". It might be possible too that surgeons in the States push for surgery because they earn a lot of money doing so.
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Post by onlymark on Oct 17, 2010 7:53:39 GMT
So bjd gave you his opinion first. That means I'll give you a second opinion.
My second opinion is I'd get a third opinion. Not very helpful I know, but if there is a tie, then if it was financially viable, I'd ask again. Just like asking directions in a third world country (sorry, Developing country), ask once, ask twice and when they don't match, ask a third time.
Any problem can be broken down into constituent parts. No matter how important it is, from my poor example of asking directions to brain surgery. Make it simple. If you don't know what to do either find the answer yourself (in this case there's no way you could really) or ask again. Maybe you are swayed by the experience/knowledge of one of the 'answerers', but as has been said, maybe that doesn't count for everything as they also can be wrong.
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Post by spindrift on Oct 17, 2010 11:16:44 GMT
casimra - I am sorry to hear of your dilemma; this is a terrible time for you. I know that the Mayo clinic is one of the best-regarded in the world. Seek as many informed opinions as you can. oh my goodness.
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Post by Deleted on Oct 17, 2010 13:23:56 GMT
Thanks for the feedback and sentiment good people. A dilemma it is,and were I not so obsessive a type personality,it may be easier to deal with. I am a worrier by nature and the added stress of this probably is not a good combination given the potential for this thing to possibly erupt. (At least that's what my mind is saying... ) The idea of a third opinion has crossed my mind,and that combined with what BJD says about opinions from someone top in their field,both pose another dilemma. First off,this second opinion being offered happened to fall into my lap because a dear friend just happens to be dear friends with the radiologist at the Mayo Clinic.The gentleman has generously spent significant time with me on the phone talking about this and most recently offered the option to me of sending him the MRA/MRI disc to review. On a local/regional level,just about anyone I should go to is very unlikely to disagree with the opinion of my neuro surgeon here,as he is so highly regarded,is the Chairman of the Dept. of Neuro surgery at LSU,and has served as mentor and or instructor of most of the other neurosurgeons here in the region. I am not financially able to go shopping around for another neurosurgeon,and it is questionable as it is,how much my medical insurance will even pay to have the procedure performed. The added financial burden only adds to the dilemma. I am still paying off the $750.00 for the imaging test performed that introduced this whole conundrum. And so I await,the further feedback from the Mayo people. My husband and my brother,gratefully,are both in support of a second opinion and advise me to just relax until all the cards are on the table. No easy task for anyone who knows me. How will I know that it's a full deck? Thanks again for the feedback.
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Post by mich64 on Oct 17, 2010 18:56:57 GMT
Hello Casimira, I am sorry to read that this has happened to you. I can however, provide you with my story that might provide you with some support from someone who is in the same situation you are.
After having a childhood full of headaches and fainting spells, as a teenager, my parents were instructed to send me to a neurologist in Toronto. At that time, I was 16, I was diagnosed with an AVM, arterial vascular malformation in my brain, something similar to an aneurysm. I was also diagnosed with Von Willebrands Disease, which is a hereditary bleeding disorder similar to Hemophilia where I do not clot very well. I went home from this doctor visit devastated as I was forced to give up my competitive gymnastic career for the fear if I hit my head and it ruptured combined with the blood disease, I would not survive a bleed. I was sad but at least if I looked after myself and was careful, I would lead a healthy life.
After I married, the doctors then told me they would not allow me to have children, said that I would not survive a pregnancy let alone a delivery. At that time, I sought out a second opinion by one of Canada's leading neurosurgeons, Dr. Drake at London University Hospital. My doctor wrote a letter to him on my behalf and send test results and such to him, two weeks later I was in the hospital in London having a Cerebral Angiogram. Yes, it was an extremely risky procedure and combined with the blood disease, very scary. But we decided to go ahead with it.
I was glad that I went for the second opinion and that I had the angiogram, I now know for sure what I have and how to take care of myself. For me, it was important to know for sure so that I could do as much with my life as I am capable of. If you have any questions feel free to ask anything. If you prefer to PM that is fine as well. I wish you and your family well and take care of yourself. Mich
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Post by Deleted on Oct 17, 2010 20:08:37 GMT
I have never had any reason for a second opinion, but I have heard dozens of stories making it clear that a second opinion is absolutely essential whenever a doctor tells you something either unacceptable or unbelieveable. I have heard some truly incredible reversals of opinion after appropriate tests.
Basically, a second opinion is advisable after seeing a GP or someone at a similar level of non expertise.
In France, we are lucky enough to be able to do all sorts of tests without having to pay, but I can imagine the dilemma of having to pay a fortune for additional tests that won't necessarily elucidate the problem.
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Post by mich64 on Oct 17, 2010 20:49:41 GMT
I have been very fortunate as well living in Canada to have not paid for any of the tests. Having had multiple CT Scans, MRI's, MRA's and the angiogram, I have never had to pay a thing. When my recent brain injury happened, again many of the same tests and second and third opinions and I never had to worry about costs. Casimira, I am sorry that this has to be a concern for you and your family as I know the stress of the actual situation is enough to cope with. Again, if there is anything that I can do for you, do not hesitate to ask. Mich
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Post by Deleted on Oct 17, 2010 21:06:58 GMT
Thank you Mich. That is most kind of you. Sometimes,I think that the stress of having to make a decision about it is more compromising to my health than the actual data collected and advice thus far. I am going to try and put my mind at ease over the matter,but,it isn't an easy task. As I mentioned above,I tend t be somewhat obsessive in nature,and it doesn't help matters I'm sure. I also have a cynical,skeptical side to me that makes me dubious of much that goes on in the field of modern medicine. I have heard some real horror stories over the years. And, my husband worked as a Paramedic for the City of New Orleans for 25 plus years,so,you can just imagine some of the horror stories I have heard from him. Thank you again for your kind words and your candor.
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Post by mich64 on Oct 17, 2010 21:18:13 GMT
You are welcome Casimira. My husband is a Firefighter and has seen quite a bit in his career as well. If you have any questions regarding procedures or technical questions, I can assist. It is difficult not to think about this and to try to give yourself a rest from it, but I do suggest that you try to find something you enjoy to keep yourself occupied for a while and to get some rest as well. Take care Mich
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Post by Deleted on Oct 19, 2010 0:14:05 GMT
Thanks again Mich. I spoke with the kind radiologist at the Mayo clinic this morning. He reiterated his initial professional opinion,that given the very small size of the alleged aneurysm,it is more risky to perform the procedure,than to go on,and as mentioned,"if it isn't broken then don't fix it". He is awaiting the arrival of the imaging disc,to show to his Neurology "gurus". He went on to say,and this was also mentioned,that he has no financial motivation in offering this advice to me,and oft times,a surgeon of any specialty,is very quick to recommend surgery. He also said,that in this day and age of high technological imaging tests etc. so readily available,very,very often "things" show up on scans that have no symptomatology attached to them,and all too quickly,there is the urge to go in and fix something that's a mere minor abnormality at best. This particular "thing" is an incidental finding in his opinion thus far. I am strongly leaning in the direction of not having the procedure performed pending further word from him at weeks end.
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Post by mich64 on Oct 19, 2010 14:36:52 GMT
Hello casimira, I am relieved that you have received an explanation of the findings. I agree, in my experience with people with AVM's, aneurysm and other malformations, many of the times it is best to let them be.
I believe that the science of imaging is surpassing the surgeons as they seem to think anything detected should be removed. It is not always the best decision for the patient and perhaps experimental for the surgeon.
In my case, my AVM is inoperable due to location, therefore no choice could be made. Four years ago they suspect that I had a disturbance in it, they cannot explain how or why, but the resulting condition all traces back to the area of the brain that my symptoms stem from. That is not said to cause you worry, my case it similar to yours but in a lot of ways very different.
Have they told you what area of the brain the aneurysm is located? By asking this question to them you could also ask what would be affected if a rupture or bleed did occur. That may help to relieve your feelings as well. It may be in a safer location where damage is minimal if the worst case scenario occurred. It has been my experience that the more information I had, the more relaxed I became and acceptance was easier.
I will always be available to you for any questions or concerns or if you are just having a bad day. I wish you and your family comfort and peace. Mich
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Post by Deleted on Oct 19, 2010 16:15:42 GMT
Thanks again Mich. Yes,the location of this thing is indeed one of the factors involved,(it's on the left middle cerebral trifurcation region ). I now believe,that given the option,were I to ever be in a situation again,where surgery of any kind was recommended,I would opt for a second opinion,I am that skeptical at this point in time.
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Post by Jazz on Oct 21, 2010 3:52:33 GMT
Have any of you been in a medical conundrum where you went and sought out a second opinion?
Not me. Since reading this, I’ve thought of you so much and it has been difficult to distill these thoughts into a coherent response. I can’t imagine how confusing and frightening this must be for you. Given that I know little of the brain, aneurisms, the whole field really, I have nothing to say, medically. But, I lean to ‘if it ain’t broke, don’t fix it’. Too many people that I know have rushed in for operations and emerged in worse shape than at the beginning.
Without doubt, if this happened to me, I would seek a second and perhaps third opinion. Somewhere there needs to be a cut-off point. You will drown in a tsunami of opinions. Take what you understand as the best, make a decision and follow through. The worst option is to leave yourself in a state of indecision. Once you decide, your depression will recede and you can get on with your life.
The Mayo clinic has an excellent international reputation and I would listen to your friend there. We are fortunate in Canada to have most of these procedures covered by OHIP. It is hard to believe that the US still does not have a decent medical coverage programe. Worrying about the medical issue is more than enough, without the anxiety of how to pay for it all.
This is not the time to be mean and frugal with yourself! There will be years and years in your future to ‘budget’, ‘be austere’, ‘disciplined’, ‘restrain yourself’… Treat yourself as though you were your closest friend. Thank you for taking the ‘risk’ and talking about something so personal. We are often unaware of powerful personal elements that are shaping each member’s life. A forum can be an unexpected source of just the comment that you may need to hear. It reminds me of Blanche Dubois in ‘A Streetcar Named Desire’….one of my most loved quotes from literature, ‘I have always depended on the kindness of strangers’. (for me, this has been true.) It’s great that Mich is listening. She , more than any of us, can understand what you are going through.
Take care.
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Post by mich64 on Oct 21, 2010 15:10:24 GMT
Jazz I completely agree with your comments, very well stated and understood. Once I had all the information possible, I chose the best result for myself and by doing so, it gave me a feeling of empowerment, that I was now in charge of my life again and was able to move this aside and go on with my career, enjoy my family again, travel and it became less and less important to me. I too am extremely happy that Casimira chose this forum to elaborate on her situation. If she is feeling like myself, she felt comfort here. The people in this forum write so eloquently and provide photos that show more than items, situations or places, they show culture, color, warmth. I knew this was the place to try to converse because I felt here, the education is great, but it is the feeling that the members have about these topics whether it be cacti, food, travel, world events or as here medical topics. I know that the members are probably unaware of the impressions that they make on others but my experience has been so powerful very positive.
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Post by Deleted on Oct 23, 2010 23:06:49 GMT
Thank you for your kind words Jazz. As of today,after conferring one more time with the kind people from the Mayo Clinic,I am of the mind that I am going to monitor this finding closely,and opt to not have the procedure performed. I feel relieved and quite comfortable with my decision. Thank all of you who took the time to offer support and feedback during a very stressful time. It means a great deal to me.
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Post by Deleted on Oct 24, 2010 14:59:51 GMT
My mother is getting a second opinion today. After our trip to the emergency room on Friday, she has been in an inexplicable semi-comatose condition. I was called for a second trip to the emergency room around 1 pm. They are doing all of the tests again to find out what is wrong. They are keeping her until further notice, but the doctor told me to call him "around 10 pm" to find out where she will be -- there is a room shortage at the moment due to the holiday period. "If we can't find a room, we'll keep her at the emergency room," he said.
Today, she looked like a dying zombie and it did not reassure me.
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Post by tod2 on Oct 24, 2010 16:09:35 GMT
Oh no. Kerouac, doesn't it sound like a delayed concussion - if there is such a thing? To digress slightly - when I was a very new mom I picked my son up in this contraption called a ''rock-a-by' seat and as I lifted it he slipped backwards onto the carpet but onto his head. The screaming and crying had me rushing like a lunatic to my doctor. He was out. The nurse did one thing and one thing only to see if he was concussed - she grabbed a torch (the slim doctors kind) and looked into his pupils. "He's absolutely fine" she re-assured me. They must have done that with your mother. Looked into her eyes that is. She is in good hands I'm sure, and I hope she doesn't take too long to be back to her old self.
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Post by Deleted on Oct 24, 2010 16:24:49 GMT
Yes, I know all about the delayed head injury deal -- and they obviously do as well. I presume that she has swelling on the brain in the wrong place, and that's why the last place I saw her was the scanner corridor today.
One of the first things they did on Friday was to look into her eyes. They were lucky that I was there, because I managed to get her to open her eyes. She was squeezing them shut because "those people" were bothering her. But I asked her to "look at me" and that was one request that she could not ignore.
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Post by mich64 on Oct 24, 2010 19:01:32 GMT
We all will be waiting to hear how she is doing Kerouac. I know she must be scared, but you being there for her when you are allowed or can be, is the best feeling for her. We too here in Canada have bed shortages, after my dad had his heart attack, his room was a corner in the hallway. I too have been left in the hallway, last Christmas Eve I had an appendicitis attack and my husband sat with me in the hallway all afternoon until the surgeon came in and he was there when I woke up. I will be thinking of you and your mom until I read here how you are both doing. Wishing you both comfort and peace.
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Post by tod2 on Oct 25, 2010 6:09:24 GMT
I was thinking what you said about her going into a deep sleep after she had some icecream - maybe that was also a sign that her fall was a little more serious. I think you know that we are all holding thumbs that your mother recovers fully and hope that it will be soon
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Post by Deleted on Oct 25, 2010 7:05:01 GMT
Well, they kept her in one of the rooms at the emergency section. I'm supposed to call around 11am for the latest update, and then I'll go this afternoon.
Thanks for your thoughts.
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Post by Kimby on Oct 25, 2010 22:44:05 GMT
kerouac, so sorry to hear of your mom's setback. Things have seemed so stable in kerouac-world for so long that this change of events is unsettling, even to a bystander. I hope she comes through this just fine. (Wouldn't it be lovely if a bump on the head caused some of the short circuits to re-connect when she comes around?) Good luck to K2 and his mum.
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Post by Kimby on Oct 27, 2010 17:44:24 GMT
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Post by Deleted on Nov 4, 2010 14:08:32 GMT
Gratefully, I hope anyway,I did not have a cerebral angiogram or coiling, clipping of my brain performed as was scheduled for yesterday at 6 a.m. I have chosen to have this "thing" monitored and retested,imaged in a year,pending no symptoms,that is. Phew!!!
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Post by Deleted on Sept 21, 2017 19:03:58 GMT
Once again, having been diagnosed by one doctor to have an invasive GYN procedure performed, I sought a second opinion which rendered me (she ran two samples to confirm her findings) to opt out of having this surgical procedure performed. The second opinion physician is highly regarded in her field and I am now greatly relieved by all this angst ridden situation.
I cannot emphasize enough how important it is to seek out further advice before consenting to succumb to an unnecessary procedure.
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Post by cheerypeabrain on Sept 21, 2017 20:19:26 GMT
I think that if you have any doubts about the accuracy of a diagnosis or appropriateness of a course of treatment then a second opinion is probably a good idea. We British tend to just follow the advice of our NHS doctors, although generally their advice is good and they have to present all the options for treating (or not treating) a condition
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Post by bixaorellana on Sept 21, 2017 20:35:19 GMT
BIG relief, Casimia ~ thank goodness!
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Post by Kimby on Sept 21, 2017 20:50:04 GMT
Good news casi! NOW can you relax? ;-)
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Post by whatagain on Sept 22, 2017 17:05:42 GMT
My wife is a doctor, I don't think I said it before. Apparently a good one because she was made head of her department (because she is a good doctor, a good person and because she is now one of the oldest and nobdoby wants the job, which is unpaid and demanding if you ask the husband).
We always, always asked for a second or third opinion. For Robin we went to several hospitals in Belgium and 2 in Paris. When he had to undergo surgery we went also to Paris to have a second opinion - our surgeon totally understood our need for it. When things started to go wrong we phoned and emailed people everywhere : US (all mails came with a disclaimer...) Germany, and God knows where. We considered our duty to take the best decisions and for this we needed as much info as possible and we needed to cross examine the available info.
Now my wife is also of the kind who says 'if it is still functioning don't do anything'.
I personally have no opinion of value except to say that I behave for medical things like I do at work : I ask several offers, then have them explained to me. I would never ever take an important decision based on one piece of advice.
My last piece of (non) advice is that a decision valid today can be invalid tomorrow due to other constraints / circumstances. For example we took weeks to decide what operation to do on Robin's arm (we were offered choice of several options, put a fixed prothesis, one that would grow with time, put a bone, etc) and we took 52 seconds to decide to amputate his arm when there was no other choice.
And my very last piece of advice is that once a decision has been taken, we mustn't ask ourselves if it is the good one - until something changes or something new occurs.
I'll drink to your health !
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