ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: lawmama on November 05, 2009, 09:23:50 am
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I scheduled surgery for December 14th at Shands Hospital in Gainesville, FL with Drs. Antonelli and Lewis. It was a really tough decision, but in the end I think this is what is best for me. I will be having the retrosigmoid method to minimize the risks to my facial nerve, and I am at peace with the lower odds of saving hearing in that ear. That is a trade that I am willing to make.
I actually feel some relief now that I have made a decision. It didn't come easy, but after research, weighing my odds, and a ton of prayer I am now confident. The date works because I will have all of Christmas break to recover before the new semester begins in January.
Thank you for all of your advice and support!
Lyn
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I have always said )since I found his Forum 12 years after my surgery) that the decision making is the hard part - we didn't have to do that because my tumor was so big and I had less than a week between the discovery of it and the day surgery was scheduled (plus I don't think there were as many choices then)! Glad you have gotten past the tough part of deciding - sounds like you really did your homework!
K ;D
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Congrats Lyn, it DOES feel a lot better now that you got a date on the horizon, eh? I wish you the best of luck, let us know how it goes!
Jay
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Congrats Lyn,
I soooo know what you mean about feeling better once you make the decision. You then commit to it, and start planning and your life feels so much less 'up in the air'.
Having said that........trust me-you'll feel even better that first time you wake up and know that you're on the other side and can start in the recovery process.
Best of luck to you.
Adrienne
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Hi, Lyn ~
Let me add my congratulations to you on making the decision to have retrosigmoid surgery at Shands next month. I've added your date to our AN Treatment Calendar http://my.calendars.net/an_treatments/d14/12/2009?authenticate=&display=M&style=B (http://my.calendars.net/an_treatments/d14/12/2009?authenticate=&display=M&style=B)
I know this is always both a tough decision to make and a relief to have made it. As a retrosigmoid surgery patient that had a splendid outcome (hearing was already gone in that ear), I commend you and will certainly be thinking of and praying for you between now and December 14th, along with many others, I'm sure.
Jim
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I will be having the retrosigmoid method to minimize the risks to my facial nerve
It's been a long week, but isn't translab the approach that supposedly minimizes the risk to the facial nerve?
I had retrosigmoid and no facial nerve damage (other than a day or two post op) but once I found the Forum I read numerous posts that claimed retrosigmoid was known for headaches and facial nerve damage. I felt like an exception to that rule since I don't get headaches either.
Am I just confused here and lacking sleep?
Someone help me out, please.
Jan
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It's been a long week, but isn't translab the approach that supposedly minimizes the risk to the facial nerve?
I had retrosigmoid and no facial nerve damage (other than a day or two post op) but once I found the Forum I read numerous posts that claimed retrosigmoid was known for headaches and facial nerve damage. I felt like an exception to that rule since I don't get headaches either.
Am I just confused here and lacking sleep?
Jan-I read that too. But my neurosurgeon swore that that wasn't the case. I think you get varied responses depending on which neurosurgeon. Mine said it was his preference because the facial damage point was a misnomer based on old techniques and/or placement of the tumor. The experienced ones apparently do not have higher rates of facial nerve damage. He also said "My patients do not get headaches. Period." Has something to do with new techniques (I had heard headaches were caused by bone dust).
Either way-add me to the retrosigmoid no facial nerve damage/weakness and no headaches clan.
Adrienne
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I will be having the retrosigmoid method to minimize the risks to my facial nerve
It's been a long week, but isn't translab the approach that supposedly minimizes the risk to the facial nerve?
I had retrosigmoid and no facial nerve damage (other than a day or two post op) but once I found the Forum I read numerous posts that claimed retrosigmoid was known for headaches and facial nerve damage. I felt like an exception to that rule since I don't get headaches either.
Am I just confused here and lacking sleep?
Someone help me out, please.
Jan
Ok, this is what I thought, and please everyone jump in if I have the wrong impression here!
From my research translab does minimize risk of facial nerve damage, but there is 0% chance to preserve hearing. With retro my surgeon is giving me 30-40% (but no guarantees) at preserving "some" hearing. The risk of damage to the facial nerve is less than Middle Fossa. I think House has better rates facial nerve preservation for Middle Fossa (maybe because they do it so often).
I heard about headaches, but I thought it was a fairly low % and usually worse when they use titanium plates/mesh/screws to close the craniotomy. Is that wrong? I didn't really pay that much attention because I'm pretty sure I remember them saying they don't use them. I think they replace the bone and use fat to fill... or something like that.
Anyway, I'll check into this more. I thought I was pretty thorough with my research but maybe I glossed over a few things I need to pay more attention to. Thanks for pointing out some areas I need to research a little more. :)
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Translab does usually mean 100% hearing loss; retrosigmoid usually gives you some chance. Mid-fossa typically gives you the greatest chance of retaining your hearing - but unfortunately isn't available to everyone due to tumor size and/or location.
As far as head "hardware", I have a titanium plate, titanium mesh, titanium screws (as well as a titanium rod for my BAHA) plus belly fat in my head and I don't get headaches. I think this is just part of the "we're all similar, but all unique" part of having an AN.
Jan
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Tee hee. Further to your point Jan. I have the bone replaced.
More than one way to skin a cat.
(Is that a bad analogy to use on this board? LOL).
Adrienne
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Hey Lyn,
So glad you have made your decision and are feeling more confident. I too have scheduled surgery- for Dec. 22 (only date available)... :( My doc says he wants to do the middle fossa to preserve most of my hearing on the AN side. After reading this thread I am a bit concerned about the facial nerve/paralysis issue with this approach:( There are still so many questions I have for the doc about headaches, etc. too :( After reading this I realize how many more things I have to "investigate" before the big day !! Hoping to read lots more input here....so confused...again!
Congrats to you Lyn! Keep us posted :)
Bren~
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My mom sent me this website and I found it VERY helpful...hope you do to!:)
http://www.michiganear.com/library/A/acousticneuromavid.html
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Lyn ~
Add me to the list of those AN patients who underwent the retrosigmoid approach surgery. Like Adrienne's doctor, my neurosurgeon said basically the same thing: "My AN patients don't get headaches"...and I didn't - ever. I have the titanium plate/screws instead of body fat - and never had a problem, except that it took close to a year to regain full sensation on the 'AN side' of my skull, but it did return. My brainstem was moved ("just a little" - according to my surgeon) but I suffered no ill effects, i.e. headaches. My hearing in the affected ear was essentially gone by the time my AN was discovered so I had no illusions about getting it back. Good thing, too, because I didn't get it back. Otherwise, I had a very successful AN debulking surgery with minimal complications. That is simply anecdotal evidence and based on my being fortunate enough to have a highly experienced neurosurgeon (thousands of AN removal surgeries) but I think it bodes well for you, Lyn.
Bren ~ Good information, very comprehensive. Thanks for the link.
Jim
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Lyn,
Good you got your date set, but I'm finding that once you set your date you realize it's really gonna happen, on this date! Then the waiting raises the anxiety levels to unheard of levels. I've got 10 days to go and I can't wait. You got a lot of days. I guess you'll have a lot of time to get to know everyone here. These people are great. I've joined a couple of forums before but nothing compares to the genuine caring and kindness shown by this unique group of individuals. your in a good place here.
Good luck with your waiting and surgery.
Mike.
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Lyn: You are in my thoughts & prayers; relax now, just breathe... everything's going to be alright.
Do wonderful things for yourself ! ! Just let go ! ! Always good thoughts, Nancy
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Hi Lyn, I am so glad we had a chance to chat on the phone the other day. You are going to do wonderfully. I am very impress with your team since I was there October 19th with the same team. I hoping to see you in pre-op on tuesday 17th. Sending you many blessings your way,Debi
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I will keep you in my prayers. I was at Shands back in 2007 for my eye surgery (correct my double vision). I went in as an outpatient but I must say I was very pleased with my surgeon and the facility.
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Lyn,
I too was a patient of Antonelli/Lewis in 2005. They are wonderful and the facility is tops. Rest peacefully knowing you are in very capable hands and the team of nurses surrounding you are the best! Blessings to you and everyone!
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Hi Lyn,
I just want to wish you all the best for your surgery on the 14th. I realized that since we won't get back from Los Angeles until after your date, I'd better message you today. We're leaving on Sunday, so it's getting down to the wire. I'll be thinking of you. You've picked a wonderful surgical team and I know you'll do great. See you again on the postie side.
Tam
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Hi Lyn,
Just want to let you know that I am thinking of you and sending all positive vibes! Your surgery is going to be a great success and know that you have many people praying for you :) If you need to talk I am here! Good luck...you will soon be a postie :)
Bren~
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Good luck with your surgery that was my mother-in-laws birthday and I feel it is a very lucky date, no mother-in-law jokes here.
My prayers will be with you,
Pat
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Thanks!!!
I'm feeling very good about this. I'm sure I will be nervous the day of the surgery (and maybe the night before?), but right now I feel pretty good about things. Law school final exams are a GREAT distraction! :D
Thanks for all of your prayers and positive thoughts. I'm sending them all right back to all of you, too!
Lyn
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Prayers and good thoughts, Lyn.
Hope things go very smoothly on Monday.
Looking forward to seeing you back here as a postie! ;D
Jan
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Best wishes, Lyn! Fun to hear that you feel good about getting brain surgery as your Christmas present. :)
Steve
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Thinking of you as you get ready for tomorrow...wishing you a quick and uneventful recovery!
Cindy
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Lyn .....
Many good thoughts and prayers for a successful surgery tomorrow!
Clarice
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Hey there Lyn.
Wishing you a peaceful night tonight. Eat a lot, it will be a while before you eat good again. You have my best wishes and positive thoughts all day tomorrow. I'll be anxiously waiting to hear good results from your successful surgery.
With you all day tomorrow in spirit.
Mike
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Lyn,
I, too, wish you a successful (and fast!) surgery and a great recovery...will be sending your prayers tomorrow!
Cheryl
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Add me to the list of well wishers.
Kate
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Lyn,
I am praying all goes well with your surgery today.
Best wishes for an easy and quick recovery!
Cyndi
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Thinking of you, Lyn.
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My prayers are with you for a speedy recovery you have to get back to those law books...we are all waiting to hear how you are doing ?
Regards,
Pat
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Thoughts & Prayers with you. Keep us posted.
Happy Trails,
Lynn
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Hope everything turned out great, Lyn.
I've been thinking about you.
Jan
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I'm sure things are going about as expected (by us posties anyhow)... Remember, the first 3 days don't count.
Is anyone going to update for Lyn the first few days?
Regards,
Brian
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Hi Lyn,
Thinking of you and hoping all is going well! Can't wait to hear how you are doing.
Bren~
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Maybe I need to fly down to Florida to check up on our lawmama! ;D ;) ;D
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Has anyone heard from Lynette? Just wondering how she is doing. I didn't see any updates on her blog either. I am not sure if someone is going to update us here or not?! :( I'm a worry wart :-\
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I don't remember Lyn saying anything about a scribe. So we may just have to wait for her to come back.
Patience, people, patience! ;D
Jan
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I don't remember Lyn saying anything about a scribe. So we may just have to wait for her to come back.
Patience, people, patience! ;D
Jan
Yeah, you know how we're SO good at that around here.. :)
Brian
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Yes, I do know.
One of the reasons I put that in my post. I'm one of the most impatient people I know ;) :D
It's driving me crazy that we haven't heard about Lyn yet, but I'm still thinking good thoughts and praying for her. I'm confident she'll be reporting as soon as she can. And I'm also confident that things went well for her and she's on the road to recovery.
Jan
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Lyn stopped by and posted a message in the Post-Treatment area this morning:
http://anausa.org/forum/index.php?topic=11342.0
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Hi, I just wanted to make a comment about Lawmama & myself, both of us had the same doctors. We BOTH have been very blessed in our surgeries and their out comes. I believes this saids tons about Dr. Stephen Lewis and Shands Teaching Hosptial in Gainesville,Florida. I am just so proud of you Lawmama and how well you have done this week. Keep up the great work, Debi
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I agree, Debi. I feel like I received the very best of care. Both Dr. Antonelli and Dr. Lewis were fantastic and I'm thrilled with my results. No surgeon could have saved my hearing because my AN was on the hearing nerve, but my face is perfect and I think my recovery has been very smooth and I give a lot of credit to the care I received from my doctors and the nurses at Shands. I would recommend Shands and my doctors to anyone.
Thanks for the kind words from everyone!!!
And sorry to keep you all in suspense earlier. I did have a caringbride page that my sister was keeping up, but I guess I forgot to link it in my signature before my surgery. Oops!!! Thank you all for your prayers and thoughts. I think all of the positive energy sent my way just lifted me up and was the reason for my fantastic recovery. I'm one week out and I feel pretty darn good! I think this whole experience has really made me realize how much good I do have in my life. I'm looking at things very "glass half full" now. Very thankful.
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Congratulations, Lyn! You and your story are a hope and inspiration for me.
Hey I just checked out your blog and low and behold your doctor also quoted you a 95% chance of facial nerve preservation. That's consistent with my doctors "stats".
And that fact you are here, posting your story just a few days after your surgery.
Wow.
http://lynettewp.blogspot.com/search?updated-max=2009-11-09T11%3A10%3A00-08%3A00&max-results=7
Odds of facial nerve preservation: 95% He says this can sometimes depend on factors outside of his control (my anatomy, swelling after the surgery, etc) but he has a very good record in this area.
EDIT:
I just took a good look at your blog. Your situation sounds like mine - my balance is what is out of whack and that is what brought me to the doctor. Thanks for documenting all of this ..... really, really, great stuff you have shared.
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Congratulations, Lyn! You and your story are a hope and inspiration for me.
Hey I just checked out your blog and low and behold your doctor also quoted you a 95% chance of facial nerve preservation. That's consistent with my doctors "stats".
And that fact you are here, posting your story just a few days after your surgery.
Wow.
http://lynettewp.blogspot.com/search?updated-max=2009-11-09T11%3A10%3A00-08%3A00&max-results=7
Odds of facial nerve preservation: 95% He says this can sometimes depend on factors outside of his control (my anatomy, swelling after the surgery, etc) but he has a very good record in this area.
EDIT:
I just took a good look at your blog. Your situation sounds like mine - my balance is what is out of whack and that is what brought me to the doctor. Thanks for documenting all of this ..... really, really, great stuff you have shared.
Hi!
I just wanted to be clear about the facial nerve statistics. The stat of "95% facial nerve preservation" doesn't mean that 95% will have no facial issues at all. My doctor was very clear with me that they can perfectly preserve the nerve and sometimes patients will still have some level of weakness that ranges from very temporary to permanent. After surgery, he told me that he felt very good about my chances of escaping any issues because of where the tumor was located (although it was bad for my hearing nerve). I have been very lucky. I never had any weakness of any kind (that I could perceive, anyway). Others have different results, but I went with the retrosigmoid approach specifically to try to have the best possible chance of facial nerve preservation, even at the peril of my hearing nerve (which it turns out, could not have been saved by any approach, but that was dumb luck).
Thanks. I'm glad anything I've shared has helped someone. :)
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Others have different results, but I went with the retrosigmoid approach specifically to try to have the best possible chance of facial nerve preservation, even at the peril of my hearing nerve (which it turns out, could not have been saved by any approach, but that was dumb luck).
Lyn,
I could be wrong here, but the RetroSigmoid approach doesn't offer a great advantage to facial nerve preservation over the Translab approach, does it? I thought it was the other way around? Or was it that in your case, it did? I always thought that Translab offered a better view of the tumor and/or nerves, but sacrifices hearing outright to do it (because the inner workings of the ear were removed to "get there")..
Can you clarify a little?
Thanks,
Brian
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Sorry, Brian. I meant retrosigmoid v. Middle Fossa. Translab was never an option for me because I had hearing to preserve, so I always wanted to at least give myself the chance for that, even if it wasn't a great chance. Although, I haven't heard that there is much of a difference between translab and retro for facial nerve preservation, but admittedly, I didn't do much research about it because of the hearing thing, so I'm not so educated about the stats for translab.
Lyn
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Lyn,
Now THAT makes sense based on what I know.. Between those two approaches, Retro would give the doctor a better view of the facial nerve (and other nerves) because inherently the Middle Fossa works within a much more confined space and therefore a more limited view of the nerves.
Thanks for clearing that up.. I knew if I was confused, there was at leave 1 or 2 others (especially 'newbies') that were..
How are things going for ya now? Up running marathons yet? (Just kidding) ;)
Regards,
Brian
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Pooter -
thanks for asking Lyn for clarification. When I read this post earlier today, I too was confused.
I've heard numerous times that the retrosigmoid approach generally results in a greater risk of both facial nerve damage and headaches for patients. As with everything, though, there are always exceptions to the rule. I had retrosigmoid and didn't have facial nerve damage for more than a day or two and I suffer no headaches.
Jan
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No marathons yet! :D But I did go out to lunch and grocery shopping yesterday, so I think that's pretty good.
I'm having some pretty awful headaches, but I'm hopeful that they're related to the swelling I still have. I'm on a type of migraine medication that works wonders for the headaches, but it also makes me loopy, so I would rather not have to take it. The headaches feel like pressure-type headaches in the back of my head and are the worst when I wake up during the night and in the morning (after my head has been laying on the pillow). Otherwise, I think I'm coming along nicely. I'm ready to get the staples out, or as my daughter calls it, my "zipper." LOL That's tomorrow morning, so it will be an early Christmas present.
Thanks to both of you for clearing up the confusion about the stats. I would hate to mislead any of the newbies. Like I said, I'm just unfamiliar with the stats on translab. I only researched Middle Fossa v. Retro.
Lyn
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Heck, if you're up and going to lunch and shopping, then marathons are just around the corner.. ;) Sounds like you're doing pretty well.
Be mindful of the headaches. If they feel like pressure-type headaches, it could be a build-up of CSF. I also was getting pressure-like headaches and was put on diamox (a diuretic) to reduce the CSF production. After I got my stiches out, the area by my scar bubbled up (but not out) with CSF. Little did I know that I would have a slow acting allergic reaction to the diamox that ultimately landed me back in the hospital for 4 days a month after my surgery. So, pay attention to them and make sure you tell your doctor about them when you get the staples out. I'm not saying it is or will be a problem, but just be super aware.
No sweat about the confusion.. Like most here, I like having accurate (not saying you weren't accurate) and complete information about certain topics in case it comes up later. Confusion cleared up, so it's all good. :)
Regards,
Brian
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Brian,
Wow, I never considered that it could be due to something like that. l'll make sure I mention the headaches to my doctor when I get my staples out tomorrow. Something to watch for. Thanks for the info!
Lyn
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Staples! Ouch. And I thought stiches were bad.
Lyn I had a lot of swelling around the temple area and one of the house doctors who wasn't my surgeon thought I was leaking CSF during a routine check-up in the hospital. My doctors looked and determined it wasn't anything to worry about. When I got my stiches out 8 days after surgery he took a close look at the temple area and asked me about fluid leaking from my sinus. I didn't have anything leaking. I had a lot of pressure from the temple area and what felt like behind the eye for about 4 weeks after surgery. I took some of vicaprofen and it worked great.
Mike
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Staples were no big deal at all. Just a tiny pinch on the ones closer down my neck, but I barely felt the higher up ones.
They said my swelling looks great and the incision is healing nicely. I'm still not sure what is up with the headaches. I'm still thinking it is a muscular issue. It isn't in my temples or in the front of my head at all, it is across the back of my skull, so that seems most likely.
Thanks so much for all of your great comments and suggestions. I love brainstorming, it makes me feel productive even thought I know that time is probably all that is going to fix this. :)
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Hi, I am suffering from the same type headaches. They start in the back neck muscles and if I don't catch it in time, it spreads to my entire head. I am three months post op and the headaches began on and off after the first month. I was put on steroids and antibiotics and they were better while I was on the meds, but eventually they came back worse than before. For the past 3-4 weeks I have had them about 2x's a day. Spoke with my neurotologist again and we decided to try Botox injections. So on thurs the 24th I had 4-5 injections. My doctor said it takes 4-5 days till it works. So I am keeping my fingers crossed and hoping that in 3 more days I won't have these horrible headaches anymore. Just to let you know Botox was not his first suggestion, but the medication he wanted to try interacted with meds that I take daily, so that option was out. So Here's hoping all our headaches become a bad dream :)