Quantcast

AVM Survivors Network

Newbie, confused, overwhelmed, lots of questions


#1

Jim here. I’ll start by saying that I’ve already learned more about my condition reading thru this forum than I have from the docs. Forgive my ignorance. 54yrs old. Married 32yrs. Small business owner just outside of Orlando, Fl. Until last month my health had never been an issue. I started experiencing dizzy spells. I attributed them to my vitamin regime & testosterone replacement therapy. 2 of these episodes had left side tingling & numbness but they subsided within minutes. I thought TIA but I didn’t mention it to my wife who is an RN. She finally witnessed a severe spell that had me staggering & unable to speak & we went to the hospital were I spent 5 days being worked-up. I was told that I have an AVM (not sure on the specifics) & that treatment was unlikely due to it’s location. The hospital neurologist was not exactly a wealth of information, lol. My MRI showed 6 infarcts (?) scattered around my brain. I was prescribed bp meds & Eliquis & sent home. I went nearly 3wks after leaving the hospital before having another episode. My life had essentially returned to normal & this setback was tremendously upsetting. I’ve followed up twice with my primary care physician who has referred me to a neurologist (Aug 17th). Dizzy spells, short term memory issues, & time awareness distortions seem to be the main manifestations I deal with throughout the day. Evenings seem to be my most “normal” time. I’m not sure if I’ve suffered a “bleed”? If so, should I really be on a blood thinner? So much to process here!


#2

…I’m used to tackling my problems quickly & head-on, waiting seems to be standard operating procedure in our medical system & I’m finding that to be extremely difficult to deal with. My pcp ask me if I’d take an anxiety med (no!). My family keeps telling me not to dwell on this, easier said than done. Walking around with a live grenade in your head is an unsettling experience to say the least!


#3

Jim,

Welcome to an interesting place! This is quite a different adventure than any of us planned. Discovery is a big shock and I hope that by taking about it you can get your thoughts around what it is, ask some of the right questions of the docs and generally calm down about it all. None of us are doctors so we should really look to each other for support rather than giving or construing medical advice.

I think an “infarct” or infarction will be a clot, so it is perhaps reasonable that you are on thinners to try to dissolve those as they may be giving you some of your symptoms. Longer term, you probably don’t want to be on thinners if you can, as an AVM is arterial flow of blood into a (weaker) vein, so a risk of stroke if the vein gives out. Good hydration would probably be a great idea if you’ve managed to get some clots.

If the docs are already indicating “we might not operate” it is likely your AVM is a bit deep or a bit complex. It’ll be a good thing to find out what it is about your AVM so you can be sure to hold the docs to account. Very occasionally you’ll get a doc who has one specialism who knows he wouldn’t dare treat you using his specialism but if he (or she) is a bit too specialised, may not refer you elsewhere for a different opinion. Thus, open surgery is undertaken by a neurosurgeon but other forms of treatment for AVMs are undertaken by an Interventional Radiologist.

Rather than download everything now, I’ll stop there and let you ask anything you need. We’re all here to support you.

Like you, I got to 50 without caring or worrying about health. Then I found mine. I have to agree with you, moving through healthcare takes far longer than anyone would like. My story (in two parts) here.

Very best wishes,

Richard


#4

Hey Jim,
Welcome to our network. Although none of us would wish to be here, here we are.
Learning more can be a double edged sword, it’s good to keep yourself informed but it can also be scary as all hell. I have to agree with DickD, in that too much information can cause a bit of an overload.
I think it’s pretty normal to attribute symptoms to anything else, but once having a diagnosis it’s a case of “Well what do we do about it?..” I also have to say that some dr’s like to treat patients like mushrooms ie keep us in the dark and feed us up on bulls#%@ Some have the theory that the less info we have, the less stressed we will be, but from my experience, this couldn’t be further from the truth. The "wait and see’ mentality is the worst. Every twinge, every ache and we question ourselves so believe me when I say, that’s normal. “Don’t dwell on it” If you do learn how to do this, then please tell me how.
Just know that we are here and although I am not a dr and I do not ‘know it all’, my neurological experiences have been many (unfortunately) from a carer, to a family member and a patient, so if I can be of any assistance then please ask. We are all a very supportive lot and although my experiences may not have been exactly the same I dare say many of the members here have had very similar experiences.

Merl from the Moderator Support Team


#5

Thanks guys. I’m trying to come to terms with the fear & uncertainty that accompanies (and to some extent consumes me now) my dizzy spells. “Is this just an aftershock or is it The Big One that will take me out?”


#6

I’m not going to tell you it’s easy… …cos it ain’t. Anyone who tells you it is easy has NEVER been here. What I am going to say is that it does get easier over time.
Initially, sure, every ache, every pain and you’re asking yourself those questions, BUT you will get to know those pains, which pain is just ‘Ohh you again…’ and how to manage it. And which pains are “I’d better go get that checked out”. That fear is normal (Well, it sure as hell was for me) but if we let it rule our lives, it will and we can end up paralysed by the fear of “What if…?” I did have that “What if…?” if fear, but I learnt my signs and my triggers.
Believe me it does get easier, with time.

Merl


#7

Jim,

There’s no need to think this is “the big one”. We’re talking about neurology here… depending on what part – quite specific part – of your brain your AVM is either over pressuring or starving of a bit of oxygen or whatever will be the reason why you get the dizziness.

As a complete amateur neurologist (and usually wrong) I’d guess that your AVM is affecting your cerebellum and that’s why you’re getting the dizziness. People with an AVM either in their dura mater (and I suspect near the ear) and in the cerebellum seem to complain of dizziness. Its just to do with where it is affecting.

I agree with Merl, learning about this stuff can help calm down or it can do the opposite.

I think I’m a bit like you. I’m an analyst and want to understand. I did get several times to where people encouraged me but also to where some stories frighten the pants off you. Choose carefully the level you want to go in.

I found it important to keep busy with a hobby rather than dwell on “possibilities” too much. After all, its pretty risky crossing the road or driving the car and we deal with those, albeit more familiar, risks pretty well.

Wishing you the best.

Richard


#8

Thanks Richard. The dizziness is strange in it’s totally random & and I haven’t thus far determined any triggers. It does make one thankful for the periods of “normalcy.”


#9

Hello @JiminFlorida Welcome to the group and I feel free to have your freak out. I felt like you like I have a bomb in my head. I too came here and got more info than my drs gave me.
Personally if I were you I would contact Barrow in Arizona and get their opinion - Dr Lawton who was at UCSF is now the head - They will review your scans for a small fee and they have done surgery on people where other places have told it was not operable. These are rare and you want an experienced neuro that this is all they do like Dr Lawton. I have seen his work and he is excellent. -
Hugs Angela


#10

Thank you Angela for making me aware of this service! Got it all filled out and will send my MRI file.


#11

No problem @JiminFlorida Don’t give up hope. Dr Lawton is the best. They may be able to use gamma knife or get to it.
When I first discovered mine I had to make a decision between Dr Lawton and Stanford. I live closer to Stanford and was already seeing the head of the stroke dept.
My friend was also running the MRI Dept
Really for AVM they are so rare you want a dr that only does them. When my dr. dr Marks was discussing treatment he said it was experience that tells him what to use. So I always tell people you don’t want a young dr working on you.
When I had my second Angio with him I told him I was afraid he was retiring cause my gf was retiring and they started at the same time …he just laughed.
Let us know what happens -
Hugs
Angela


#12

Hello@JiminFlorida, Welcome to the Group! I can totally relate to how you feel! I’m 42 yr old, and have a 5cm AVM on my right pareital lobe up to my motor/ sensory cortex, and that is so deep down into mt brain, that it is inoperable. I to one day thaught I was having a stroke! Started to feel nauseous and hot, then started feeling dizzy, and my left side of my face was feeling tingly and numb.Then that feeling proceeds to my left toes, up my left leg, up my left arm, back to my tongue. Can’t talk, as the words are just coming out all mumbled. I proceeded to try and walk, and really couldn’t, due to the numbness… Went to ER, come to find out, it’s a seizure!!! Now those are the big ones. I do have just smaller ones which include, spouts of dizziness with a weird feeling in my head and a headache. One’s where I lose time and what I was doing for a few seconds, aka Absence seizures. Simple partial seizures, tasting blood, dejavu, or seeing images. I also have the ones when someone is talking or explaining something to me, and I can’t understand what the are saying, or comprehend until it passes. Also with my AVM, it causes me to either studder or forget words mid sentence and to have debilitating migraines, which leave lesions on my brain. And terrible short term memory loss. Which happens due to seizures!! As I said I’m stuck like this for the rest of my life. So please look into seizures, this may be happening to you as well. Even though we don’t have Epilepsy, AVM does cause seizure disorders! And some doctors can’t or won’t put one and one together! It’s best to educate yourself, because doctors won’t based on individual cases. They pretty much go by a generalized assumption. I also live in Florida, been to 4 Doctors, none will even go near me! Hope this helps! Good luck to you! I forgot to mention, I am now taking 200mg/day of Topiramate which help with the big seizures and prevent migraines…


#13

Thank you Xtina! The seizure thing did cross my mind (sorry for the bad pun). What you described is very similar to what I’ve experienced. I’ve been using CDB oil and it does seem to have helped. Iwent 2weeks with no issues, in fact I felt normal again. Then I had testosterone replacement therapy pellets reimplanted & experienced a bad episode 3 days later. I’m wondering if it’s related? Neurologist appt Friday.


#14

CBD oil helped because it’s actually for helping with seizures. And I bet the testosterone therapy flared up the seizures! Not to release tmi, but I still have a couple of those big seizures right before a hormonal change during the month for me. So I do have to up my meds (per dr’s orders) a week before that takes place. So I would assume that definitely has something to do with it!


#15

Obviously in xtinas case, this is a seizure but there is a bit of an overlap between seizure symptoms and migraine aura symptoms (which can be quite diverse) so migraine aura can include tingling (“paraesthesia”) and typically transgresses the body. I can’t remember whether one-sided only is “normal” or abnormal for migraine, I think abnormal, but at the end of the day both xtina and Jim’s effects are “abnormal” as they are incited by the AVM.

So… It might be seizure stuff Jim or it might be migraine but it’s a fine line where the underlying cause is an AVM. What you need to get fixed is the AVM. Migraine is benign. Seizures and AVMs are not benign.

Does that make any sense / help? I feel I’m rambling a bit but I’m trying to help!

Richard


#16

Jim, an AVM needs to be handled by an INTERVENTIONAL NEURORADIOLIGIST and a Neurosurgeon. This is Way above the knowledge level of a neurologist. In fact, any competent neurologist would immediately admit that it’s above their capabilities and refer you for intervention immediately. Highly suggest doing some research online and get the best possible interventional neuro radiologist in a major city like Miami to evaluate you thoroughly. It could be a lifesaver. Good luck!


#17

Neurosurgeon appt this morning!


#18

Hi Jim, & welcome here!
In @ 1980 I found I had a huge AVM in my brain and I was 18 years old in college. I had my first gran mal seizure. I had a fantastic life, but in my 20’s, my seizure got worse & worse every year. In 1989, I met 5 neurosurgeons who were experts back then of AVMs. Dr. Robert Spetzler/Phon8x, Arizon was who I chose. He told of risks, like strokes, but I was still ready to go forward w/fixing my AVM. Altogether, I suffered 2 strokes during 7 brain surgeries! How scary it was starting to recover, but I was a FIGHTER, and never gave up!! I basically had to start over at everything, so I then decided to call this me 2ND LIFE!!! I am so Blessed & HAPPY, now!!!. God be w/you & your future!


#19

Oh, & look at your support here. Back in the '80s, I did not know how to connect w/ANY AVM survivors, and I felt so alone. I love this AVM site, & glad you found it.


#20

J, back in the days,(1980’s) when I had to find out how to tackle my large AVM that gave me gram mal seizures, I went to 5 neurosurgeons, who were referred by my neurologist, for their opinions about my AVM. Since year by years, in my 20’s, those gran mal seizures got more and more frequents. At 29, in 1990, I was READY to do what I needed to do…try to FIX IT, the best that I can. After my ‘medical mayhem’, I like to call it, I lost my career, my serious boyfriend, a brand new car, lots of friends and a few close families members! SO, I realized, I will have to START OVER at everything, and begin my NEW 2ND LIFE!!! I took a few years to say this, but I am now, ever so grateful for this FAB 2nd life! TRY TO ALWAYS search & focus on the POSITIVES in your life!!!