I've been making my own path

Welcome & Help New Member Introductions
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New to this Forum, in hopes to get some insight. I usually find that patients know more than the doctors. I’ve been on this weird journey of knowing something is very wrong with me but not knowing what. I’ve been going to doctors all over New Mexico and Mexico. I’ve been treated for MS, migraines, Typhoid fever, ear infection,and parasites. I’ve always been super healthy, runner, farmer, mom, librarian. In April I started feeling fatigue and nauseated. then I started having “episodes” and my left side has been numb/weak/painful since then. My doctor told me that I wasn’t allowed to drive so I started hitch hiking to work, which didn’t end up working out that well. I’ve been unemployed since June, struggling emotionally/ financially with not working. I want to go to work so bad, but right when I start feeling good it hits me again. In october I had an EEG that revealed seizures (Partial) though I think I have absence seizures too. The epilepsy meds I tried were truly horrible and scary and I was having up to three seizures a day!Against my Albuquerque Nuero’s advice I’ve been on the Ketogenic Diet and take a CBD/THC tincture, with that I’ve been managing my seizure. I can still be triggered by light patterns BUT it only causes a tremor on my left side.I’ve currently gone three weeks without a seizure (which feels amazing!!) My last MRI revealed a malformed artery on my right frontal lobe, a Nuero at UNM confirmed that he thought it was AVM from a photo I emailed him.

So here’s what I’m wondering. My left side really bothers me. Its like I have two different bodies sewn together right down the middle. Some days its not so bad but other days I feel like my whole left side is a ghost. My left side can feel really sore and tense. And when its bad I’m in a brain fog, I feel confused, I forget words, I’m dizzy, I’m nauseated and its scary. I’ll have a couple days of feeling awesome, and I can ride my bike 15miles then other days I can barely walk because I’m dragging my left side and I can’t remember my cats name! Does anyone else go through this? Is this something I’m just going to have to learn to get use to? will I ever be able to go back to work? Advice please :slight_smile:

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Wow! I feel exactly like you!! I´ll make 1 year of GammaKnife tomorrow and exactly those symptoms (plus intense pain and burning that dissapearead around August this year) I always tought it was because gammaknife but you didn´t had it right? I haven´t returned to work and I drive an automatic car adapted to the left leg…I have the same questions than you…will this pass? I started taking keppra 2 days ago and don´t see any difference or am I quite secure this is epilepsy, but at this moment I´m down to whatever!

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Thank you for your reply. I’m not alone!!!
It kind of feels like a mind game, right?! I’m pretty new with the diagnosis and I haven’t had GammaKnife, but I do get burning in my toes just not very often. Did the GammaKnife help? Can you tell me a little bit about your story?

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Hi! Well I was totally normal and fine with no symptoms till the day 22-03-2016 when I was at the gym and felt something burst in my head and started loosing sensation from my head to my toes, the only option to not have a bleed again was gammaknife that I did one year ago…gammaknife didn´t made anything better, the purpose is “only” to obliterate the avm…I feel exactly what you feel and I hope everyday that I become better, at this moment I don´t know if what I feel is damage of the bleed or damage from radiation, as my neuro says I had two major agressions to my brain (bleed and radiation)
I don´t know how we with such a different background have the same symptoms but aren´t you going to treat your avm ? Or will be monitorise? I wish I had an answer to you when this hell is stoping… :confused:

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I haven’t had a bleed and honestly it sounds pretty scary. what part of your brain is affected? Mine is the right frontal lobe. Do you have seizures? I’m still waiting for my referral to go through with a neurosurgeon. One of my neuros said that it was inoperable because of the location, but I’d like to see the specialist, explore my options. I know the wait time is usually three months for an appointment, I’ve already gone 8 months trying to figure out whats wrong, so I guess its time to apply for disability? I just don’t feel like I’m ready to give up that I can get my life back. Do you work? So the Gammaknife helps prevent further bleeding but it doesn’t effect symptoms? I’m so new to this, I appreciate all the info.

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Chingona

Welcome to the forum! It’s great to have you with us!

I don’t have anything like the symptoms you have but I do know that I’ve read a couple of books on Neurology and migraine and it is not impossible to have the “two bodies” sensation. I guess it is a kind of “agnosis” so your AVM may well be affecting that specific part of the brain that recognises your left and right as “one”.

I would expect that you’ll need more detailed scans to look at the AVM, then some treatment options might be identified. Sometimes, it is difficult or downright dangerous to treat an AVM and you might need to put up with it but many people are able to have treatment.

There is no need to give up. Get the further scans and see what your options are. Don’t ignore it. It is potentially dangerous. So do find out what your specific options and risks are.

Welcome! And very best wishes,

Richard

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@chingona Welcome to the group. I am so sorry that you have had so much wrong with you.
Make sure you the neuro is an expert not just a neuro surgeon. Ask how many people he has seen with the exact type of AVM you have,
Barrow Institute does do second opinions and they are in Arizona - you dont have to go there to get the second opinion but if you cant find a true expert or they tell you they can operate, gamma knife or do an embolism then contact Barrow.
Many people on here have been told that and then when they went to a true expert they get treatment.
My neuro is Dr Michael Marks at Stanford
Maybe add some coconut oil to your diet to help also with the seizures - My cat Koko The Miracle Cat gets seizures due to being born with half a brain and we give him extra fat (coconut oil) and protein throughout the day, plus he has been on meds for almost 10 years - Since I quit my job 4 years ago and have been able to give him extra meals he has not had one seizure
I love CBD helps so much with pain and my nausea
I was on a seizure med after my stroke called topamax but it just made me sleep I was having the absence seizures before my stroke - I too suffer from Migraines since I was in my early 20s and they only got worse after my avm.
I get 30 botox shots in my skull every 3 months which really takes the migraine edge off and the stroke and avm pain
You are not alone but you need a treatment plan,
Regarding disability make sure you talk to your doctors to make sure they agree before you file.
Many doctors dont understand that many of us constantly feel like poo,constant pain and no sleep is not great for keeping a job. My company filed for me so they hired a lawyer and got approved cause it was cheaper than paying me my 60% of my salary.
I still have left side weakness and have fallen so many times I have torn my hip and really dont want surgery.
There are books at the library to help you file and understand the process dont give up!
In order to get SSDI you have had to work 40 quarters which is ten years to qualify. If you dont then you can still apply for SSI

Gamma Knife is used to shrink the avm and will often be used when it cant be operated on.

Embolism is go through you main artery via your groin thread up to your avm and either use medical glue, crushed onyx or titanium coils to create a damn to prevent it from growing and hopefully sealing it off.

craniotomy is when they cut through your skull to remove it

Sometimes they just monitor it to see if its growing

Keep us updated here - Also feel free to freak the f*ck out - We all have done it and we all feel so lucky this site is here and that is why we are all here to help one another.

Hugs
Angela

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Thank you Richard. I’m so new to this and I appreciate the encouragement. What is a neuro who specializes in this called?

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Hi Angela! I appreciate your response and my favorite part is right at the end. Ha! Yes I definitely have moments of freaking out and Im feeling grateful to find this group of supportive folks that can understand. You know it can feel hard with family and friends because a.its hard for them to understand weird symptoms b.you don’t want to freak them out and c.It gets old and nobody wants to complain, I just want more information. I have two young kids ages 6 and 9 and they are really having a hard time with all of this. I had to completely uproot them from our home (which was recently vandalized and we lost all of our possessions), farm animals, school, community to move in with my boyfriend who is super supportive and amazing, but its a lot for little kids. My daughter gets anxiety about me having seizures in public (which aren’t much of an issue any more) but like last night at their school christmas program there are all these flashing lights and she’s worried about me. She also is convinced I’m going to drop dead and gets really clingy with me. It’s tough. Even though my boyfriends financially supports us, he can only do so much, I’m not ready to give up going back to work, but in the mean time I’ve been making it stretch with $300 a month in child support. I know my kids will get christmas presents from family and my bf but from me they are getting an IOU for the bicycles they asked for. That definitely feels shitty. I just get frustrated feeling like I’ve been waiting for the next chapter, I know things will get better and I also have so much to be grateful for. Okay theres my rant and I’m going to leave it at that for now. Ha! And yes I almost live off of coconut oil because 80% of my diet is fat. I love the stuff!
Jessica

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Hello @chingona
Yes even though our family and friends are supportive they dont have any idea and even us in this group we all are different some have no side effects and others do.
I also have other health issues and which all are not visible and people say well you look good. My response is You are too kind.

My mom is now having daily head pain hopefully not an avm but she just told me yesterday she does not know I have been living with it for almost 7 years…

Even my husband was shocked recently when my dad asked if my head hurt cause I was rubbing it and I said yes it never goes away. Just because we dont want to complain or bitch about it - sometimes I think we need to cause people have no other way of knowing we are in pain or what side effects we are having.

So glad you have a good partner. I get it about not wanting to give up on work but the great thing about SSDI is once you are approved you can go on and off it without any doctors notes for the 1st five years. You can also work 9 months on it to see if you can work and keep both SSDI and your salary. After that you would have to pay back SSDI -So talk to your doctors to make sure they are on board then file, cause it takes forever anyway and its a good back up.

I cant stand flashing lights either and when I had my major stroke which later caused my avm my husband said I watched cartoons then old black and white movies. I still do like the old movies and if a show or movie has too much going on I just cant watch it.

Not sure if you have any allergies but when they use Iodine when they do an angiogram which I am highly allergic to as well as shellfish so they have to give me meds a few days ahead of my angiograms. There is also a bit of radiation so your hair will fall out but you wont go bald or anything. Any stress makes your hair fall out anyway.

glad you are on coconut oil!
Have you read the book Coconut Cures?

my neighbor down the street had an avm bleed over a year ago and she also told me the neighbor in the next street had one too what are the odds 3 people within a block have avms! I dont even drink the water so not sure but going to mention this to my stroke doctor next week

Here are some free toy services in your area
http://www.needhelppayingbills.com/html/albuquerque_free_christmas_and_.html

I am on our local aging commission which I learned each county across the USA has many free resources
here is your areas - contact them to see if can get some like food, etc
http://www.nmaging.state.nm.us/adrc.aspx

sometimes you can get help with cleaning your house as well.

Kids are so resilient and trust me they will be better adults because of what you are going through and be more compassionate to others.

Even people without health issues can drop dead anytime my thoughts are If I cant control it why worrying about it.

Hugs!
Angela

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You’r absolutely right there are no guarantees for anyone, we have appreciate everyday. I’m going to check out those links right now…

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To work through treatment, you need a neurosurgeon and/or an interventional radiologist. As some of the others may have said, you want someone who is proficient with dealing with AVMs. As AVMs are relatively rare, you don’t want someone to be practicing on you!

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May God Be With You, chingona.

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