ANA Discussion Forum
AN Community => AN Community => Topic started by: badkins on December 19, 2007, 09:47:29 pm
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I was diagnosed in August of 2005 with a 1.8mm AN. Removed in January 2006 trans lab surgery for 14 hours. A few surprises happened when they opened. I the tumor had grown pressing onto the brain stem having to remove my hearing, balance and a 1 1/4" off my cerebellum. During this they did leave my facial nerve in tack leaving some tumor on the nerve.
After I woke up I had some complications and stayed in the hospital for 3 1/2 weeks. Always suffering from extreme headaches and no answers from day one even from when I woke up. I finally stumbled onto a Dr who explained to me what happened. My 5th nerve the TRIGEMINAL NERVE was cut from[all he suction and probing. I suffered in severe pain and deep depression for a year. Now I'm just pissed. I always thought it was my recurrent tumor. One day I was sitting down speaking with a BRILLIANT BRAIN Surgeon. DR.STEINER 83 years old still practicing at UVA> he told me before I was diagnosed "human error has occurred". I have never returned to work again. >:(
I think these Dr's should have been held responsible. Am I wrong?
Beth
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Responsible in what way? You had very complicated surgery for a complicated problem, and were told the 5th nerve was cut. Perhaps there was a communication error w/ you that someone should apologize for. What else do you want.? The Dr's did not give you the AN, and you were informed before surgery that many complications were possible. 20 or 30 yrs ago you would have died from the tumor you had.
Try and move on, the blame game won't help your present status.
Good Luck
Sam
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Beth,
I'm sorry to hear you've had a tough time with your complicated AN. I hope with time you'll be doing better. This forum is a good place to vent when things seem overwhelming.
I've also heard good things about Dr. Steiner.
Regards,
Rob
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I saw your post and understand how (and why) you may feel in this regard
I guess that 95% of these AN type surgeries are
predictable/uncomplicated/no alarms etc
However I may quote the best there is/was
"You make look at 1,000 MRIs - but until you
go inside and look - you never really know what you are going to find"
So true...
An AN may do untold damage over 5 or 10 years before
its existance is diagnosed - in some cases the damage is already
too far gone to be easily repaired
In this case the surgeon/team is left with some very hard
choices to save life - but at a price.
Sure - many may wish a 100% recovery - but sometimes 99%
is just about all that is possible
- and even that takes some effort
The important thing is still to have a good life
- and do your best with the extra time that you have been given ?
Best Regards
Tony
(8-9 OPS/2xGamma/month in a chair/NF2 etc etc etc ?)
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I am so much better than this time last year. Its a slow recovery for me. My headaches never stop , they are controlled by medication. I no longer can work because it cause extreme headaches. I am on SSD. I was only told of the facial paralysis, death, etc.... never of this never warned on this headache thing. I even was on this website before my surgery. I blame myself also . My docs said it was okay to put the surgery off. So I did, when they went in the tumor had almost taken over in just 4 months. They did no MRI to see if any growth had occurred. I guess they didn't need to.
I just want to earn my income again!!!!!!!!!!
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Badkins sometime in order to move forward you need to exhaust all possibilities. The only way to know if you have a case is to talk to a lawyer. I will say once again do not go to any lawyer. You need to find out who is excellent and then listen to what they say. You may want to contact your local bar association or find a mediator in your state they wiil know of a good one. I was told by many Doctors that this is sometimes the only way these Doctors can be stopped.
As for returning to work. My son is on SSDI at 19 years of age. They have a program called DVR I believe this is Nationwide. You can go on the SSD website and they should have contact numbers. They maybe able to help you retrain and maybe go back to work either full or part time. We are in the beginning process so I don't have much info yet. Take care 16
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"THESE DOCTORS" Do you mean like the ones who operated on her for 14 hours!!! Those terrible Drs who would operate so long on a difficult and complicated case. Why those Dr's need to be stopped. Maybe lawyers could do the surgery better.
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WELL, my surgeon told me flat out the headaches were not caused by the surgery...HMMMMMM? I tried to explain to him that I didn't have any symptoms to lead to AN and he stood his ground on the headache issue. I'm sorry, but I was told by my Dr that I would only experience balance problems and here I am with severe pain... So what now?
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Sam,
I'm assuming you're in the medical profession? Tell me why my neurosurgeon failed to do any pre-op? How about post-op? How about 4week follow up , 6 week or 6 month? Okay. Don't get angry until you really know what has really happened. Files were pulled out of his office he got scared and he never called me , never returned calls. I didn't even pull the files. UVA did. My tumor grew back at such a rapid rate Dr. Steiner didn't know what he was treating .
The ENT also did the same thing. I was one of the few in Norfolk Va. they only do a hand few of these procedures that slipped threw. Don't be nasty. Some people do slip true and don't get treated like you think. Like it or not. ;)
Beth
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I was sad to read of your troubles
I guess the real questions centre around what you really want to do
Headaches are real enough - there are whole threads/titles here on the list
that go through the options in terms of medical and "self" treatment
(we have our own headache wizard who I am sure will help)
My thoughts are: it will not really be possible to go forward until
you have some control over the pain
I think this is the key to going forward
Best Regards
Tony
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When I 1st got home from surgery, I was so elated just to be alive. Then the ordeal of facial paralysis sunk in, with no improvement, & I started getting really angry & looked to blame... someone.... of course I got angry at the surgeons, wanting to blame them; but then, after awhile, I realized, like Tony said, they don't know what's really going on until they get in there.... I was going thru the stages of loss.... of my old self. Granted, there are cases where there is neglect, downright poor care (look at Kanye West's mom); but after I was able to look at things I realized my doctors did their best, my facial nerve shutting down wasn't their fault.
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Thanks Tony,
Thanks I am under control for the most part. I do have break thru headaches almost daily but they are kept down to a low roar for the most part. I sleep more than ever and definitely don't have energy. I used to run 5 jewelry stores and do all the buying. I would travel a lot and sell over 1million dollars a year with my own private clientele. I had a thriving career. I tried several times to go back. The headaches were intolerable. I could not put the hours in, look at jewelry in focus or travel. I had company disability, a small private disability policy policy, and SSD. I pay a COBRA insurance of almost 500.00. Add Mortgage, life ,Oh yea I get medicaid or whatever in Feb 2008. So The questions again is asked why aren't the Dr's responsibly at all for any damage left behind and a life and career ruined?
I understand I could have died... I'm glad I didn't I thank GOD I didn't. Even if they said Sorry about this would be okay. But.....They have not acknowledged a thing..............They never even followed up. Not Until my ENT got a letter from my new Dr. stating my Trigeminal Neuralgia. They called for a appointment and he asked to be my Dr. Again at that time did he state it was a risk. Never before.
Oh well. I have my Life ;D , My teenage BOY who is trying to kill me ??? , and my dogs who are always company. I have Great Friends I'm just tired of all of this 2 years later.
Beth
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Sam I'm sorry if I implied her Doctors. I certainly did not mean you. Humbily Apoligizes to Sam and offers popcorn and diet pepsi. I meant the one or two bad apples that give Doctors a bad name. I think even you can say that there are horrible cases out there that should not happen. The Doctor that operated on my son can no longer practice on Pediatric patients due to my son and is no longer at the well known hospital any longer. He was denied priviledges at another hospital and now practices with another hospital. He had many lawsuits that were not available on the web. He checked out fine. He physically changed his informed consent. He also charted that he saw him in his office when he had not. He changed biopsy results. We were lucky we had copies of everything. We were told by all of our sons Doctors that we needed to pursue a lawsuit and believe me when I say I was sick to do it, but we had to do it for my son and future patients. I work for Doctors and bringing a suit was the hardest thing I've had to do, second to almost losing my son. The Dr is still practicing but with time and 4 new lawsuits hopefully not long. 16
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I too have had terrible experiences with drs. I was so frustrated with the care from the ENT and Neurosurgeon. The two of them never had any time for me, never returned any of my phone calls and the neuro got me mixed up with another patient because his internet was down. I need a nerve graft. I really do not think this is the dr for me. They both made me feel like my headaches were a non-issue. Neither could explain why I had them so frequent and so severe.
Drs, lawyers, bankers, teachers, preachers and parents, some are good, some are so-so, some are excellent and some are just bad. When it is you who has had a terrible experience and it has effected your well being it is hard to move on. If my ENT had done the MRI back in May 06 he would not have operated on me blindly to repair a bulging ear drum. I realize Dr are only human but some like the neuro I was seeing have a "God like" complex and when you are dealing with human lives, you have to understand the emotions your patient is going thru.
Pass the buttery popcorn please.....tonight I'd like a glass of zinfandel wine.
Anne Marie
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Many folk here desire to get back as "soon as possible"
its the natural reaction ?
It is vital that you (and they) have got some of the strength
and stammina back first - and have some control over any lasting side effects
- before a full return is attempted .
Basically the setback that follows (if they dont), can be a real downer
If you can understand the time frame here
May - 2005 - I was in a wheel chair and had to sleep mid-day to get through
By July 2005 - I could play three holes - just
By summer 2006 - a full 18 holes was possible
Now 2007 I can do 36 Holes - back to back
(I often out-stammina non-OPs)
I combined a balance/exercise programme
(that got gently harder)
with short breaks to off-set the fatigue
Basically the damaged balance can fatigue you
on a New York Marathon scale
- yet the short 10 min breaks (with eyes shut)
will set everything back to normal
I have now returned to work
- and can do a 14hr shift.
The point is - YOU CAN DO IT
but it may take some time
(and some effort on your part)
My suggestion is sit down and work out a programme
Any exercise from your past (that you enjoy)
ie Yoga/Gym/walking/Swimming/Ballet ?
and resolve to gently extend yourself
It will tire you ....initally
(so plan to have somewhere to crash out ...safely)
But over time your body/brain will correct
and you will get stronger
OK 100% maybe unrealistic - but 99% of your old self is possible
Good luck in your quest
Best Regards
Tony
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One thing I have learned in the past 7 yrs of multiple diagnosis... as much as I was the one that chased down the dr's... as the one who became more educated about my rare conditions vs. the med students that sat in on my dr consults... as much pushing and shoving I have done to try to find the medical help I needed to help cure what ails me (and as many of you know, I have my trifecta... what I certainly didn't hope to have by the age of 40). One thing I have learned.... dr's are not Gawd.
For each time I have been misdiagnosed... for every test and scan and lab work and office visit appt and change of meds, for every insurance co-pmt that has truly affected my wallet and savings, etc.... dr's certainly are not Gawd. Those dr's that I work with now... I have to commend. At least they have the cajones to verbally admit "I don't know" or "I'm not sure but let me check"... at least they have nerve to admit when they don't know something and I have to giggle sometimes when I find out that I know more than them through my research to become the best self-patient-advocate I can be.
Dr's, lawyers, any professional... I constantly remind myself they are not gawd's gift, they don't know it all and they are human. Some are good, some aren't and we all make mistakes in life.
For me, I draw on my inner strength (and on strength provided to me by those I surround myself with in life) and remind myself to "deal" with it. Now, I know it doesn't work for everyone, but in my case, it does.... I just "deal". I have found inner peace to "deal" with what is now in my life that cannot change. I have learned to accept the things that remain with me. I have learned that as much as I fight and tug and pursue and want.... that sometimes it works...and for those times it doesn't, I have accepted things as they are and I "deal". Pursuit of the better if achievable, accept what I cannot change. For me, this has worked.
Just noting how it has worked for me... nothing more, not passing judgements, nothing.....my hope is that many can find inner strength to push back what attempts to weigh them down. Thus, this wonderful support network. If you don't have the strength, know that many of us here do to help you through this struggle and journey. Our shoulders are always here (with a few bad jokes, watered down driniks and endless popcorn) to help you through this time.
Phyl
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I agree with Phyl. Having dealt with doctors all my life, and lawyers for too long in the very recent past, the bottom line is that they are human. They cannot guarantee anything 100% and it's up to the patient (or client) to recognize that. In the case of doctors, they are dealing with various patients, and as we consistently say on this forum "everyone is different". I can't imagine having a profession where I literally hold people's lives in my hands. It must be a tremendous responsibility.
I am not at all saying that doctors and/or lawyers should be irresponsible. I'm just saying that they aren't infallible. In my experience doctors do their best. Sometimes their bests aren't good enough and you have to move on to someone else, but all in all, I have a huge level of respect for doctors.
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I was misdiagnosed for close to 2 years and often wonder how different my outcome would have been if my AN had been caught earlier. I will be 10 years post op this coming July and now looking back on the symptoms that led me to seek help, many of them were very subtle and would often subside for periods of time. I did not have classic symptoms (if there is a such a thing) My hearing was perfect. I can see why some of the doctors dismissed it as an allergy or eustachian tube problem.
6 months prior to my diagnosis my symptoms became quite noticable and I new something was very wrong. 10 years ago the internet did not offer what it does now, so info was very sketchy. I had to rely on what doctors were telling me, but this time my gut feeling kept me moving from doctor to doctor. I was finally diagnosed by my dentist, who called my primary and suggested an MRI. My doctor was appalled that my dentist would do that and proceded to shake his finger in my face and tell me that he will never let a dentist diagnose a patient and how angry he was that I sought treatment behind his back. When my MRI came back showing the AN, I went to the primary's office and proceded to shake my finger in his face and let my feelings be known. So my anger did not come so much from the delay, but more so in the attitude.
I will be having wrist surgery on Jan. 10th and my orthopedic surgeon was not totally clear on my initial diagnosis as it is a rare condition. He suggested that I seek a second and third opinion and helped me in my search. He asked if it was possible that he be kept informed with each doctor and I said "absolutely". All three surgeons consulted with each other. As a patient that meant the world to me.
Unfortunately, bad happens in every occupation, but I try not to let that ruin the all the good. (It's hard to do sometimes though)
Phyl, I've been on this site for many years and I wish you'd quit watering down the drinks :-*
Cheryl
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Phyl, I've been on this site for many years and I wish you'd quit watering down the drinks :-*
it's holiday season... "adult" eggnog is on the menu! :)
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We have been so blessed since our lives changed. We have a stronger bond between all of us in our family. This experience has changed us to our core. We have become better people because of it. Imagine our surprise when a family friend tells us that we have a wonderful son who when asked how he felt about this, he says I have a new normal, I have learned to forgive and my family is everything to me. Forgiving doesn't mean forgeting and some days are very hard. You need to get through those feelings in order to heal and this is a great website for that.
Badkins whatever you need just let me know and hopefully I can help. I have big shoulders.
Yeah I love eggnog. Please no cloves with mine. The smell reminds me of the dentist. Does anyone have any christmas cookies.
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When I saw Dr Rick Friedman from HEI at the ANA Symposium and he asked about my headaches, (mind you this man does a hundred or so of these surgeries a year and this was almost 5 years ago and he remembered me as soon as he saw me) I told him they were still pretty bad, you should have seen the look on his face. He just shook his head and said "I'm so sorry, we did the best we could." And you know, this man is one of the best in the world and I still have Gawd-awful life-changing headaches. He proceeded to explain that when they opened me up, the dura (lining of my brain) was extremely tight. That is the story--they don't know what they are up against till they go in there and they do the best they can. Can I blame him for my incapacitacion?
Now, about shifty paperwork and avoidance afterwards, that is another matter. Dr Rick worked with my local neurologist to try to get a handle on these buggers, answered every one of my phonecalls and emails still reads all my MRI's and participates in my aftercare 5 years out as much as I ask him to.
This is a tough one.......
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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I think we all wonder at times if the outcome of our surgeries (or radiation) was the best possible it could have been ..or..... did something not go quite right and that's why .............I lost all my hearing - and/or have facial paralysis - and/or now live with horrible headaches -- and/or fall over if I turn a bit too fast. The truth is we will never know what really happened inside our heads when the treatment was done ................... and at some point we will have to move on into the 'new normal' and hope that with time things will get better (and they usually do.....at least somewhat).
As far as doctors making changes in charts and covering up facts to protect their "bunns" ....that would set off alarm bells in my head (louder than the tinitus I hear all the time ;) ) and I would get a good lawyer and check things out........... mainly because I would not want someone else to have the same experience with that doctor. Most doctors try to do their best (I know my neurosurgeon did ) to give us the best outcome they can .... but if the doctor is unethical .... I wouldn't want him/her working on anyone else.
Margaret
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Hi All,
I hope everyone had a Happy Holiday!!! Just got back from my ski trip. I thought I would try to ski again but that didn't quite work out so well. Balance on skis is Okay but looking over my shoulder and coming back makes me dizzy then I loose my balance. Anyway I'll keep trying. Thanks for all the comments , I am seeking a new neurosurgeon at this time. I am moving on with life. There is a 2 year statue of limitations On January 10 2008, I will be at 2 years. As everyone said I am alive if I wanted to pursue my doctors I wouldn't have waited this long. I will always wonder like Marg just said.... what happened?..... Anyways "HAPPY NEW YEAR TO EVERYONE !!!!!" 2008 will be better than 2007 may we all have less headaches this year and keep them down to a low roar. ;D
Beth
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Amen to the 2008 less headaches wish.
Margaret
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I'm on board with the hope of a new year better than this last one.
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Hi, Beth:
I'm so sorry to read of your unfavorable post-op experience. I hope this forum is of some help to you. We try.
It appears as if there might have been some questionable actions taken by the doctor following your surgery. It is probably worth pursuing with a reputable, experienced attorney who knows their way around the medical profession and how to deal with recalcitrant physicians who use 'patient privacy' and/or the rightly hallowed but occasionally abused 'doctor-patient-relationship' as a shield to obscure unpleasant facts that expose possible malpractice on their part at a detriment to your well being. However, as Phyll stated, doctors are not omnipotent or infallible and these AN surgeries are highly complicated. Less-than satisfactory outcomes do happen. The question is whether it was unavoidable or due to physician error. The furtive actions of your doctor post-op and his failure to follow up with you at all is problematic, at best, and indicates a desire on his part to avoid you. The question is: why? That is what an attorney may be able to discover. However, it could take quite some time so if you choose to file a lawsuit, patience is absolutely necessary. It may take years, literally, to discover what actually happened and more importantly: why it happened. It could have been unavoidable and the doctor is simply embarrassed and frightened that he'll be sued. His avoidance of you and record-tampering don't bode well for his intentions and he has only himself to blame if you do decide to sue him.
Fortunately, I had a very caring, concerned and skilled neurosurgeon who kept me informed all the way - and did a remarkable job. He visited me in the hospital (5 day stay) and called when I came home to check on my condition. I've seen him every six months since my successful surgery and he always conducts a cursory neuro exam and has me get a 'fresh' MRI scan. My AN is in necrosis and shrinking. We both share in the good news and I always give this excellent medical professional his due. He is as modest as he is skilled and says he just did his job. His name is Dr. Issac Goodrich. Even when my 'AN experience' is a distant memory, I will never forget him. I also realize that I was beyond fortunate to find this doctor...I was blessed.
I trust your condition will improve and that you can regain some semblance of normalcy in the near future, which is always our goal. Let's hope that 2008 is a better year for you than 2007. Please know that you'll be in my prayers and probably the prayers of many others who read your post. We wish you all the best.
Jim