New and confused

Hi everyone. Thank you for letting me join this group. Research after my diagnosis has not proven easy. Ugh.
Here’s my story. For as long as I can remember I have suffered from severe headaches, chronic fatigue, dizziness, anxiety and other symptoms. For years I have been passed over as being crazy or lazy. A few years ago I was in a car accident. I had an MRI. I was referred to a neurologist who told me I had lesions on my brain that should be watched. End of story. My symptoms have progressed since then. Fast forward to now. I had a 5 day migraine. Went to the ER. They did a CT and suggested that I see a neurologist. The neurologist informed me that I have AVMs on my brain and kinda explains what they are. Tells me to get an MRI with contrast. I get the MRI and wind up with a blood clot in my arm. I was admitted to the hospital on blood thinners. Discharged on blood thinners. I’m sure you all see the problem with that! So I went back to the neurologist for a follow up and he tells me I have two AVMs on my left temporal lobe. Two on my left frontal lobe. And a very large one in the center of my brain. He said the one in the center of my brain had recently bled and caused a stroke. What!!! He also says that Some of my symptoms are definitely seizures. So then I go back to the hematologist. He says he thinks my body started clotting to compensate for my brain bleeding. So he ran a battery of tests. I do not yet have those results. He wants to get me off the blood thinners ASAP for obvious reasons. I’ve also had an EEG that I’m waiting on results for.
So this has been a lot to take in. I’m scared. I feel alone. But, mostly scared.

8 Likes

Wow! Definitely can be frightening getting passed around w different diagnosis’s. Most importantly, Mel, IMO would be to get to a University Teaching hospital near you in FL that has a TEAM of neurosurgeons. While your neurologist can identify what he believes is an avm or avf, his main job is controlling your symptoms with medication. A qualified neurosurgeon from a teaching University hospital can better diagnose and explain what is going on. I know Shands in Gainesville is good and Dr. Robert Starke @ University of Miami is excellent. You are still in the information gathering stages. Best to get the proper diagnosis from a TEAM of neurosurgeons. Remember, you have had these lesions in your brain your entire life. You are now presenting symptoms that require attention. All the best, welcome to the club. GK

6 Likes

Agreed, you need to see a neurosurgeon rather than a neurologist.

@Melly I don’t know if this is any consolation at all, but each of us who’ve discovered our AVM before it has done a bunch of damage has been just as frightened as you are; others of us found it after we came round following a life-saving operation.

Getting off the blood thinners sounds like a plan. Getting the haematologist to get you right also sounds v sensible but it’s the neurosurgeon you need to help determine what to do (if anything) about the AVMs.

Welcome! It’s great you found us.

Richard

4 Likes

Thank you guys. I definitely feel like I need better medical attention. I live in a small town. When I was in the hospital it was extra scary. The ER doctor told me several times that they couldn’t treat me there they did not have a stroke team and called an Ambulance to have me transferred to another hospital. I am near Jacksonville. Has anyone heard of anyplace good to go in Jacksonville or Gainesville even?

Shands at UF in Gainesville isn’t far from Jacksonville. I actually made the drive years ago! The reason I suggest a teaching institution is bc they will have more expierience w AVMs and more neurosurgeon eyes on you. (Professors, Residents, Fellows, etc.) Your neurologist should be able to arrange a referral to Shands if requested. GK

4 Likes

Another consideration is Emory University Hospital in Atlanta. Probably a little further than Gainesville but excellent neurosurgery TEAM. GK

3 Likes

These are both great suggestions. I will look into them. Thank you so much. I’m so glad to have found this group!

3 Likes

I have heard good things about the Mayo clinic in Jax

1 Like

So I had an appointment with my neurologist today. He has referred me to University of Florida for a second opinion. He also increased the Trokenda from 50mg to 100 mg to try to ward off the headaches.

5 Likes

You’ve come to the right place! I didn’t find it right away but there are so many people here with stories like mine. Headache, dizziness, fatigue, nausea. I was taking alleve for the headache. Hospitalization. CT w/contrast. Neurologist. Small bleed in my brain stem.
That was 6 years ago. When I was 37.

2 Likes

I went to Emory for a second opinion. First opinion was inoperable. I’d recommend Emory. Daniel L Barrow, MD

4 Likes

Please know that you are not alone! I know this must be frightening and it is. My brother had a stroke last year caused by an AVM in his brain. The last 6 months until now have been difficult to navigate (on top of a pre existing pandemic!) He has been rehabilitating himself and was able to return to work, but just last week had a seizure at his job and had to be rushed back into the hospital. That was 2-3 weeks ago and is now back working but unable to drive for 3 months. I feel for all of the people who are struggling with these medical conditions, including you. This is scary for the loving family members as well, but we are all here to lend support and care for each other. Please continue to take care of your body and just as important- your mental health! Life isnt always easy but I hope we can help support you and make things and life a little easier to cope with. Sending blessings and positivity towards you and your family

4 Likes

I can’t wait for this pandemic to be over

1 Like

Melly,

I’m not sure exactly where it is, but Mayo Clinic has a hospital in Florida - I would go there in a heart beat. I’ve been at Mayo’s Rochester Minnesota location for three major “events” in the last 40 year and they have been great.

Hope that helps, as always, if we can help, any of us, don’t hesitate to ask…

TJ

2 Likes

I’m pretty sure it’s in Jacksonville.

1 Like

This week has been tough. I’ve been down with a sort of migraine. Mostly dizzyness, nausea and extreme fatigue. I haven’t been to work all week. I keep getting a thumping in my ears and what feels like muscle spasms in my temple. Last night in bed it literally felt like the room was spinning. I’m afraid I will loose my job. And I am the sole provider so that can not happen. The only comfort I have is I work in medical so if I do lose my job I should not have a problem getting another one. I am looking at back up plans in case I need to go out of work like eBay and stuff. It’s all just so overwhelming. I know a lot of you guys have been dealing with this for years and years. Do any of you go to therapy? I’ve considered getting a therapist for the depression and anxiety.

2 Likes

Mel (is it okay to call you that - my spell check keeps changing your name to Kelly),

See a therapist! Yes, please, do so. If you know anyone who has dealt with mental health issues, ask them if they would recommend anyone. Call your primary care doc and ask for recommendations. Ask your friends to ask their doctors for recommendations. I would recommend, like I did myself, ask for names of therapists/counselors who are experienced in PTSD, depression and anxiety, especially ones caused by significant and rare illnesses.

I am not exaggerating when I say that my therapist (some of my friends on here have heard me refer to him as “my Randy") has saved my life. I do not doubt that I would have at least gotten a lot more serious about attempting suicide if it weren’t for him.

I never did and I thank the Good Lord for people like him and people like all of you, on a daily basis.

TJ

4 Likes

Firstly welcome to the family and sorry to hear the flooding of so much overwhelming news regarding your AVM… it’s crazy to think a neurologist originally stated there was lesions on the brain and did nothing more about it by looking into the matter… it seems there may be some conflicting factors here that have allowed this to go on without being treated… it is important now to find yourself medical experts your comfortable with and roll with the punches to get onto this so you can move on & live your life… you definitely need a good neurosurgeon to discuss your options moving forward.

Just know it’s normal to feel scared & alone in these circumstances as we have all got a story to tell… it’s important you keep positive & have faith as you will overcome this hurdle… please keep us updated on your journey as so many members here can provide you great support & comfort… great to hear you are off the blood thinners cause that’s definitely a no no with AVM’s… Sending prayers your way… God bless!

1 Like

M,
YES, that seems to be a lot to take so TONS of PRAYERS go out to you! A long story short, in 1990, I elected to have brain surgeries at 29 yrs old. I suffered 2 strokes during 7 brain surgeries! What a scary journey that was, but thru it all, I stayed STRONG & FOUGHT as hard as I could!! After all that junk, this is my FAB 2nd Life. Good luck with your future & lots of prayers here for YOU!!
L

Welcome to the site; you’re allowed to be scared it’s a lot to absorb but I’m glad it was discovered before you had a rupture a lot of good information and people on this site!