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AVM Survivors Network

More info and some questions

Hello to all!
Since long time I don’t post anything but gladly I’m still here :slight_smile:
There are some developments so I’ll try to summarize:
Approximately 3 yrs ago after having very strange feelings I discovered I have an AVM of 6cm diameter located in the right frontal lobe (and so I found that the strange feelings were epileptic seizures). I started being medicated with kepra 500mgs per day. I still had seizures approximately 1 time per month so the Dr increased the dosage to 750mgs/day. After this I couldn’t properly sleep and I lost a few kilos due to lack of appetite, so we returned to the initial dosage. Additionally I had an aneurysm in the posterior cerebral artery and the question was, should we coil the aneurysm and leave the AVM untouched or remove it and at the same time treat the aneurysm. After discussing my exams with several Drs around the world it was decided not to touch the AVM (it’s classified as level 4, it’s has a deep venous component and high flux) because according to them the probability of success was bellow 50%. While coilling the aneurysm there was a dissociation of an artery which provoked a minor stroke, without any physical or mental damage (this happened two weeks before I defended my PhD so I was in the hospital studying for the defense…). Since my Dr always told me the only thing I could do to decrease the probability of rupture was to quit smoking, I did a huge effort and I quit (since 4,5 months I don’t smoke, after 17 yrs of smoking one package per day). Anyway, everything was good, until two days ago. I’m at Greece (my boyfriend is Greek and we always come here for vacations) and I started feeling bit strange. The symptoms were feeling weak, very mild headache and heavy head, like the intracranial pressure was too high. It was nothing serious but since these symptoms were similar to what I felt when having the stroke I decided to go to the hospital and I’m still here because my AVM bled. It was a very minor bleeding that doesn’t come from a ruptured aneurysm but from a very small vein in the AVM. Again, being unlucky I’m very lucky because there are absolutely no mental or physical damage. Now my questions… My Dr back in Portugal always told me not to stress and to try to live a normal life without being afraid so that this doesn’t stress me increasing the probability of severe rupture. Since now maybe the panorama changed and I cannot reach him, I’m very confused because these Drs here tell me to completely change my life. Their advice is: you cannot work a lot (being a scientist I really need to work a lot), cannot go to the sun (like the beach), cannot do physical exercise (not even to go up a mountain, for example, or dance for some hours as I did all my life), cannot drink one drop of alcohol (I never drunk a lot but the fact that they are forbidding me this really stresses me out) and avoid flying as much as I can (being a scientist I always need to travel to conferences and having a foreigner boyfriend demands me to flight some times per year). This means a complete change of my life. They tell me that all of these things increase the probability of having a seizure that increases the probability of bleeding (which my Dr never ever mentioned). Now they changed my medication to epanutin saying to leave kepra out because the 500mgs are non therapeutic (like for 2 yrs I’m taking pills that don’t do absolutely anything to me? Why would my Dr prescribe this if it was not doing anything?). So, you understand my concerns… Since I cannot reach my Dr and until the end of the month I’m stuck here it would be nice to have the opinion and experiences of you guys so that you can help me out to better understand these discrepancies. I’m really feeling that if it is to live such a constrained life as this, better not to live at all. I fought for so many yrs to be an astronomer, with these measures they are taking even this away from me, not to talk about a simple day at the beach or a simple hike in the mountain… Another thing that made me very confused was that they told me that if it has to happen it happens, no matter what I do (basically that there is a probability of rupture that is now slightly increased after the 1st rupture, and even if I take all the precautions it might happen, or not). So why to live such a constrained unhappy life just to finish having a rupture anyway…? Actually when I had this rupture I was not working, not in the sun, I slept and ate well so… nothing associated with these risk factors they mentioned.
Well… As you can imagine I’m feeling very sad after all of this and if you could please share your stories with me maybe it might help me to decide better how to live from now on (because so many different opinions and so different and sometimes opposite information given by different Drs is really making me stressed and confused).
Thank you so much for your time and attention.

All the best,
Iris.

Good to hear from you Iris. You have a great deal to consider, but being a PhD sure puts you in a good position for analysis and research! You certainly have a lot going on in your life and the risk reduction steps suggested present some challenges. I don’t have any personal experience to share really other than shorter term post bleed, and prior to gamma knife. Mine was all about keeping the blood pressure down, and not over exerting and as time passed it was limited. I was ultimately allowed to do everything I wanted expect sky dive and scuba dive.

Have you thought about getting an opinion from the US? I’m in Canada and have a great team, but I know the Barrow Institute out of the US is incredible and will give an opinion on treatment.

I don’t think I was any help at all, but know we are with you from the site! Take Care, John.

Hello John!
Thank you so much for your reply (of course it helps, it always does :slight_smile:). I did not contact the US but this might be a ver good idea. Do you think that by searching for someone there and send them my exams they wouldn’t mind to take a look and give me their opinion? Do you have anyone in mind, specifically?
Yes, as you say the point is always to keep the blood pressure low because it’s when it’s high that ruptures might occur.
Regarding the fact that I can do my own research indeed I always did. The problem is that the literature is quite limited and sometimes opposite. I believe that this is due to the fact that AVMs are quite rare and personalized (like every case is different than the other). Also medicine is more of an empirical science than hard science, so it is really hard to take such important decisions based in scarce data and weak correlations. My Dr told me, and this I can confirm in scientific papers, that there is a “strong” correlation between smoking and AVM ruptures. The same with stress due to increased blood pressure. Now regarding seizures (not motor seizures, just cognitive ones), sun exposure, flying, mild physical exercise or hours in front of a computer… I cannot find any evidence on that… Maybe I need to search better and ask for more opinions of experts, but I do believe that one of the best ways is to listen to other people stories.

Thanks again and all the best,
Iris

Here are a couple of very well respected places:

Barrow

Get a Second Opinion | Barrow

We offer second opinions for brain tumors, spine surgery, aneurysms, pituitary tumors, acoustic neuromas, and metastatic brain tumors. Learn More.

Mayo Clinic

About Us - Contact Mayo Clinic

Addresses, phone numbers and electronic contact form for Mayo Clinic campuses in Arizona, Florida and Minnesota.

I know there are several others, UCKA being one that I reclll. Certainly worth an opinion for minimal cost!

Take Care, John.

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Iris,

Hi. I know what you mean about all those strictures! What would life be like!? However, I’m not a doctor, so I’ve no idea which of those is important or relevant. I do agree with the general principle / need to keep blood pressure down or in a sensible range. Cutting out coffee, chocolate and alcohol definitely helped me feel less dizzy as my AVM was changing a couple of years ago. I was able to have an embolisation but if helped beforehand to reduce my dizziness for a short while.

However, John has provided some excellent links to second opinion programmes in the US and if you are able to see your doctor in a month or so, maybe doing as they said meanwhile is a small price to pay – for a short time. Obviously, it is much more difficult if you really do have to avoid nearly everything forever.

Let us know how you get on!

Very best wishes,

Richard

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Hey Iris,

I’m going to tell you two very brief stories about two very dear people. My father in law and my brother’s mother in law.

My father-in-law turns 81 this December. 10 years ago, the doctors diagnosed him with non-hodgkins lymphoma - cancer - but of the slowest growing type possible. They discussed treatment plans, side effects from the treatment and determined that if he didn’t do treatment, the cancer would give him a 10 to 15-year life expectancy. If he did do treatment, he would maybe get another two to four years out of - but he would spend at least two or three of those years feeling awful because there was a substantial risk that the chemo would be harder than the cancer. So far, that has been true. His health is failing but dang, he’s 80 years old and still teaching college speech classes and so obviously loves it.

Why did I tell you his story? Because, if the “changes” are going to make you so incredibly affected that you will lose all semblance of what your life used to be, then that’s a question you need to raise with your doctors, with other doctors, and with your boyfriend.

Now, my brother’s mother in law (or my kid’s third grandma as they call it). She’s 92, still talks with her grandkids on Facebook about the Detroit Tigers baseball, a great lady.

But, at 92, things are wearing out. Knees, heart, kidneys… they are all 92 years old. What they (she and the direct family) are wrestling with is whether treatment is worth the price. Yes, she could go on __________ but it would require _______________.

Both of those have nothing to do with an AVM but they both have wrestled/are wrestling with when is it appropriate to say, “I know this is a risk, but it’s a risk I’m willing to take to have the type of life I want to have.”

I hope that these stories encourage you because other people are dealing with tough decisions and with balancing life with the risks compared to life without the risks but less full, less enjoyable and less,

One last thing, every time I go in to see my neurologist, my psychiatrist and my counselor, they all ask me if I’ve had any thoughts about hurting or killing myself or others. My standard response is, “No I haven’t, but I promise I will scream and shout if I need to to get the attention I need to get the help I need.”

When you wrote the following:

“I’m really feeling that if it is to live such a constrained life as this, better not to live at all.”

That raised a red flag in my slightly(okay maybe more than slightly) damaged brain. Please, if you are feeling that way, talk to someone, talk to us, talk to the boyfriend, find a counselor who can help. But don’t give up, especially don’t give up because of one doctor’s opinion. While many doctors have the reputation that they think they are God, news flash, they aren’t.

I lost a 50-year-old as I call it, “grocery store friend.” We aren’t close but we are close enough to talk at the grocery store and our kids went to the same school. Two weeks ago, her husband came home from work and found her, passed away, from suicide.

Take this shit seriously (sorry if I offended anyone but that’s what it is - so I guess I’m not sorry) we are all traveling down the really bad road and there is no shame in saying, “I need help.”

By the way, my current AVM problems - brain damage, voice damage etc…all started 18 months ago. My wife has brought me so far along the whole process and is helping me realize that it’s okay to say, “I need help.”

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Thank you TJ for the support words. They mean a lot to me… I think you are totally right. It’s just that it’s more difficult to take these kind of decisions when you are younger (I’m 32). Difficult for yourself but specially for others, the ones who love you. Some do not understand when you say these words… Some would prefer you to be “comfortably safe” in some dark room where they can take care of you. Gladly my long term boyfriend understands, besides his fear and pain.

Yes, it’s ok to ask for help. There are some days (like the one when I wrote the post) that are very difficult. The fear takes you. I will die without experiencing what is to be a mother, or worse, I’ll have a beautiful baby just for him to grow without a mother. I’ll never see my loved ones again, that are definitely the most important part of my life (I live for relationships more than anything else). All my hard work to become a PhD and finally be able to travel the world doing what I love, all to the garbage… These days are hard, but usually they go and next day I’m the happy, strong Iris again. So I never had psychological help, I still don’t think I need it.

I wish you all the best with your AVM and I hope you’ll live a good extended life besides all these problems… Remember we are here for each other. If one day you are feeling low and would need some words of support and encouragement please don’t hesitate to contact me. I would be really happy to do what you just did for me <3

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@irisb I am so sorry this happened to you and you are stuck with conflicting info. Dr Michael Lawton is now at Barrow in the USA he would of been my dr when he was in San Francisco but I was at Stanford ( long story ) so I choose to stay there. But if ever my dr retires which is going to soon. I will be making the journey to Arizona to see him- I have seen his work as well. I know he is considered the best in the USA. I also know they do remote consults. I personally trust what he would say. I would have my list of questions printed out and ready to go over. So many restrictions I know you have had a bleed hopefully those restrictions are just for a short time.
Hugs Angela

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