Author Topic: My turn  (Read 12110 times)

EJTampa

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My turn
« on: August 29, 2009, 05:51:23 pm »
Questions for those of you who developed headaches after surgery.  Did anyone get them 3 or more months after surgery?  I had none for more than 3 months, then started getting them.  Doctor asked me about the numbness, which is when I realized I didn't have any numbness left after the surgery (amazing, really).  That got me thinking, maybe my headaches started when things stopped being numb?
 
I rarely wake up with a headache.  I get the headache after being up for about 5 minutes.  Don't have to do anything stressful, just get up and go sit on the couch and fire up the tube. 
 
My headaches start as pain deep in the AN ear, then quickly migrate around the back of my head to the other ear.  it eventually gets pretty bad (within 30 minutes).  Now I take a Tylenol right when I get up.  I still get about 20 minutes of pain before the tylenol kicks in, but it beats waiting for the inevitable.  Has anyone had similar pain?
 
I had a nerve block done, and it *might* have provided some relief for a couple of days, but no real benefit.  I saw where some here have had the occipital nerve killed or removed.  Has anyone had nerve blocks fail but still had success with having the nerve removed/killed?  Doctor said this is a bit of a test, to see if the occipital nerve is at fault, so I think I failed that one.
 
I probably have more questions, but we'll start with those and see what responses I get :).
 
I am one of the lucky ones with the headaches.  My headaches respond completely to 500 mg of Tylenol or 200 mg of Ibuprofen.
 
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.

msmaggie

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Re: My turn
« Reply #1 on: August 29, 2009, 07:39:37 pm »
Hi Ernie,

I am 8 months out and do get headaches, but not daily. Sometimes I wake up in the wee hours--nearly always 4-5 A.M.- with a crushing headache, the kind where you know that if you move your head too quickly it will fall off your shoulders.  If I take something OTC, it will abate, and then it will be completely diminished w/caffeine.  Don't know why it happens, but it doesn't happen frequently enough for me to feel that I have to seek medical help.  I'm so sorry you are have having this problem!  Hope someone is able to give you some good advice.  I know that headaches diminish quality of life. :'(.

Priscilla
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

Janet

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Re: My turn
« Reply #2 on: August 29, 2009, 10:37:56 pm »
Ernie,

My headaches were somewhat different than yours. They were more electrical and my occipital nerve was one of the problems. This would trigger migraines as well.  I would need medication before I could start my day.

You might try this. Set you alarm 30 minutes before you need to get up. Have water and Tylenol (fast acting) at your beside within reach. When your alarm goes off, take the Tylenol and slowly increase your head angle by using more pillows over the next 1/2 hour. The Tylenol should have kicked in by then and the slow raising of your head might prevent triggering pain. I had a blood vessel that was piercing through the nerve and going from a flat position to standing quickly caused the blood flow changes to trigger the nerve. It was so painful that I could hardly breath, let alone move. Doing this little routine helped. I had it surgically fixed and I jump right out of bed now without problem. Sometimes, I would drink coffee before I would get out of bed. I think this helped too.
 
I also had a scar neuroma. Much less painful than the other. If you press on your scar, do you have a sore spot? If yes., where does it radiate? This could be a symptom of a scar neuroma.

Best Wishes, Janet
Surgical removal of 1 cm x .8 cm x .6 AN on 4/2004.

Syl

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Re: My turn
« Reply #3 on: August 30, 2009, 03:22:06 pm »
Ernie:

I'm so sorry that you've joined the headache crowd.

My headaches began maybe about 3 weeks post-op. The pain would usually stay on the AN side. I began taking Tylenol and it helped pretty much all the time. Applying heat to the neck also works wonders. My headaches rarely last more than a half hour. Unfortunately, my body came to rely on Tylenol. It turns out that some of those delbilitating headaches were rebound headaches.

I don't get the debilitating ones anymore and I don't get them as often thanks to my neurologist who prescribed Pamelor. It helped get me off Tylenol, which is not good for your liver and kidneys. I've been on Pamelor for about 6 or 7 months. It's been months since I've gotten one of those debilitating headaches that made me cry. I still have pain, but it continues to diminish. What I've felt for the past month or so is tightness in my neck an very mild pain. I see the light at the end of the tunnel. For a while I thought that I would have to take Pamelor forever. I'm almost headache-free.

I, too considered myslef one of the lucky ones. My headaches rarely last more than a half hour, even the debilitating ones. But couldn't imagine waking up with a headache every day for the rest of my life.

I hope this helps.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

EJTampa

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Re: My turn
« Reply #4 on: August 30, 2009, 04:34:18 pm »
Thanks for the quick replies.  My headaches are not really debilitating, but they can get pretty painful.  I do worry about the whole rebound thing though.  Taking 500 mg in the morning and 500 at night should not bring me to that point.  Still, I woke up at about 4 AM with the headache already this morning (first time for that), and it was back in full swing when I got up around 9 AM.  I waited until 11 AM to take another Tylenol.  It's now 6:30 PM and while there is some pain, it's not enough to go for the tylenol yet :).
 
This time, there was something new.  This morning, when I turn my head left to right, I could hear (feel?) crackling in the back of the neck.  Like something was rubbing.  Yes, I'll convey all this to my doctor too.
 
Thanks for the well wishes.  I thought about not posting about my headaches since there are many others with far worse symptoms than mine, but then I remembered how nice it is to hear from those that have been in your shoes (the whole comfort thing) :).
 
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.

Kathy M

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Re: My turn
« Reply #5 on: August 30, 2009, 07:37:12 pm »
Ernie, you've always got friends here and I'm glad you decided to post.  I've not had headaches, so I can't offer a thing on that issue, but with my post-op challenges, I have found continued comfort and support here that really helped me (and continues to help me - I get my stiches out tomorrow from surgery #3).  We will both celebrate when we have a year on record of having no issues at all to post, right?!?

Take care,

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!!!

leapyrtwins

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Re: My turn
« Reply #6 on: August 31, 2009, 06:47:16 am »
Ernie -

sorry to hear about the headaches  :(

Capt Deb seems to be one of our resident experts on headaches.  If she doesn't find this thread, you might want to PM her for advice.

Good luck,

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

staypoz

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Re: My turn
« Reply #7 on: August 31, 2009, 11:01:17 am »
Ernie:  Janet's suggestion is a good one.  I set my alarm about an hour before I have to get up to take an advil.  I rarely have the just-got-up headaches anymore.  I had two occipital nerve blocks done by two different doctors and neither of them relieved my pain.  It's important to try to figure out where the pain might be coming from. 

Good luck!  You'll get lots of good ideas and support here.

staypoz 

tenai98

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Re: My turn
« Reply #8 on: September 09, 2009, 07:37:33 am »
Ernie
I always have very low grade headaches since surgery, but about 2 months later  the headaches went up to mid grade...I also get this pain in varying degrees that hit the eye socket and left side of forehead....For the last 2 months I have been awaken with headaches and upon waking up I have headaches.....the headaches come and go and there is no set pattern....all part of the course I guess..
Jo
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

4cm in Pacific Northwest

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Re: My turn
« Reply #9 on: September 09, 2009, 10:08:48 am »
Now I take a Tylenol right when I get up.  I still get about 20 minutes of pain before the Tylenol kicks in, but it beats waiting for the inevitable.  ...

...I am one of the lucky ones with the headaches.  My headaches respond completely to 500 mg of Tylenol or 200 mg of Ibuprofen...
 

Ernie,

I am concerned that you can develop liver issues if you take too much Tylenol or  stomach issues with the Ibuprofen.

Know that caffeine is a stimulant used to enhance many drugs… it will dilate things and relieve pressure… but then habits with caffeine can form as I can attest to... Next thing you'll be needing an afternoon latte (Ok OK self confession there  :-\ :-[ ;) ) and then at night you will not sleep as well as you still have caffeine in your system… so you wake up tired, wonky headed … and add yet another cup of coffee (or tea) to your routine... ah the vicious cycle. Sometimes I think I simply just have a caffeine withdrawal headache... since a nice craved fresh caramel latte does the trick to fix it ...

I see you had the retrosygmoid approach.

Read over the surgical notes (you are legally entitled to your own copy and should have received a copy at discharge from your surgeon) and see how they opened and closed the skull.

•   Did they use fat?
•   Did they save your skull piece and put it back in place later to seal the hole?
•   (If they saved it…) Did they place the titanium mesh and titanium screws over that saved skull piece?
•   Was calcium phosphate used as “skull putty” to cover up the hole?

DHM

« Last Edit: September 09, 2009, 10:12:48 am by 4cm in Pacific Northwest »
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

tenai98

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Re: My turn
« Reply #10 on: September 09, 2009, 10:37:00 am »
DHM
when u posted the same questions on one of my threads, I asked my ENT what was use....answer....NOTHING...just fat in the cavity and closed over with the skin....he felt for an indentation, and couldnt find one ......Neurosurgeon office said the did put the bone fragment back....
JO
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

LOIS

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Re: My turn
« Reply #11 on: September 11, 2009, 09:33:33 pm »
Ernie,

Sent you a pm about the headaches and some other stuff.  I forgot to ask you, how did you do on your 1 year post op mri?  Mine came back with what looks like enhanced scar tissue.  I didnt know scar tissue enhanced.  But Dr Bartels did say that can be part of the headache problem.  Watch the advil and tylenol.  Advil can cause ulcers (been there done that) and tylenol can cause liver problems (now have fatty liver).  I dont really understand a fatty liver yet I dont have a weight problem.  Just the opposite.  I've been told I need to gain weight.  Anyway, read my pm.  I'm interested in how you are doing especially since we had the same type of surgery with the same Dr.

Lois
Diagnosed 07/08   1.2 x 1.1 cm. left AN Retosigmoid surgery 08/08 with Dr. Bartels  @ Tampa General Hospital

Seal

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Re: My turn
« Reply #12 on: October 11, 2009, 07:18:50 am »
Hey Ernie,

We had a similar operation around the same time, and I think I remember that you also had a quick recovery as well, just as I did.       Our recoveries seem to be similar, and unfortunatly, I am also following you along with the same headache problem.   It is reassuring to  hear that you are having similar issues; my issues with the headaches seem to be around 30 days behind you.    So maybe we are just experiencing the healing process as we go along on our recoveries.    In a biking accident a few years ago, I broke a collar bone, ribs, and shoulder socket, and it really took me the better part of the year to get back to my original form and level of fitness & feeling good.     So I'm guessing that our heads may take that long as well to recover, especially with the healing needed to repair and reconnect the skull together.     Bones do take a long time to heal 100%.   

My headaches are happening when I get up in the morning.    Over the counter Ibuprofren seems to take care of the issue (3 X 200mg).      Also if I have the time, I go lay down in bed again for a little more quiet time.   The weekends are great because I don't have to rush out the door to work.    However, with three little kids and a new puppy,  the house gets rocking by 6:30AM.   So there is no where to hide!!!!    I've stayed away from Tylenol due to the liver isses because I enjoy my glasses of wine with dinner every night.     The headaches really only started for me about 30-60 days ago, but right now, they are pretty frequent.  Once I am up though and I get the second coffee in me, usually I am good to go.      The issue does seem to be muscle related as well.    My neck as become stiff again but only in the morning with the headache which seems to be a low grade, overall ache as opposed to a piercing migraine.     Anyways, it seems manageable at this point, and I hope to see it fade away in the coming months.     I hope the same for you!

Steve
Diagnosed 1/14/09 - 2.4cm AN right side --- about 70% cycstic
Retrosigmoid wiih McKenna & Barker - total removal successful on April 13th. 
Issues: balance, facial & mouth numbness, hearing loss right side
Results:   numbness gone, balance is good, SSD right side. Great results.

leapyrtwins

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Re: My turn
« Reply #13 on: October 11, 2009, 06:51:20 pm »
Ernie -

it's been a while since you posted, how are the headaches?  Have you found any relief?

Hope so!

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

ombrerose4

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Re: My turn
« Reply #14 on: October 14, 2009, 02:36:49 pm »
hi, I am just about three weeks post-op and began having pretty bad headaches and facial pain for the past 6 days. I usually wake up with an excruciating headache that responds to Tylenol. The headaches come and go all day. The worst part is the facial pain. By the end of the night I just want to rip my face off. Last night I had very bad facial pain, became very nauseous and ended up vomiting a few times which relieved the facial pain. Spoke to my neurosurgeon today and he wants me to go for an MRI, so I am waiting for ins. to okay it. I'm alittle surprised about an MRI so soon, I thought he was going to put me back on steroids. will let you know what happens.
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010