Author Topic: 5 and a half month update :)  (Read 5872 times)

EJTampa

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5 and a half month update :)
« on: August 20, 2009, 09:40:22 am »
Yeah, hasn't been 6 months yet, but since there have been new developments...
 
About 6 weeks ago or so, I started having minor headaches.  They always originated just behind the surgical area and slowly migrated around the back of my head.  When I first started getting them, it was only once in a while, and a dose of ibuprofen would nip it in the bud and I would be good for a few days.  Most of my headaches were triggered by a sneeze, which always gives me instant pain on my AN side that lasts for about half an hour.
 
Lately, the headaches are daily.  I take a 500mg tylenol in the morning and either a tylenol or 2 ibuprofen at night (to mix things up a bit).  Generally, meds twice a day keep all the pain away, so really, not a big deal.  The only time the pain becomes severe is when I sneeze or strain to do something.
 
I visited with Dr. Bartels yesterday as part of my normal follow-up.  He told me to point to where the pain begins, which was easy to do because I skipped my morning dose on purpose so I could better explain the pain.  He said I pointed directly to my occipital nerve.  He believes that scar tissue is irritating the occipital nerve.  He suggested a nerve block, which will basically act as a test to see if the nerve is responsible for the pain.  I was a bit apprehensive about a shot in the back of my head, but went ahead with the treatment.
 
First - let me say that a needle in the back of the head is more painful than one in your arm :).  Also, once the local anesthetic wore off, the injection site was quite painful.  I took more tylenol yesterday than any other day so far :).  This morning, the injection site is still very sore, but I don't yet have the pain moving around the back of my head!  I sneezed about 20 minutes ago, and the normal intense pain followed, but it subsided much more quickly than normal.  I am keeping my fingers crossed that this will eliminate my need for daily meds, even if they were minor.
 
The long term fix, according to Dr. Bartels, is to have the nerve killed by injections.  That would only be done if the nerve block proves successful.  The other option is to treat it indefinitely with blocks.  He told me that nerve blocks can last anywhere from a few weeks to several months.  I think if I get several months of pain free days per injection, I will probably just keep treating it.  If I only get a few weeks, then I would opt for assassinating the nerve! :).
 
As many of you know, I went back to work full time after 6 weeks and haven't looked back.  I still get lightheaded when driving, especially at night, but otherwise have adjusted well.  I still have some difficulty painting from a step ladder, and do stumble off the ladder once in a while.  Don't worry, it's only 2 steps :).
 
I'm not going to go back in time since it's all been posted previously, but know that things are really going great and I feel very blessed to have had this forum available to me!  Here is a link to my post op updates for those that are curious, and want to do a bit of "light" reading :).
 
http://anausa.org/forum/index.php?topic=8882.0
 
Ernie
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

moe

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Re: 5 and a half month update :)
« Reply #1 on: August 20, 2009, 10:38:26 am »
Hi  Ernie!
Thanks for the update. Great hearing from you.
There are many who suffer from headaches (thankfully I am not one of them- enough other problems :o )
That is so great that your doctor is willing to nip it in the bud and treat it.
Those "scar tissue on the occipital nerve" headaches can be debilitating for some on the forum.
I believe someone on the forum had the surgery to remove the scar tissue and is headache free or almost.
So keep tabs on it-I'm sure you will. You have a long life ahead of you! Get what treatment you can before things change in health care!
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Joe B

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Re: 5 and a half month update :)
« Reply #2 on: August 20, 2009, 11:25:01 am »
Ernie

Sorry to hear about your headaches. If anyone can take care of them, it is Dr. Bartels. He did my translab surgery 2 1/2 months ago and I also went back to work quickly after surgery. My occupation(roofing contractor) also involves ladders, but I have to go higher than the second step. Fortunately, my balance issues are minimal, but I still stay off of steep roofs and away from roof edges.

Hope all goes well for you.

Joe B.
2.9 cm AN left side
MRI 5/13/09
Translab 6/04/09 Tampa General Hospital
SSD

Jim Scott

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Re: 5 and a half month update :)
« Reply #3 on: August 20, 2009, 01:34:46 pm »
Hey, Ernie ~

Good to see you posting again.  I'm sorry you've had to deal with intermittent-but-painful headaches.  Fortunately, it appears as if you're on track to finding a way to eliminate or deal with them, medically, so I'm pleased to see that.  However, as you noted, an injection in your head is a lot more painful than the more typical injection in your arm, so that has to be a consideration for you when making a decision on treating these headaches.  Your conclusion that as long as the nerve-blocking injections have a long-term effect, you'll stay with that approach, seems quite reasonable. 

I'm glad to learn that, with the exception of the headaches, you're functioning normally and have your life back, as it were. Thanks for giving us an update on your progress.

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.

Kaybo

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Re: 5 and a half month update :)
« Reply #4 on: August 20, 2009, 01:53:26 pm »
Ernie~
Hope that this does the trick for you...anxiously awaiting the next few months to see what will happen...Let's think positive and maybe they will just go away all together!!

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!

Debbi

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Re: 5 and a half month update :)
« Reply #5 on: August 20, 2009, 04:48:20 pm »
Ernie-

So sorry to hear about the headaches!  Hope the nerve block does the trick and that one time fixes it (because a shot in the back of the head does NOT sound like fun!)  Sending you good thoughts...

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

leapyrtwins

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Re: 5 and a half month update :)
« Reply #6 on: August 20, 2009, 06:56:42 pm »
Ernie -

been wondering where you went  ???

Glad you stopped in to give us an update.  Sorry about the headaches, hope they get better.

Don't be a stranger.

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

Kathy M

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Re: 5 and a half month update :)
« Reply #7 on: August 21, 2009, 09:19:22 am »
I'm so glad you checked in - I was wondering how you were doing!  Sorry about your headaches - sounds like you've got a doctor who you trust and can tell you exactly what your options are.  Makes for good decisions on your part!  Hope your headaches are minimal...

Kathy
AN diagnosed 11/14/08, 3+cm, Retrosigmoid 1/13/09, Univ. Hosp., Cincinnati, Drs. Tew and Pensak
no facial nerve or eye issues!
3 more surgeries related to staph infections & osteomylitis over next 13 months.  New diagnosis of breast cancer.  Treatment completed 08/27/10.  Moving on!!!

ppearl214

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Re: 5 and a half month update :)
« Reply #8 on: August 21, 2009, 09:39:47 am »
Hey Tampa Ernie, you BoSox loving guy!  Thanks for sharing this update with all of us.... and here's hoping the headaches ease up.  Hang in there... and btw, Sox playing Yanks this weekend... should be interesting!

Continued wellness wishes to you! Let me know next trip you all do up this way!

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

EJTampa

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Re: 5 and a half month update :)
« Reply #9 on: August 21, 2009, 09:43:59 am »
Keep in mind that these headaches are easily treated with OTC meds, so a small price to pay to be tumor free :).
 
Phyl, We need the BoSox to win some games!  Yes, there are a lot of games left to play, but I hate seeing Texas so close to taking away the wildcard slot!  Of course, I haven't given up on catching those damn yankees just yet!
 
Ernie
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

Kaybo

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Re: 5 and a half month update :)
« Reply #10 on: August 21, 2009, 01:45:38 pm »
Texas?  Did I hear Texas??
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!

EJTampa

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Re: 5 and a half month update :)
« Reply #11 on: August 29, 2009, 05:31:27 pm »
Checking in again :).  The nerve block doesn't seem to have done anything.  If anything, the headaches are becoming more frequent and a bit more potent.  I am now taking OTC's 3 times per day instead of 2.  Otherwise, no real changes to report.
 
I'm going to post a question in the headache section.
 
Ernie
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

Kaybo

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Re: 5 and a half month update :)
« Reply #12 on: August 29, 2009, 05:44:34 pm »
Oh no  NOT what we were wanting to hear?  can you do "do overs"??

K
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!

NancyMc

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Re: 5 and a half month update :)
« Reply #13 on: August 30, 2009, 08:38:24 am »
Hi, Ernie.
I've been thinking of you often and assuming no news is good news.  I guess that was right.  So sorry to hear of your headaches. 
Wishing you the best in finding the cure,
Nancy
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

EJTampa

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Re: 5 and a half month update :)
« Reply #14 on: September 02, 2009, 12:47:51 am »
Yesterday was a BAD day, but today (which is really yesterday now) was great!  I only took OTC's twice.  I can live with that!
 
Hey, Red sox destroyed the Rays in Tampa today!  Yeah!
 
Ernie
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.