I had MVD on 11/29 and I am in a situation that I never thought I would be in. I am having terrible disagreements with my family and my husband. Everytime I disagree with my husband he tells me I am being irrational. I was in acute rehab after surgery and we had a terrible disagreement the day I was supposed to leave. He told me that he"couldn't decide what he was going to do with me. If I should go to another hospital or not because I wasn't making any sense." I feel like he is trying to control me and he is making me nuts. How can I recover like this? I am beyond miserable.

So sorry to hear this! Having brain surgery is no small thing and you are still very much in recovery.

I don't know your specific situation-but everyone around you should give you full support until you are back to yourself.

It is possible that you seem more emotional at this time and that is normal and you may be affected by the pain meds as

well. That is all normal. Try to just relax and let everyone know what you need right now is no stress and lots of care! Hope they listen!!

May I ask why you were in rehab? That is not a normal thing with MVD surgery.

I went to acute rehab for several days after surgery because i was having terrible vertigo. I had balance issues before I had the MVD and my doctors think it is related somehow to my fibro and cfs. The good news is that the vertigo has abated tremendously since surgery. For the first few days i could barely walk as it felt like the floor was rolling! In other good news things have been straightened out here. I am feeling more myself every day and my husband is being supportive. I appreciate all the support i get here, directly and indirectly by reading everyones' posts. Blessings.

Dear clearbluesky,

Living with TN, the meds, the surgeries etc impacts us greatly, it also impacts those closest to us…just like there is no manual on how to be a parent, there is no manual on how to cope with chronic illness.

It’s a moment by moment thing, it’s not just the physical side effects but also the emotional ones that can be such a struggle.

I can tell you from experience, that communication is really the key to help us and them understand one another.

It’s sooooo very important to communicate your and his very real feelings, if you can’t talk about it due to emotions, then write each other a letter. We and they need to be open to hearing each others fears, concerns, worries, dislikes etc.

We should also be able to resolve these things by understanding one another, listening, being respectful and trying not to take things too personally. It’s not easy but we must try.

It’s been a real trying experience for myself and my family…I’m not proud of some of my behaviour and feelings BUT I know that a lot of this is as a result of my circumstances, medications etc i take responsibility, but I also cut myself some slack too. Vice versa for my husband and kids. All we can do is forgive one another and try better the next time.

Your focus right now should be YOU but you do need your husbands support and love. So find a moment to talk honestly with one another…I’m sure you’ll find as I did and do, that it’s easy to misunderstand one another when emotions run high. We’re most vulnerable with those closest to us and hurt deeper when things are left unsaid or un clarified.

Thinking of you. Huge (((( hugs )))), Mimi xx

My thoughts! I would give your Husband and family the benefit of the doubt. You and everyone has just gone through tremendous stress. I am sure they were concerned about possibly losing you during surgery or what would be the outcome and you most of all had consider stress and discomfort. I would call it a truce for the holidays. Think peaceful thoughts if not for them than for yourself. You CAN recover. It is time to put on the survivor swim vest AND create the environment that you need. Just distance yourself mentally from how your family is acting. Just as if you were watching a movie. Use your meditation, just listening to peaceful music, prayer or whatever means to settle yourself. You can recover no matter how they are acting. Just call it a truce for the holidays! Sending love and peace. Tina

Hi Clearbluesky,
I can totally emphasise with you as I had my 2nd MVD on 6/11 and my moods and emotions are still all over the place! I get very tearful at times, I take things which my husband says to me totally the wrong way which in turn causes more friction between us; luckily for me he is very supportive and understanding and realises that it’s the illness/meds/surgery which are the main causes behind how I’m feeling etc!
Over the past 2 years I have learnt to try and tell my husband how I’m feeling and what how this illness makes me feel. I totally agree with Mimi, you must find a way to communicate how you are feeling to your husband and his feelings are equally important.
Because TN is a hidden illness, not a lot of people understand it, it’s a bit like depression because you can’t see it then it often doesn’t seem real for those who don’t understand it. If you had a broken leg, people are more likely to understand your frustration etc and therefore are more likely to offer help/support!
Try and get your husband and family together to discuss how everyone is feeling, if you find that everyone is talking at once, take control of the situation and use an object such as a pen and whoever has the pen speaks and everyone else listens until that person has finished talking… Just an idea to try and help!
When I feel myself that I am becoming too frustrated (some would say irrational) I tend to take myself to another room until I have calmed down a bit, just to try and prevent a situation arising as I don’t always know myself why I feel like I do and what you need to understand that this is absolutely normal with this illness!
I really hope you and your family can find a way forward and that you start feeling a little better soon, if you can’t find a way forward, I would suggest that you talk to your GP and even take hubby along too!
Take care
Mandy : )