Septoplasty attempt at helping the pain/ Sluders Syndrome

May 3, 2016 I'm going to see if removing this nasal spur they found in me five years ago will help alleviate some of the pain. I can only hope. But I worry.

Five years ago when mayos ENT doctor told me they found I have a very deviated septum and a nasal spur I didn't see how that was connected to the eye pain .

He gave me a 50/50 chance of it helping my eye pain.  At the time, 50/50 didn't sound like good odds.

Now, after ten steriod injections, numerous drugs and their side effects, all sorts of 'alternative treatments'. I even allowed my primary to try an idea that has never been tried. Prolotherapy to the trochlea. I think it may have helped but one I find myself back to this subject. 50/50 is sounding pretty darn good. 

See, I started a support group quite some time ago on Facebook called 'eye pain sufferers' it's a private group, you can't  find it unless you're invited. But one woman came into the group about 8 months ago and her daughter was diagnosised with trochleitis.  One night in her local ER an intern saw  her daughters scan results and reported on something called a 'contact point headache' or Sluders Syndrome where the nasal spur impacts in the sinus and causes this rare form of headache.

Her daughter ended up having this surgery that I'm going to have May 3rd hers was an almost  instant success and 100% cure. 

I have to try it. I can't allow any other radical experimental treatments until I try this one. The new ENT I'm seeing at mayo says what I have is "impressive" I laughed when he kept referring to my deviated septum as impressive and my nasal spur as "impressive." I told him, "I don't think that word means what you think it means". (To quote the Princess Bride. ) anyway, I digress. 

I'm scared.  Scared not of the pain my nose is going to be in, but  the pain that it can trigger in my trochlea.  And the migraines that could follow. I'm afraid no pain meds will touch the pain surgery to this area could cause. 

  I'm guessing I won't know for a few months if it so help the pain.  Scared silly.

5/12/16 Its now been 9 days since my surgery at Mayo Clinic.  Everyone was extremely careful not to touch my eye that whole day of surgery. The anesthisologist didn't even allow the oxygen mask on me for fear of putting pressure on the eye.  They only made an incsion on the left side of the septum avoiding the right all together.  The surgery went very well.  I didn't wake in horrid pain like I feared.  It was there ( the eye pain) But soon after waking they gave me hydrocodone.  The trochlea pain has not flared this week.  It isnt all gone yet. Its too soon to tell.  Just got the splints removed yesterday so we still have some healing to do.   I am hopeful and at least grateful it hasnt made it extremely worse.  I have had more pain meds this past week so once I reduce that we'll be able to tell what effect the surgery had on eye pain.
If anyone is researching this its also called "Sluders Syndrome"  

7/10/16 update:

It's been rough to say the least.  Almost constant trochlear pain and general ache in the superior oblique muscle. I even went and had my 11th steroid injection into the trochlea around June 6th. The trochlea was mildly phased by this and a couple weeks later the neurologist  prescribed an 80mg taper of prednisone.  After a severe severe trochlea attack one week after my neurology visit, I reluctantly took it but started at 60mg instead as I get tachycardia from prednisone and the 'jitters' are so uncomfortable. Sadly I can't say the oral prednisone phased it like I thought it should.

Strong narcotics help but even then, it doesn't take the pain away. We're dealing w a massive electrical shortage of sorts in that area.  I'm monumentally 'bummed' to put it lightly.

This upcoming week my primary Doctor is really wanting me to pick up with what he calls prolotherapy injections to treat the trochlea like a tendonitis of sorts.  I'm very torn about this too because my world class ophthlmologist at Mayo says 'no, he doesn't think it's a good idea.'  ( I think mainly as it's never ever been done in the history of eye health ). 

Yet, my primary, whom I trust greatly also, says 'yes, this is a solid effort with low risks'. 

I have no good options.  I'm very tired.  The attacks and pain leave me exhausted. The medications I use to treat the pain have ample side effects.  

PLEASE! We need more research on these stubborn cases! About three or four years ago I started a support group for people like me on FB. Two women in the group are now about to undergo removal of either the trochlea ( one woman is doing that plus her SO. and IO ) and another woman is about to have her SO. Removed.  I'm terrified of this.  My doctor at Mayo has entertained this thought also, but it would massively change my life if I pursued it.  Meaning, I would have to shut off vision w a black contact in my right eye if we removed the trochlea.  Meaning, loss of depth perception , loss of my job. Affect driving etc.  

please! If anyone has any ideas contact me.

Gretagail73@gmail.com

9/28/16 Update:
I would have to say the septoplasty failed. 
My primary is trying something new.  At the end of June he started treating my trochleitis as a tendonitis. He's been injecting Mannitol and Marcaine every three weeks into my trochlea.  It stopped the 2.5 month attack in its tracks!  Unbelievable!  Let me tell ya, he's never done this trochelar injection before so It was an experiment and i was the test dumby.  But now I think he's done it four times and he's become a pro at it. We're shocked its helping after all the radical things I have done. Well, Im shocked.  My PCP not so much, thats why he went a head a tried it.  
I get botox for migraines for the past many years, in addition to everything I do.  The past 10 days the stabbing returned to the trochlea after having been quiet since July.  I was afraid of it all coming back ( still am) I talked to my neurolgist today she feels the botox wearing off contributed to return of the stabs.  When the botox wears off... it can get pretty ugly.  the past 10 days.... was pretty ugly. Severe migraines, severely nauseous, had to go to the doctor twice to get a migraine cocktail to hault the assualt. 
Anyway, to quote monte Python "Im not quite dead yet... I think I'll go for a walk"

1/3/18 update :

A week ago, I had to submit to a sinus surgery.  It seems after my septoplasty my first run in a allergy season my sinus swelled shut...making for over  year long struggle w sinusitis and finally sinus infection for over 10 months.  I’ve had so many surgery’s now, I just had my husband drop me off and we called him later to pick me up.  Surgery went well.  Just can’t believe I needed another sinus surgery, thankfully it didn’t trigger more eye pain. Had a wicked attach four days prior to surgery.  I felt like the full sinus under the eye certainly contributed.  But at least I got off NSAIDs for over a week now, :)