5 years post op and 2 more surgeries on the horizon after 5

[Mei Mei]

In brief    I have been having spasms at the non surgical side of my neck again since 9:10 the other night and once again going down my throat and choking me.  This has happened 3 times and about 5 times in the past year

It's scary.
I saw my pulmonologist last Thursday and he sent me to a neurosurgeon in  Virginia.   He ordered another 3D CT scan and said it was…maybe trigeminal and the peripheral nerve doc should know but I forget exactly.   He said that the previous neursurg. that said I didn't need a plate to replace the one one that was infected with MRSA was wrong:  and "You believed that?"  He said I should get the damaged peripheral nerves taken care of before it is beyond peripheral but I forget his exact words and to follow up after I get the lidocaine injections and then the botox injections for the pain to make sure the surgery will work.   I don't know the time period but should be about a month.  The month is hard but so is the pain.   I had acupuncture to help in the last two weeks to help with the anxiety from the pain.

I will see the neurosurg. after the CT scan on Wed.  The ice pick pain up the surgical side persists as well as down the neck and shoulder.   This is all left over from the original AN surgery.

I don't know how at age 66 that I can continue for another 20 or 30 years like this.   Unfortunately longevity runs in my family.

My main artery in my retina and surrounding arteries are bleeding from hypertension and perhaps the pain and or problems with my daughters.    My older daughter told me to stop having so many surgeries.   She doesn't know as much about medicine as I do as a former CRA for a pharmaceutical company related to Genentec and Boeringer Ingelheim and an editor in a lead article for the New England Journal of Medicine.   There were so many good things to say about me in my career. I was a professional and not the dummy that my original surgeons thought I was.

I think according to the neurosurg he might put in some calcium in to protect the dura because "and you believe that???"  and not to leave it empty.   He said the defect with Meth..causes infection which I had a year ago this time.   The new neurosurg. said Methacrolate has caused infection for him in the past.   He doesn't use Titanium either.

He said Dr. D. should possible do more than Dorsal.

I don't know what to believe anymore outside of my peripheral nerve doc.

Be careful about your first surgery or it is hard to recover.
Gentle hugs,
Mei Mei

[Mei Mei]

No answers here.    I guess I should take this down in a day.
MM

[PaulW]

Hi Mei Mei,
I am extremely sorry to read about your ongoing struggle.
If people feel the same as me, I just don't know what to say, so I haven't until now replied.

I cant imagine what you have been through or what you are going through.

I have too often seen things go wrong medically and the fallout that happens after the event, and often the cascade of problems that follow.

I wish I could help you more....
Hang in there...


I guess for people considering surgery your experience has been very unfortunate.
Anybody thinking about surgery for a small acoustic neuroma should read your story as a salutary lesson.
One of the reasons I had radiation was a close friend, died aged 34 after surgery to remove a 2cm Acoustic Neuroma.
When I discovered 6 Years later that I had an Acoustic Neuroma, the last thing I was going to do was have the surgery.

Lots of healing vibes and a big hug

[Mei Mei]

Thank you for replying.    I was going to take this down but was in pain.   Constant pain at the back of my head and neck.     I'm so confused as to how to proceed.    It's killing me.
Mei Mei

[jaylogs]

Hey Mei Mei!  Wow, I've known you since the beginning of your journey and I think we can safely say you are at the top of the list of how bad things can get.  And I encourage you not to take any posts down like this, if nothing else it may be a little therapeutic for you getting this out there in the open.  People do read this, so even if they don't respond you can be at peace knowing that you are educating people about how things can go.  Your experience is definitely not the norm for those of us who have had surgery to eliminate the AN but by sharing all your experiences with us you have shown what can happen.  And even through all this Mei Mei, you still show you are fighting and not giving up.  To me that is a testament of the kind of strength you have and being able to face such struggles.  Hang in there dear!  I am praying for you that you get any kind of relief from pain you can.  Take care and keep us updated on what's going on!
Jay

[Mei Mei]

Hi Jay,
Yeah, we go way back.    I'm in such pain right now.   The fibro flare and teeth grinding from the pain.
I thought people weren't responding because they were sick of my story as my daughters are.    Went to see my primary care's NP and then went for a deep tissue massage but it didn't help as it usually does.
Will see the Ortho who ordered the MRN two weeks ago to find out what it said.    I know I read there is something wrong in the Labyrinth of the Inner Ear that wasn't there before.    The pain and spasm all over the head are really killing me softly.
I don't know what to do.
Later.
MM

[Mei Mei]

Saw the orthopedic doctor this morning and mostly good news.   The bad is that I have a hemorrhage in the labyrinth of the inner ear.   Strange cause I also have several hemorrhages in my retina arteries.    Having an EMG of the peripheral nerves.    The doc does not do surgery with Dr. Ducic....horrible.    Don't know how to proceed.    The neurosurgeon want to put another implant of Calcium because in his experience Methacrolate gets infected with MRSA which I had last August 2014.

Onward....

[jaylogs]

Hey Mei Mei, well...sometimes news of any kind is good news, right? Better than another doctor telling you there's nothing wrong with you.  Now that you know this is going on, just finding someone to fix it is your next challenge.  In the meantime, hang in there dear...I'm praying for you!
Jay

[Mei Mei]

The time has come for my 6th brain surgery.    It was supposed to be next week but I am going to Boston so it will be either Oct 28 or 30th.   The hole in my head cannot keep going without  a cover.   They left it open when the took the plate infected with MRSA but the Dura is hurting.   He will cover it with Calcium Phosphate and Prep me before with VANCEMYCIN.    I did hear on the news tonight that they are now using Tamoxifen to prevent MRSA so I will ask him about this tomorrow.   He wants me out of the hospital for as little time as possible because of the risk for MRSA again.

Sigh.    I just can't like the rest of my life like this.
Mei Mei

[Mei Mei]

Hi ALl,    was having trouble logging on.     My surgery to put in a calcium Phosphate plate was successfully performed on  Oct. 30th.    Of course he followed all the old lines.     He found some old pieces of the methacrolate that was take out in Aug 2014 and there was infection with yellow pus. so it was good that I went ahead to do this.   He packed it with antibiotic power.    I had iv Vancemyecin pre, during and post op.     Hopefully the MRSA came back.    He said he had to release the dura from the muscle.   Every time I moved my head the muscle would pull on the dura.


Aug 3rd I had belly fat injected into my paralyzed vocal cord.   

Both surgeries were very successful

Sigh…on the horizon is Total knee Replacement.   Because I  am allergic to Titanium there is only one doctor that will do this   so have to go to NYC and the hospital for special surgery.

Mei Mei

[Mei Mei]

The PT said yesterday that the problems with the Faschia on my neck, shoulder and surgical side retrosigmoid area are permanent from so many retrosigmoid surgeries.   It's a permanent pain in spite of the recent help from the Calcium Phosphate retrosigmoid plate surgery.  It helped for a week but then I was back to the same mold pain in the head  neck and shoulder.   Try your best my friends to get this done in one surgery for the best outcome.    My tumor was not that big....I am hoping Dr. Ducic will re do the excisions next year since the good he did was un done with the four retrosigmoids that followed.
I'm having a hard time getting TKR surgery with the MRSA history I had in my skull bone and meninges in 2014/15
Enough it enough
Blessing for Christmas to you all
Mei Mei

[Mei Mei]

I just don't know what to say tonight.  There is no escaping this stinging and pain on the sub-occip .   I'm going to be like this for the rest of my life.   I should never ever listened to that first surgeon.    What is wrong with me.   I knew better.   I really messed up   I'm so intelligient and I messed up.    This constant pain is crazy making.    Should a tried GK.   My tumor was so small.

[jaylogs]

Hey Mei Mei.... Hey I know you have been through a LOT. But there are risks in EVERY medical procedure.  Who's to say that you wouldn't have had a regrowth after GK?  It's just really hard to predict these things.  You do have every right to say what you are saying, but I just wanted to let you know I'm thinking of you.  Hang in there, ok?
Jay

[Mei Mei]

I know there are risks to Gk and CK but my retrosigmoid was so large from my ear to  the middle of my head.   It's been 6 years and the pain is constant.    There's no escaping it and sometimes it goes up to the top or middle of my head.   That is scary.   Being scared and in pain for the rest of my life is a difficult thought.

[areles]

i'm a newb here and am not personally going through this (though my son is, we're at the beginning of his journey), so i'm in absolutely no place to give any sort of advice, and i wouldn't blame you if you quietly rolled your eyes and moved on, or even told me to stand down and keep my mouth closed, and if you said that, you'd be well within your rights.

but your comments are of concern to me, because it's although quite clear how scared, helpless, and angry you feel, and although it's also quite clear that it's valid for you to feel that way, the hopelessness threading its way through everything you're saying worries me.  the fact that you casually mentioned your daughters are 'tired of hearing' about this indicates that you feel alone and desperate, in addition to scared, helpless, angry, and hopeless. 

i'm guessing you wouldn't want to talk to anyone about this - a professional, i mean - but i feel as though i'd be remiss if i didn't suggest it (though i'll allow that you probably already have tried, or already do.)  i'm not usually the 'therapy!  it's the solution to everything!' person; in fact, i'm usually the opposite.  but you're dealing with something patently awful, and your resulting depression and loneliness is only going to pile on the weight you're already carrying.  so if you'd at least consider speaking to someone - even if only to vent, scream, cry, feel less alone for 50 minutes a week - it might be worth it.  hell, you can pm me, and vent, scream, and cry to ME, if it would help take off some of the emotional pressure.

my heart goes out to you, and i'll be thinking good thoughts for you.  i hope i didn't overstep, and i hope i don't sound stupid.  it's just, your desperation and loneliness kind of screamed at me through your comments in this thread, and that's of concern to me, and i guess i just wanted  you to know that someone heard it.