Shocking new development

[CROOKEDSMILE]

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

[arkansasfarmgirl]

Well, that's scary.  Explains a lot though, doesn't it?

[Jim Scott]

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

[saralynn143]

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.

[Cheryl R]

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

[nancyann]

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

[sgerrard]

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

[Jim Scott]

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

[sharonov]

Angie, who did your original surgery?  It's not at the bottom of your posts.
Sharon

[CROOKEDSMILE]

Dr.  j. in Pittsburgh.

[sharonov]

Did he use the endoscopic approach?  I was considering Dr. Jho at the same facility for my AN removal!

[CHD63]

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

[lori67]

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

[leapyrtwins]

Excellent points, Lori.

Jan

[saralynn143]

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