Author Topic: holes , bone flap or titanium plate  (Read 26743 times)

Soundy

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holes , bone flap or titanium plate
« on: April 25, 2010, 12:45:16 pm »
I was reading Ernie's anniversary post and he talked about sneezing and headaches and mentioned the bone that was replaced ...and problems with sun glasses

got me to thinking which can be dangerous ...

I don't have the bone replaced or a titanium plate ... my skin and a piece of a muscle running up side of  neck and center of head was pulled over hole they drilled in my head ...for many month when I coughed or sneezed instead of covering mouth and nose I place left hand on forehead and pushed and right hand over sunken in place bone was removed from and sneezed or coughed and I could actually feel something ,  I am guessing brain or fluid , bulge against my hand ... the hole is smaller as some bone growth did take place but I still have a sunken in place about 2  inches across ...maybe a little more from top to bottom ... and here nearly 3 years later a sneeze can still bring on a head ache that if Rapid Relief Tylenol doesn't get rid of in 30 minutes I have to take hydrocodone to knock out or it can escalate to a ER visit ...

wondering if those that had a bone graft or titanium plate had fewer problems than those like me that just have a hole in our heads ... I was told pre-surgery that they would drill with a forster type medical drill bit and the bone would be destroyed , but  that a piece of bone from my hip or a titanium plate would be placed in to help bone re-growth and cover surgical site protecting what‘s in my head ... neither were done and I was told this was fine too but told maybe 6 month after the fact ... At one point it was suggested going in and adding more fat but I declined this because the thought of any more surgery had me all but hysterical

I am wondering it the fact they cut an artery when getting fat graft and had to shift from brain to just  keeping me from bleeding to death changed their minds about taking a bone graft which would have kept me on the table longer ...the large hard calcified blood running from hip bone to hip bone and about as think as my arm was the worst part of first week or two of recovery …it made sitting upright impossible and I had to buy several pair of oversized pants so I could go out in public with something other than pajamas or sweat pants as I couldn’t fit the thing in my pants and sip up

Probably over thinking things … can’t undo what was done or not done … but headaches are my main issue that is still ongoing …

So plate heads , bone heads or hole heads … report in and let me know what  you had after surgery was done and if you suffer from disabling headaches …nosy hole head would like to know …thanks  :)
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Adrienne

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Re: holes , bone flap or titanium plate
« Reply #1 on: April 25, 2010, 12:55:59 pm »
Bone replaced.  Guess that makes me a bone head? LOL.  No headaches.
3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!

leapyrtwins

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Re: holes , bone flap or titanium plate
« Reply #2 on: April 25, 2010, 01:58:36 pm »
Piece of skull put back, titanium plate, titanium mesh, titanium screws.  Fat graft.

No headaches whatsoever.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jim Scott

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Re: holes , bone flap or titanium plate
« Reply #3 on: April 25, 2010, 03:21:44 pm »
Soundy ~

Good question....quick answer: skull piece replaced, titanium plate/screws, but no fat graft.  No headaches before, during or after the surgery. 

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.

texsooner

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Re: holes , bone flap or titanium plate
« Reply #4 on: April 25, 2010, 03:47:25 pm »
For me: exactly the same as Jim...skull piece replaced, titanium plates/screws, no fat graft. No headaches before or after.

Patrick
3.5cm left side AN; 11 hour retrosigmoid surgery 8/11/08 @ Memorial Hermann, Houston - Texas Medical Center with Drs. Chang and Vollmer; home on 8/13/08;
SSD(w/tinnitus); dry eye; Happy to be here and feeling good.

Mei Mei

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Re: holes , bone flap or titanium plate
« Reply #5 on: April 25, 2010, 03:51:23 pm »
I have a titanium plate and instant headache every time I sneeze.   In fact sneezed an hour ago and it brought on another headache.   I am going to the primary care tomorrow to address the headache situation because the neurosurgeon at the six week check just said the headaches would go away after two weeks and they didn't.   He's not addressing the issue of Post surgical headaches.  

I don't know why the sneeze brings on a headache, but it is an interesting question especially during the Springtime allergy season.

Sincerely,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Lizard

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Re: holes , bone flap or titanium plate
« Reply #6 on: April 25, 2010, 05:36:17 pm »
Titanium plate, and I also do as you just said everytime I sneeze.  I don't think I feel any bulge, but it does hurt quite a bit and brings on a headache.  Headaches are my worst post-op symptoms.  I have read that people who have the bone flap replaced have a less risk of headache.  I believe I read that in one of the ANA pamphlets.
Take care,
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Kaybo

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Re: holes , bone flap or titanium plate
« Reply #7 on: April 25, 2010, 06:17:04 pm »
translab - fat graft - nothing else that i know of...

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Dan

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Re: holes , bone flap or titanium plate
« Reply #8 on: April 26, 2010, 12:48:14 am »
Same as K, Retro-fat graft-nothing else.

Dan in Germany
US Army Retired, age 51,  residing and working in Germany.
Retrosigmoid 21 Sept 07 left side 1.76cm AN, Prof. Mann, Uniklinik Mainz Germany

Soundy

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Re: holes , bone flap or titanium plate
« Reply #9 on: April 26, 2010, 06:06:39 am »
Dan and K ... so you have no bone graft or plate ? ... do you have an indention at surgical site ? ... I was told it would fill in ... bone would grow toward center and I would have bone again ... it didn't happen ...edges just are rounded over now , not a sharp edge like say the edge of a coffee table ... but no growing together to fill in has occurred ... and with 3 year anniversary fast approaching I doubt it will ...


when I put my hand against the hole to sneeze I now feel something akin to a strong pulse beat instead of an actual bulging of what ever was pushing out against my hand in early days ... but if I feel a sneeze coming my hand still goes to site and I put pressure against it and it doesn't hurt as much as it does when a sneeze sneaks up on me and I don't get my hand to site ... the muscle and skin are real tight across indention now and feel hard even without bone ...looks odd on xrays and scans ... just an empty spot on right side where bone used to be ...

I was trying to figure it out in beginning ... a sneeze cough or vomiting all cause head pain ...vomitting will happen with me if I don't get a headache stopped which perpetuates the cycle  ...

right after Halloween 2007 my daughter had a rubber skull filled with putty that you squeezed and his eyes bulges out ... I took it with me and showed it to my PCP  and asked if it were possible that when my brain bulged against rim of hole like the skulls eyes bulging against the holes  in his face where eyes belonged , if the rim of hole could irritate or bruise me from inside ... he said it could explain the sudden pain but he couldn't say for sure

searching for clues and answers ... thanks for input

3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Kaybo

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Re: holes , bone flap or titanium plate
« Reply #10 on: April 26, 2010, 06:50:59 am »
Nope...nothing to my knowledge.  The fat dissolved so I do have a big depression there but don't notice it unless I put my hand up there.  One weird thing I have noticed is that the skin back there between my ear & hair tends to get "drier & flakier" and the earring on that side always has an accumulation of gunk (I keep diamond studs in almost ALL the time - I am getting better about wearing other ones!).  Gross, but true!  :P

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

lori67

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Re: holes , bone flap or titanium plate
« Reply #11 on: April 26, 2010, 08:29:57 am »
I have a hole in my head too - no plates, no replaced bone and no headaches.  If I did get headaches when I sneezed, I'd be in serious trouble here these last few weeks - allergy season has been brutal so far this year!

Soundy, I doubt your sneezing would cause your brain to bulge against the edges of bone and cause pain.  It's likely just the CSF around the brain that gets moved around, not your actual brain.  Even if it were your brain moving, your brain has no pain receptors, which is why they can actually do brain surgery on conscious patients in some cases. (Fortunately, not in my case! )

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Lizard

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Re: holes , bone flap or titanium plate
« Reply #12 on: April 26, 2010, 10:39:00 am »
I have noticed is that the skin back there between my ear & hair tends to get "drier & flakier" and the earring on that side always has an accumulation of gunk (I keep diamond studs in almost ALL the time - I am getting better about wearing other ones!).  Gross, but true!  :P

K   ;D

My skin in the back is the same way, thought it was just me and as always its not...thanks for info Kaybo, and not so gross..I can think of much worse.
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Soundy

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Re: holes , bone flap or titanium plate
« Reply #13 on: April 26, 2010, 11:31:41 am »
be it brain or CSF it hurts ... thought about show I watched where man was awake as they played with brain so he could talk to him ...just numbed his skin and knovcked him out long enough to get through skull then woke him up to work on brain and talked to him to mke sure they were not going to deep or something ... I am leaning towrd it being fluid early on that caused the bulge ... it even gave my regular doctor the willies ...

I was told once at ENT office to hold nose , close mouth and act as if I was going to blow out air to see if it would "pop" my ear and relieve pressure ... it didn't work but gave me a head ache and made the bulge happen ... I demonstrated it to my PCP after first taking a dose of hydrocodone when he took over trying to help me with headaches and it made him jump to hold my head and feel te movement ... glad it no longer does that and wish when it stopped moving it took head pain with it ...

they use some cleaners at school that makes me sneeze ...so I avoid upper hall in the morning when they clean rooms while 5-8 are in their specilty classes and avoind the lower halls when K-4 are in theirs ... and I carry a supply of Tylenol and hydrocodone and just in case my handy dandy stainless steel pill bottle doesn't find it's way to my pocket in the morning I have a stash at the nurses office
 
I also have dry skin over indention that flakes away falling down the side of my neck or it accumlates right behind my ear and turns to gross gunk in the crease if I get sweaty ... I guess sweat and flakes = gunk ... :( ... I scrub behind ears daily and apply prescription ointment that I use after sun exposure that kicks up lupus skin issues and it helps some ... what I don't get is that along the scar tends to be oily
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Lizard

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Re: holes , bone flap or titanium plate
« Reply #14 on: April 26, 2010, 07:37:57 pm »
Soundy, Funny you say that about the guy awake during surgery, another AN friend just showed me this one...I am SO glad I was asleep!

http://www.youtube.com/watch?v=PjX6ErmKY14

Enjoy!

Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt