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

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.