ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: CROOKEDSMILE on July 02, 2009, 08:57:10 am
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I had my MRI's reviewed by two different neurosurgeons to help me better understand my swallowing/choking and voice problems 2 years after surgery. Both doctors upon reviewing the records and films said...............
BRAINSTEM STROKE during my surgery.
Now that I'm reeling over this new diagnosis.....by the way...the doctor who did my surgery said it wasn't a stroke..............I now have questions.
Does the facial paralysis recover differently for a stroke vs. traction/trauma to the facial nerve?
Whew.....alot to think about 2 years after surgery and to be told this. Why would the operating physician lie about the stroke when two other neurosurgeons said it was definately a stroke?
Today I am thanking my lucky stars that I can now eat without a tube down my nose and can walk. Have full use of my arms and legs. Can see, can talk (not a strong voice but nonetheless), but am blown away by this new development.
I remember the therapist who came to my house immediately after surgery saying that treatment for a stroke with facial paralysis would be different than treatment for facial nerve trauma. Now I feel like the therapy I've done for the last 2 years may have not been the "Right treatment" for me. Confused. Will have lots of questions when I go to Vanderbilt in August for botox clinic and to see my facial retrainer.
Thankful to be alive,
Angie
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Well, that's scary. Explains a lot though, doesn't it?
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Angie ~
Your thread title is dead-on...this is a shocking new development and yes, it may help explain a lot that you've had to deal with. I suspect that your neurosurgeon either didn't believe you had a brainstem stroke or was simply attempting to avoid any legal liability if he admitted that you did, although I'm skeptical that he would actually be legally liable because we do sign consent forms listing all the dreadful things that may occur during the surgery and I'm sure brainstem stoke is included in the list.
Frankly, this is an issue for you to discuss with your doctors. As patients, we simply don't have the depth of medical knowledge to advise you with any credibility.
I'm pleased to learn that you're doing better and retain your positive outlook. I hope you'll soon have the information you need to continue your recovery - with the proper therapy.
Jim
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Wow, Angie, I don't know what to say. What did the neurosurgeons see on your MRI that clued them into a brainstem stroke?
I join you in being thankful that you are recovering well. I guess that does explain things such as the swallowing problems that I have never seen anyone else experience.
Do you mind if I post this at the HFS site? I know there are those who are still interested in your recovery. (Ann Riggs comes to mind.)
Sara
P.S. Keep in mind that you may have had facial nerve trauma in addition to the brainstem stroke. Your therapy may not have been altogether wrong.
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Angie, You might even ask if the facial paralysis is from the possible stroke. I know I have seen a couple brainstem ones and I don't remember them having any facial problems. They can be very hard on a person so you are lucky that you have recovered like you did. Too many drs have their own opinion which is not always right or is the same as another dr. Happens way too much. I hope you do get the answers you want. Cheryl R
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OMG Angie ! I've had problems since my surgery 3 years ago, like when the doctor asks me to swallow, it takes quite a long time before I can do it. on command It never was like that pre-surg. My voice has also changed - I think it's because I have a partially paralyzed vocal cord - the paralysis extends into the eustachian tube.
I certainly can relate to 'lucky to be alive' - Amen sister.
Always good thoughts, Nancy
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I am not happy to hear this. >:(
You would think that something like a brainstem stroke was all or nothing - either you had one or you didn't. Yet there are doctors debating it two years later?
I have no idea how this affects the facial retraining question. I hope you can get some definitive answers. Soon.
Steve
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I love life. I love my kids. I am glad to be alive.
Your affirmative, optimistic outlook as you face some daunting obstacles is an example to us all. Good bless you, Angie.
Jim
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Angie, who did your original surgery? It's not at the bottom of your posts.
Sharon
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Dr. j. in Pittsburgh.
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Did he use the endoscopic approach? I was considering Dr. Jho at the same facility for my AN removal!
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Angie .....
After your revelation of who your doctor was, I felt compelled to do some searching myself (see my signature). In my admittedly somewhat limited search, I can find no evidence of specific lawsuits against Dr. Jannetta, except for the quote (repeated many times over in various places) by Carol Levy in her book ..... same quote but no documentation or reference to details of any of the "13 previous lawsuits."
I can certainly understand your extreme anguish in the outcome of your surgery ..... and I do not want to minimize that in any way! On the other hand, I hate to see a doctor be the victim of hearsay.
Dr. Jannetta did my MVD in 1994 when he was still at UPMC, assisted by Dr. Thomas Lovely (who is now in Albany, NY). I knew going in to surgery that residents from UP frequently did the actual surgery. However, I also knew that since my surgery was in July Dr. Jannetta and Dr. Lovely would be the only surgeons since all of the residents were on vacation. Although I now know that I probably had vestibular nerve damage done during that surgery, I had complete and total relief from the horrible trigeminal neuralgia, which has never returned.
Please PM me if you want ...... as I'm not sure this forum is the place to continue with this.
Clarice
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Just wanted to mention that any time you're a patient at a teaching hospital, you're going to have residents, interns, students of some sort - doing procedures. That's how they learn. That doesn't mean the surgeon signs off and heads to the coffee shop or anything - he just supervises the student - but he's still in the OR and still very much in charge. I like to look at is as having 2 sets of eyes on the patient, instead of just one.
And that's all I have to say about that. :)
Lori
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Excellent points, Lori.
Jan
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I can see both viewpoints here. Dr. Peter Jannetta developed a surgical technique, microvascular decompression, that has relived thousands of hemifacial spasm patients of incessant twitching and even more trigeminal neuralgia patients of excruciating pain. As one of the hemifacial spasm patients I owe him a debt of gratitude. However, when it came time last year to choose a neurosurgeon, I decided I was not comfortable with an 85-year-old surgeon. I instead selected Dr. Ken Casey who trained under Dr. Jannetta (and for that I also thank him).
On the other hand, even the most brilliant doctor can make mistakes. I understand Angie's devastation when she woke up with facial paralysis and, in her case, inability to swallow, particularly since she does not feel the risks were adequately explained to her. I can't even imagine what it was like to find out two years later that she had suffered a life-threatening event that she did not even know about at the time. I find it perfectly understandable that she is thankful to be alive yet simultaneously infuriated at the outcome and repercussions of the surgery.
I guess what I am trying to say is that we do the best we can with the information we have at any particular time. Even though I chose a very good surgeon, relatively young and trained by the "father of microvascular decompression," I still suffered facial paralysis. I do feel that I had a good understanding of the risks going in, and Dr. Casey has been great in staying in contact with me after. In fact, he told me that he couldn't count my surgery as a success because of the facial paralysis.
Angie, hang in there. I have seen you taking great strides into accepting life on your new terms lately, and I look forward to seeing that continue. I'm glad to count you among my friends.
Sara
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Again. Back to topic. Just glad to be alive. God has a purpose for me and I want to be sure that I make him proud since I've been given another chance and have come so far! All of this has really brought me closer to God and I believe everything happens for a reason. I'm at a point in my life where I have accepted my outcome but was a little shocked after being told 2 years ago by the operating doc. that I didn't have a stroke to now it was a brainstem stroke by other doctors. Just a little adjustment period here but I'll get over it and it will pass. I've also met ALOT of WONDERFUL friends on this forum that I wouldn't give up for the world so for that alone I am so thankful. I am a strong girl and this experience has shown me that I can overcome any obstacle with faith, hope and prayer. God is on MY side and life is good.
Peace and God bless America. Tomorrow is my 2nd year anniversary..surgery date.
Angie
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I've heard wonderful things about Dr. Jho. Great choice!
Angie
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Saralynn,
I'm sure you've demanded explanations as to why the paralysis happened. What did the doctor say? (I typed your name into the search bar but the first post that came up was last Sept., 3 mos. aftr the surgery. I'm sure there are earlier ones that explain, but I can't find them. Sorry.)
The reason I ask is that I have a relatively small AN with Trigeminal Neuralgia, and have considered asking if an MVD can cure the TN and maybe leave the AN alone, thus saving what hearing I have left, facial nerve etc. If an MVD has the same risks then I may as well do them both together.
If I were as pretty as you I wouldn't worry so much!
Sharon
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Hi Sharon, wow, TN and AN together. That has to be tough. I think you are wise to ask if they can be addressed at the same time. It will probably depend on what the best approach for your particular AN is. I know that an MVD for TN is typically easier and carries fewer risks than for HFS (because the auditory nerve runs parallel to the facial nerve so hearing loss is much more of a risk).
My surgeon explained, as best he could, what happened with my facial nerve the day after surgery. I asked him about it in the recovery room but he was afraid I would not remember our conversation, so he said we would talk about it the next day. He told me that my nerve was responding to the interoperative monitoring during the entire procedure, so he could not explain the paralysis completely, but he felt that my facial nerve did not like being manipulated from the outset. We had talked about the possibility of paralysis during my pre-op consultation. He put the risk at 10%, with 10% of those never having any recovery (thus a 1% chance of total, irreversible paralysis). He also said he had a "bad feeling" about my nerve, and at my post-op follow-up told us about all of the surgical options if my face did not recover, even recommending a neurosurgeon in my home area. We correspond via e-mail every three months or so and he is delighted that I am recovering function. Of course I am not thrilled to have fallen into the facial paralysis group, but I am satisfied that I received full disclosure and I am confident that Dr. Casey did the best job he could have done and am happy with the effort he puts into keeping in touch.
When will you next see your neurologist or neurosurgeon? I will be interested in what you ultimately decide to do, and wish you well.
Sara
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Angie,
I was sickened to read your experience. In fact I had to wait a day before I wrote a reply. :(
A doctor has a responsibility to ALWAYS be honest and up front with their patients… it is an expectation that goes with their profession. They are placed in a position of ultimate trust- and evasiveness is no excuse. His behavior jeopardizes the respect for all physicians- this is why “colleges of physicians� have a code of conduct… and a governing board. If you feel that other patients could be placed in the same position, as yourself, and he a risk- you can always file a report with the College of Physicians that he is certified with. Remember there are still excellent physicians out there- but it takes one, like the one that you have described, who discredits this very noble profession.
You are a brave woman. The clock cannot be turned back and you are wise to “keep moving forward�.
DHM
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Hi Sarah,
I'm going to see my original neurosurgeon as soon as I can get an appointment. He's one of the planners for the upcoming symposium here in Chicago, James Chandler. I'll also talk with the guy at House and the one at SBI. More and more questions come up on this miserable journey, and I will bug these guys until I'm at least 90% sure I 'm making the right decision.
The other facility I was about to look into is the one you went to, though with Dr. Jho who does endoscopy. Think I'll mull that one over a bit.
By the way, your daughter sounds like a real sweetheart.
Sharon
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***NEWBIES - Please note that this is NOT a common thing that happens in AN surgery - I don't want to freak anyone out here - this is VERY rare!***
I was not told either about my stroke - in fact, he NEVER admitted to this. His colleague who was in the OR off and on (& her guy was there the entire time monitoring my nerves) let it slip to my brother when she came by one morning and he was the only one there. In fact, her exact words were "She's looks pretty good for what all happened..." When Mike began to question her & she realized we had not been informed of anything, she clammed up real fast and couldn't get out of there quick enough. At my one year check-up (after coaching from my SIL who is a nurse), I said to the Dr., "I realized that you saved my life & for that I am VERY grateful...I am NOT one to sue, but for my own peace of mind, I would like to know exactly what happened during my surgery..." He said that nothing at all happened - something my SIL had warned me that he probably would say if he hadn't said anything by then. In my case, a blind person would have been able to see that I had suffered a stroke since I totally reverted back to my childhood, had to relearn how to speak, walk, write (this was a biggie since I taught 1st grade - however, I have PERFECT D'Nelian handwriting on "highway" paper since I had to relearn with my kiddos! ;D I still write on the board with my left hand b/c it is so much faster!) - basically everything. I do everything now with my LEFT hand (non-dominate), including putting on eye-liner, mascara, & other personal hygiene needs...LOL - ladies, you should try some of this sometime if you are ever bored & would like a challenge! ;D I was not allowed to drive again until my reaction time on a simulator was under a certain speed...I also remember that they would time me writing my signature - I was so happy to get under a MINUTE!!
I certainly don't say all this to make everyone feel sorry for me - I have a great life & have dealt with all of this for a LONG time! I just went with it & NEVER looked back...Would I have liked for the Dr. to tell me what happened? Yes, but it really didn't matter - he saved my life and I had a LOT of living to do (still do!) and for that I am thankful! Guess that denial by the surgeon sometimes happens to the best of us but we just have to live our lives the best we can...and be grateful for all we have.
K ;D
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***NEWBIES - Please note that this is NOT a common thing that happens in AN surgery - I don't want to freak anyone out here - this is VERY rare!***
K ;D
Kay -
I think this is a very important point. While we each have different AN journeys, strokes are very rare indeed and that's something major to point out here. You are a perfect example of what can be overcome if you just set your mind to it.
I think I'll pass on applying makeup and dealing with personal hygiene with my left hand, thank you very much! I can't even imagine!
Jan
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"Just wanted to mention that any time you're a patient at a teaching hospital, you're going to have residents, interns, students of some sort - doing procedures. That's how they learn. That doesn't mean the surgeon signs off and heads to the coffee shop or anything - he just supervises the student - but he's still in the OR and still very much in charge. I like to look at is as having 2 sets of eyes on the patient, instead of just one."
Lori.
Lori I am a nurse too and KNOW how things are to be done. Your description sounded picture perfect but this didn't happen. I'm not sure what happened in my case because I was 'asleep' lala land but Here is a prime example...........in one particular case the doctor was to be doing the surgery or at least supervising it and he was not even in the hospital the day of this person's surgery. Ghost surgery is what this is called. My attorney in Pittsburgh told me about this case and the person DIED and it happened to be a dear friend of his.
Kay,
I would rather know upfront what happened than to be lied too. All my surgeon could say is that all of my complications were a "MYSTERY". After 2 years of still choking on food and drinks and other problems I had to get answers. These other surgeons knew immediately that it was a brain stem stroke by looking at the MRI's. WHY LIE? I'll never understand that. AND it happened to you too.
Kay...........by the way.....the bubble picture that you took on your site is fabulous. You need to sell it. It reminds me of my childhood...carefree days.... and would look beautiful blown up. You are so talented.
Angie
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OMG, Angie. I am so sorry.
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Just for informational purposes: my neurosurgeon is located in New Haven, Connecticut (about 30 miles from my home) and with his vast experience could easily secure operating privileges at the nearby, prestigious Yale Medical Center. He chooses not to do so and operates out of a smaller - but well equipped - New Haven hospital - The Hospital of Saint Raphael. His 'junior partner' (another neurosurgeon) is a part-time surgical instructor at Yale School of Medicine but does not operate out of Yale. I asked my doctor why. He told me that Yale is a teaching hospital and he would have to allow residents and interns in the OR to assist when he performed AN surgery. He went on to state that when performing intricate, demanding AN surgery, he felt that - in his words -"the OR is no place for amateurs". That cemented my decision to hire him to perform my AN debulking surgery. My faith in his expertise was amply rewarded.
This is strictly anecdotal and proves nothing but I always thought it was telling that a highly experienced neurosurgeon who specializes in AN removals chooses not to operate out of a prominent local medical center because he doesn't want to subject his AN patients to the slightest risk. Of course, Yale Medical School turns out many fine physicians every year and most local surgeons have no reservations about operating out of prestigious Yale Medical Center. Still, I respected my surgeon's decision not to work with "amateurs". I think it showed a great respect for his AN patients. Considering my good surgical outcome and some of the accounts of folks who didn't have such good surgery outcomes, I'm just as glad my neurosurgeon allowed only fully experienced professionals in the OR when he performed my surgery, including his hand-picked nurses and technicians. Again, my individual experience and the choices my doctor made regarding his OR personnel is subjective and anecdotal and should not be considered any more than that. I offer it only as information, not a guide or commentary on neurosurgeons, surgical Residents or interns - who clearly need experience and hands-on training at some point. I'm just relieved that they didn't happen to get it while working inside my skull - and I thank my doctor for that.
Jim
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Jim -
while I can totally understand your doctor's preference, I can also see the other side of the coin on this issue. Docs learn not only from books, but from observing and assisting other docs. And as we continuously point out here on the forum, experience - and lots of it - are key elements of AN treatment.
If no one wants to allow residents or interns in their OR, the future of AN surgery IMO is in peril - as no one lives (or performs AN surgery) forever - even the "greats".
I'd imagine that even HEI - who some feel is "the best" place for AN surgery - follows the practice of having residents and interns involved in AN surgeries, but I could be wrong.
In my case, there was a resident/intern in the OR with my neurotologist and my neurosurgeon. He introduced himself to me before I was put to sleep and told me he'd be in the OR with me and my docs. I never thought to ask him what he'd be doing there, but I really didn't care. I know my neurotologist is extremely picky about who he will work with - he only works with one neurosurgeon - and my neurosurgeon only works with certain anesthesiologists. So I was extremely confident that they weren't putting me in any kind of "jeopardy".
I don't know 100% what the resident/intern did in the OR, but I do know he was responsible for my fat graft. He also came to visit me each and every day I was in the hospital - just as my neurotologist and neurosurgeon did. I personally felt it was great to a) be a teaching experience for someone and b) have another pair of eyes looking out for me.
As Angie pointed out, "ghost surgeries" do exist, but they are an unfortunate exception; not the norm.
Jan
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This thread give me so much to think about, and be thankful for. I had problems chewing, swallowing, and talking after surgery. I was never given a reason for them. Makes me wonder. . . but like all of you, I chose to move forward. I have way to much to do with the rest of my life. But it angers me that people are lied to when they are most vulnerable. That's just not right.
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what is a brain stem stroke, is it the same as other strokes you hear about people having.
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What it is a brainstem stroke? By wise Geek .com
http://www.wisegeek.com/what-is-a-brain-stem-stroke.htm
Ohio state PDF
http://medicalcenter.osu.edu/PatientEd/Materials/PDFDocs/dis-cond/stroke/Brainstem-Stroke.pdf
Prevention of a brain stem stroke.
http://www.livestrong.com/article/13263-prevent-brain-stem-stroke/
National Stroke Foundation
Explains the different types of strokes
http://www.stroke.org/site/PageServer?pagename=EFFECT
DHM
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Thanks DHM - I was wondering about this...
K