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AVM Survivors Network

What should I do?

I am a 32yo female. I had an mri done 2 weeks ago with my family doctor. She is the one that told me I have avm at the cerebellar. So on July 30th I have an appt with a neurosurgeon but its a video call. How will they know how bad it is if its a video call? My head has been swollen in the back on the right and left for about 3 years and the past month or so it has swelled up a little more. I also have an appt with a dermatologist to find out if I have psoriatic arthritis. I get migraines everyday. The pain on my shoulders and back is almost unbrearable. I get fevers about 4 times a week. I have rashes on my knees, elbows, and back. Idk what to do. I’m so scared. The migraines have slowly gotten worse. I wake up in pain, I fall asleep in pain. Most days its hard to get out of bed. And I feel so bad because my boyfriend takes care of the kids basically on his own. What do I do? I also suffer from depression and high anxiety. Maybe this is all in my head but I’m just scared.

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Hello @faithc They should of done a special type of mri called an MRA with spin labeling to see your avm. If not they may want to order one.
Some people are born with AVMs and some like me are developed later .you can also have more than one in some cases.
Even if you had the MRA type of mri they will.
They will Probably want to do angiogram to your brain which is the gold standard to really get a good look At what’s going on
They then decide on treatment , embolism, or craniotomy or gamma knife or nothing.
You should ask to be referred to pain neurologist as well.
This is all very scary. We are here for you and it’s completely normal to freak out.
Hugs Angela

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I found out Monday that i have Brain Avm by the cerebellar. So idk what is goin on with me. The back of my head has swollen more in the last few days and I keep hearing like crackling sounds like in the middle of my head and keep getting dizzy. I’m afraid to go to the ER. Because about 3 weeks ago I went with body aches and pain and they didnt check my blood, they said all my blood tests in the past were normal. They didnt do an mri because I was waiting results. And all they did was inject me with stuff I cant pronounce and that didn’t help. Then I found out they injected me with an antipsychotic med and a muscle relaxer. Which is stupid because I wasn’t panicking. I was in real pain. What should i do?

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@faithc Hello and Welcome to the group and so sorry you have an AVM. The best place in Wisconsin to be seen is University of Wisconsin-
Sadly instead of giving people pain meds sometimes drs are giving people anti depressants now.
With the opiate crisis in this has been the thing that drs are doing.
I am seen at Stanford and for some reason drs go back and for between University of Wisconsin and Stanford.
I was referred to the Stanford pain clinic Pretty quickly after my massive stroke CVST thankfully. Then about 6 months later they found my avm that was caused by my stroke.
If you have swelling I would definitely go to ER esp if you’re in more pain- I am sure your avm neuro explained that you could have a bleed .
Basically I go in to see my drs which are all heads of their depts. if I have any changes

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I was diagnosed by my family doctor on Monday. I have an appt on the 30th for a video call thingy. Yesterday I bent over to pick up my son and heard the crackling like inside my head not in my ears. The AVM is cerebellar. And today I was laying down and heard the same thing only after ithappened I got a big headache. Then I realized the swelling on the back of my head has gotten worse. Idk what to do because I went to the hospital 3 weeks ago because I woke up with lots of pain and they wouldn’t check me. All they told me was that my blood tests were normal in the past and they fkn injected me with an antipsychotic and something for the pain. I wasn’t panicking. I was in real pain. What should should i do?

Faith,

Hi! It’s good to hear from you and great that you found AVM survivors!

Do you understand what an AVM is yet? Because I wouldn’t expect a blood test to tell you anything. You’ll need to see a neurosurgeon or an interventional radiologist and you’ll need an MRI, although if you already know your AVM is in your cerebellum, you’ve probably had an MRI. Next step after an MRI is usually a catheter angiogram, which is the injection of “contrast material” and a bunch of x-rays to see more exactly the shape of the AVM and what it is connected to. To do the angiogram, you’ll need to be under the care of a neuro or an interventional radiologist.

I had a decent amount of pulsing blood vessels on the outside of my head, though my AVM was in the dura mater meningeal layer inside my skull, so I may have had something similar to your external swelling.

Here to help,

Richard

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Faith,

I’ve moved your various posts together into this conversation, because otherwise it’s difficult to give you answers that don’t start to repeat.

I’m sure the neuro will be able to meet you on 30th and understand your problems. So long as you tell him or her about the swelling on the back of your head, I don’t think they will need to feel the swelling to believe you.

Hopefully, they will order an angiogram pretty quickly and get you in to do that.

Angela says great things about the people at Stanford, so hopefully you’ll get excellent treatment if the neuros move regularly between there and your hospital.

I found sleeping with my head propped up on several pillows was necessary to help my vessels that were enlarged on the outside of my head to feel less sore.

Very best wishes,

Richard

Welcome to our group Faith. AVMs are scary and even more so when we are trying to figure out what they are, why they are and what can we do. A lot of unknowns add up quickly. I would anticipate the 30th to give you some answers but I think the angiogram will be the direction. I had multiple CT scans, MRIs and three angios. In my case the angio was the diagnostic test that guided the treatment. The last angio was just about three years after my diagnosis. Once the initial barrage were completed the scans were spread out as follow ups and were a yearly MRI and then the final angio. Take Care, John.

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All they have done so far is just an mri without the dye. I have a video call with a neurosurgeon on the 30th. Because of the virus, they don’t really do any in visit thingy. They do most on video calls. I’m literally scared. I try not to sleep on the avm but its hard because it’s on the back of my head. I asked myself yesterday what I did in my past life to have all this pain. Thanks for the advise on the pillows. Lol. Thanks for all the advice. I really appreciate it. I just feel so depressed and anxious. Did anyone ever hear like crackling sounds not in your ears but more like the middle of your head?

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Like the other guys in the conversation you were in before, I’m sure I had some crackling going on. I think more in my ears than mid-head but it was a few years ago now, so I don’t remember.

Anything you can do to keep the pressure down a bit is good. I cut out coffee and chocolate and was advised against smoking or drinking or anything of a strain. I started to feel poorly in autumn 2016 and had to wait round to April 2017 for my operation. I don’t think I was as poorly as you, so I made it that distance ok. While the docs currently prefer to do video consultations, I’m sure if you tell them exactly how you are, they should deal with you promptly.

If at any point in the next 2 weeks you feel significantly unwell, just go straight to the ER. I know you had a bad experience there recently but with new information from your MRI they should take you more seriously if you’re unwell. Don’t give up.

Sending you very best wishes,

Richard

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faithc, I had 2 surgeries 32 years ago. I’m sure the treatments of AVMs have come a long way since then. I read your statement about no MRI contrast. I would make sure that happens. The only advice I can give is to make sure before you do anything or let any surgeon do anything is talk to 2 maybe 3. I made the mistake of trusting my PCP and letting the first surgeon I spoke with take care of my issues. Looking back I had all the opportunities to speak with many. Take those if you will. Best wishes and God bless as we all have struggled through AVMs but, God has blessed gifted hands with those certain people to help us.

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Hi there. Sorry to hear about your AVM. I also have a cerebellar AVM. Although I can’t be sure maybe your neurosurgeon will base their advice on the recent MRI your doctor did. But they are also likely to want to talk to you about how you’re feeling, how the AVM affects you and how you would potentially like to be treated, if thats an option. It sounds to me like you are going through it and I really hope something can be done to help you. I think its probable that your depression and anxiety are linked to your condition. Best of luck.

Hi Faith. I’m really sorry to hear how you’ve been suffering. That’s horrible. I agree with the advice already given to try as much as possible to take it easy and avoid stress. My daughter had an AVM in her cerebellum but we had no idea that it was there until it ruptured. Her situation was not good after that. Massive stroke and 8 months in the hospital. There is no “good” place to have an AVM but the cerebellum is particularly risky because if it bleeds there’s not a lot of space for the blood to go so it often causes compression on the brain stem (regulates breathing, heart beat, swallowing—all the basic functions of life). So things can get pretty serious.
Anyway, I hope you have a friend or family member who can be with you for your video appt. Prepare a list of questions and have your friend write down the doctor’s answers. It sounds like you need this AVM attended to as quickly as possible because I’m sure it’s responsible for a lot of the pain you’re experiencing. My daughter’s was removed surgically. This is the optimal treatment because it takes care of it immediately and completely. But sometimes surgery isn’t recommended due to the location so then a form of radiation is recommended. It can be very successful too but takes time to have an effect.
Please keep us posted and I’ll be thinking of you on the 30th.
Allison

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Thanks for all the advise. I messaged the neurosurgeon about 3 days ago and they moved my appt to tomorrow morning. I appreciate all the advise. I love this forum. It has helped me with mental things. Thanks so much and if its ok. Ill tell yall what the doctor says tomorrow.

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Hey, it’s good to help and many of us have been exactly where you are, so we know how it is. It’s a positive thing that the appointment has come forward. Well done!

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Lol. Thanks for the well done. But it was all the people on here that helped me. Well done everyone. :hugs::smiling_face_with_three_hearts:

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Hi there Faithc!

I’m another person who had a large cerebellar AVM many years ago. I did not have any of the symptoms you describe. Mine just decided to rupture and I had the sense to call 911. And, I actually survived the 8+ hours of surgery!

I am so glad you found this site. It is scary to be experiencing all of those symptoms, be understandably anxious about it, and not know what to do. I’m so glad the folks here have given you the confidence to advocate for yourself. You MUST! The advice to bring a trusted friend or family member with you to appointments is a good one. Write your concerns and questions down and don’t be afraid to refer to them. (It is so easy to forget them when under stress.) Hopefully, the neurosurgeon will recognize that pain increases anxiety and, in turn, the anxiety increases the pain and then will prescribe the appropriate medication you need. I hope this surgeon is a ‘good fit’. Let us know how it went, o.k.? :smiling_face_with_three_hearts:

Good luck snd praying for you🙏

So I saw the neurosurgeon. She wants more bloodwork. Another MRI and referred me to a rheumatologist. Whew! So idk what happens after that. Does anyone know?

She didnt ask about rh AVM