My story. Please read, help needed

Graphic pictures

Hi all. My name is Jennifer and I’m 17 years old.

March 2015, I had decided to get an MRI for chronic migraines I had been having. We found nothing related to migraines. We did, however, find a 3 cm AVM in my right cerebellum.

Being a 15 year old, high school freshman, I was scared to death. My parents and I met with a doctor and after looking into my options we decided to have surgery.

I had an angiogram and 2 embolizations to cut off the blood supply going to my AVM. On April 22, 2015, I underwent brain surgery.

During my surgery, my anesthesia tube wrapped around my tongue. In post-op, my tongue began to swell and take over my entire mouth. I wasn’t immediately intubated and put into a medically induced coma for 5 days. Not only that, I lost coordination and balance on my entire right side.

After being in the hospital for 10 days, I had to relearn how to walk, write, talk correctly, etc. More than 2 years later, I still cry often about my struggles with my recovery. I have gone to countless of doctors, occupational therapists, physical therapists, and speech therapists.

My surgery site has caused me pain since my surgery. I’ve tried acupuncture and many, many medicines. Two months ago, I had some metal plates removed hoping to relieve my pain and only causing it to get worse.

Most of my struggle isn’t the physical part of it all, but the emotional part. I had brain surgery in high school. None of the people around me understand. My doctor told me I’d be entirely recovered in 1 month. It’s been over two years. I have nightmares and try to bottle all of my feelings up because nobody understands but it just makes everything worse. My therapist helps but since she hasn’t had an AVM, it’s hard for her to relate and she knows that. I feel lucky that we caught it before it ruptured and to be living but I have such a hard time with every aspect of my surgery.

Any comments or advice?

Thank you
Jennifer

1 Like

First of all, you are not alone. And this community gets where you are coming from. Even though everyone’s experience as a survivor is unique, we have a lot in common. You are not alone. Welcome!

I had a moderate bleed in May 2009 for a big AVM (4 on Spetzler-Martin scale) that was too high risk for craniotomy so I had gamma knife surgery. Long story - short version is AVM is occluded, but I had a lot of damage from the radiation.

I have great support from my friends and cousins but I still sometimes don’t feel that they totally understand how much this brain damage/injury has changed me. Or how weird some of the changes feel, and how much I struggle with routine tasks that pre-bleed would have taken 5 min and that now take hours.

I’m fortunate to have found a few support groups, and have found some fellow brain injury survivors who have become good friends. I strongly encourage you to find a support group. It’s still surprising to me to talk to someone you’ve just met and realize that they really get it because they live there too. Have your friends and caregivers come too - sometimes hearing about others experiences helps them understand you better. And if you are not able to go to support groups in person, this community really helped me online.

Please PM me if you want to chat. Hang in there - you are not alone!

4 Likes

Jennifer,

Wow! You have been through a LOT and still fighting! I think it is difficult for a lot of people to understand “hidden” illnesses, so you’re certainly not on your own. I think it’s good that you’ve worked out that bottling up your feelings is not productive.

Being 17 is really young and I would say your schoolfriends are going to take a long time to be mature about things but people around you will understand, will be more mature, more considerate as you get older. I was bullied in school and it didn’t stop until I got to university. I found the people at university to be that bit more friendly and the stupid people had been weeded out!

I’m inclined to think that being 17 is a pretty difficult age for anyone, so to fight through it like you’re doing, you’re doing really well.

As well as your therapist, you’re welcome to post questions and concerns here. The “emotional support” category is fine to have a proper rant, as well, if it helps!

It’s great to have you here with us. We’ll try to support you as well as we can: it’s what this forum is for.

Very best wishes

Richard

2 Likes

Hello @JennGWelcome to the site and I am so sorry so much has happened to you. I am glad you are in therapy. I am also so glad they found your avm before a bleed. My angio/embolism caused lots of brain pain andI still have it 5 years later.
You are not alone in your daily pain. Many of us have it.
I too had migraines started around the time I was 22 and still get them at 48 every week.
`My story is I had a massive unrelated stroke in March of 2011 which I was in a coma for 5 days and had to relearn everything as you did. Then in October they found my avm which is a DAVF and had my first angio/embolism is Jan 2012-
I do get botox shots every 3 months which takes the edge of my pain but I still have it every waking moment.

People can not tell that I am in pain unless they see me rubbing my head which they ask does your head hurt…duh yes it never stops.

You are young and that is on your side - What has helped me is keeping busy but not so busy I wear myself out.

I do volunteer work and help others who have to go to the doctor and through all my terrible health experiences I can help others navigate the hospitals etc.

I know I personally have PTSD esp when it comes to hospitals and doctors. I am lucky that all my doctors - stroke, pain neuro, PT, and my neuro medical marijuana doctor are all awesome.

My family and friends are supportive but they really can not relate to the issues that I have.

I still have a huge amount of weakness on my left side and just figure I am going to have to do PT for the rest of my life.

Our brains need time to heal. You have had a lot going on in the 2 years.

Are you seeing any doctors for pain like a pain neuro?

It is very hard to talk to people who have not gone through what we have gone through and that is why this site is great.

what has helped me is mourning my old self, accepting my new self but working towards getting back to my old self as much as I can.

Believe in yourself and dont give up on yourself.

Hugs
Angela

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Angela,

Thank you so much for your response. Hearing your story and experiences help me relate and eases some stress. I have seen many doctors including pain doctors. I had nerve blocks and botox and unfortunately neither seemed to work. My surgery site has recently begun to hurt more and I’m try to do more with my parents and doctors to figure it out. It is hard handling this on top of school.

Talking about this is already helping me feel some relief. Thank you.

Jennifer

Thank you so much. Just hearing this reassurance helps so much. I may take you up on the offer to PM you soon!

Jennifer

Thank you. I feel like you, and the people have responded do, in fact, understand. This makes me feel better. I refrained from posting on this site for 2 years but I should’ve posted sooner!

Thanks again,
Jennifer

1 Like

Wow so sorry the nerve blocks and botox have not helped you. I wished you lived here in California to go to my Stanford Pain neuro who is awesome. When she cant see me and I have to see other doctors the botox shots dont seem to work as well.

One thing I forgot to mention when I had my stroke and was not really making progress my husband started to give me organic coconut oil in my tea or coffee- He started off with 1 tsp and worked up to 3 tsp. Now it could of been just the timing but I started to get better. He read that good fats help the brain heal. So now we only use coconut oil or olive oil or Kerry Gold butter which is made from cows who only eat grass from Ireland we get it at our Costco.

I am so glad you posted here and sorry you waited so long.

If medical marijuana legal in your state? I waited years before I tried it and my mm doctor is also a neuro who happened to specialize in the area of the brain that was damaged. When I asked her why she was doing this and not making the big bucks at a hospital she said because opiates dont work. And that is why people start taking more and more and get addicted.

She told me I would have to try different types and see what works for me. I first tried a pill that was not supposed to make you high but it gave me vertigo - so then I tried the gummies and liquids which either have CBD for pain or Indica for sleep and none make me feel high and both help with nausea. I also use the topical oils and salves on my head and neck which help. None of these cause any side effects for me.

I also take gabapentin which helps as well. Apparently your stomach can only absorb so much - I was up to 3600 mg a day but now I am down to 1200 - 1800 mg a day.

There is also another drug they prescribed me for pressure in the brain I have to get back to you on that one.

Have you thought about getting a 504 plan? This will protect you so you can miss days at school and they have to accommodate you. I have a few friends who daughters have health or mental issues and this has been so helpful for them- One friends daughter only has 2 classes at school and the rest she does online - She has huge anxiety.

I am not sure why doctors dont talk about this! Just google it apparently this site does not like people posting outside links which I personally think is bs. Its for any disability physical or mental. Let me know if you parents have questions etc and I pm you my phone number

Hugs
Angela

Jennifer,

I find so much power and healing in my faith in Jesus. I downloaded the Holy Bible app and was able to select the daily devotionals that speak to what I am going through (anxiety, fear, hope, courage, etc.) Give the app a shot. It’s a practical way to engage with words that will give you encouragement each day. I’m happy to talk with you too anytime you need someone to listen. I have a background in social work and I know the power of genuine empathy and having someone who just gets it and understands. Being a fellow AVM survivor and someone who struggles with all the feelings you are describing, I can try my best to understand your experience or just be there for you in whatever way possible.

2 Likes

Ok here is the drug that is supposed to help with head pressure pain
acetazolamide -
Angela

Hi Jennifer:

Welcome to the AVM-ers group. If you want support, encouragement, or a place to vent without judgement, you found the right group. We are here for you. You are so young to be in a predicament we wouldn’t wish on anyone. Your friends and classmates don’t understand the AVM world. I think you have to be in it to totally grasp it! I’ve been on my AVM journey for almost 3 years. My 4cm AVM (also right side cerebellum) ruptured in 2014, for which I had Gamma Knife Radiation. Like you I had to re-learn walking, coordination, balance, thinking, memory, etc. It wasn’t easy and it took a long time, but I’m back 95%. My Husband says I’m at about 75%, but what does he know (smile). He’s been by my side every step of the way so he knows a bit about my AVM journey. To get to where I am now, I prayed a lot, cried a lot, had a lot of therapy, slept a lot, and stumbled a lot, but I did not fall! With all the different therapies I’ve had, the absolute best therapy was “Prayer & Patience” (P&P). Trust me, it works. This group is here for you. We get it when others don’t. I wish you the best and remember P&P.

Sharon D…

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Not alone, as stated before by someone, at least it didn’t rupture. Should also be very happy that they were able to go get it out. Mine is to deep and hidden, the doctors aren’t willing to go after it. So mine can still rupture any moment. Had 6 so far at age of 33 started at about 27.