? Pre-existing history of migraine headaches = bad surgical outcome?

[JaneK]

Migraine sufferers please help!

Has anyone with a pre-existing history of migraine headaches been told that their post surgery prognosis for suffering migraine headaches and/or nerve pain would be increased?

I had my first neurosurgeon consult and was cautioned, very heavily, that due to my history of migraine headaches (and nerve pain involvement with my an now), that there is a significant increase in risk for chronic headaches post op.

Is feeling an pain prior to surgery really that uncommon?

For anyone with pre-surgery history of migraines that had surgery, did the surgery worsen the headaches post op? Also, please include the type of surgery you had.

Thank you!

[tsaff88]

JaneK,

I've had migraines for years (Maxalt is miraculous) predating my neuroma.  I've had both gamma knife and translab surgery.  Neither affected my migraines at all.

It's been about 12 years since I was first diagnosed with the neuroma and there never appeared to be any connection between the two conditions.  In fact any headaches caused by neuroma treatments were laughable compared to a migraine.

Here's hoping your results are the same.

Cheers,

TSaff88

[JaneK]

Hi tsaff88,

Thank you so much for your reply. I'm really encouraged by your outcome and I'm glad to hear from you.

Its terrific that you're doing so well! I'm going to look into the migraine med you mentioned.

I thought I had decided on the right plan for me until I had a very disheartening conversation with a neurosurgeon (which so far has been my only surgical consult) and I have to say it made an already difficult decision and situation so much worse.

I noticed you said you had both gamma knife and translab surgery, would you mind telling me how large your an was and where it was located? Mine is about 1.2 x .09 so it's still small and it's located in the cp angle and the extends back halfway into the internal auditory canal with a small cyst located in the smaller portion inside the canal.

Were you able to keep any of your hearing in that ear after the treatments?

In my case, I'm already having more pain and facial numbness than what is typical for a an of my size and I'm trying to decide if I just have over sensitive nerves, or if it could be related to the cyst inside the small boney canal, or possibly that for someone of my size (petite bone structure overall) that a an at 1.2 may actually be more equivalent to a an a little larger in someone with an overall larger bone structure? Regardless as to why I'm having so much pain, the surgeon seems focused on the size being "small" and the fact that I have a history of migraines which will complicate my outcome.

I really just want to go back to normal without the additional pain and an issues, but now I just feel more afraid and worried that if I have the surgery, my headaches will be worse and harder to control.

I think the only thing worse than migraines is migraines on top of the an pain and pressure. I feel like they cause kind of a layered effect and play off each other and end up creating a perfect head storm.

Do you happen to know if having a an that has reached into the cpa limits the type of surgery that can be done because I've read that the retro sigmoid approach is associated with the highest potential for post op headaches and the otolaryngologist that works with the neurosurgeon had said that was the approach they would take. The surgeon was so focused on telling my all the reasons why I shouldn't have the surgery that he never even gave me the official size of the an or any specific information about my options with the surgical approaches. He was very one sided and I feel that it took away from my ability to take all my options and risks into consideration. Given the fact that I have a cyst, I'm not sure waiting is the right decision (even if I didn't have all the other pain issues).

Do you recall being told that your prognosis involved worsening headaches with treatment?

I'm sorry to be asking you so many questions but you're the only person I've come across with a history of migraines pre an.

Thanks again for sharing your experience, I know everyone is different, but you've given me hope!

Kindest regards,
Jane

[tsaff88]

Hi JanetK,

When diagnosed my an was small, about 10 x 5.  I have a very large head and thick bones so proportionally my an was smaller.  I was initially referred to the Cleveland Clinic, so that's where all this took place.

After several years of no growth it started up again.  I went back and forth on gamma knife vs. surgery.  The radiologists said zap it and the neurologists said cut it.  My ENT at the time didn't have an opinion. (He was real piece of work and shortly after this went to work for a cochlear implant company and wasn't missed by me, my wife, or by the staff. I have an in law who knew him during his residency and just rolled her eyes when I said his name.)  I settled on GK because it was non invasive and there would be retained hearing.

After the GK I still had hearing in my an (right ear) although somewhat diminished.  The GK didn't seem to affect migraines one way or the other. The only other change after the GK was that my vestibular nerve died. It was a gradual process so I didn't have nausea or other issues.

After a couple years an MRI revealed that the an had resumed growing.  Now surgery was the only option.  By this time I had a new ENT and different neurologist.  Because of the location of the an they said translab was the only way to go. 

As you may have experienced, doctors who push surgery love to regale everyone with horror stories about how difficult and dangerous and challenging the surgery is after a GK treatment.  All I can say is that post surgery the ENT and neurosurgeon report that everything was clean inside and that the surgery was very straightforward.

Because of the translab approach I did lose all hearing in that side.  The surgery did not affect my migraines at all.  Also, since the GK had killed the vestibular nerve I did not have any nausea afterwords. 

I do have spells of head wonkiness, balance is dicey, and I recently got a bi-cross hearing aid to counter the deafness.

All and all I would do everything the same, GK then surgery if needed.

As far as migraines, I've had those long before the neuroma and I never could see any connection.

Definitely get to your primary care and get some Maxalt MLT to try for your migraines. There are other similar drugs but this is the one I use.  I've found that if I take one as soon as I feel a migraine coming on the migraine fades away.  The longer I wait to take the Maxalt the worse the headache.  It's not a total miracle. There can be rebounds the next day. There are limits also, 3 per week and 27 per month.  However I haven't had migraine induced vomiting once since starting to use the Maxalt so that's a huge win.

I hope this helps.

Cheers,

Tsaff88

[JaneK]

Hi Tsaff88,

Thank you again for replying to my endless questions. I sincerely appreciate you sharing your experiences in this journey, I've come to realize that this is a life changing diagnosis.

I'm very glad to hear that you're doing well, and that in retrospect you would make the same choices.
That seems to be an overwhelming area of concern for me, I don't want to look back and have regrets on the choices I make. It doesn't help that I was left totally disheartened by the surgical consult.

 To be honest, I'm disappointed and a bit salty at the cookie cutter advice the doctor gave me. I feel that the first thing he should of done was bring up the MRI images and used it to explain the size (including volume) and placement and how those lend themselves to my treatment options.

What I needed to hear was all sides of the equation including the best options possible  for preserving function of the facial, auditory and optical nerves long term.

I'm going for another consult with a different doctor and this time I think I'll be better prepared to ask more pointed questions to hopefully get better information. It definitely seemed that my history of migraines became too much a focus of the conversation instead of the an.

Your input really helped me to get a more rounded perspective regarding migraine involvement.

 I've told both the ENT and the neurosurgeon that the pain from the an and the pain from the migraine are vastly different and that I can tell the difference between them, but because most doctors don't associate ANs with pain they don't initially feel the pain is a result of the an, just the migraine. I think anyone with long term migraine pain pre an would agree that they are definitely different. The ENT was actually familiar with it and gave it a name that I can't remember but he said it's rare, the neurosurgeon had a very strong preconceived notion that only a large an caused pain due to pressure against the bone. I think a tumor growing through the myelin sheathing of a nerve is more than enough cause for pain, it's reasonable and a reality.

Every time a read a thread from someone who's doctor tells them they're symptoms are not related to their an it makes me shake my head. I think no one knows your body better than you do, especially when you're the one living with it.

Anyway, thank you for sharing, and listening; your responses have been a great help to me!

I hope the bi crossed hearing aid is working out well for you and that you continue to do well on your journey.

Take care,
Janek