Author Topic: Post-Op Complications  (Read 6213 times)

Ann/Mobile

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Post-Op Complications
« on: June 13, 2006, 10:07:05 am »
I would like to know if anyone else has experienced any of what we have.  My 37 yr old son discovered he had an acoustic neuroma on May 5, 2006.  He had been slowly loosing his hearing in the left ear for the past 6-7 years.  He developed a severe headache with no relief on May 3, 2006, which led to the AN diagnosis.  He had surgery on May 9th, 11 hours long.  The AN was larger than anticipated and partially attached to the brain stem.  He spent 3 days in the NICU, 4 days in a room, then transferred to a rehab hospital in the area.  He was there for a week, slowly making progress with rehabilitation.  He was weak, mostly on the left side, and spoke slowly, otherwise was doing good.  A week later he developed hydrocephalus, the surgeon put in a shunt, tested the spinal fluid and discovered a "bug".  He took the shunt out, installed a ventriculoscopy, opened all the incisions and "washed" them  out with antibiotics and we went back to NICU.  The next day he threw a blood clot which lodged in his lung.  A filter was installed to prevent any additional blood clots.  The ventriculoscopy did not drain, so was reinstalled.  It stopped draining again and had to be flushed & repositioned.  It stopped draining again, so had to be reinstalled on both sides.  They are now draining.  His heart rate has gone from very slow during surgery to now being very fast.  He now has a fever even though the "bug" in the spinal fluid is gone.  They cannot locate any other infections.  He cannot talk, but does recognize us and squeezes our hand with his right hand only.  He has been in NICU for 18 days now.  Before this he was never sick a day, very active and healthy. 
Sorry it is so long, but we are very frustrated and would like to know if anyone else has had any of these experiences.
Thanks for any information.

dowdog

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Re: Post-Op Complications
« Reply #1 on: June 13, 2006, 10:35:01 am »
Ann,
Sorry to hear of all the problems associated with your son's surgery.  I am happy that he seems to be responding well to your visits and encouragement.  I personally don't have any experience with the complications you report but there are probably many on this site who do.  Hang in there and read through the many posts on this website. 

Good luck and God bless,

Chuck
Diagnosed 4/21/06, 10mm right-side AN.  CyberKnife treatment in Feb.2007.

ppearl214

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Re: Post-Op Complications
« Reply #2 on: June 13, 2006, 12:14:44 pm »
Hi Ann and welcome.  I, unfortunately, cannot share as I had radiation, not micro-surgery, but my thoughts are with your son, you and your family.  He sounds like a real fighter and thrilled that he is responding well to you and your visits. Please let him know that I am thinking of him and sending huggles and warm healing thoughts to him. It may be slow going but thoughts sent for a speedier recovery.

BTW, there are some here that have run into surgical complications. I hope they can chime in and share (if you don't find posts here that you seek). 

Hang in there... Moms need hugs too!
Phyllis
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

cookiesecond

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Re: Post-Op Complications
« Reply #3 on: June 13, 2006, 06:36:08 pm »
Hi Ann,
I am so sorry your son is having such a hard time. I didn't have those problems however I did develop meningitis and was readmitted for an additional 10 days.You guys will certainly be in our prayers.I'm sure others on this forum will be more helpful.
Please try to keep positive thoughts and hang in there.
Keep us posted,
Lynn

Battyp

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Re: Post-Op Complications
« Reply #4 on: June 13, 2006, 08:30:57 pm »
Hi Ann,
  I'm so sorry your family is going through all that  :(  I know I've not had the outcome I expected but nothing compared to what your son is going through.  I do know that I've been told repeatedly it takes at least a year for the body to heal through the ordeal of brain or heart surgery.  I know the first two months after my surgery I had trouble with my speech and continue to have some difficulty because of the numbness in my throat is that why he can not talk at this point?  when he was in rehab did they put the stockings and leg machines on to keep his blood ciruclated?  The reason I ask is a friend of mine had trouble with clots while in rehab after a knee replacement surgery.  I know how sick he was from the problems with the clots but is now doing ok after being very sick for about 2 or so months.  I so wish I had the answers you need.  Please know I'll keep your family in my prayers and hopefully with time he'll improve.  After my surgery I was always hot could that be what is causing part of the fevers?  His body trying to reregulate?  Are they low grade?

Try to keep the faith I know it's a tough time for you right now.

Hugs, Michelle

Captain Deb

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Re: Post-Op Complications
« Reply #5 on: June 14, 2006, 09:40:42 am »
Ann,
Thanks for sharing your story with us and sorry your family is going through such a hard time.  You certainly came to the right place for support.  Please know that all of us on the forum are keeping you and your son in our hearts and sending prayers, good vibes and positive thoughts your way. Please, please, please keep us updated on your son--we are all very concerned.
Hugs,
Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
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jjaynes

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Re: Post-Op Complications
« Reply #6 on: June 16, 2006, 02:47:01 pm »
My goodness I hope and pray it turns out okay for you. I was in the hospital 5 times and had 4 seperate surgeries for mine. It was very discouraging to have to go under the knife over and over like that. My first surgery was in Jan 06 and my last one was in April 06. Just hang in there.. things get better slowly but they do get better.

Captain Deb

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Re: Post-Op Complications
« Reply #7 on: June 21, 2006, 08:07:42 pm »
Bump to top!  Any word on Ann's son?  Sure would like an update on him if possible.  Still sending hope and hugs his way!
Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

matti

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Re: Post-Op Complications
« Reply #8 on: June 22, 2006, 06:38:23 pm »
Ann - Your son is obviously very strong and a definite fighter and the fact that he was very healthy going into this has certainly helped him. I feel your pain and please know that we are all here for you.

Keep us posted

Sending hugs
Cheryl
3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

Ann/Mobile

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Re: Post-Op Complications
« Reply #9 on: June 26, 2006, 03:35:12 pm »
Thanks for the many responses. Apparently the meningitis is what caused the majority of my son's problems.  After the surgery he had speech and motor abilities, but after he developed the infection, he lost his speech and the use of the left side.  We are now in a long term care facility where they will do extensive rehabilitation.  There have been a few improvements, such as a slight movement on the left side and a couple of words.  No more set-backs, at least.  We were just moved Friday night, so we are just beginning therapy.  I will keep you posted.  Thanks for the support.

Jim Scott

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Re: Post-Op Complications
« Reply #10 on: July 18, 2006, 01:27:05 pm »
Ann:

It was good to read that the underlying condition (meningitis) to your son's 'setbacks' was finally diagnosed and that he is now in 'turnaround' mode.  We will pray for his continued recovery and strength for both of you.  You folks are inspiring and - believe it or not - can help some of us put our sometimes less-than-satisfactory recuperation from our AN surgery into perspective.  I am very grateful to have had an excellent recovery - but not everyone does.  My heart goes out to those - such as your adult son - who must continue to struggle long after the AN tumor is gone.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Pembo

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Re: Post-Op Complications
« Reply #11 on: July 18, 2006, 06:05:07 pm »
Ann you and your son are in my thoughts. Here's to a speedy recovery.  I strongly believe that physical therapists are part miracle workers. Have faith in them.....
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

Vincent87

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Re: Post-Op Complications
« Reply #12 on: July 19, 2006, 12:00:36 pm »
Ann:

I read your posting to my mom...we both cried...Mom had a 2.0 AN that was zapped (but not really with GK) last year.  She's 70 now.  Got psychotic on the Decadron, went to rehab, went to nursing home #1, hydrocephalus (VP shunt installed four days after Christmas).  Her neurosurgeon said that she had a hernia-IDIOT-it was pseudocyst that required emergency surgery.  (The shunt catheter wasn't placed deep enough in her belly.)  Second round of rehab.  She's now on nursing home #3.  Debiliating vertigo.  We got lucky in meeting at nursing home #1 Our Angel, a PT, who got us in to Nursing Home #2.  But Nursing Home #2 COMPLETELY missed a change of mental status because of the pseudocyst Mom still had hyrdocephalus.  We got her out of there really fast-I put my concerns in writing after also meeting with the head of nursing and we got an order to vacate notice.  The head of nursing there has since been fired because of how she handled my family's "situation."  It's a long battle back...within the medical system, with doctors.  You're there...your son is very fortunate that you're his advocate.  Nursing homes would prefer the family only show up for a 1/2 hour every night but to them I say screw you.  (I kept questioning the hernia and it was only an ER resident who ordered the CT scan.)  As for Mom, still has the vertigo.  She has plateaued with therapy so now I've taken on that role too (because Medicare won't pay if you don't progress 3 out of 5 days a week in sessions).  And from her last MRI in February it appears the AN has grown-we're still waiting to hear from her GK doc and neurosurgeon.  They're all chicken &^%!  No one can change my mind or my sisters' that the radiologist is in with GK doc.  My advice:  Just keep doing what you're doing...progress is measured in the small things and it's very subtle.  Keep a journal.  I watched the other day as the Space Shuttle landed.  The New Frontier isn't space-but the brain if you ask my family.  We pump billions and for what?  And don't even get my mom going about stem cell research.  (We're for it.)  Take care of yourself too.  I have spent the past 10 months with my mom-I took a leave from college-7 days a week, 8-10 hours a day.  And then I go home and play basketball at 1:00am.  Please know you are making a difference.  My family sends yours good thoughts and hope that today was better than yesterday.

kat

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Re: Post-Op Complications
« Reply #13 on: July 28, 2006, 06:58:40 am »
HI Vincent

It is me Kat ! I could not remember where your last post was on the site and it has taken nearly two months for me to figure out  that I can just put your name in search and up it comes ! Phew ! maybe the AN is making me more stupid than ever . I had hoped that there would be some  encouraging signs of recovery in your Moms case but from your posts it seems that there is a long way to go yet . I hope that she is happier in nursing home 3 . I really  hope that you get some results in your search for the truth about what went wrong with your Moms GK . As always I think that your Mom is so lucky
to have you for support . Give your Mom my best wishes and a big a hug .

On the sailing front I had a reallly varied and fantastic cruise from the Bahamas to the Chesapeake Bay via the intra coastal waterways . The boat is now left in the Chesasapeake Bay outside of the hurricane belt which were becoming a major hazard in Florida .

On the AN front everything seems fine I had a hearing test which showed no change and my next MRI will be in December.   

Best regards Kat 

2.2 cm AN diagnosed July 2004 . GK at  the Royal Hallamshire
Sheffield UK in April 2005 2nd MRI in December 06 showed signs of the AN shrinking and MRI in FEB 08 showed no change . SO FAR SO GOOD .