ANA Discussion Forum
Archive => Archives => Topic started by: alibauer on July 28, 2005, 08:50:42 am
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Wanderer's post got me thinking of my own medical blunder. Here's the situation:
Just over a year ago I had an inexplicable seizure in my sleep, the first and last of my life. The next thing I knew there was a blur of paramedics, an ambulance ride, and an ER nightmare. Having ruled out a lot of other causes, they eventually scanned my brain for tumors (MRI). That came up clean, as far as they told me. I never saw the images myself, and didn't think a thing of it in my exhausted state (seizures really make you tired).
The question is: was the MRI really all clear, or did they miss my tumor? It is a year later and I have a 4cm tumor on my cranial nerve, C4 vertebrae. Either the scan was clear and this large tumor is likely malignant or they missed the tumor altogether. After reading how rare malignant nerve tumors in this region are, I'm starting to think they missed the tumor. If they did, they've imperiled my health, or in the very least, my hearing and nerve function. >:(
We'll see. I have a follow up with my ENT to review the CT scan taken Monday after my MRI revealed the tumor. I had the hospital send my picture records to my doctor for his review. If they missed the tumor, I'm getting my treatment squared away and then going straight to a malpractice attorney.
I guess I sort of want your opinions. Am I nuts or paranoid to be thinking along these lines? Am I crazy psycho for wanting to sue? ???
I'm going to be really angry if there is a hint of malpractice and I don't know how else to make myself feel vindicated other than suing. Anyhow, opinions and advice welcome.
Thanks!
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Yes I agree,
I have gone through everything for 7 months so far and even I didn't think that it was malpractice. So many others want to blame others, while it may be that some mistakes were made in my treatment. I never approached it from a getting even position.
That is why I asked others what they thought. It's good to get peoples views who are removed from the situation.
I was very pleased when I was two days out of my first surgery feeling great and at home. My troubles started later. Even now I just want to be fixed. I also don't want to lose everything I have. So I am hoping for a solution and the ability to get back to work.
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We'll see. It's not about "getting even", wanderer, it's about retribution for treatment that could have cost me my life or at least some quality of life. Plus, if they screwed up and I have a malignancy, the $$ would go a long way toward those medical bills and ensuring we won't be bankrupt.
I hope they didn't mess up, trust me! I hope my CT scan shows no sign of the tumor and that the MRI was wrong. Fat chance on that one. Truth is, I hope they DID mess up. It's not because of the money that would mean, it's because I hope my tumor was there over a year ago, and therefore hasn't grown 4cm in one year which almost always means malignancy. :(
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Of course I'm angry! That goes withougt saying. I will never stop being angry at doctors who have imperiled my life - that is, if they have indeed done this. I think this is normal, as you said. Can't imagine wishing for heart disease.
Thanks a bunch for the comments, you are right on and awesome! ;D
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Just a point to keep in mind...I'm pretty sure the MRI needs to be done with contrast ("dye injection") for the AN to show up on the slides. I know this because my primary doctor ordered an MRI without contrast, but when I filled out the paperwork at the Radiologist's lab they told me I needed to have one with contrast because of the symptoms I had. Thank goodness SOMEBODY knew what they were doing!  Good luck.
R
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Hi , You can have a AN tumer growing for many years at a slow rate. But as in my case I had one growing rapidly. It is not commom but does happen . SO don't worry too much it can be an AN. I am also filled with anger. It is normal to feel the way you do. But it does get easier. I had complications that left my face paralyzed on the left side.The docters SEVERED my facial nerve. And guess what... They told me they don't know how it happened. Anger sucks .But every breath I take, every new day I see ,hearing my childrens laughter,is enough joy for ME ! Keep in mind all thats good and great around you. Especially when you feel down or angry. And always remember that there is always someone worse off.Trust me,I know it is a hard thing to do but try. Good Luck and keep us informed. God Bless
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Goldineye,
Oh my GOSH! I am SOOO sorry that that happened to you. If I were you I would absolutely sue. That's a devastating outcome and they absolutely cut it themselves, accidentally or not. Inexcusible. I don't even know what to say. These are not people that should be performing surgeries. In the very least, they should have to absorb a sharp jump in malpractice insurance premiums as a result of what their carelessness/stupidity/ignorance has done to you. God bless your attitude, and stay strong.
Rhonda,
Not only was my first MRI done without contrast, even though they were looking for the cause of a seizure and from testing had determined that I am NOT epileptic, but they stopped with my brain. I have a hunch it could be argued that they should have looked a little further than just the brain considering toxicology was immaculate and every other test under the sun was run and showed nothing at all. I also think contrast should have been used. I'm sure a good malpractice attorney could at least get us a settlement that would help with the out of pocket stuff. My tumor is pretty big and it makes me nuts that it could have been caught over a year ago and perhaps removed with no or very little loss of function.
Okay, the rant is over. I'm focusing on getting better first and trying to put that ever-so-deserved grudge out of my mind. I think anyone that has to put up with botched medical work and handles it like Goldineye is amazing. However, I think they should get something for pain and suffering, or in my case, for the possible imperiled state of my health and quality of life as a result of carelessness.
Did I say my rant is over? Taking deep breaths... ;) Thanks so much for everyone that's responded - for caring and for being so inspiring!
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Hi, just another story. My first MRI was done without contrast and they said I was just fine. 1 1/2 years later, another MRI with contrast, a 2 cm tumor existed. I never thought about being angry, I was just relieved to know why I wasn't doing well and that it really was"all in my head". I actually had a doctor tell me to see a counselor because he thought I was having anxiety attacks. (I have a different Dr now)
I have also found that sometimes having a larger tumor isn't all bad. The brain has had to adjust to certain nerves not functioning properly so when they removed it, I didn't suffer from many of the post-surgical issues that smaller tumor patients have. I'm 10 weeks post surgery and so glad that my life is moving forward.
This really doesn't answer anything or give you much help but I know how difficult it is to take care of all the physical and emotional parts of the life that you now have to lead and sometimes just knowing that someone is listenig can make a difference.
Take care of yourself first,
Mary
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Mary - I can totally relate to your story, as my doctors (specialists) kept telling me that my symptons were all in my head. They kept wanting to refer me to a psychologist. I refused and kept following my "gut" feeling that something wasn't right. I know my body better than anyone else! My tumor was 3.5 cm and was pushing on the brain stem, when I woke up from surgery, everyone kept telling me I should be dizzy, but I wasn't. Before surgery I had lost 86% of the balance on my left side, so my brain had been compensating all along for the loss. The body truly is amazing.
Glad to see you are on the road to recovery, have a wonderful day!
matti
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Hi Mary and Matti,
Maybe the doctors have a hard time taking us seriously because we are women? I hope that's not true, but I wouldn't be surprised.
I think you are both amazing. My tumor is about half the size of each of yours and I'm completely freaked. I hope some of each of your courage rubs off on me and that I'll be wiser and more able to help others on this site once I'm post-op and my perspective on the whole thing begins to take a real shape. Right now, it's just too freaky to be wise!
Ali
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I searched the messages and came up with this Lawsuit thread. Last night, after I awoke at 4:30, I was having one heck of a daydream taking my ENT to court for malpractice. I really do wonder if I have a strong enough case, or the strength to follow it through, because I'm not one on confrontation. BUT, he didn't order a CT with contrast either. My NA could have been discovered last summer, and perhaps the facial nerve wouldn't have been "awakened" and I wouldn't have so much numbness on my left side, and perhaps more of my hearing would have been saved. When I think about it, it ticks me off and I think, well, perhaps my doctor owes me some damages. I had a very nice speech worked out at about 5:30 a.m.!! People sue for a lot less than that. I don't believe in frivolous lawsuits or clogging the courts with junk, but I have lost something, and perhaps I should be compensated for my loss. But I won't know for sure what that loss is, exactly, until I have my next hearing test, and I don't think my neurosurgeon wants me to do that for 6 months, after things settle down I guess. I just don't know why a specialist wouldn't think of a NA in looking for a diagnosis. Didn't they cover this in medical school?? ???
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I was thinking $100,000 for every 10% hearing loss that should have been saved! ;D
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If I may add to this conversation, Let me tell you twice I have had mri"s and x-rays read wrong. The first time was with my daughter. The radiologist read her x-ray that she had had a heart attack. I believe she was about thirteen at the time. What a shock! My wife was inconsoable, I was heartbroken my two sons were stunned. And my daughter, you can only imagine. We had to rush to UCSF where the doctors were going to operate. Long story short, the docs there reran the xrays. They came to the conclusion it was breast shadow! Breast Shadow! Thank god, the drive back to the Central Valley of California was about two hours. It gave me time to calm down as I was going to go to that hospital and go postal. The second time, after my AN surgery on the one year followup, the local radiologist read it as my tumor had come back. Oh the anxiety and wondering what I was going to do, I thought it was benign, I don't want to have another surgery thousands of what-if were going through my mind. Went to see my surgeon at UCSF, guess what? The doctor read the fat they filled in my tumor site as the regrowth! Whew! Docs make mistakes, that is why they call it "practicing" medicine. It is always, always is worth it to get second opinions. One last thought, if your insurance is HMO, you can't sue. :( Calm down, get second third opinions. Then sort out your options. Hang in there!
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Don't know if I'd ever go through with a lawsuit, but the idea of it was giving me great comfort the other morning! Mistakes are made, I understand. Horrible mistakes can me made. Doctors are human, too. But, I just think he should have ordered an MRI, with contrast. Then I'd have know about this last summer. So, I'll just while away a little anger in my tar and feathering daydreams of what to do with my young ENT (who isn't even working there now, by the way..)
It was just a thought.
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heck, they missed my AN in a brain MRI 3-4 yrs ago.... at this point, for me... I'm not going to bother to sue MGH's butt! I am grateful today that I am fairly healthy, they still found it while it was small enough to easily treat and heck, lawyer's would take most of the winnings anyway....
... but for those of you that have legit "malpractice", my hope is that you have a good atty to fight like heck for you. I know docs are not Gawds, but between radiologist, then the dr's both doing the reads... shame on them.
FYI.. my (old) primary care ordered my MRI last year... I got the report before he did, clearly noting the AN and Chiari.. he called me and said "oh, your films show as normal, no worries"... he's too old to sue. I don't feel like taking his SS as he's officially in retirement now. oh, well......
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I can't remember where I found this about AN legalese-but here goes--
Physicians' Legal Obligations
in treatment of Acoustic Neuromas
by attorney April Kutay
The diagnosis of an acoustic tumor, and ensuing treatment, can be a life-altering event for the patient.  In the hands of competent, compassionate medical professionals, coping effectively with the enormity of a brain tumor is a realistic goal.  However, when an act of medical negligence intervenes, or when a patient is mislead by his physician through the failure to inform thoroughly and completely of risks to treatment, as well as the various alternatives to treatment, disappointments inevitably result. In some instances, the end result is tragically catastrophic.
What should the acoustic tumor patient be entitled to expect in diagnosis and treatment of his tumor?
What standards are imposed by law to govern physicians’ conduct in these circumstances?
Each patient who seeks the attention of a medical professional for symptoms which should trigger the suspicion of a potential tumor should be able to count on:
competent diagnostic attention and a timely diagnosis;
accurate and complete information about the treatment options, and the individual risks attendant to each category of each treatment;
professional treatment.
We discuss all of these below.
1. A timely diagnosis
Each and every patient that comes to his physician with symptoms which indicate a potential tumor is entitled to a thorough neuro-otologic work-up, certain mandatory testing, and prompt diagnosis. Sadly, all too often, the seemingly minor hearing loss, and associated symptoms such as tinnitus (ringing in the ear) or mild imbalance are trivialized or ignored. The world’s literature on acoustic tumor treatment is replete with pleas to physicians to diagnose these lesions at the earliest possible time when the opportunity for effective treatment, and minimization of complications, is greatest. It is not uncommon for a patient to complain to his physician of these early signs of the tumor, only to be dismissed, with diagnosis then taking place months or even years later.
Frequently, a physician who has been negligent in failing to make a timely diagnosis of an acoustic tumor will contend that since such tumors are slow-growing (often only enlarging 1 to 2 millimeters per year), there is no urgency in establishing a diagnosis.  They claim that the resulting delay did not change the patient's treatment options and the risks of complications. As an attorney who has specialized in representing patients afflicted with brain tumors, it has been my experience that this claim can almost always be proven false. With careful scrutiny of the patient’s medical history leading up to diagnosis, as well as a competent review of medical records, it is frequently possible to definitively prove growth of the tumor during the time period encompassing the delay, as well as to demonstrate that as a consequence of the delay, the patients no longer has those treatment options that would have had the best opportunity to preserve their health.
2. Accurate and complete information
The risks associated with the treatment of Acoustic Neuromas are serious, and need to be accurately portrayed to the patient before they consent to a treatment. These risks include, but are certainly not limited to, complete hearing loss in the affected ear, varying degrees of facial paralysis, prolonged and untreatable post-operative headache, new onset or exacerbation of vertigo, cerebral spinal fluid leak, meningitis, cognitive difficulties, and depression.
Very often, the Acoustic Neuroma patient, by virtue of tumor size and tumor position, is a suitable candidate for more than one type of treatment. In many instances, traditional surgery can be avoided by employing the non-invasive treatment option known as "radiosurgery." Where surgery is the preferred option, and/or the patient desires surgery as his primary treatment choice, he may be entitled to choose from a menu of surgical approaches, with each approach offering certain advantages and disadvantages. Still yet, under certain circumstances, the patient may decline active treatment at the time the tumor is diagnosed, preferring to monitor the tumor over a period of time with serial imaging studies.
Because there is no standard treatment which is "right" for each patient, it is well recognized in the law that patients are entitled to be informed of all feasible treatment choices, and the pros and cons of each choice, so that he can make an intelligent decision which best fits his personal criteria and his particular lifestyle. When the information given to a patient is incomplete or misleading, and, sometimes, baldly inaccurate, the patient is deprived of this fundamental right to determine the course of his treatment, and, ultimately, to control the destiny of his health. Wisely, the law, applicable to all states in this nation, appreciates that it is the patient, himself, and not the physician, who must, in the end, live with the consequences of the treatment method employed. It is for this obvious reason that the patient’s preference of treatment among all potential feasible treatment options must be respected and honored.
Unfortunately, it is not unusual that a patient is given incomplete information about treatment options, and is therefore forced to make a critical decision in the dark. Occasionally, patients are told nothing about treatment options other than the treatment method which is being recommended by the physician! Quite often, when dealing with inexperienced surgeons, patients are told of only one operative approach - that approach which with the surgeon is most familiar, without regard for the operative approach best designed to maximize a good result in light of the size and position of the individual tumor in question.
3. Professional treatment
Even when diagnosis is timely, and treatment options, and the risks inherent in treatment, are thoroughly discussed between patient and physician, there are sometimes instances of medical negligence in the performance of surgery itself, or in the response to surgical complications, which constitute negligence. It is important to stress that the mere happening of a bad result does not prove, nor necessarily even imply, negligence on the part of the operating team or hospital staff. Complications are sometimes unavoidable even under the best of care. Only an attorney schooled in the subject matter of brain surgery, in the company of highly experienced medical professionals, are in a position to evaluate whether a patient has sustained an unavoidable complication, or whether a bad result was occasioned by negligent conduct.
The best weapon against falling victim to medical negligence in the treatment of acoustic tumors is the patient who makes an effort to educate himself, and who comes to the physician appointment armed with questions to help him understand his medical status. No physician should be "put off" or offended by his patient’s desire to understand his own medical condition, and concomitant desire to take an active role in making intelligent decisions about treatment. When medical professionals and patients work together for the mutual goal of restoring the patient to health, the spirit of teamwork can accomplish very acceptable results, and, sometimes, results little short of miraculous.
The diagnosis of an acoustic tumor, while at first a shock to any patient, does not have to end with disastrous consequences. On the contrary, when the patient/physician team concept crystalizes, and efforts are combined, the overall experience can be positive, and represent a true opportunity for personal growth.
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April Kutay is a medical negligence attorney who has represented victims of malpractice for the past 16 years. Since the mid-90's, Attorney Kutay has limited her practice to representing patients afflicted with brain tumors, including acoustic neuromas, menigiomas, cavernous haemangiomas, haemangiopericytomas, glomus tumors, pituitary adenomas, and others. She has successfully represented patients in the areas of delay in diagnosis, lack of proper informed consent, surgical error, and negligent medical follow-up for surgical complications. Ms. Kutay’s brain tumor litigation practice is nationally based, and she presently represents patients in multiple states. She is also a frequent lecturer to physician groups and patient organizations on the subject of the role of the law in treatment of brain tumors. Ms. Kutay may be reached for consultation at her e-mail address, ask@goldbergkatzman.com, or by phone  at 1-800-334-4119
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Millert thanks for sharing..very interesting reading!
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great read millert. thank you for sharing! :)
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Millert,
Usually I'm not a big fan of attorneys , but that is an excellent, well written discussion of what all patients should get from Doctors in an acoustic neuroma.
Mark
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Being 8 years post-op now and having had more MRIs and CAT Scans done that I care to recall, (okay, my memory sucks now, but I write everything down ;D)...I can tell you that 1. AN can be difficult to find sometimes - especially without contrast, 2. Just because you had a scan of your head does not mean they scanned the specific part where you tumor was (I have had to get scans done on three different "slices" or angles). When I first saw my doctors before they knew I had an AN, I was told everything from I have an inner ear infection to having a bone scan done on my shoulders because I was having pain from what later turned out to be crushed nerves from the AN. Luckily, I went to an ENT specialist who almost immediately indentified AN after a few hearing tests and she ordered the appropriate MRI with contrasts.
I have had post-operative seizures now and have had so many tests. They have ruled out epilepsy. I have been told that it could emotional (which is a bunch of garbage IMO). There are lots of causes of seizures or seizure-like tremours. Still looking for mine...and my AN is removed.
On another note, proving malpractice is a VERY difficult, long, stressful and expensive process. Every part of your health and mind will be fair game for the defense to use and it will not be a pretty experience. So don't enter into to that path lightly...it may end up "costing" you more than you anticipate.
Brenda
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Well, this was an interesting topic to bring up again. I'm glad I did, because I learned something today. I hope this thread helps others. I don't really plan on suing anyone, because of the time and cost. I was on jury duty a time or two and couldn't hardly handle the strain of that, much less sue somebody. Anyway, I was just curious about it and it brought out that wonderful article! I am, however, going to apply for disability. My husband is printing out all the material for me today. Mainly my work was in retail and I do have a job waiting for me at JC Penney if I want it. But you ALL know how difficult it can be to process things in the stores - and at 60 my brain is older and it is very tiring to work so hard to filter out the tinnitus and listen with the one good ear. I worked with a woman who was deaf in one ear from a swimming accident as a child but she had her whole life to adjust to that and I didn't even know she was deaf in one ear for a long time. Anyway, you can sure tell it with me. I know a lot of people on here have been turned down...but I'm going to go for it. All they can do is say no, and they might say yes. Maybe the age card will come in my favor.
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Sue judging from the guidelines I've seen with Social Security you should be qualified. They take your age into consideration and if you're older than 50 they state on their web site that it would be too hard to retrain you for other employment. I say go for it! Retail would be so hard after all this and the balance issues!
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Yes, I'm going to try for it. My husband printed out some forms at work, since my printer is out of ink. Anyway, I don't see why I can't qualify. Sure be a big help. It's not much, but it's something!! Thankfully I don't have horrible balance issues, and I hope I never do...but maybe that could change. I hope not. But I don't want to be going up some ladder anyway!!
Did that already. 12' ladders! Gads
Sue
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Sue, They took my ladder away! Hope you sail through the process!