Decompression Anniversary

My surgery anniversary is coming up on June 2. So here I am a year later.

Symptoms pre-surgery:

Disorientation… I’d go to the store and it was extremely hard to walk around and to focus on what I wanted to buy. The walls and ceiling seemed to move. I was dizzy. I would hang onto my cart so I didn’t fall over.  I felt like I was in a LSD fugue state.

Blurred vision… So maybe that was all due to cataract surgery ruining my eyes. I couldn’t see my husband’s face 3 feet in front of me clearly. I couldn’t read street signs.

Headache… Low constant head and neck pain.

Dizziness.. Always. Dizzy. All the time.

Mental stupor…Always in a “Brain Fog.” Described as a Zombie Stupor, I read later. My head felt like it was wrapped in gauze.

Hearing…  Couldn’t hear out of right ear.

Listening… My daughter scolded me constantly that I never listen.

Memory… I can’t remember what I was going to do 2 seconds after I got up to go do it.

Exhausted… ALL THE TIME>  Always tired!!

Insomnia… Can’t sleep. Wake up at 2 am.

Trouble speaking and finding the word I want to say

Gait- trouble walking in a straight line. Feel imbalanced all the time.

Hoarseness. I sound like I have a cold all the time.

 

NOW:

Disorientation… Almost all gone. Occasionally get a little woozy.

Blurred vision… Gone

Headache… Gone

Dizziness.. Gone

Mental stupor…Sharp as a tack!

Hearing…  Still slight hearing issue in right ear.

Listening… Much better

Memory… Still some memory trouble. But normal for 58 year old.

Exhausted… Sleep 7 hours straight and much better!!

Insomnia… Much better

Trouble speaking and finding the word I want to say: Much better

Gait- Power walking using Map My Walk!!  Walked yesterday 1.44 miles at 19:46 average pace. Would’ve been faster if I hadn’t had to stop for dog to poop or for people to pet dog.

Hoarseness- Gone.

Other: Lost 30 pounds. Was very sick in October- November and kept puking up everything. Also sick in March when on trip to New Orleans (may have been the food there!!). Gained some back after going to a dietician and eating more iron laden products. BUT more energy now and walking more!!!

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Dressed for the Heart Ball Charity Event.

SHARE PLEASE!!

PLEASE SHARE ON YOUR FB PAGE!! This is VERY IMPORTANT!!! My Chiari Pal, Madara, is trying to find a way to go back to college to become a Neurosurgeon specializing in CHIARI!!!! As you all know, there are NOT very many doctors who have any experience with Chiari Malformation!!! As a result, it is harder and harder to get diagnosed. Many of us have been through the ringer in dealing with doctors who pass our symptoms off as “migraines!” So the fact that a person who has actually been through the issues we face as Chiari patients wants to become a Neurosurgeon in order to Help Us is great!! I’m just asking you to share this on your profile page so she can get more exposure in her quest!!! THANKS!!! ROCK ON WARRIORS!!

 

 

HAPPY NEW YEAR

So a new year..81094c0669d7d95b7fe281d471c6af65

Last time I posted I was pretty mad and disgusted with my doctor and all doctors. Since then, I managed to see a 4th Neurosurgeon and he didn’t really have a good reason for my symptoms recurring. After several months, I think I have a better idea:

A.  I had low iron levels. I had a test done May 2015 and it reported low iron- not that my neurologist bothered to notice it until 6 months later when I mentioned it to her. She prescribed 325 mg of iron.

So I have been taking it with my breakfast since Nov. 2015. Found out in December that you aren’t supposed to take Iron with MILK!!!

SO- RESEARCH EVERYTHING!!! Don’t trust ANY DOCTOR to tell you everything you need to know. They do not care!!

LOW IRON could lead to dizziness, balance etc.

B. Found out I was taking my Acid Reflux meds incorrectly too when I got an endoscopy in Nov.

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C. Started PT to help with balance and dizziness. They give you lots of exercises to work on at home and initially I was pretty imbalanced. But in a few weeks, I’ve managed to improve (and didn’t do the exercises). Mind over body!!

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AGAIN?

I have completely lost my mind and went on a FULL RANT directed at my Neurosurgeons on their FB page and Patient Portal. Also left a message for my GP. I AM NOT SATISFIED WITH THEIR FREAKING LEVEL OF CUSTOMER SERVICE!!!!

“I started having symptoms again. Dizziness, disorientation, Balance and soreness around scar. I called Goodman Campbell office. My doctor, Thomas Leipzig, is on medical leave. So I asked the nurse about these symptoms and do I need another MRI to make sure things are fine and this is just a fluke anomaly.

I was told to go back to see my neurologist.

A. I JUST HAD SURGERY JUNE 2!!! I JUST HAD MY FOLLOW-UP VISIT AUGUST 10!!! WHY DO I HAVE TO GO BACK TO MY NEUROLOGIST??????

1) I just saw the substitute doctor at Goodman Campbell on August 10 for my post-surgery follow-up visit and everything was going OK then. So why can’t I go see them again now (It’s 2 1/2 weeks later).
a) Maybe I have a CSF leak?
b) Maybe I’m having an allergic response to the dura patch.
c) Maybe I have a buildup of scar tissue.

So basically, I can’t even TALK to a Doctor without going through another doctor and waiting for 2-4 months!!!Maybe I have some other Chiari thing? Going to see THE NEUROLOGIST means I have to wait extensively to even get anyone to answer the phone there. And then it’s usually 2-3 months to get in to see the Dr. And I’ve already had all of the tests that she recommended.

2) I don’t want to have to be shuffled around until all my symptoms come back full blown!!! I don’t want to have to lose my car driving privileges again and have to go to appointments in an UBER!! This is really unacceptable!!”

I talked to an office manager person and told her all my worries and she just called back and said they are going to order up an MRI to check everything and then if all is good, will have nothing else they need to do. Hopefully it’s all good. It’s very frustrating because doctors don’t listen or believe me. They go by their set script of what symptoms are associated with Chiari and if a patient doesn’t have that symptom, they assume they don’t have an issue. But in the case of the last MRI- which is a Cinne MRI where they video CSF flow, there was obviously a blockage. If they only do a regular MRI, it may not show anything.

July

Returned from wedding in Colorado where I did mostly resting. No hikes! No rafting! No tennis! But got to go to wedding and danced a bit- was 3rd in competition of who has been married longest- we are 32 years.

Back home immediately went to work on a portrait commission that’s due 17th. Which gives me something to focus on besides brain. Went for a bike ride 7/6 with pup in front. No crashes!! Biking is better than walking as you get a breeze!! 7/10 went to help hubby with tennis machine which requires me to pick up balls he hits with ball basket and dump in machine. Back started hurting and feeling tired so maybe too much too soon.

Tired of this Recovery!

June 22:

So my diagnosis is correct: I have a lovely UTI. Have to start some antibiotic. And try not to get a yeast infection.

I did make it to the doctor’s office without problem: YEAH VISION IS BACK!! Also went to Marsh: YEAH- Can walk through the aisles without feeling drunk!! Have to hang onto the cart, but that’s ok.

Not sure if the dizziness is gone since I’m still recuperating from surgery. But I haven’t had any codeine since … a couple days ago!!!  YEAH!!

The Heinz Super bowl commercial is a hoot!!  (https://www.youtube.com/watch?v=aNN9nL2vppM)Heinz

Just a little levity..

June 21:

Recovering from major surgery is exhausting.

Every evening my husband comes home and asks me how I’m doing with his sad face on. His expectations are so high. So I try to do more.

But I’m really tired of this!!

  • My head still hurts. The scalp hurts! What is with that? It is very tender.
  • It takes me forever to empty the dishwasher.
  • Have to take several breaks going upstairs.

My daughter went back to her summer internship in Cincy  and while I was outside waving, I took my dog over to my mini garden. And my daughter closed the garage door (reflex). SO I’m outside in the 90 degree heat with no phone, no keys, no remote. ACKKKKKKKKKK

Ran (didn’t run- just imagined that) over to neighbors’ to see if I could use their phone. They didn’t answer.

Stood in the middle of the street and flagged down a neighbor and begged to use his phone. He probably thought I was crazy!

The first neighbor came out to see what I wanted and I gave back the phone to the guy in the car. I managed to get ahold of my daughter before she was too far away. Which is good because I hate to be stuck outside in the heat with my black haired dog while recovering from brain surgery!!

The last time I got locked out, I had gone out on the balcony and the stupid door latched itself. Had to call hubby to come get me as it was October and chilly outside.

In the evening, hubby said he was running out of clothes. Didn’t I just do clothes recently? So I had to go up and do some laundry. Maybe he needs some new clothes to fill the void while the rest are in the laundry. Calling Amazon prime…..

Next I have to go to my GP to get UTI meds. Always nice to have major surgery and get stuck with an infection due to the tubes going in and out of me.