Anyone with no headaches?

[Joef]

No headaches here too! .. I did get a small ones when I first got the BAHA, but I took out the BAHA and took an couple of asperin and it was gone .. I was almost 4 cm with Trans-Lab ..

[SKT]

CrazyKat - yeeeeeeeeeeeeeeeesss - I get the horrendous screaming in my ear and the pulsating tinnitus in my deaf ear. The pulsing is just so distressing.  It's my worst symptom by far, along with the extremely loud tinnitus i get , particularly in the early evenings. I find it so hard to cope with - I feel so ostrasized when i get - like i'm in my own world, where only I can hear that loud loud screaming in my ear.  I look around at other people when I'm out, and still remain in disbelief that they can't hear it.....

Do you think maybe with the pulsating tinnitus - it gets worse when you lie flat and the blood rushes to your head?  I have found that on the days that I get it, it's alot worse when i lie down.


Headaches - I had a 3.3cm  - had translab approach - I get headaches, but always have so can't say if it's because of surgery.  All the research I did and advice I got from various surgeons is that retrosygmoid carries a higher risk of headache.

[Lisa Peele]

I had a 4+ cm tumor removed via translab nearly two years ago.  I had "unexplainable" and random headaches before my tumor was removed (especially during pregnancy), and had some "head noise".  Since the surgery, I have had no headaches and no noise or ringing in the ears.  I am pregnant (5 months along) for the first time without the AN and have not had the horrible headaches with this one.  I just assumed they were part of pregnancy for me...but maybe not.

[thecakes]

   I had translab.  I don't know the size of tommy,, the dr never said.

[Crazycat]

SKT,

    Sorry for not responding sooner. I had to hit the ground running this morning for an early afternoon gig.
In answer to your question, yes, it seems to be at its worst when I am at rest or laying down. It happened tonight after I came home. My left ear is screaming and buzzing at this very moment. I hope the damned thing isn't growing back!! My ENT says the incidence of regrowth of these things is very rare though. Last time I saw him I did ask about the tinnitus. I asked, "How can there be tinnitus in an ear without an
auditory nerve?" He replied that they "think" it may be the brain, sort of searching for the nerve, turning up the internal amplitude so to speak - if that makes any sense. So it would seem that are experiencing a common malady among A.N. victims.
     
          Well, it's back to the hospital tomorrow morning for some more blood work and an upper endoscopy. The CrazyCat is receiving the second part of his 48 year "comb-out". Heeheeee!!!! My Third M.R.I. is scheduled for early May to check for regrowth.

         Take care,  Paul

[SKT]

CrazyKat

Thanks for the post.  I wouldn't wish this sort of crazy tinnitus on my worst enemy - but it's been so nice speaking with you.  I've really not come across too many people on this site who have experienced the pulsatile tinnitus. That can get me really run down sometimes as it keeps me up for ages at night.  Tonight my tinnitus was at its full screaming raging levels at my father in law's dinner. It can be at such an unwelcome friend.

Thanks for passing on your ENT's advice.  Seems they just don't know.  It does feel like a trauma signal from the brain I think.  I had a full hearing ear, and one day my head woke up with no ear mechanism. It hasn't been happy since.....

Sofe

[Battyp]

Interesting..I had the pulsatile tinnitus before diagnosis when I'd lay down and was stressed.   Nothing since sugery just a nice steady annoying hummmmmm....  I also now have tinnitus in my right ear since surgery and my new ent said it was probably due to brain trauma or from the skull being invaded during surgery.  I'm hoping it settle downs!

I was wondering if those with translab got rid of their tinnitus but I guess not according to what you guys said.  Was considering additional surgery to stop the noise and trade it in for a whoosh  lol

[SKT]

I really dont think surgery can get rid of the noise - they have no way of predicting which translab patients (or any surgical patients for that matter) will end up having tinnitus post surgery.  If there was a surgical technique discovered to rectify tinnitus, there would be one very rich surgeon out there.....

[Battyp]

Thanks SKT, I was told the tinnitus would leave but there would be a whooshing type noise.  Thought about trading in the old sound for the new but of course always worried I'm going to make it worse and now I'm adjusting...hate it but adjusting!

[Captain Deb]

CrazyKat - yeeeeeeeeeeeeeeeesss - I get the horrendous screaming in my ear and the pulsating tinnitus in my deaf ear. The pulsing is just so distressing.  It's my worst symptom by far, along with the extremely loud tinnitus i get , particularly in the early evenings. I find it so hard to cope with - I feel so ostrasized when i get - like i'm in my own world, where only I can hear that loud loud screaming in my ear.  I look around at other people when I'm out, and still remain in disbelief that they can't hear it.....

Do you think maybe with the pulsating tinnitus - it gets worse when you lie flat and the blood rushes to your head?  I have found that on the days that I get it, it's alot worse when i lie down.


Headaches - I had a 3.3cm  - had translab approach - I get headaches, but always have so can't say if it's because of surgery.  All the research I did and advice I got from various surgeons is that retrosygmoid carries a higher risk of headache.

That "hearing" the blood pulse thru your head is indeed distressing, but it really gets alot better with time as your head heals.  Changing positions used to really trigger it for me--sitting to standing, standing to lying down. After three years, I hardly get it at all, but it will kick in when I'm having a migraine.  It will go away in a while, for the most part anyway!

Capt Deb

[DeniseSmith]

Translab, no headaches.  tumor 2 inches.

Denise

[Crazycat]

Ahoy there Capt'n Deb! And thank you SKT......

   Thank-you for your divination and prognostication regarding the pulsating tinnitus. I know what you say is true about this. I also feel that, although I'm in pretty good shape, I'm still in the healing phase after only six months. I was reading that Mark Ruffalo - the actor - disappeared for about a year before resuming work after his surgery.
      Someone told me that Lou Grahm, the lead singer from the band, "Foreigner," has also been afflicted with an A.N. and received his treatment at Mass General in Boston, where I was treated. Not 100% sure if this is true or not but it has come from a pretty good source.

   Had an upper endoscopy yesterday. It went well and was quite an experience. I was tranquilized like an animal on "Wild Kingdom". After spraying my throat with a numbing aerosol that stopped the gag reflex, they injected me with Demerol and a tranquilizer to put me down.
This, however, did not render me completely unconscious. I came to as they were plunging this black, tubular device down my gullet to widen the esophogeal sphincter. I was bucking like a roped calf before passing out again. This was almost as much fun as the companion colonoscopy I had in December!! Now it's time to have my "oil" checked (cholesteral) and a return head M.R.I.....

I'd also like to report that I had my first headache in over four months after this procedure yesterday; probably due to the drugs they gave me. The left side - leeward - , anterior part of the head and the left side of my face, behind the eye - just like the good ole' days recovering in the hospital. Nothing that three Advil couldn't snuff out though.

Speaking of eyes, did you know that neromas or schwanomas can grow on the optic nerves as well? I know of a woman who has had this condition. Good God!!!!

                                               Paul

 

[wind6]

I am happy to report that I still do not get headaches. At about 4 weeks post-op I started having horrible head pain that would wake me up everynight. My neuro put me on 1 tablet of Flexeril at bedtime and poooof...the head pain vanished and has not returned so far.

[Larry]

Windy wench, you are lucky with the no headaches. I get so annoyed (can't really say what i think on this site) with my headaches. It is such a horrible burden. At times, I just want to squeeze my head off coz none of the drugs help me.

I must say though, given the other problems that other posters have had, apart from some vertigo, and the headaches, I'm ok.

It seems like this dreaded growth leaves a legacy of some sort to people.


Larry

[Captain Deb]

Windy wench, you are lucky with the no headaches. I get so annoyed (can't really say what i think on this site) with my headaches. It is such a horrible burden. At times, I just want to squeeze my head off coz none of the drugs help me.

I must say though, given the other problems that other posters have had, apart from some vertigo, and the headaches, I'm ok.

It seems like this dreaded growth leaves a legacy of some sort to people.


Larry

Laz,
My doc recommended Botox injections for my headaches, which weren't covered by my insurance, so I had to decline.  Just as I sold a painting for huge bucks and said "yay, now I can Botox my head" they started to fade away--at least the daily ones. Have you talked to your doc about Botox in the head?  Seems like they are so budensome to you that they may be a good option for you to try.

Capt Deb