I am a 54 y.o. R.N. w/ a HX of Heart Failure in 5/2005-EF 20% @ that time. Concurrent Diagnosis of Idiopathic Dilated Cardiomyopathy (all new diagnoses at that time). Treated w/ standard HF protocol meds (Coreg 25 mg B.I.D., Cozaar 12.5 mg B.I.D., Aldactone 25 mg qd are my basic cardiac meds since that time). Improvement in EF via surface echo up to 60 % @ one time. Most recent surface echo reported ~50% EF. Three heart caths showed no CAD. Exercise Coronary Cath unremarkable except for 2 runs of non-sustained ventricular tachycardia (Cause?). Last surface echo a few mos. ago showed w/out question an atrial septal aneurysm, which was a new finding. I had requested another echo, as I was "not feeling too well." Experiencing quite a few dysrythmia's & some questionable symptoms of stroke, which my neurologist dismissed as being "stroke related." These symptoms included occasional loss of balance, unusual high pitched sounds in my head, occasional loss "midstream" as what I was doing, & increased forgetfulness (w/ this, I had a psychoneurological 2 day, 8 hr work up which resulted in a report that stated that I tested positive for my already documented ADHD & related that high anxiety contributed to these adverse symptoms that I was having). I am a Legal Nurse Consultant & am trained & naturally delve into research, which I have done, esp since my diagnosis of ASA (Atrial septal Aneurysm). I understand that only 10% of ASA's are found on surface echocardiograms (of which I speak, that showed w/out a doubt on my echo). Almost 100% of the professional references that i used in my research states that the size of the aneurysm is an important aspect of how the clinician deals w/ this potentially serious medical condition. Across the board, a TEE (Transesophageal Echocardiogram) is recommended in cases such as mine, as this is the only way to determine the size of the aneurysm, which in my case, quite likely is large, as again, these do not usually even show up on the surface echo. The size of the aneurysm apparently greatly influences a person's already significant increased risk of stroke with this anomaly. Research show that an aneurysm at or greater than (I don't have my notes with me but > .16 or .18 I believe) significantly increases the risk for stoke. I also have documented Sleep Apnea w/ documented heart rates with testing overnite of HRs (Heart Rates) fluctuating between 35 BPM (beats per minute) to 135 BPM throughout the night. I do use a CPAP machine, and have been advised that this (Sleep Apnea) and my diagnosis of Cardiomyopathy and history of severe Right and Left Heart Failure make me a very high risk for stroke (even without the added diagnosis of ASA). I have requested a TEE from my cardiologist at Kaiser (Walnut Creek, CA), but his only response to my request has been that I just need to start on aspirin q.d. to prophalactically avoid a possible CVA (stroke-Cardiovascular Incident). He has avoided answering my request for a TEE- minimizing the situation by stating that apparently this echo did not indicate a PFO (Patent Foramen Ovale) & therefore my risk of CVA was minimal. My question is: Is it reasonable that a TEE be ordered for me, in order to have a knowledge base (& a baseline assessment) as to the extent of my aneurysm? Should I have to wait until I do have a stroke for this to be done (No, I don't think so)? I know that surgical repair of ASA's are not extremely common and yet I have cited references to extremely satisfactory results after this open heart surgical repair has been done. No noted complications or recurrences of neurological impairments (that I have research anyway) have been cited in the literature. At this point I am not in any way requesting something as drastic as surgical repair. I am only asking for further diagnostic tests that seem appropriate to order, given my particular situation and also not stated as of yet-given the mental anxiety that i have incurred since receiving the resluts of this last echo w/ the additional appearance of an atrial septal aneurysm. Again, I am 54 yrs old, a single mother w/ two sons, ages 14 1/2 & 21 1/2. They depend on me and I do not ever want to be a burden to them if something should happen to me that I cannot take care of myself, such is the concern that I have with my current medical condition. Please advise me as to what you feel is highest Standard of Care that would be given in a situation such as mine, as I have tried to thoroughly explain to you.
Lise DeTonnancourt, RN, BSN, CLNC
QUOTE: "He has avoided answering my request for a TEE- minimizing the situation by stating that apparently this echo did not indicate a PFO (Patent Foramen Ovale) & therefore my risk of CVA was minimal. My question is: Is it reasonable that a TEE be ordered for me, in order to have a knowledge base (& a baseline assessment) as to the extent of my aneurysm?"
It is true ASA can indicate PFO (hole in the septum between atria) and apparently your doctor has ruled out any shunt or blood flow through the septum between left and right atria, and therefore no need for further testing.
A TEE would be more precise to rule out PFO with a clearer view of the area in question, and apparently your doctor is comfortable there is no PFO.. But if there is a large, prolapsing atrial septal aneurysm there should be some managing and monitoring as the aneurysm can grow and cause right atrial obstruction. I believe that is your concern and a TEE may not be of any benefit.
Your response to my question re my atrial septal aneurysm is somewhat confusing, though I do appreciate the response. You state that "there should be some managing & monitoring as the aneurysm can grow & cause right atrial obstruction." You follow this by saying "I believe that is (??) your concern & a TEE may not be of any benefit." I don't mean to be rude, but this did not make any sense to me. If an atrial septal aneurysm did need "managing & monitoring," then why would a TEE (Transesphogeal Echocardiogram) NOT "be of any benefit?" This is actually the diagnostic tool of choice in monitoring & diagnosing (!) the presence of & the size of an atrial septal aneurysm. Maybe there was a typographical error in your response to my post??
QUOTE: He has avoided answering my request for a TEE- minimizing the situation by stating that apparently this echo did not indicate a PFO (Patent Foramen Ovale) & therefore my risk of CVA was minimal. My question is: Is it reasonable that a TEE be ordered for me, in order to have a knowledge base (& a baseline assessment) as to the extent of my aneurysm?
A: I assumed there had been medical evidence of no PFO shunting so that was not an issue, consequently, a TEE was not warranted nor benefical. An echo/doppler and sometimes a bubble test can dx left to right shunting, and I thought a less invasive procedure with transthoracic echo could monitor your ASA going forward.
You are correct a TEE would be the ideal test to establish a basis for reference of ASA, and from what I have recently read that is the accepted and best method for ASA measurement.
Had an appointment w/ my cardiologist yesterday, mainly to discuss my concerns re my recent diagnosis of an atrial septal aneurysm on a surface echocardiogram 5 months ago. I wanted to know why he did not think that a transesophageal echocardiogram (TEE) would be a reasonable next step diagnostically---( I preface this w/ the fact that I had asked him, Dr. Gee, at the very start of our conversation if in his opinion, there were significant risk factors associated w/ a TEE. Without hesitation he said that this was not a high risk procedure at all. I mention here that in addition to Dr. Gee's part-time clinical practice in Cardiology, he has also, for years served as the Physician in Chief of our Cardiology Dept, which is an appointed position by the Physician Medical Group here at Kaiser Walnut Creek Medical Center in Northern CA)
I expressed my concerns, stating that I had done quite a bit of research in the most current literature I could find on the topic ASA, (& used only the most reputable of sources for my research, such as TheTexas Heart Institute, The Annals of Thoracic Surgery, The New England Journal of Medicine, Journal of the American College of Cardiology and more...) & that across the board, conclusions were that atrial septal aneurysms of > 10 mm excursion are associated w/ a higher risk of stroke. I told him that I recognized that clinical significance of an ASA has yet to be fully determined & also emphasized that I was not looking for transcatheter closure necessarily. He stated that there is not one single doctor in the world who would ever perform closure anyway. I did not want to argue with him, though clearly if he was on top of this he would see many interventional cardiologists doing this w/ great success. My feeling is that it is too risky to consider right away anyway. I mentioned medical treatments that I had read about & was interested in, such as oral alpha-1 agonists (one of those drugs starting with an "m," but can't remember off hand the name). They are particularly helpful in specific atrial ventricular echocardiographic readings such as mine 5 mos ago, but not necessary to go into. He had never even heard of the use of alpha-1 agonists & didn't know either what they were. The bottom line was that he believed that even if I had a TEE done, "What would we do w/ that information?" He firmly believed that there is no treatment, no matter what the size of it was, did not want to consider the almost 100% agreement in the medical community that embolic events, stroke odds were 8 times more likely in a patient w/ an ASA > 10 mm than a patient w/ an ASA < 10 mm. I also mentioned again the other stroke risk factors I had, particularly migraine headaches, which have been well documented (for years and currently) as being a stroke risk AND now currently documented as very very often (forget the %) being the result of an ASA & anyone who has ever had migraines as I do have, would want some sort of consideration of the various treatment options that are in fact out there- & if there is indication that there is an associated ASA w/ a patient w/ migraine, maybe looking at non invasive treatment such as an agonist med might be worth a try! Also start by a fairly "benign" TEE to make appropriate diagnosis first of interarterial shunting, size etc. Even though Dr. Gee denied TEE being high risk, his concluding statements were that "in no way" would he send a pt for a TEE & take a risk w/ something happening during the procedure when he never felt that there was indication for it to begin with. So, I concluded w/ reflecting back to him what I thought in a nutshell was his final stance on this which was that we do absolutely nothing about this, that monitoring the size, the left to right atrial shunting etc was worth considering & he agreed that that was what he felt. He offered that I see another one of his colleagues for a second opinion & I said "no." I absolutely know how that works in an HMO such as Kaiser & well maybe Dr. Gee is right. I have worked with him in the ER when I was there & he was great, but I don't understand why he also would not agree to any follow up on this for me, even if it was for "peace of mind" for me. It's not hard to figure out that this procedure is probably quite expensive & that there is quite a bit of "looking at" what they (the physicians) order by Upper Management, as more money that is spent in an HM), well I know at Kaiser anyway, the less money there is in Dec & March when the physicians annally receive their bonuses (profits). I know, because I was a Kaiser Physician in Chief's wife for 17 years & this money was always nice to have as extra money that came in for us. The conclusion of this is that Dr. Gee wants me to go to the lab & get blood work that he ordered for me done. Wow. I do not feel that my situation would be treated in the same way if it was the doctor himself or his daughter instead of me who had this same situation. I do not think I have anymore corners to turn in this & I feel like if I sneeze I will have a stroke like the 45 yr old woman I am sure you also read about in the newspaper.45 yr old woman did have happen. That adds one more risk factor to me here in a high allergy region of the U.S.
I agree HMO's first concern (usually? often? sometimes?) is to manage costs, and I have long suspected there are personal incentives as a reward. The arrangement can't be anything other than a conflict of interest, and could health care may not bode well for pts. Part of medical plan provided by my employer many years ago, I was so insured, good health didn't require any medical services...no problems, but I certainly would not wish to be associated with that type insurance and have health problems!
You seem to understand the risks and benefits with the care you deem appropriate, and you have persuasive insight into your condition and the treatment you seek doesn't sound unreasonable.
It is a good feeling to have someone other than myself state, as you did that, the treatment that I seek does not seem unreasonable. It does not seem at all unreasonable to me either.
I need to make an important correction in my last comment above. I meant to type that- ".......in conclusion I reflected back "in a nutshell," what I understood his (Dr. Gee's) stance was.....do absolutely nothing about this.....& that monitoring the aneurysm in terms of its size, whether there was atrial shunting, etc was NOT worth considering in his opinion" ....& as I said above- he agreed that this in fact was his stance on my situation.
I am new to the forum & have not had a chance to review this forum for other information or comments others may already have contributed on this subject, but will do this soon as I think it might be helpful for me. Atrial Septal Aneurysms are apparently somewhat rare & so kind of hard to get much in way of other people's experience w/ dealing with it (that is unless they "do absolutely nothing" about it!).
The archives have links to threads of interest. Also, there is an expert forum that may have an opinion. Generally, there are not any followup questions answered so you may want to focus your question(s) accordingly. Thanks for sharing
For any procedure and/or treatment DENIED by a HMO, the process is to appeal to the plan first then, if decision is upheld (appeal denied), then present case to CA State Dept. of Managed Health Care for a possible IMR (Independent Medical Review) that results in a final decision whether denial is overturned or upheld. Such a review is at the cost of the plan not the member.
Thank you for your feedback re this. I actually probably will go this route, once I take a deep breath with it all! Frustrating, to say the least...I can only imagine what it would be like to be out there as a non-medical professional and having to navigate this for yourself or you loved one.
I have never seen any appeals of bureaucratic decisions to be timely. It seems the defendant has more to gain by stalling. I have been a plaintiff in several lawsuits, and it has taken years to be resolved. Although prevailing, there can be a loss never recovered just based on procedures to stall.
To appeal a medical decision, it seems, time may be of the essence, and to appeal may not be beneficial just based on an individual's medical condition that may need immediate attention.
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