(Closed) Need to vent–FI's potential brain surgery

posted 7 years ago in Emotional
Post # 2
4685 posts
Honey bee
  • Wedding: October 2019 - City, State


jillbean1217:  I’m so very sorry. I’m not exactly sure what else to say. Such a tough road to navigate but how special you are to be such a loving and supportive Fiance through such hardship. That isn’t something every person is capable of. Same can be said for your Fiance and his bravery and ability to make such hard choices. You and your Fiance will be in my thoughts in the coming days. Stay strong Bee xoxo

Post # 3
1739 posts
Bumble bee
  • Wedding: July 2016


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jillbean1217:  That is so beautiful. Your Fiance is super talented! I don’t know what will happen but you’re incredibly brave people going into it with your eyes open. Don’t make any promises you don’t know if you can keep and do things you both love to do together and maybe take pictures and make videos leading up to the surgery.

I wish you both all the best! My brother is disabled and had a series of seizures caused by medication reactions, very scary so my heart hurts for you to having to go through so many. Hopefully if/when your Fiance gets the surgery things will have been successful and there will be counseling and rehabilitative services that help you both get through it. Fingers crossed for a seizure free future! 

Post # 4
721 posts
Busy bee
  • Wedding: November 2015 - The Victorian

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jillbean1217:  I am so sorry 🙁 That is really terrible and I can’t imagine what you’re going through. OF COURSE you’re scared! You have every right to be! While I was reading, I was thinking “I would definitely have the surgery.” Like you said yourself, he’s bascially a prisoner in his own body. He wants quality of life, and that is understandable. It’s also understandable that you want to keep him safe, and it’s BRAIN SURGERY, so you are scared. The only things I thought of that might help you (as it seems he has made his decision, and you want to be there for him). Start taking videos, making scrapbooks, writing things down (a la 50 First Dates) so that if something does happen with his memory, you can at least try to help. I also think this will help YOU to do something leading up, to occupy you. Also, I’m sure he’s terrified of losing his artistic ability too. But maybe if, again, something bad happens, he will find something else he likes. Maybe it will be abstract painting, maybe it will be something he couldn’t do before because of the constant seizures. Mainly, jsut be there for him, as you have been. You’re both dealing with this incredibly well and he’s so lucky to have you. Just keep your head up and tell him you love him every time you think it. Good luck, dear. Truly.

Post # 5
2584 posts
Sugar bee
  • Wedding: October 2011

I’m so sorry.  I have no advice…it terrifies me to think anything could ever happen to DH, and I will be taking your advice and hugging the shit out of him tonight.  I’m thinking of you guys.  xoxoxo

Post # 6
1894 posts
Buzzing bee
  • Wedding: Cathedral of the Immaculate Conception/The Gallery

What a tough situation to be in, I am so sorry you are dealing with this. Your fears and concerns are totally valid and it’s impossible to know what that would be like; I cannot imagine.

I know you said you cannot afford counseling for yourself right now, but I would seriously consider looking into either community mental health organizations. Most counties offer free or reduced services for citizens. Also, many employers offer counseling to employees through their insurace providers and often offer a few free sessions. It would  be really helpful for you to just be able to express these fears and feelings to a neutral party and they can likely help you with some coping or sstress management techniques to help you through all of this.

Take care of yourself, you’ll get through this time. Best of luck to you.

  • This reply was modified 6 years, 8 months ago by DrunkInLove.
Post # 7
4044 posts
Honey bee
  • Wedding: June 2014

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jillbean1217:  I’m so sorry and I totally understand how upsetting this all is. I think you need to put faith in the doctors. Think of the positives – what if this works? What if your Fiance never has a seizure again? I would bet your Fiance would choose being able to be seizure free and not able to paint over having seizures but still having his talent.

I did want to share a story with you – and I dont know the details. There’s a young boy from my town who had part of his brain removed due to seizure. He is the MOST amazing guitar player. Seriously. SO AMAZING. I saw him in a talent show at his school and then someone told me that he only had some of his brain. So perhaps your FI’s brain will learn to accomodate and he will paint again. 

Post # 8
2527 posts
Sugar bee

I’m so sorry you’re going through this. Take things one day at a time. That’s the only way. Every day, a new set of challenges and you’ll meet them head-on because you have no other option. I lost my husband to cancer some years back and although it took me 4 years to start dating, I was blessed and fortunate to meet the most wonderful man. But life being what it is, he now has congestive heart failure, is on the transplant list and my wedding plans are on hold as well. What can you do? Just love him, support him and be there for him. Things have a way of working themselves out, sometimes in ways we don’t understand at the time but eventually it all becomes clear. You time with him NOW – TODAY is a blessing. Don’t waste it dwelling and second guessing, just relax and enjoy each other. Bee hugs!

Post # 9
2274 posts
Buzzing bee

First, the fact is, I BELIEVE in prayer, and I will be praying for him.

If you haven’t done a TON of research about this type of surgery, get to work and do it. Even if you don’t learn anything new, you’ll still feel as though you’re doing SOMETHING.

I’m a retired therapist, and even before I left active practice in my field, amazing things were happening in the treatment of seizure disorders.

So far, you have been doing a WONDERFUL job. I have no reason to think you will do less whether he has the surgwry or not. 

Do a Google search if you haven’t already, and take a look at the list of people who are living productive, successful lives with seizure disorders. Each of the surgical interventions is fairly unique, of course. 

You are absolutely right, no one can give you the “right” answers, but IMO the best thing you can do for him and for yourself right this minute is to work hard to STOP RUMINATING ON THE “WHAT-IFS”!!!! They are NOT helping you anyway, so fight them!

They serve neither you nor him any positive purpose!

The God I talk to doesn’t care if you’doubted in the past. Talk to the life force outside of yourself when things get tough. You may be surprised to get some useful answers.

I’ll be thinking of you both. Please let us know how things are going!

Post # 10
122 posts
Blushing bee

At age 30, earlier this year I had a seizure after suffering absolutely no symptoms.  2 days later I had surgery to remove a tumor that had been growing for 15 years – half my life – and whose existence no one had suspected before it caused the seizure.  I’ve been on Keppra since, and I’m having my second surgery at the end of April to remove, hopefully, the rest of the tumor.  My wedding is in October, almost 6 months to the day after the right third of my (long, thick, and sorry but beautiful) hair is scheduled to be shaved off for the second time.

It’s not quite as scary as your fiance’s surgery – I’ve only ever had the one seizure and the Keppra isn’t causing any side effects for me, I’m working full time at a stressful job, and living an otherwise normal life – and my surgery will be very different from your fiance’s.  But it’s still pretty terrifying.  The thought of losing my independence because of a slip of the surgeon’s scalpel is the worst part.

Feel free to PM me if you need to talk.  It might do both of us good to talk about this from “the other side.”

Post # 11
1157 posts
Bumble bee

Your fiance is very talented and I hope he retains his gifts after the surgery, I went to school to study illustration and have had nightmares about losing my hands. The fear is real and heart breaking.

Never been in a situation like what you describe, I can’t imagine what is like but I can tell you my BF has. He was 7 years old when he had brain surgery for epilepsy and seizures. If he hadn’t had the surgery, I would probably have never met him. He has told me that after the surgery he did have a personality change, according to his parents. Before he was very emotive, whereas now, even though he feels strong emotion, he doesn’t always do the greatest job expressing it. It is something I had to get used to (as being different from other guys I had dated), to learn to trust his words when he expresses his feelings, instead of his expression or how flat his voice sounds. I love him though, I wouldn’t have him any other way.

Now that we’ve become serious, I’ve come to terms with the fact that (because he still has the rare seizure) he may have to go through more treatments, surgery and medication. It is scary to think about, but if I am ever in your shoes I know I will have to rely a lot on my family and my friends to get me through, while I support him. I don’t know if you’re religious or not, but if you are you can speak to your priest/pastor/congregation and pray for the best possible outcome. Sometimes even solitary meditation can be good for your mind so you can piece through what you’re thinking and feeling. I am wishing you all the best.

Post # 12
97 posts
Worker bee
  • Wedding: October 2010

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jillbean1217:  I totally feel for you. My husband underwent 3 craniotomies (with biopsies) and it was terrifying. His situation was different because they thought he had cancer, but please feel free to PM me with any questions. 

There is always a risk with any surgery, but I can tell you that my husband had pieces of his brain removed and he is still the same man I married. Just make sure you find a neurosurgeon you both trust if he decides to go through with the surgery.

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