My AVM Diagnosis History and Symptoms

I am a 40 year old man who was diagnosed with a Right Parietal Lobe Arteriovenous Malformation measuring 1.8 x 1.9 x 2.7 cm on December 20th, 2014.

(Hence the User ID AVM122014).

Below is the history of how my symptoms first appeared and the steps I took to get to my diagnosis.

As things stand right now my Neurosurgeon is recommending surgical resection via craniotomy. I have some major concerns about this which I will post under another thread, I just wanted to get my symptoms and history out there for others to learn from.

My AVM Diagnosis / Event History

1.Symptoms first appeared Wednesday, November 12th
a.Head pressure, right eye not open as much as left eye
b.Seemed to get worse on Thursday November 13th and Friday November 14th

2.Initial consultation with my Primary Care GP Doctor on Saturday, November 15th
a.Initial diagnosis was possibly a mild case of Bell’s Palsy
b.Blood work was performed at, results showed elevated levels of inflamation

3.Symptoms increased week of November 16th
a.Wednesday 11/19 while traveling for business I contacted my Primary Care GP Doctor’s office and he called in a prescription for Cipro re: possible sinus infection
b.Friday 11/20 follow up visit with Primary Care GP Doctor
i.Referral to Ophthalmologist
1.Initial impression – possible internal Shingles outbreak on optic nerve.
2.Given samples and prescription for Lotemax
ii.Prescription written CT scan of sinuses
c.Symptoms increased – right pupil was not dilated as much as left

4.CT Scan of Sinuses performed on 11/24

5.Symptoms increased the balance of that week, particularly on Thanksgiving 11/27 severe pressure in right temple, could feel vein in right temple pulsing by touch

6.Friday November 28th – follow up visit with Ophthalmologist for a visual acuity test – passed

7.Monday December 1st – visit with my Dentist to see if possible oral infection could be cause of discomfort, believed there was small chance that it could have something to do with upper right wisdom tooth
a.Prescribed Penicillin

8.Week of December 7th
a.Follow up appointment with my Primary Care GP Doctor mid-week as I was still having discomfort and eye issues
i.Prescription written for Brain MRI, additional Blood Work, and Neurological Consultation

9.Week of December 14th
a.Blood work performed on Thursday December 18th – testing for specific viral infections (Shingles)
b.Brain MRI performed on Friday December 19th
c.Results were picked up on Saturday December 20th showing AVM with prior hemorrhage
d.Brought results to my Primary Care GP Doctor, script written for Neurosurgical Consultation with a local Neurological Surgery Medical team.
i.Made the decision to not deal with regional based hospital, so I went to what I found to be the #9 ranked hospital in the country for Neurosurgery.

10.Week of December 21st
a.Monday December 22nd, worked on getting appointment with Neurosurgeon
b.Tuesday December 23rd, appointment made with Neurosurgeon for Monday December 29th
c.Friday December 26th - MRA performed in preparation for appointment with Neurosurgeon

11.Week of December 28th
a.Monday December 29th, Initial Consultation with Neurosurgeon
b.Wednesday December 31st, Cerebral Angiogram procedure performed, findings support what was detected on MRI and MRA : Right parietal lobe Arteriovenous Malformation measuring 1.8 x 1.9 x 2.7 cm

12.Week of January 12th
a.Monday January 12th, Follow up Consultation with Neurosurgeon, recommendation is surgical resection via craniotomy.

Medical Issues:
- Non Specific Pain behind and around right eye, right temple is very sore as is right eye. Severe scalp sensitivity on right side of head – brushing my hair is painful / discomfort
- Blurred / week vision in right eye, Eye twitching weeks ago during event
- Right eye not open all the way still
- Intermittent head aches and pressure - Taking Advil, Xanax also seems to provide some level of relief with head pressure / discomfort
- Pressure still behind right eye

12/20, ask your AVM doctor about the Advil. It is generally contraindicated for active avms, because of the blood thinner effect. It takes time to process and determine your best treatment plan. There are many success stories here from our members who have had craniotomies. We are here to support you. All the best!

Hi,
What I find most interesting about your case (if you don’t mind me saying) is that all your symptoms appear to be on the same side as where your AVM is located. This is what I’m experiencing and yet my surgeon says that this shouldn’t be the case. They say I should be affected on my left hand side.
Has this been mentioned to you?
Does anyone else suffer on the same side?
Best wishes,
Jane.

I completely agree with you, and yes I have been told the same thing - that my symptoms and sensitivity should be on my left side vs right side where my AVM is located.

Based on some reading I did today, I know believe I had a small stroke which affected the right side of my face.

A stroke would explain the droopy eyelid and numbness/ tingling sensation in my scalp.

Hey,
So has anyone in your team now agreed that you can actually have symptoms on the same side?
I am being referred for an EEG and back to another neurologist as my surgeon doesn’t believe they can be connected. I find this frustrating as it makes me wonder what else is wrong with me?!

No, my doctors are telling me the same as you, that symptoms should be on opposite side.

They want me to consult a neurologist as well for the same reasons you mention.

Based on an article I read I believe that it was a small stroke from my bleed, bit have not had a doctor confirm this yet.

Hi Jane - my name is Jim by the way.

I wanted to touch base with you on our previous discussions. I met with a different neurosurgeon yesterday at a different hospital in my area, and he has an explanation about my symptoms.

He says I have Horner's Syndrome - you can look it up on MayoClinic.com - and this is actually a more urgent issue for me than my AVM.

Are you experiencing symptoms similar to mine? Like a Droopy eyelid or Scalp sensitivity on the same side as your AVM? If so you might want to look this up as possible cause.

In a nutshell, there are a few causes for Horner's syndrome, but it primarily is caused by a tear in the carotid aretery, or what is known as a bi-section. Basically a tear in one of the 3 layers of the artery lining...

I need to have a chest x-ray and another MRA, but it would be for the blood vessels in my neck this time... If they confirm a bi-section then I will need to go on blood thinners (aspirin) for 3 to 6 months and it will clear itself up.

This needs to be addressed before treating my AVM because the risk of blood clots in the carotid artery that could travel to the brain and cause a stroke.

Just wanted to share that with you, lucky me that that found my AVM before diagnosing me with Horners...

Jim