Symptoms Come Back

Even before I met with my doctor, I had noticed some symptoms that I was worried might be indicative of a problem. I had been having trouble with stumbling and I had really been trying to get back in shape and doing power walking during the spring. So the stumbling worried me. After I saw my NS in June, I started feeling weird around July 4 when we went walking downtown with friends. I was finding it really uncomfortable to be around the crowds. I just wanted to go home. Also didn’t like all the noise from the crowds (there was a July 4 festival with music, lots of people, food, etc.)

By August, I was definitely having headaches and dizziness again. I called my doctor’s office. Wasn’t sure which doctor to ask for since I’d had one before but had been passed on to the head doc. Called his assistant who was extremely rude to me and said she would have him look at the MRI but she couldn’t talk to me because she was dealing with someone else.

I later heard from my other doctor’s Physician Assistant…

August 8:  Kristen, Dr. K’s PA

”Dr. B  sees nothing that needs surgical treatment. Adhesions (scar tissue). They are higher up and wouldn’t be causing Chiari symptoms. Occasionally adhesions are compressing. Mine aren’t compressing- they are just there.  B  is expert guy re: Chiari so will be seeing him in future, not K.    No need to do Cine MRI followup in 6 months.”

She told me to go see a Neurologist.

So I’m thinking-  WHAT? But I called my Neurologist. Who I hadn’t seen in a year. Amazingly I managed to get in to see her August 14th- so there must have been a cancellation.

FOUND THIS INFORMATION ON THE INTERNET:  Individuals require periodic follow up after surgical treatment for a Chiari malformation. Symptoms may recur after a successful surgery, usually within the first two years. Most likely, this is due to the development of scar tissue or an opening around the duraplasty covering the brain.

August 14:  Met with Neurologist along with my hubby, who keeps notes on things and keep me from having a total meltdown. Dr. C looked at my photo that I had on my phone (below) of the MRI and said “That is a CYST!” 

She referred me to a MRI and CINE MRI. I was very shaky at the appointment and my hands were shaking. Could have been low blood sugar though. But was dizzy and unbalanced.

August 15th I had one MRI. Results of that came back and didn’t see anything significant. BUT THEY WERE COMPARED TO AN MRI I HAD A YEAR AGO and NOT the one I HAD on JUNE 2 as they were done at different hospitals. This is really a problem as the docs can’t seem to get all the pertinent information together so everything can be accurately compared!!

I was due to have a Cisternogram on Friday the 18th, but the hospital called and cancelled it and said that it was the wrong test. I needed a CINE MRI. At least they managed to let me know it was the wrong one before I went there like last year where I was all prepped for the test and they said it was the wrong test. I DON’t need a Nuclear Cisternogram test where they inject dye in your spinal cord to check for leaks. I need a CINE MRI to check CSF flow in the brain. I said this to the person from the hospital and to  my Doc’s Asst. HOW COME I KNOW MORE ABOUT THIS FREAKING TEST THAN THEY DO??

Anyway, managed to get the CINE MRI on August 28th. ……

It said…..

“There is a normal CSF slow signal anterior to spinal cord at the level foramen magnum. Posteriorly, however, there is near absence of signal posterior to the cord and within the patulous CSF space interior to the cerebellum. There is markedly diminished signal in the fourth ventricle or cerebral aqueduct.

In the lower level within the upper cervical spine at the level of C1-2, there is a normal signal anterior to the spinal cord, as well as mildly reduced signal posterior and lateral to the cord (see axial view).

IMPRESSION:
1. Stable postsurgical changes of prior Chiari decompression with a suspected loculated CSF space inferior to the cerebellum with synechiae. While there is no clear anatomical obstruction at the C1 laminectomy site, this excluded posterior fluid collection likelyresults in reduced CSF flow velocity and causing apparent absent CSF flow signal posterior to the cord at the foramen magnum.
2. No evidence of CSF obstruction anterior to the cord at the foramen magnum.

I called my Dr’s office once the results were in and asked what they recommended. Always antsy waiting for results. Dr. was referring me to see a NS at a different hospital and not at Goodman Campbell.

 

So I called up Goodman Campbell and asked to speak to the office manager and told her how Dr. B. had BLOWN ME OFF and how I got the CINE MRI  which said I have posterior CSF flow blockage!!

I then got a call from DR. K. a day or so later and he started off saying the same old line they gave me before…. I said well I had the CINE MRI that YOU DIDN’T want to ORDER UP and it says BLOCKAGE OF CSF FLOW!!! So he said he see if I could have a consult with another NS there.  …..

Follow-up with Doctor

I had my follow up appointment with my Neurosurgeon on June 21. This was to go over the MRI results. The doctor looked at my questions about the MRI and didn’t seem to think there were any problems. However, he pointed out that on the film there was an indication of a Cyst under the cerebellum. 

 

He didn’t think that the “cyst” was actionable unless I started having symptoms. So he recommended that I return in 6 months for another MRI and a CINE MRI.

MRI June 2

Had my MRI. All looked good to me on the report except for a few terms that worried me…adhesions and tethered appearance. Also the encephalomalacia.

“Findings:
There are postsurgical changes from suboccipital craniectomy and C1 laminectomy. There is no residual anatomic stenosis of the foramen magnum. There is small amount of T2 hyperintensity in the inferior cerebellar hemispheres and cerebellar tonsils consistent with encephalomalacia. There is suggestion of adhesions in the posterior fossa resulting in deformity of inferior cerebellar hemispheres with tethered appearance to the dura seen on sagittal FLAIR images 75, 82,

and 94.

No abnormal areas of reduced diffusion or susceptibility are seen in the brain parenchyma. No intracranial mass or mass effect. There are 2 small foci of T2 FLAIR hyperintensity seen in the subcortical white matter of the left frontal lobe which are stable from prior study and most consistent with nonspecific gliosis which is within normal limits for age. Normal appearance of the ventricles and sulci. No extra-axial fluid collections. Flow-voids are present in the major intracranial arteries and veins indicating patency.

Paranasal sinuses and mastoid air cells are well aerated. There is thinning of the bilateral intraocular lenses.

IMPRESSION:
1. Evidence of prior suboccipital craniectomy and C1 laminectomy for decompression of the foramen magnum. No anatomic stenosis is identified at the foramen magnum.

2. Small areas of encephalomalacia in the cerebellar hemispheres. Suspected posterior fossa adhesions along the inferior aspects of cerebellar hemispheres.

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!!!

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..

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.

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!!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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)

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.

 

My Surgery

Managed to get a copy of a video taken by a resident of my surgery. It’s really short and doesn’t show a lot. But, definitely cool to see my brain! Brain Video.