Ten years post miracle

It’s been 10 years this week since my “eye miracle”.  I’ve been Re feeling all the gratitude I have for the second chance, new take, on my view of life.
I’m still so aware of what a gift this surgery was to me.
It’s fall here in central  MN. The colors are beautiful.  This just ads to the gratitude I feel.

Every Oct 20th I take a photo with my little bud, Elijah. I share my miracle day with his miracle day. The day he was born. It’s kind of a big deal to me, because I have no children, and my good friends invited me to be there to witness the birth of their first child. This was a big deal to me. I had never seen a live birth, and I probably never would have children on my own,  But as life would have it, Elijah decided to stay inside his momma two more weeks. Of course , he decided to come on the exact day I had to have my surgery at Mayo. I stayed up all night in the hotel hallway, so as not to disturb my husband and mother sleeping. I was  on the phone as my friend gave birth to Elijah. We had flip phones back then and I can still remember the photo I got on the phone, of Elijah with his big bright red lips. He still has these big beautiful lips today. I didn’t get to be there physically. But I was there completely in the hallway of that hotel.
I really didn’t sleep all night but I didn’t care. Michelle and her baby we’re fine. And I just had a good feeling that I was gonna have a good experience with this surgery. Mind you though I was nervous at the same time.
I remember in the operating room every detail. My favoirite was dr Holmes response when I asked if he was having a good day. “ I’m having a GREAT day!” What a great response. And he was excited. This means a lot. Because he’s English.  The English are not an excitable people in whole, but Dr Holmes... he never misspeaks.
And for some reason I remember the math equation he had written on the white board. It was a massive trig equation. I am allergic to math... so this stood out to me that it meant anything meaningful to anyone... I remember thinking..I should have paid better Attn to math. If I did, maybe I could have been a genius eye surgeon. :)
Anyway, the next day...I walked into Ginny’s little exam room and proclaimed “ Ginny! I have no head tilt!”
To this day, I tell people , “with one three hour nap, my head tilt was fixed. “ that my friend was a pretty good day!  Let me tell you
The next two weeks were marked by falling into walls, falling down stairs, discovering what 3-D was. My first day back to work at the spa... I never knew I didn’t have depth perception. My first day back was premature, I came into the spa to take care of an acne sufferer, her mom begged me to come in early from my recovery.  I will never forget the first realization of  “we’re not in Kansas anymore” this zit! I had to put a needle into the center of this volcano of a zit and through my magnifier I watched in 3-D Mount Vesuvius of a zit come AT ME! I wanted to vomit!  But there girls mom was sitting there watching me, so I professionally couldn’t react.  But inside, I was like HOLY CRAP! What the H E Double hockey sticks is going on here!?
Add that to literally, walking like a drunk everywhere I went....
I came back to dr Holmes and asked “ What is going on!? I’m falling everywhere.” He said, “it’s like I put a really strong prescription glasses on you and you can’t take them off”
A week later I walk into Ginny’s little room again ( Ginny was one of his orthoptist at the time) I was there for eye pain. I wasn’t used to the eye pain after surgery.  But no matter what, they put this book in front of me, full of children’s pictures, and you have to put on woody Allen glasses... I remember thinking , why must I look at these pictures when I am here for pain!? I never see anything in there anyway!  But I played along and did what I was told. Ginny opened the book  and low and behold...it was FULL of pictures! Full! I burst into tears and said “ we’re these here the whole time?”
I cried for a while. Because I realized, no one ever told me I was supposed to see anything. They didn’t want me to feel bad I guess. But it was a great moment discovering the miracle I was just handed. It was amazing. This is why I blogged.  I never imagined life in general would look differently. All different ! It was amazing.  I remember seeing an oil spill in the parking lot where I work and it was iridescent. I had never seen that before.  Only I would be amazed by an oil slick.

I could go on...  but at this time, my eye pain is much more controlled. I have a cowboy primary care provider that figured out to treat my trochlea pain like a tendonitis.  He uses prolotherapy on it.  He’s been a life saver. So now eye pain doesn’t control my every moment. He also found a new neurologist for me and he figured out how to manage the daily migraines I had following eye surgery. So ..my eye is manageable overall now. We have a way of living  with it. When I get bad again I just go to my cowboy primary and he gives me prolotherapy injections in the orbit.

I did get to see a live birth three years later when Michelle gave birth to her second baby Desmond. He is my child for life now.

I’m still grateful beyond grateful. I only think about how grateful I am when I’m looking out my eyes. But even then, I have dreams about my eyes... so even in my sleep I’m grateful.

Feeling truly grateful even 10 years later.

Elijah age 10 , 10-20-19

A bad blip 🙏🏽

I see my last post was 4-29-2017. It’s now sept 3rd 2018...

Suddenly...the migraines seem to have returned with a vengeance.  It’s heart breaking...I tell myself, this has to just be a blip. Just a really bad perfect storm leading to probably the worst migraines I’ve ever had. Well truth be told, I’ve only had two serious migraines since August 19th.

Migraine #1 though was nine days of sheer horror in my view. I did EVERYTHING for it and nothing worked. I have all the meds to stop this...they failed . Chiropractic failed. Hot baths, essential oils... etc   My doctor gave me my migraine cocktail of shots... didn’t even phase it on day four. The night of day four my husband took me to the ER I was beyond exhausted,  beyond nauseous.  I learned about a thing that happens sometimes w compazine : akathesisa = very bad. Panic attack ensued then a crash Got home from the hospital at 2:30am only to wake at 7:30a with the migraine atill there. And have to pace and pace and pace the house because of the compazine still acting... all the while I want to still throw up , still in pain, still sensitive to sound.  Last Monday,  day 9, I had a scheduled visit w my neurologist in Minneapolis. I had no one to drive me the 1.25 hours there.  The dr gave me a series of nerve blocks and trigger injections...I felt weird now on top of sick from my HA...with no warning I proceed go have another exhausting panic attack right in front of the poor neurologist...I realized I can’t drive home.  This caused the panic attack...the poor dr allowed me to sleep in an empty exam room til I felt strong enough to drive home.
Finally, the 10th day. It broke. And it was like being let out of prison...now though I was almost pre migraine again. Sometimes before a really massive migraine I get a sense of euphoria.  I love this phase even though I know what is likely coming. A migraine.  But I live In the moment.  I GET THINGS DONE! I was amazing , I got so much done I was almost manic. No, I was manic. I was an amazing machine.  But you can only do that so long.

Well I hadn’t really been able to eat much w the 9 days of hell. I  could drink cold water w peppermint. Well, I got my electrolytes out of balance and Wednesday one week post ER trip...I could not for the life of me get up. I tried to get up at my normal time of 7:30a or so only to have to quickly get to the toilet because I was going to faint. I made it back to bed . Fell back to sleep immediately.  I laid there and had to tell my arm, lift your arm, come on you can do it . I had to see what time it is.  It was 9:15am.  I never ever sleep that late mid week. I have to work in the afternoon.  Okay, no big deal... finally I got up and made it to the kitchen bar stool where I sat wanting the energy to make coffee. Oh my good ness... it was like my limbs were filled w lead.  My pulse moving around according to my watch was 53. I see on my trackermy pulse in bed was 42. No wonder I couldn’t move. My limbs don’t move and my eyes don’t stay open when I’m in the low 40’s. I finally realized. Oh, I’m completely dehydrated from all the zofran , opiates, and other drugs. Anyway , it took all day to recover and then Thursday my primary gave me an injection in my trochela of prolotherapy. Friday was good. Saturday was pretty good but terrible anxiety attacks. But I had a true break. I did have little hints of possible headaches flaring.. but no true ha

Then today...I was feeling good, I was at the Kingdom Hall for our Normal Sunday meeting talking and having fun when the ice pick hit the back left occipital bone. Wow! Okay no missing that , but then it faded. Kinda like if you can imagine being hit in the back of the head w a baseball bat and the pain that lingers after. It was okay, I took my Tylenol 3 during the mtg.  But then afterwards...about 2 hours later. BOOM! It hit again hard! So hard and was gettiagron atronger.

But now I had a friends five yr old w me. We were home alone.  Imitrex failed. Zofran helped. But horrid ha , I was shaky and sweaty... we have five friends that live on my block alone. My friend Norah (age 5)and I went to bring cookies to one couple down the street. They weren’t home, no one was home on our street that we knew.  Norah wanted me to pull her in the wagon. I did. It’s along story but I was actually really afraid. Afraid what if I end up laying on a lawn or layi
ng on my floor like I have in times past , I end up in tears and practically paralyzed. What if I need help and I scare my Norah bug?  So I decided to test her problem solving abilities. She’s smart.  Very smart.
Since non of our friends were home at all. I asked her, “what would you do, if I was sick and needed another adult to help me?”
“Call 911”
“ how do you find my cell phone and unlock the code then figure out where the phone is on the cell phone? “
Well that’s was a true problem so we moved on to finding any adult in the neighborhood. She did good. We also stopped by and talked to my next door neighbor Jennifer who Is a nurse. And I told Jennifer what were  discussing. It was a good dialogue to have.
We get home and Norah comes upstairs and says “what about Jims phone on his desk.?”
Oh dah! I forgot we have a land line. Yes, you don’t need a cellphone. So I said let’s go practice dialing the phone. And we did. But instead of calling 911 we called jims phone number.
I think I’m safe w my miss Norah bug. She’s pretty smart. But still, I don’t like thinking about stuff like that.
Tonight, the HA also, totally blew off imitrex. And muscle relaxers. It’s muted by my big guns.
I just can not go back to living how I used to. I just can’t live like that. It was so inhumane.
This has to just be a blip. Really bad blip.
Then 9-4-18: worst ha of my life... no meds worked. Went to the dr, they gave my trigger point injections and it went from bad to worse. A 8/10 to an excruciating 11/10 . If I has a weapon I wanted to just shoot myself in the face. Finally I threw up.  This is my oldest form of migraine back to my childhood. It is a classic migraine symptom only now my prodrome is my hands shake and I feel shaky in general for the day prior,  . Finally at 9:15pm suddenly something worked! I could actually get up and eat some toast and take in some fluids.  Woke the next day w a 5/10 but got it under control w meds. Now I’m scared of this being ynew

Finally a much needed break

For the past seven years, I've pretty much had a moderate headache to full blown migraine almost everyday.
 I was classified as a 'chronic migraineur'. It's amazing what one can do with a headache everyday.  When I look back, it's pretty amazing all the things I was able to accomplish with that millstone around my neck.
I was seen by many, many doctors, all trying their very best to help me. Many injections of Botox for migraines, injections for my eye problem thinking that it was a migraine from my eye problem. ( I fully believed it was  trochleitis with a trochlear migraine ) I had a septoplasty in hopes of fixing my migraines...  No avail. I even considered disability but that is not an easy process that's for sure! . I've tried every med I think until nope, one more med, and when that failed doctors would try another. It's amazing I don't need a kidney or liver transplant.  It's amazing I still have friends, still married.
Migraines bring a whole slew of their own need for meds.  You need triptans to try and abort a migraine. You need an endless supply of ibuprofen, muscle relaxers, meclazine for vertigo and can I say I'd  like to put stock in the company that invented zofran. Zofran, hands down, is a lifesaver. Well, that and the two narcotics that saved me 90% of the time when nothing else would help.  They too had a fail rate of maybe 10%. I went through a 3.5 week pain rehab course at mayo two years ago.
With chronic pain and 'attacks of pain' at that, you develop anxiety over pain wondering when it will hit, how long will it  last, what meds to take ,  will they even work? I then needed meds for anxiety along with a rare to find pain psychologist.
Many people in this country are up in arms over the failure of health care. I must admit, I know full well the limitations involved. I'm not even allowed this year to go to Mayo Clinic which is only 3 hours from me and one of the best in the country if not the world . Plus they were my doctors for 8 years. Yet I could no longer even purchase a health plan that allowed me to go there. That's  mostly okay, lets face it, I had exhausted all angles of the Mayo Clinic. Now I had to find new doctors.
I chose the one health plan that allowed me to at least keep my primary doctor. ( there was only one plan and I almost missed that boat too)  My primary took it upon himself to find me a new neurologist. This new neurologist in MSP had a whole new take. He threw out everything that had been done at Mayo. He said most nuerologist missed the most basic trigger. He felt the first year when I just had the eye pain, I must have been holding myself in such a way it triggered muscle tension.  So he went about treating the muscle tension. His ideas had few side effects. So I didn't see the harm.  He did five injections in the back of my head in the occipital area. Then started me on a med called Tizanidine. It's an antispasmodic. I was to get up to 16 mg a night as fast as possible. It had one key side effect.... near death.  Well, if you call extremely low blood pressure and your heart beating at  40 beats per minute near death. It caused frequent bradycardia and then what I imagine was a rebound tachycardia. But after about 8 weeks of the new med plus an amazing PT person the neuorologist made me see one hour from my home. ( I did see a brief break day 10-20 after the occipital injections) anyway, I had 4.5 weeks with out even a headache but certainly not one migraine. It's quite liberating. I never thought I'd see the day.  This past 10 days I did have 1 migraine and two strong headaches. I was a little discouraged but I still feel like maybe the migraines are really behind me.  I never thought I'd see the day. I do still have eye pain. But to not have this chronic migraine? Priceless.

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, :)