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, :) 

The Pain Rehab Clinic at the Mayo Clinic In Rochester

Nov. 17-December 10th 2014 I attended the PRC ( Pain Rehab Clinic).
Four years ago, and aproximately just one year after my eye surgery, my eye doctor suggested maybe I should go to the Pain rehab clinic....  I was no where near ready then.

I thought it was a last resort kind of a thing.  I thought we had to exhaust ALL other possible solutions.  I felt if I went there it meant I 'gave up' on finding a cure.

Last August (2014) in my neurologist office I finally came to that point.  I had done it all, I have looked under every rock conceivable and was only surviving by the grace of Indomethician also called Indocin.

Indocin is no panacea either I guess.  After using it for long you run into more and more complications worst of which is stomach and kidney issues.  And I seem to reach a threshold where it no longer works.

I have done every conservative medical attempt.  More medications and combinations of medications than you can shake a stick at.  9 Steroid injections to the orbit.  Blood tests etc.  I stop at further surgeries to try to remedy the situation.  I learned at the PRC, 41% of surgeries result in a chronic pain condition.  I've had many a surgery.  Nine to be exact, 5 on my eyes, its no wonder I ended up with a chronic pain condition. I suppose it was bound to happen.

I have done every sort of natural remedy. And I still include some in my repertoire.  I frequently use acupuncture, massage and chiropractic.  Essential oils and Cranial sacral techniques.
I have tried some pretty 'far out there' methods.
I have learned from each modality.  However, nothing lasted.  Everything is just chasing symptoms.  Everything was reactive to the pain.

Before submitting to the PRC, I was a nervous wreck!  After I got into the program, about 4 days in, I wondered what all the anxiety was about.  Its nothing scary.

The pain, I was scared of the pain increasing I guess .  It is a commonly known fact they will pull all your crutches, that included Indocin.  Muscle relaxers, and especially narcotics. You know no other way then what you were doing.  So there is a level of anxiety that only those facing the PRC understand. My thought was I have seen every specialist on the matter.  Each gave their very best attempt and they couldnt solve it, why should I believe these bunch of 'specialist?'
But, I made the decision to go and once I make a decision I usually go full force into it.  It was all or nothing when it came to the Pain Rehab program.  I was determined to give it my all.  It was my last hope.  The statistics show it works for a lot of people I wanted to be one of the winners.  If the program didnt work for me I didn't want it to be because I didnt try hard enough.   If you ask them, I didnt just roll over and accept every morsel the "tribunal" of doctors were telling me.  But I did weigh heavily what they all said and applied what we had all come to agree on.  Anyone doctor who's had me knows I'm one to raise questions or voice my strong concerns.  The team at the PRC met every concern I had and then some.

They asked me to ween off slowly from my indocin.  So I wasnt in pain the first week.  Which was good. And the Second week I still was allowed one indocin a day.  ( I usually took two a day)
I got off the indocin about 8 days earlier than they asked over the long holiday weekend at home.  I wanted to test out life with their new suggestions in place of my old coping mechanisms.

I liked to report back to my friends and family that my 'captors were kind'
I bonded with my captors.  :) Much like Stokholm Syndrome. But all kidding aside,  They are all very nice and really do want to help you cope.

Before atteneding I searched the web for personal experiences about the PRC only to find a lot of negative talk.  It scared me. I kept reasoning, 'surely, it can't be THAT bad, Its Mayo after all! They're brilliant at everything else! Why wouldnt they do this right!"
Sure enough.  it does help!
I'm Glad I went through it. Now, I am allowed 2 days a week of NSAIDS or pain meds to treat Migraine and eye pain.  The rest of the days I do pretty good with out any pain meds and use the techniques taught at the clinic on a daily basis, not just when in dire pain.

Its not always easy to follow the guidelines they set out for you but it gives you focus on what to aim for.  I finally feel I can stop searching under ever rock for a solution. I am the solution. I have it in me.  And the few times that I may feel the situation is getting out of control? well, I have quality people I can count on.

Is it revolutionary what they are proposing? No.  But when you put it all together... it is kinda of revolutionary.  For me the breathing exercises do help alot.  Its just hard for me to sit still and do them.  They finally have me exercising almost every day.  Some how yet I have to learn to moderate my work load and keep stress under raps.  Each day I schedule myself so that I fit all the important things in, including meals and relaxation.

I thoroughly loved the education.  In order for me to really change my evil ways I need to understand why I SHOULD change.  I enjoyed learning how the path to addiction works.  I loved learning what all these meds, drugs and alcohol do in the brain and how they affect the body.  I learned why I couldnt handle anymore stress.  The pain load alone brought me high up on my personal anxiety threshold, then any little upset in my work load or family life threw me over the top and I wasnt able to handle any stress.  Knowledge it turns out, really is power.

Why does the program have to be 3.5 weeks or longer? It takes that long to see the results of deep breathing and regular exercise.  It runs from 8am - 4:45p each day to prove that a person can do a full work day and live to tell about it.

In the group I was in, almost everyone was on disability.  Some relied on canes and left the program, walking with out them.  I saw people in wheel chairs move to walkers.  I dont know, I was impressed at the power of sleep, exercise and oxygen.  Who knew?!

I am not on disability.  My way of coping with chronic pain was to do more and more and more to try to drown out the pain.  Guess what? That doesnt work either.  So now I'm working on moderation.  Balance. I'm happy to say, I hired an office assistant 6 weeks before I left.  This may be the best thing I've ever done for my pain.
It can be frustrating and a challenge to scale back.  Its a work in progress.

Let it be known ; The PRC is good.  Run by good people.  If you have been asked to go, go.  About 600 people go a year out of hundreds of thousands of chronic pain sufferers in the USA.  You should count yourself as lucky to get in.  Apply yourself whole heartily. What do you have to loose?
The pain.

Coming to grips with Chronic Eye pain and Headaches

I felt moved to write this after reading post after post of person after person who has this same trochlea pain and subsequent attacks like I do, coupled with daily Migraines.
 I started a 'support group'.  I set out to not 'be alone' with this supposed rare condition.  Well, I found, to date, over 40 different people globally who have been officially diagnosed with Trochleitis or have self diagnosised it.

We are all in different growth phases of dealing with the pain.  The random attacks.  Trying to figure out a pattern only to learn we can't figure it out.
I am 'lucky' I guess,  I have doctors who stay in the trenches with me.  I know I have a small handful of doctors who will 'hear me out' and work with me.  They believe me!  Most others with this same pain dont have any doctors who will even try to help them.  I am fortunate in this way.

The five stages of Grieving are at play here.
1) Denial with isolation, is the first phase. "It will go away".

2) Anger;  We've all been here.  I would add Jeaoulsy to this also, Jealous of others who seem to have perfect health.  Many think 'why did I get this?"  "why ME"

3) Bargining:  ( I took this from Psychcentral.com )

"The normal reaction to feelings of helplessness and vulnerability is often a need to regain control–

• If only we had sought medical attention sooner…
• If only we got a second opinion from another doctor…

Secretly, we may make a deal with God or our higher power in an attempt to postpone the inevitable. This is a weaker line of defense to protect us from the painful reality."

The support group is good in that we now know to we can really stop searching for that ONE doctor who will be the genius and figure out the right recipe or see the root cause of this trochlea pain.  We are all in the same boat together. Most of our doctors are saying basically the same thing.  "we dont know, but lets try this or that"  

In this way we have helped eachother alot.  Triptans usually are need grouped with NSAIDS to help us on our horrible days.   NSAIDS help on the average pain days.  Steroid shots into the trochlea help the most. Especially with Kenalog vs. Decadron we're finding.

We learn from eachother and we know where we can go for understanding.  We all go through these phases of Grief.  After all, we lost something very valuable.  The pain free person we used to be.  We miss that person terribly most days.  When we dwell on this too much we slip into #4.

4) Depression:  Dispair.  Hopelessness.  We're going to be in pain like this for the rest of our lives possibly.  This is a horrible feeling.  But it is normal.  For me, I visit this in small spurts.  I think when you have a chronic condition of any kind you can slip in and out of these five stages at any time.  Its like the 'old you died' and yet you're still a live.  Its a very confusing place to be.

Mostly I dont like the person I am to my friends and family when I allow my self to stay here long.

But then we all know what stage 5 is....

5) Acceptance: This is the goal. Its a long hard road to get here, however, keeping this goal and step in mind while going through all  the other steps, I think, is invaluable!   

Once you come to grips with this is not going to go away.  Then You focus on 'how do I live now?"  This is my new normal.  The anger step will say "I DONT WANT IT TO BE MY NORMAL!"  But at some point, you come to grips with , 'now I have to live'  No more searching for solutions, no more playing the 'what if' game.  No more 'catastrophizing' the pain.  ( Imagining how bad it can get) 

For me, journaling my thoughts and feelings daily helps.  However, I rarely go back and read what I wrote.  I leave it all there on in my journal and I dont 'carry' that with me in my head. 

Finding a good counslor to help you move forward helps!  Mine, presently has me reading a book on being 'balanced' .  Also, she has me writing down 5 things every day I am grateful for.  This has been a good exercise.  It makes me search through my pain days and find something I honestly feel grateful for.  Even if it is something simple like "I'm grateful for this chocolate cake!"  :)  On days I really cant find five things, I settle for 3 things.  3 is better than none.

I made a pack with myself to not say 'NO' to invitations to do things with others.  To not isolate myself.

Staying distracted helps the most.  Music destracts me, funny movies, ( What about Bob? is my go to movie when I'm depressed.  Fawlty Towers is my go to show when I'm in anger mode, "Sherlock is my ultimate distraction) 

My job is medicine to me.  I've had to alter my hours so I can rest more, but I wont give it up as it serves as true pain meds.  I'm an esthetician at a spa and it helps me to relax when I help others to relax.  I love people and try to stay absorbed in their issues and trials.  Surrounding myself with others helps me to realize , 'hey! I think we all have some burden we must bear"  Personally, I have concluded the death of a child is the worst, and social/ emotional pain and  problems in the family are far worse than physical pain.  Although, I have my days where I feel 'woe, is me'

This pain experience has helped me draw closer to my creator. 

 I have experienced first hand the truth of 

                   Isaiah 40:29 

29  He gives power to the tired oneAnd full might to those lacking strength.*+30  Boys will tire out and grow weary,And young men will stumble and fall,31  But those hoping in Jehovah will regain power.They will soar on wings like eagles.+They will run and not grow weary;They will walk and not tire out.”+

I wish all of you who suffer ... Acceptance.  There is much peace in finding acceptance.  You can have your days of anger, depression, bargaining etc. But hopefully most days you spend in 'acceptance' Sincerely, Greta

Defining "Rebound " Headaches

A few of my fellow 'Trochlear Migraine' buddies have asked me to put on the blog how I define what a rebound headache is... So here goes.

After reading "Heal Your Headache" by David Buchholz, MD I finally understood what was meant by a re bound headache.  But I still didn't think I was having trouble with that.

Our neurologists tell us we are only allowed 2 days a week of pain meds.  This is not comprehensible if you suffer from chronic almost daily headaches/migraines.  What do you mean I can't take SOMETHING when I have a headache?!  

I was at a point of taking 100mg of Indocin daily with a narcotic for the really bad days. It was no longer working... That's when my neurologist explained it to me best. 

Dr. Bucholz explains that when you take a pain reliever, the pain receptors in the brain are 'bound' with the medicine, and the pain receptors are quieted... but after the pain receptors have been trained to expect the pain med to bind them, the now will sort of SWELL looking for the pain medicine when it wears off.  They want to be 'rebound' with the medicine.  They stay LOUD and searching searching, searching, looking to be bound with pain medicine. 

Then my neurologist explained the next step. She told me what I have is a 'monster of a problem'.  Daily Headaches.  But after a while it becomes a Tyrannosaurus Rex and you just can't feed it enough pain meds to keep it happy.  Soon you land where I was at... Nothing is working....NOTHING! 

I was devastated, but I knew she was right.  I had to stop my daily pain meds.  Ibuprofen, tylenol all of it.  I cried all the 3 hours home mostly because I knew she was right.  I was scared.  I had to loose what I thought was my safety net.

I am happy to report however, after making it through the rebound stage, ( two days)  I wasn't any worse off than I was before and maybe a little better.  My stomach was the happiest as all the years of meds had chewed holes in my stomach.  

Best part is that when I did take pain meds.  They actually stopped the pain, and I got a two day break, enough to build up strength to face the pain once again.

Fun fact?  According the to infamous HoneyChuck... you can have meds round the clock if you need on those two days. Its not the amount you take its the length, it can't be longer than two days or else you train the pain receptors all over to expect the pain meds.

You could discuss maybe trying a prednisone taper while getting off your pain meds. 

Now... my next adventure should be caffeine headaches... I'm just not ready to give up my Jo though.

The difference between Ophthalmologist and Optometrist's

"Your sight depends on seeing the right eye doctor at the right time."

Recently I went with one of my dearest friends as she took her 6 year old to the optometrist who also specialized in Vision therapy. Another dear friend referred her to this optometrist .  I'm interested in the subject immensely of course,  so she allowed me to go along.

If I hadn't been through so much with my own eyes, I would have never batted an eye at this subject. This optometrist was excellent....But I knew... She is still not a medical doctor.

The optometrist was very kind and appeared very smart.
The clinic had all sorts of high tech equipment.
We were in a smaller town in central MN.  I am used to going to the Mayo Clinic in Rochester and this little clinic had equipment that appeared to be of higher tech than the revered Mayo...

This appointment was very important as my little six year old friend, seems to be struggling to learn sometimes in school.  We wanted to make sure his eyes were not contributing to his struggles.  Turns out, yes! According to this optometrist he needed a new prescription.  He favors one eye affecting his depth perception etc.  but as I looked at the perscription I found it odd that the child needed equal prisms in each eye and now bifocals at age 6.  I was a little worried about how hard it might be for a child to adjust to bifocals when I hear adults finding it  quite difficult for athem to adjust to bifocals.  I was worried he'd be just frustrated and take the glasses off altogether.

Optometrist, as I understand it, have not gone to medical school. They go to four years of optometry school.
Ophthalmologist, have gone to 8 years of medical school. And some have gone on to 2-3 years of subspecialty training.

Optometrist, specialize in eye exams, vision changes, managing already diagnosed eye issues and they can refer you to an ophthalmologist.
Ophthalmologist, specialize in comprehensive eye health, they can see the 'larger picture' of overall health, in regards to cause and effect and treatment options of various issues.  After an issue has been diagnosed, and optometrist can be quite capable of monitoring a condition.

I like to think of it as the optometrist is the ophthalmologist right hand man in caring for patients.

Apparently, this is a hotly debated item in eye world, especially in the USA.

As far as the fancy equipment.... well, come to find out.  Sometimes the best equipment is the doctors knowledge.  Sometimes simply doing something like dilating the eye is much more accurate than snapping a picture of the back of the eye.  Although, I'd like to add the machine is more comfortable.    That being said.  Nothing can out shine the human brain.

We followed up with a second opinion to the local Pediatric Ophthalmologist specializing in Strabismsus in our own town to learn that his eyes were actually good! Very Good. He had better convergence than most his age. He just had a small stigmatism .  He did not need vision therapy and really could see good with out his glasses.  When all was said and done. This little boys eyes were not the cause of his class room issues.  It had to be some other cause.  Can you imagine if we had gone down the road of prisms, bifocals, and vision therapy?
Turns out his mom had a hunch his eyes were working fine together ( converging well) He is excellent at sports.  Never misses a ball.  So how could his depth perception be that far off?
In this case the Optometrist was way far off.  We're so glad we got a second opinion before proceeding to put this child through even greater frustration with learning.

 Please take the time to read the link noted here.
It makes a difference.  If you get well intended, but incorrect eye care, especially at 6 years old.  It will affect your whole life.

Do your home work... See the right Doctor at the right time! If you're 6, it could mean your future.

http://www.aapos.org/terms/conditions/132

Jan 31, 2015 update : My friends son turns 8 soon. Next week in fact.  Guess what? He just now found out his official diagnosis.  Dyslexia with ADHD.... It's a rough diagnosis by a thorough a team of pediatric teachers, neurologists and a  psychiatrist . Can you imagine if we had spent over a year on vision therapy and the wrong perscription? It took us this long to get a team of doctors and teachers together to come to a full picture and a written plan of how to really help this little guy for the rest of his life.  

Punctal Plugs

Yesterday, I went to see my local eye doctor to see what we could do about how dry my eyes have progressively become.
They didn't seem too dry of course on the day I actually go to the doctor. But yes, indeed, they were so dry ( especially my right eye which has had more trouble) my normally 20/15 vision they now rated 20/25 which still is good, but I was alarmed as I truly couldn't make out one letter with my right eye on the exam.
After examining my eyes thoroughly, my doctor recommended temporary punctal plugs to be inserted in my lower tear ducts. This is to keep the fluids on my eye from quickly draining off,  ( and yes, I can still cry- my coworkers were wondering this today)
They simply putting some lovely numbing drops in your eyes, (that felt a bit like isopropyl alcohol) so I wouldn't be uncomfortable at all.
I simply had to look up to the ceiling as she used what I imagined were very precise instruments to insert this tiny little plugs deep into my tear ducts.  I felt the pressure etc. of what she was doing.  It really was no big deal.  However, I've had many eye procedures this was again, not a big deal.

However, I am happy to report that already this morning I can tell a nice difference.  It didn't hurt to blink and my eye lids didn't stick to my eye ball.  Must say, it was much nicer to wake up like that!

You can't see the temporary plugs at all in my case. She chose the temporary punctal plug because it had a greater chance of staying in for the full 4-6 months.  I agreed to this as I did have a permanent plug put in some time ago that popped out after 3 weeks.  The doctor figured I itched it out of my eye during allergy season.  See, the permanent punctal plugs have the tiniest little white dot that sits just above the tear duct. I must have worked that plug right out of my eye with my allergy to ragweed that summer.

Anyway, I'm very excited to find a bit of relief from these dry, burning, blurry eyes.

Also, it was lots of fun to hear how excited this doctor was when reviewing my strab. measurements.  She just couldn't get over what a difference I am now compared to before surgery.  It really is a miracle!

Tables turn

Quite interesting to accompany a friend as she went and had surgery with the same doctor I had down at the Mayo Clinc in Rochester this past week.
Very nice, I must say to NOT be the patient!  My friend did great.  But the doctor did even better.  He hit a home run! Amazing!  He put an adjustable suture, on EACH eye. But when he went to adjust them about 5 or 6 hrs later, they were pretty much 'spot on' , no double!  So he just had to tie the sutures off and clip them.  Amazing!
Immediate success!  Very cool to see such results!
Also, Very interesting to see them do the adjustable sutures after having had them done to myself 4 different times.  I concluded after seeing it all, it's not so much the act of surgery that is amazing, it is all about getting the math correct and knowing where to land those crazy muscles on the eye ball in the first place.  As the surgeon said, " the adjustable suture gives you the ability to be as aggressive as you need to be" meaning  a surgeon can fine tune and get it exactly right all because when the patient is awake they, by way of feed back and tests the dr does while adjusting the sutures, can make sure the muscles are exactly where they need to be.
I crudely would compare it to adjusting your headlights in your car... You would put your new headlights in, then sit in the drivers seat and see if it's correct, get out adjust them if need be etc.
Very educational this week was.
I'm gaining even greater appreciation for this science.  So fun to watch someone do this, plus, all the while he was teaching others the whole time.  That was pretty neat too...  So interesting to come this full circle and now be able to see someone else go through it.  Another eye miracle -- Poof!
gw

Ophthalmology vs Vision Therapy

I am breaking my promise here not to write anymore. However this is for a good cause.  

There are so few blogs about adult Strabismus that I fear people are getting only one side of the story on surgery vs. vision therapy. I edited this post on May 1, 2011.  Sorry it is long, but my hope is that it's worth the time it takes you to read...

My purpose in writing this is to encourage people to be as in formed as possible when it comes to weighing the options of surgery vs. vision therapy.   If you choose to search the web lean towards the sites that are .org's or .govs.  These have more credulity. Reading personal experiences on blogs are nice but, including mine, they are PERSONAL experiences.  You will have your own.  Just make sure you are educated by people who really know the science behind this eye disorder.

I have only heard about VT this past year - after all my surgeries.(4 surgeries - 8 procedures and FIVE cortisone trochlear  injections) Frankly, I was afraid I took the easy way out in having some one else fix it and someone else pay for it. ( although my deductible is HUGE) It made me question whether I was just lazy and didn't want to do the hard work to "fix myself" with therapy.  Was it my fault? Was I just a weak person for choosing surgery? I just didn't want to work hard to fix my problem?  That's what led me to ask this orthoptist questions about VT.

One blog mentions the authors opinions that Ophthalmologists do surgery for cosmetic reasons.  That is one view point.  Just because it is on the internet does not now make it a fact. That would make an ophthalmologist a cosmetic surgeon.  Which they are not.  From my personal experience how I look is the least of my problems. Surgery for me was critical. I knew I was soon to loose all single vision.  I had an inferior oblique that was too long. (we only learned that IN surgery)   No amount of exercise could change that fact.  I had a head tilt all of my life.  With one 3 hour 'nap' (surgery) I wake up and my head tilt nearly gone.  My neck pain is gone.  That is NOT cosmetic.  I woke up with depth perception.  That is not a cosmetic result.  That's a functional result.  Least of all, I don't see double anymore.

Vision therapy (VT) verses Surgery is one hot topic apparently in the 'eye profession'.  Keep a clear head when talking to Dr.'s and therapists.  Does it feel like a sales pitch?  Does one profession completely put the others down?  Maybe you'll agree, when a person is truly in the right, there is no need for putting others down.  You should clearly understand YOUR eye problem first.  Questions to ask; "Do I have a muscle weakness, or do all my eye muscles work equally? I personally, had a 4th Cranial nerve that wasn't working correctly, so no amount of exercise could bring back the nerve to functioning correctly.  What is YOUR situation?  If you do not clearly understand what your problem is how can you understand how to treat it?  Really good Doctors let you ask any and all your dumb questions and they would never think you dumb for asking them.
According to one orthoptist there are two types of Strabismus.
1):  there is NO obvious muscle weakness; the eyes move normally in all directions, they just don't work together normally. Usually this type develops in early childhood and is NOT associated with double vision. Some unfortunate souls develop double and it can be tricky to treat.

2): There IS a muscle weakness (various causes, various types and combinations of muscle weakness) and the eyes do NOT move normally in all directions. When you have this type (as I did) the muscle imbalance needs to be addressed in order to get the eyes to work together normally again - this involves either i) repositioning the eye muscles themselves or, ii) moving the double image using prism glasses so that it can be "fused" by the brain with the 'real' image (not possible in ALL types of double).

Something I learned this past two weeks:

Where VT (vision therapy) comes in: VT mostly tries to re-train the brain in how it processes what is seen. Occasionally it will claim to strengthen the muscles themselves, but i think even the most outspoken VT proponents wouldn't claim to be able to re-charge a weak/underacting nerve!

Now, if you have normally moving eyes that are out of balance the whole idea of VT has slightly more credibility than if you have non-normally moving eyes. As far as I understand it, no amount of VT in the world will make a weak / paralyzed nerve / muscle suddenly start moving / acting normally again.

SO, in my case the eyes needed to be mechanically re-balanced so that the images from each eye would line up with each other and your brain could then stand a chance at fusing them into  one 3-d image. (Prisms can work to optically relocate the double image but this does NOT work if you see a twisted / tilted image (which I did have) ... surgery is the main treatment option in that case)

Questions to ask your doctor's and therapists;  Well, there are endless questions if you are me, just ask my poor eye doctors.  I never stop asking questions.  But if you are considering vision therapy or surgery, why not ask each professional, why do you feel your approach would be superior to this other approach?  For instance in talking to a surgeon: " why do you feel VT would not work in my case?"  In talking to a VTherapist maybe ask them; " Why do you feel surgery is not the answer?" Go home and think about it.  Does their explanation make sense to you?

It is a valid question why insurance would cover surgery and not vision therapy.  It should raise a red flag or at least a yellow one that says "Proceed with caution"  Do your own research and not on Wikipedia.  My last surgery was complicated and cost $21000. or so.  So I don't think they are taking the cheap way out.

Insurance companies must feel surgery is a more stable, predictable out come.  Also consider, will vision therapy UN- suppress some suppression you've been having? Great!  Maybe it can.  But what is the alternative?  Both eyes working but not necessarily together?  When that happens you have double vision.  I'll tell ya from experience.  Double vision isn't necessarily better than suppression.  Much more upsetting.  There are no guarantees that you will move past double vision into single vision, and how long might that take?  Make sure you are not trading one problem for another. Some times the solution can be worse than the problem. This is a huge concern that surgeons have with VT.

Depth perception is not someone with misaligned eyes enjoys.  Will you get that back?  I hope you do.  But I don't know if I would put all my chips on the table just for that.  Why do I say that?  Because I didn't have it for 36 yrs. and you know what?  I got along just fine.   I didn't feel like I was 'suffering'  because I wasn't.  Now I think I have it back but you know what after the first two months you forget you have it back.  (until you get in front of a 3-d movie -and it is really really fun-  but that's like 3 times a year- you can have a full life with out seeing all aspects of a movie)

Maybe this is cold and harsh reasoning.  But I am genuinely afraid of people not using BOTH eye doctors and therapists.  Why can't every one play together nicely?

My blog is simply to log my journey's ups and downs of this amazing experience. Writing is like therapy for me, so If you can learn something from my experience, great.  However, it is not my intent to teach something here.  I just want to encourage ones to do their own research from legitimate sources.  Stick to the .org's or .gov. websites you'll fare much better.  I wish for everyone to have the success I found.  I lost my hope for many years and now have it back. Best wishes to you!
Greta

3/31/13 found this. Might be worth a readhttp://quackwatch.org/01QuackeryRelatedTopics/eyequack.htmlhttp://quackwatch.org/01QuackeryRelatedTopics/eyequack.html

The Conclusion

I just drove the three hours home from my one year check up. I love being by myself and mulling over 'things'.  The summation: It's all good.
I will eventually go to visit the pain department and hopefully get some help with this chronic pain.
I should go back in 6 mo. to a year.  I'll probably go in a year as I really don't for"see" having any problems.  My eye function is remarkable if you ask me. I'm sure if you slapped my view of the world on someone else they'd be mortified.  But I am completely pleased.  The pain is also remarkable, but that's for another blog.

So to sum up this blog.
I need to end it.  It has served it's purpose of logging the journey I took this year.  I will love to reread the days when I was just discovering what a miracle single vision is. Single vision and NO TILT!  I was surprised at feelings that came up regarding the previous years since my last surgeries - so I had to work through all of that.
Dr. H  mentioned to his students how complex this case was or severe the head tilt.  That always baffles me, I don't feel complex or severe.  But I am coming to grips that my BODY is complex and "a typical" as the Dr. stated.
I guess I already knew that.

I will, no doubt, check the blog for messages or stats. But I'm really not going to blog anymore on this subject.  There is over 140 entries!  I feel a bit like "Forrest Gump" When he says, "And that's all I have to say about that"


I also got a hilarious facial after my appointment. But that's a different subject you can read about it at gweisman.blogspot.com.

5/17/11 - received a cortisone shot for 'trochleaitis'. Shot wasn't bad at all. The dr. bait and switched me but I don't care.  Lets just hope it works. Diagnosed by a neurologist today with Trochleitis triggering migraines. I made a youtube video about it as when I searched you tube there was not ONE person on the WORLD WIDE web who had spoken about this that was not a Dr.



August 1,2,2011. Went to pain clinic. I had a migraine almost every day in July but Tuesday August 2nd ended an 8 day migraine. And it only stopped due to imitrex. I also had to run to eye doctor while at Mayo because my rt eye has developed halo's.  Like 4 rings around all street lights, and head lights at night.  Dr. said it was just because my eye was very dry and I had an old scratch on it.  I'm a bit concerned as it's not getting better. but theres no alarm. nothing to do about it. Just the way this body goes.  Idiopathic, co morbidity. 

Oculocardiac reflex

I should not be blogging right now! I have 8 million things that need to be done TONIGHT.  But knowing me...
I checked the dumb blogs audience and search words that people use when they come across the blog.  Someone searched "bad pain after strabismus surgery"  it got me thinking...
I never searched the WWW to see if anyone else had trigeminal pain after this surgery. So I typed in "strabismus trigeminal nerve"  I again got pointed to this book co written by David Coates from TX. ( I recognize his name as I remember papers written by him and my dr. jointly- so I figure they're buddies - so his book caught my attention a few times this past year ) anyway, chpt. 6 is on Oculocardiac reflex.
I think I may be on to something here.  It would explain why my heart during surgery was bradycardia then shot up to tachycardia.  It also affects the trigeminal nerve which led to the vagus nerve which leads to the whole parasympathetic part of your whole heart beating thing.  I think the nerve got hurt during this. No fault of anyone. The article said things can be done perfectly but it (the reflex - not trigeminal nerve damage) still can happen.  It kinda makes sense.  I learned alot.  I'm kind of excited.  So far it's the most logical thing I heard or in my case, read, yet.  Cool huh?  Now I dont' have to worry about future surgeries and my heart going all brady again as it was an eye pressure thing.
http://books.google.com/books?id=4oqo-LMSV_kC&pg=PA81&lpg=PA81&dq=strabismus+trigeminal+nerve+pain&source=bl&ots=5AGbyceDpg&sig=ow8oGP8KJiRmcw0qBjb5Z1NL7dQ&hl=en&ei=tDffTNHHOIGnnwfcoLXdDw&sa=X&oi=book_result&ct=result&resnum=7&ved=0CEUQ6AEwBg#v=onepage&q=strabismus%20trigeminal%20nerve%20pain&f=false

8/25/11 - editing this post much later :  wanted to post that after this I later developed a rare heart arythmmia called idiopathic fascicular ventricular tachycardia.  I think I had been showing signs of it all along.  So the reflex scene in my strabismus surgery was no surprise looking back.  I now to this day have bouts of tachy vs. brady every day.  It's just the way I am.  Idiopathic, comorbity Me.

No pain just vein Early signs of Loeys Dietz iv

It's not a stick, it's my arm

I think I had NO pain at all in my eye today. First time in a month I think.  However, my vessels in my arm were so scary today.  I did call Dr. G again -this morning, no re call yet. Maybe tomorrow.  I even took a photo of it.  Looks like 3 peas in my arm vein.

Dr. G. called back late this afternoon (Thurs.)  All she knew was this is not classic connective tissue disorder. It would be something else.  She said I could talk to someone in vascular medicine. But I should not worry about it.  Easier said than done.

11.29.2020. Almost 10 years to the week. I got a diagnosis. Of what was going on here in this picture.  This moment, never left me. I never could forget this . It was so startling to see this happen in my arm. When earlier it also happened in my forhead. I remember telling my doctor,”  what if this bursts in my forehead? “ he said, “well. It would just be a bruise.” I said “but just on the other side of the bone it would be a stroke”

I finally had had it, after a series of frustrating events this spring and summer. I finally insisted , I have to have a genetics test. I wanted Mayo. But the short of the long , with one little blood draw... I have Loeys Dietz type four. You can not believe the relief . I’m not crazy ! My family... finally had an answer ! Why we have had so many severe near fatal bleeding issues. My aortic dissection! My grandmothers Neely bleeding to death , my aunts not clotting after open heart. Anyway the relief turned to reality  One  week later and I had my first full body arterial scan. They found a small inner carotid artery aneurysm. It’s small. I’m waiting for another doctor appt now. But I have my answer. This really was and is and always has been happening. My atrial septal defect ... the constant finger, toes and other vessel ruptures. Even the weakness making strabismus in my long list of problems. Loeys Dietz type four. Explains it all. My blood work answered the mystery. 

3/12/21... this we learned after three mris and Mras. Is manifestation of fibrous muscular dysplasia . They found it on the inside of me too. Over a decade to figure it out. But this moment in time..l never forgot. I knew you couldn’t make this stuff up. Now I have my answers 

A Great Dream

I awoke at 5:30 this morning with a huge smile.  HUGE.  For some reason, I was having this very intense dream that  Jim, Dr. H some other Dr. (who I've never seen in real life), a nine yr old boy (who I've never seen in real life) and my self went to see Dr. Egghead.
There he was sitting across from us and I was sitting all slid down in my chair wondering 'WHAT AM I DOING HERE?"  what do you want me to say?  I have nothing to say to him.
Egghead was being nice and sweet to the 9 yr old boy and then he made a sarcastic remark to Jim about his jeans. In my dream, Jim had these awful ripped up jeans on!  And I was so embarrassed by that.  But anyway...
So there we were, There was an uncomfortable pause,  Dr. H finally spoke up because I wasn't!  He was quite stern and started in on Egghead.  Then all of the sudden I grew a back bone and started in and Dr. H sat back and let me speak my mind. I was controlled, mind you.  Asking questions, rhetorical questions.  The part I remember clearly was when I emphatically stated, "I don't care how stinking good you think you are at your job, you can always learn more! Always!  You are never done learning!"  then I grabbed his pudgy little chin and kinda shook it and said, "I'm just so glad I had Holmes to clean up after your mess!!"  
And that's when I woke up.  Smiling.  This was a nice change from all the dreams I had waking up crying and mad.  Now I woke up smiling and happy.  It only took me a year. :)

A breather

As I drove to work I stopped at the bank and as I sat waiting for the teller to process my deposit I realized I feel GREAT!  NO pain. I had like a whole 24 hours with out distracting pain.  I had one little 30 sec. stab. but that doesn't' count cuz it was 30 seconds! I couldn't wait to get to work and start in on my little faces in wait.
I realize that I am quite invincible when I don't have pain.  I am excited and I have a lot to bring to the table.  That's why I can't live with this nerve pain anymore.  It's sucking the life out of my life.  I love it when I have these windows. It tells me why the pain is so frustrating, it's because life with no pain is so great! I just wish it would last.  This last two weeks was rough, pain wise.  I did have about 3 hours of eye pain today but it wasn't bad enough to even take ibuprofen plus I was busy and didn't have time to take something.   It's been gone now for several hours and I just feel great.  It was a nice relief today not to have it.  A breath of fresh air. I'm just going to enjoy it because you never know what the next minute will bring.

One week left of the blog

So we're about a week left of the blog.  I've grown accustomed to blogging  it'll be tough to break the habit.  I'll have to find a new pass time of where to store my little thoughts.  That being said.  I was in almost no pain today.

The trouble is, when I am in pain, it is very real and limiting at times. But when I'm not in that intense pain, it's not too bad. And I can live with it. I feel the eye muscle almost all the time. but it's just uncomfortable not painful.  Well, probably 20-30 min out of the hour I feel it.  Today was a great day,  Very little eye pain/discomfort although I did have one good jolt to the rt. sup. obliq. while I was talking to Jim, interrupted my thought and just had to wait the 30 sec. til it passes.  Then, it's past.
It was hard enough to build up the courage last week, when I felt the intense eye/face pain and my blood vessels were going crazy, to call the Dr.'s.  Dr. G called back but I just don't want to call and bug these dr.'s any more than I really have to. I wish they could see me when these things are actually happening.  When they're not happening, I don't know really what to say.

Group therapy ;)

So I am typing this at the hospital in Hastings. My grandfather, who has severe parkinsons fell yesterday out in his yard and broke his hip and I am sitting here in the dark with my little phone watching him try to sleep. Long story short, I got to talk with my aunts and uncles and compare notes. My uncle Jerry has had multiple eye muscle surgeries and gone through his own nightmare with nerve pain, following a serious accident 15 years ago. So I learned things from him. Then my aunt Nancy and I talked a little about knees dislocating. Of course my other aunt Gail was here and my grandma, and I can see my future in them. They have survived somehow, by the grace of God. It gives me hope. I'll be okay too. What's nice is they all can still laugh about it. Truthfully, it feels good to see people who look like me and know what it's like to be atypical. I don't feel like a freak when I am with them. I have more understanding.

Knee

My knee partially dislocated today.  This is the first time for me.  It was very scary. I was just getting into my car when the back of my knee gave out.  I had to sit for a minute to figure out what to do. Then opened the car door and set my leg out and moved it back into place.  This is a sad day in the view of someone with a connective tissue 'issue'.  I don't have the heart to tell Jim. I don't know what's happening lately. But something definitely is happening.

Vein Issues

I wish I was talking about my 'vain' job.  But I'm not.  My blood vessels are acting up again.  My left pinkie has been rupturing 3 times in the past 24 hrs. 2 times at work, the finger goes numb until the blood moves out of the finger. Then tonight during a mtg. my left arm started feeling funny around my wrist.  I looked down to just watch the veins start bulging.  It even wiggled a little as it grew. I nudged Jim and showed him. After 10 min. it went away.
Guess what? As I type this, my pinkie ruptured again.  I give up.  Freak of nature in full swing.
My eyes weren't too painful today. So that's good.

6:35p.m. - I called the genetics dept. at Mayo this morning as she once told me to call her if I have any other blood vessels rupture.  She called back but of course I missed it as I was at work. UGH.
Dr. H never called back, I don't know if his secretary forgot to give him the message or he's super busy or I finally drove him nuts and he can't bear to talk to me. :) I'm hoping for one of the first two options.  Just wanted to get into see someone about eye/face pain.