Shocking new development

[CROOKEDSMILE]

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

[CROOKEDSMILE]

I've heard wonderful things about Dr. Jho. Great choice!
Angie

[sharonov]

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

[saralynn143]

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

[4cm in Pacific Northwest]

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

[sharonov]

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

[Kaybo]

***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!    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!   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

[leapyrtwins]

***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

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

[CROOKEDSMILE]

"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

[LADavid]

OMG, Angie.  I am so sorry.

[Jim Scott]

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

[leapyrtwins]

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

 

[epodjn]

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.

[jazzfunkanne]

what is a brain stem stroke, is it the same as other strokes you hear about people having.

[4cm in Pacific Northwest]

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