Is your condition affecting your marriage?

Many patients with AVM go through crisis that at the end affect not only yourself, but your family members too. After my last crisis in 2011 I felt different changes in my body and I lost a lot of mobility. I could go through and look after my kids and husband, trying to understand my new body. But somehow, during that stage of my life I guess I lost the connection that I use to have with my husband. I am very sad. But I feel that I must let go. Does anybody dealt with separation or even divorce because of your AVM's?

Rosario, I can think of more than a few members who have separated or divorced after avm surgery; if you type "divorce" in the search box, you will find a lot of stories. Chronic illness can put a lot of strain on a relationship. I hope you and your husband will consider marital counseling before making any final decisions; sometimes, counseling can really help. I hope things get better for you soon.

I must say Rosario... You sure brought up a good discussion.

Although I've never been married, it has hindered a couple relationships I was in. The last one I was in was 5 years ago, when my major problems started. She was not supportive or understanding in any way. So I ended it. Now I don't bother with them at all. Dating is something I'm not even interested in any more. That's more trouble than it's worth to me. Don't get me wrong, if the right woman would come along I may give it another chance. I'm just not looking.

Relationships are tricky. Some people are able to grow closer together and be supportive of each other. And others,.. well... they grow apart. I believe very strongly in trying to save a marriage or a relationship a person is in. But sometimes, it just doesn't work out. Are you sure you lost the connection you once had with your husband? Or.. has your marriage gotten to the comfort zone (as I call it). Ask yourself this: Do you love him? Does he still love you? Can you imagine your life without him and still be happy? Please don't answer these to me. These are you personally feelings and I don't want to pry. These are questions I've asked myself when I was evaluating a relationship I was in.

Good discussion! One consideration is "what is a good relationship (or marriage)?" I think we all know couples that you can just look at and see how much they love each other. Think of seeing an old couple holding hands as they walk together..... That's the kind of relationship my wife and I try to have.

And most of us know couples who bicker, fight, argue, say nasty things to each other, but stay together or married. Even if you asked these bickering couples, they might admit they are happily married.............

I would never say "no one should get divorced", but I would like to see all couples work hard to maintain a good relationship. If that requires counseling, that would be good. Often, just focusing on your significant other and his/her needs goes a long ways to strengthening the relationship.

If you are going to be a good (golfer, tennis player, basketball, whatever) player, you would not consider not practicing to do better. But when it comes to relationships, most people consider that once you are married, you've done all you need to do to live happily ever after. Sorry, doesn't work that way, except in fairly tales.

Best wishes to all,
Ron, KS

In my case, my AVM bled, and I was in a coma for a few weeks. After “waking up”, I was so focused on getting my body and relationships back to where they were just a month ago (which never happened-FYI), that I pretty much disregarded and was pretty much oblivious to what I felt about all of these foreign changes to my life and how/if other things would change. I just thought that I could get back to how my life was; I would just get better and resume my life…which was so not the case. That was the real wake-up call.

Eventually, everything started to disintegrate, and this woke me up even more to realize how short life is, to re-evaluate my priorities, to seriously look at my significant others’ priorities-and how I factor in as a priority, realize what others expect of me, etc.

It wasn’t an over-night aha moment, rather it just started the process of me analyzing (and probably over-analyzing): realizing and/or questioning what I grew up accepting as “normal”, communication, what I expected in a best friend, etc. It obviously became much deeper than my original thought of my old life in a snap of an instance.

Long story longer, these newly-arrived-at perspectives made me shift in how I wanted to pursue and live out my future. In a way, I lost the connection that I previously had; I prefer to look at it as gaining a new perspective, that is, in no way, the same as my old perspective.

Either way, whatever it’s called, it is sad.

As far as letting go, it’s important to let go of what was and not necessarily expect to go back to the way that it was. Hopefully, with some counseling(?) and very hard work, you can salvage your family.

Whatever you decide is right for you, I know that it will work out.

I must post a response on the spectrum. My AVM caused 9 strokes and multiple & massive clots to my lungs which put me in coma & on a ventilator at 25. I’ve not been the same since that time (worked out 3 times wk)and my husband and I have been married 14+ year now, but only 2.5 @ time of incident.

We work hard to have a good healthy marriage that grows and changes as we do and vowed to take our marriage till death despite my removing from ceremony bc we came from families of 7 marriages between our parents-lol!

Let me set the stage. I was on a vent & my hands were tied to ICU bed. My nose was itching & I couldn’t scratch it or communicate! I must admit when I was told I may not walk, talk, or be able to read or care for self; I debated if I would still be the woman Mike would or could love. I was and still am and pray we continue to work on connecting with each other daily no matter what life throws at us. It’s scary, but it is about a deep friendship, love and emotional support, but this is not to say it isn’t tough or doesn’t change or hasn’t impacted our lives in good as well as stressful ways. Sadly, we have more challenges &'are at risk for marital stress & divorce simply due to financial strain due to hospital bills & second opinions, etc, but we are worth it & should be invested in our overall care. I have found that when I am upset & stressed I have noticed my AVM hurting much worse. Thus stress mgmt, communication, self care, counseling, are crucial for me & what I hope for others.

While I've had my tough times with AVM that my wife had to support me, as the years have passed times have occurred where I've had to support her. It's been 24 years since the surgery and life has been a challenge. When times got real tough, we went outside for help. The first two people we talked to weren't very helpful. However, we're stubborn. The third and fourth have helped us work through these things.

A lot of the first step was recognizing all the problems. For example, did you know that the effects the AVM has on your brain happen before the seizures or the surgery. One of my examples is poor memory. It turn out I've never had good memory and it was really bad the last 5 years before the seizures started. So, we know that I can't remember more than two things when going to a store. In fact, even two is a high risk.

Writing down on paper why I'm going to a store helps me a lot. Sometimes, I keep the paper in my pocket and sometime I pull it out to read. But, she's learned to "gently" remind me to have that piece of paper in my pocket when I go to visit my hardware store.

Dealing with big problems with the kids means we have to take our places. I can't say that I like the place I'm in. I want to be involved and up front with them. However, things just don't work right with my people skills no more. So, I have to sit back and provide support while she gets all the "fun" of helping the kids. Actually, this puts a lot of pressure on her, so I try to reduce pressure by not shoving my way in.

We've been married 28 years and it's been 27 years since that first seizure. But, you can see that it's still an uphill battle for us, so we have to work hard to stay together. I've been luck to have my wife, so I'm still working hard to keep things going.

Please don't get me wrong, I'm not saying how others should handle their problem. Each situation is different.

Rosario,

Here is another story. I was in a relationship at the time of my AVM (not a marriage). After about a year it dissolved BUT I am happy to say that the AVM gave me much needed perspective about the relationship that might never have happened if the AVM was not found and started me on this journey. The point is, the AVM itself is not at fault, it just allows one to get a clearer picture of what makes for a solid relationship. I know nothing about your situation about you and your husband. Only you know that and I’m certainly not in any position to tell you how to proceed. But you will decide in heart if you want to continue (as well as him) and know that the AVM, while challenging and quite stressful, is not truly to blame. Just a thought. Hang in there! :J

Let’s talk straight. Life is too short for it to suck. If another individual is the cause of your, it’s time to move on BUT make sure it’s the other person, don’t make him or her the cause of you misery if it’s actually your medical condition.

some times (many times?), it is really hard to tell what is a cause of your own frustration. I'll use me as an example: I was in a good paying job that I didn't especially enjoy. Our son had had TWO brain surgeries to correct a seizure disorder, which thankfully worked. My wife in 1991 was told about her AVM. She was told "go home and learn to live with a ticking time bomb in your head." Great, that's easy to know and won't cause much stress. Then about 8 yrs later, she started several, like 10 total procedures including embolizations, two radiations, and two brain surgeries to fix. Not much stress there.

About the time she was finishing surgeries, my job was about to vaporize. I was within a few days of being laid off, and took a medical leave of absence due to stress. Went to a great counselor and it took me like four sessions to finally figure which were the biggest causes of my stress. Turns out work was the major contributor.....

My point is it's not always easy to tell. At my worst, I wasn't a good husband, dad, or worker, and depression/anxiety was eating me up. I'm much better now, I think............

Ron, KS

Wow Ron! You sure went through some rough times. With me never being married or having kids, I can't even imagine going through all of that. But my parents did, to a point -- I was in a coma when I was only 18, a week away from my 19th birthday. The dr.s told them that I had a 50/50 chance of dying or coming out of it with permanent brain damage. I don't remember much of it but, they told me they were happy as a lark when I remembered who they were. It took 10 months (I think)and I was back to my normal self again.
It certainly makes you grateful for the smaller things in life, doesn't it? (smiles)

You know, this “ticking time bomb”, “hand grenade”, “Sword of Damocles” thing is wearing pretty thin. Why the Emergency Room Third Stringers just don’t remove those phrases from their vocabularies is beyond me.
And yes, I know it’s not just the ER docs who use that terminology but it starts at the top. A doctor once just shook his head when he heard me repeat that and he basically said you know what you have, if you can’t show caring at least a modicum of empathy.
Anyway, this bulb within my head which awaits to flower, has affected me in many ways. The most subtle is my never forgetting to tell those important what they mean to me and that I love them.

The Dr who used that phrase with us was a well know local neurosurgeon............

Ron, KS

Hi Ben,

Yeah, my counselor said he didn't understand how I could keep going, or was an alcoholic or something.

Although watching both my wife and son going into major surgery several times (none were easy at the time), in retrospect, I was more stressed watching my 18 yr old son go in to surgery. My wife and I have a wonderful relationship, and I hope it lasts forever, but if it ended, I would have had no regrets. With my son however, his life was just starting, and the thought of losing him was almost too much to bear.

I wouldn't wish this journey on my worst enemy..............

Best wishes,
Ron, KS

Some people lack tact.

Separation and divorce happens to many people who go through a 360 life altering change. I've come to see accept that "some" of my self will never be and other parts of "me" have become stronger. The word "Survivor" says it all. Most of these diseases are invisible with the eye so no one really see your struggle and worst of all you are the one that can explain it.

Don't get stuck , hold on to love , hold on to what is precious, fight for your new "self". The light usually comes between 1-3 years after a traumatic event. The in between time is a marathon!

My wife and I take the time to just repeat our vows to one another, to remember our promise, to reaffirm our new foundation.The words mean so much more now then they ever did when we first said them together on the alter back in 1970!. I hope you learn and grow together and no blame, shame, guilt, follows you or your spouse. It just doesn't work that way!

This is a good discussion and as the wife of a man with an AVM, I admit there are times I wonder what it will do to our relationship. I know I sound selfish, but I do wonder if I have what it takes to get through it.

A little background - I lost my first husband to cancer at age 44. We had been married 26 years. I never gave caring for him and doing all we had to do a second thought - I just did it, I took care of him 24/7, I was by his side at every appt and procedure, I supported every decision he made and could not imagine having done anything different. But to watch that 6'4, 200lb man wither away, become paralyzed and rely on me for every thing at the end....that was tough...

I married my current husband 2 years ago and a year and a half into it, we find out he has this AVM and are learning all the complications that can occur. I admit it scares me to death. I admit I have wanted to run away... While I don't believe I could ever do that to him, I do wonder if it will strengthen our relationship or tear it down. For me and probably many spouses like me, the biggest issue is FEAR. It isn't that we stop loving, but we allow the fear to take over and convince us that the relationship is the problem and not the fear of what may happen...

Hi JFan,

Wow, you have been through a lot. Congrats on keeping your sanity!

Your story points out that I believe few of us have the skills to carry on a frank discussion with our spouse dealing with such a potential life altering thing like an AVM. That is why I believe that a competent counselor can help the man and woman, and most likely kids to help them deal with all the issues and fears.

Best wishes,
Ron, KS

hey i went through the same thing i was only 26 when i had a brain bleed and surgery to remove my avm. i was with my girlfriend for 9 years at the time. she was supportive while i was in the hospital but once back at home things went down hill. by the time it was all over i could do just about everything formyself just only had the use of one hand. but i told my self if i can go this time in my life by myself i dont need that person. best of luck to you