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AVM Survivors Network

Newbie :) AVM in Pons


#1

Hello everyone. I’m from the Philippines. I don’t know where to start. I’m new to all of this. It has been almost 2 years since i have been diagnosed with AVM but I’ve never seen a neurosurgeon nor have i researched about it until recently. I was 17 and was a freshman in college when we found out about it. I had a seizure when i was 14 but we just brushed it off thinking it was because of exhaustion (i was an active girl scout in high school). And I’ve been having headaches which we also thought was nothing. It was only when I fainted that my parents decided to have me checked. I have a brain avm. It’s on my right pons. My neurologist advised us not to take any treatment because of its location and to change my lifestyle. I had to quit school and to rethink my future plans. We went to a different hospital to have a second opinion but the doctor’s advise was still the same i decided not to dwell on it and just move on. I also opted not to go to a surgeon thinking it was just a waste of time and money. But now that i have built the courage to research and know more about avm, i found out how stupid my decision was and that i was not alone. I feel sorry for the people who have ot worse than i do. Now, I’m on my third year in college. The headaches are always there but i guess I’m so used to it that it only bothers me when it hurts 6/10. My only concern now is it kind of affects my motor ability. I’m more clumsy than before. I drop things that aren’t easily dropped and i also hear ringing in my ears often. I’m not sure if i should just ignore it and just live my life as i have been. I also don’t want to worry my parents anymore. I would appreciate any kind words from you guys. Thank you :slight_smile:

Ayes, 19


#2

do not ignore it.
you have a chance to do something about it before it ruptures!
welcome to the site; good people and good information on here…you are not alone in this!


#3

Ayes,

Welcome to the site! Come in, look around and do exactly as you’ve done and ask people about their experience.

As Mike says, an AVM is serious, so deal with it seriously. It’s is not for ignoring if it could have something done about it. It sounds like you’ve had some opinions already and they’ve advised not to touch it. I have to say that I haven’t read many cases of AVM in the pons, so I don’t know how treatable it is. I can honestly say I don’t know where the pons is but it sounds deeper in the brain, less accessible than some parts, so it may not be treatable… the doctors you’ve already seen may be giving you the full picture.

If that’s the case, it may well be best to put it as far out of your thoughts as possible but do change your life to reduce your blood pressure. I was advised to avoid coffee, chocolate, alcohol, smoking and other stimulants that put your blood pressure up. It definitely helped me for a while and felt like it took the pressure off.

You are not alone. There are a number of members here who have been told that their AVM is inoperable. It’s a tough position to be in, especially at a young age, but there is life to be had.

There are different ways in which AVMs can be treated… by open surgery, by glue or other blocking material injection “embolisation” or by radiation. If you’ve only had advice on surgery, it may be worth you consulting an interventional radiologist to see if they would give you different advice from the surgeon.

We are are all here for you, with similar symptoms in many cases, or different symptoms, depending on where our AVM is.

Feel free to ask what you like.

Very best wishes,

Richard


#4

Thank you! I’m really glad to have stumbled on this site. I’m planning on seeing a surgeon maybe on Christmas break since I’m still studying. I’m praying for the best.


#5

Thank you so much. I’ve been told my case was one of the rarest of the rare (maybe that was also one of the reasons I didn’t take it seriously at first thinking there was nothing we could do). I’ve basically given up until I realized there’s a lot of thing I want to accomplish in life and that I can’t just let AVM get the best of me. I’m just so grateful to be here and to know people who understands the struggle and pain I’m going through.


#6

I’m happy you found this site. I don’t know much about AVM but it is serious and should be looked into from many points of view. I’m here for you.


#7

Hi Ayes,

First of all welcome to the site! So happy you found it and it certainly is a wonderful place to find people who can relate and share experiences :slight_smile:

Since you are having a change in symptoms id get it checked out again ASAP just to make sure there is no pressure/size changes or anything else. Sending out angiogram or MRI scans to brain AVM specialist neuro-radiologists could be a good idea for second opinions as @DickD said.

I’ve read of a number of people on here and been lucky to meet a couple of people irl who do have untreatable avms who live full and happy lives. We are here to support you whichever path from going for more checks, you’ll get through either way.

Its awesome reading after taking some time out of school you went back and now in college. I am 23 and diagnosed in may this summer, deferred my final fourth year exams of university to undergo treatment and focus on health in general (or more try to avoid focusing too much). So its comforting reading of someone going back after some time away.

Once they have given you a once over with scans and neuro checking symptoms changes, and you have had some avm radiologists check your scans. Hopefully things will fall into place more, and will find answers to manage or treat these symptoms you’ve been having!

We are all in this together, ask questions or for reassurance or vent if you need to, we are open ears and most can relate in one way or another.

Please keep us posted on how you get on. I say this but I need to do an update post myself :confused:

Welcome to pm me anytime, be happy to chat :raising_hand_woman:

Corrine


#8

Hi there and welcome to the site. I’m in the minority here because I have chosen not to treat my AVM. It bothers me little in everyday life although like you I am a bit more clumsy and less coordinated that other people. I found out about my AVM when I was 14 and it caused a secondary condition. But aside from this I can honestly say I have been lucky. I think there is a widespread human tendency to want to treat anything that is wrong at any cost. But for me it hasn’t been an issue. Although it would be great to be AVM-free I too was advised not to touch my AVM by neurologists because it is in an awkward place and the risk of deficit is huge. I would rather get on with my life as ‘normal’ than dwell on it and cause myself incurable problems. There are many posts on this site from those whose treatment has caused side effects. I would advise you to go with your heart. Noone can really tell you what to do unfortunately and you can only make a decision by listening to yourself. Best of luck. Lulu


#9

Hi, do you have Gamma Knife in your area? You need to see a neurosurgeon to possibly treat your AVM? Please look into that! I had a very large AVM and had two Gamma knife radiosurgries in 6 year’s due to the size.
It is very important for you to seak treatment so you’re symptoms do not increase.
:purple_heart::blue_heart::purple_heart::yellow_heart:


#10

Is yours gone? I have had 3 embolizations and 3 radiation treatments in a 5 year period. It is still there.


#11

Hello, yes it is obliteorated . MRI shows large white area.


#12

I also have an AVM in my Right PONS; I also recently underwent a craniotomy. My bleed was underneath the cerebellum on my brainstem. My rupture was in July 2016; they placed me in a self-induced coma for 16 days the same day as the bleed to reduce the swelling before they were able to do the craniotomy. I also didn’t have control of my airway and was placed on a ventilator the same day as the bleed; I was on the ventilator for 18 days. I am a very truthful person and don’t mean to scare anyone, however I thought I was in a nightmare for awhile once I gained consciousness you can read other post on here of that specific experience.

Now specifically the AVM in the right PONS; we have looked into several options and direct surgery was crossed off our list because of the dangers it posed. Unfortunately, the PONS is in a place in the brain where at least 4 cranial nerves cross. Direct surgery is scariest for even the most gifted surgeon because of those cranial nerves. There was a chance I could be on a ventilator for the rest of my life and also lose control of several facial muscles. The surgery would entail an ENT drilling an estimated 2-3 hours to reach the PONS and then a very talented surgeon removing the AVM without damaging or cutting into the very vascular area that it is. I was referred to the best surgeon in the NC area that could possibly undertake the task.

After an MRI/MRA and a CT scan we decided along with the surgeons; that direct surgery wasn’t the most practical plan to remove the AVM; too much risk was involved. We also discussed a procedure called Cyber Knife surgery, which is more advanced than Gamma Knife. I have already undergone Gamma Knife back in 2003 and they were recommended for Cavernous Malformations only. The surgeon that recently did my craniotomy suggested that the Gamma Knife I had back then more than likely weakened the structures in my brain leading to the craniotomy; but life cannot predict your present circumstances and that Gamma Knife surgery cannot be convincingly blamed for the craniotomy. We decided to take a back seat and watch the AVM in the PONS; every 6 months we will have a MRI done. If they notice any growth, we will more than likely choose the Cyber Knife option.

I have only been recovering from the craniotomy for 18 months and I don’t know if some of the symptoms I’m experiencing are damage from the AVM bleed in the brainstem or the medication they recommended that I take for one year post-op; or perhaps it is from the AVM in the right PONS. I also have problems like intermittent balance problems, lack of coordination. I also experience feelings of being high, paranoia, and confusion (I feel like I’m in a different world). I also think I’m losing my voice, but people in my life say it’s my imagination or I’m losing some of my hearing. I know the “high” feeling, paranoia, and confusion were from the Keppra they had me on. I hope those feelings will go away in time. I have read other peoples experiences on these medications and with past experience, especially for me; I have more problems with the side effects of the medications, then help with these medications. I have been off Keppra for almost 2 months and I still experience withdrawal symptoms, I hope it ends; it is not fun.

I know it must feel like it is a lot to swallow; but I have been through a lot in my life. The craniotomy was the 4th procedure I had in my life. I was first diagnosed with AVM’s in my spinal cord in 1994. I had 3 surgeries to remove them; once in 1994, again in 1995, then last in 1999. They told me each time I’d be in a wheelchair; I proved them wrong. I also mentioned Gamma Knife in 2003; then the craniotomy in June of 2016.

Take the time to read each of the different experiences on this forum. I wish this type of forum was available when I first experienced an AVM. I don’t know if it would have changed any of the decisions that I made concerning them; but it would have helped getting some of the concerns I had off my chest. You mentioned a career future; I was a firefighter/Paramedic for 25 years. I fought the fight and survived for longer than I thought I would. I am 55 now and I’m tired. I know better than to put other people’s life in the balance, so I accepted that my career as a firefighter/ Paramedic has ended. Good luck in your decisions; and if you make one, please don’t look back and doubt that decision.