This is Angela's mom. As you all know she had her first MVD in August, with serious complications. 22 days hospitalized, 18 in ICU. I will try to make this brief. Just thought you all should know she was rushed by ambulance from Maine back to Mass for emergency brain surgery...again, as they were not sure she would make it,, last Satutrday.. She had another CSF leak, and had rejected the plastic put in her skull creating a massive brain infection.( She had a cat scan and was told the week prior, everything was fine) She is out of ICU now, but has a central line for a 6 week regimen of daily IV antibiotics. She has become severely depressed, and I am looking for suggestions anyone might have. She is only 32, and has had so many complications sice the first MVD. Any feedback for her depression would be appreciated, ThANX.
Really feel for Angela things have gone so wrong. I am on tablets for depression, what I find helps me is to write down all the things I am unhappy about and try to see if there is a positive way out of them. Sometimes just talking to someone helps, they don’t need to know the answers but if they are prepared to just listen and show they care that can be enough. Angela has a lot to put up with at the moment, it will take time now, she must perhaps take one day at a time when she has a bad day, just try to remember that tomorrow could be a good day. Hope this helps a little, and she will be in my thoughts, please keep us posted as to her progress. In time I hope to see a update from Angela herself. Margaret
Hi Angela’s Mom,
I am sorry you has had such a rough time. Tell her I’m praying for her and I’m praying for you. I know that this has to be so difficult for a mother. I’m sure she will get well. I am glad she has you for support. And I hope the doctor has her on some medication for depression. Be sure to tell her doctor that she is severely depressed. She may not be telling her doctor everything.
Liz
Dear Angela’s mom,
I just want you to know that people can make it through serious, and I mean serious complications. She is young enough to bounce back, even from the ICU. I also had serous complications, including multiple CSF leaks, meningitis, brain shunting, seizing and dying. They got me back, thankfully. Really, the best place for her is the hospital, and the ICU is the best of the best, in regard to care. Chances are she may not remember much, which is a blessing, even though she may seem alert and aware. You, in a way, are suffering just as much, as her mother and caretaker. My husband did not make it out unscathed from the experience. I am doing fine, but our perspective towards brain surgery is much changed.
I hope and pray that YOU are ok, and I want you to understand how this is affecting you, and take extra special care of yourself through all of this - make use of your loved ones, lean on them for support, and let them take care of you. And please, come here too, and feel free to talk about yourself, because this condition doesn’t just affect the sick one.
Hugs to you, and you will be in my thoughts.
Lily
I am praying for her and you as well.
Thank you, Angela’s Mom! My daughter is 32. Please mention to her,
Depression will be when she sees her friend Bob, after I walk 150 miles to visit…to go hiking…to push her off the yacht…the ocean water is a little cool this time of year.
Thanks Mom! bob
What a terrible toll on her and you. I send heartfelt wishes for a fast recovery to Angela and comforting thoughts to you too, Mom. Her fight against depression must be as concentrated as her physical fight to recover. I don’t advocate on behalf of any kind of religion but I do believe that when there’s too much to bear, handing the depression and pain and fear and anger and helplessness over to God will lift a tremendous burden for Angela so she can focus on her own spirit and recovery.
Praying for you all! God can take care of this situation, put your faith in trust in Him and he will see you through.
Hi Angela’s mom-
Reading this broke my heart. I have had many complications as well…so I know to some extent. I am sure you are her main support, but if any of her family or friends could just take a half hour a day to spend with her I am sure it would make a wonderful difference. I feel that I have lost many friends to TN, but there are some. Journal, journal, journal! I would not be alive if I did not have my journal. It does not judge, talk back or make fun, it is just there for you to say what you want. Also, could you get her on here at all? I know that being on LWTN helps me especially on days where I feel like I just can’t win!
wishing the best.
Hello Angela’s Mom,
I am so sorry to hear about what has happened.
I had my MVD performed in August as well and I can not tell you how upsetting this is.
If I am presented with a possibility of another MVD in the future I will certainly think about all the complications Angela is having and that will certainly be a factor in ANY decision I make.
Some of the people on here have had the same surgery Angela had and we all think back to that discussion that the Neurosurgeon had with us before that surgery.
The doctor warns us of this and that,loss of hearing and so on but its like a false reality when your in as much pain as Angela was in and we think it will never happen to us.
I am hoping and praying Angela recovers quickly and that this horrible condition leaves her life once and for all.
Thank you for letting us know how she is doing and could you tell her there are a lot of her TN friends on this site hoping and praying she recovers quickly.
Rick Smith
Site Moderator
it is the small things that can brighten your day when you are a long term patient. If she is allowed to go off the ward go to the cafe or out for lunch within the hospital first- these are things that you can do in between AB regimes. The medical team can start her on a low dose antidepressant. And as others have mentioned - try and get therapy dogs in or ask for her to join some of the rehab programs which the rehabilitation ward do with the occupational therapists. Also ask for social work to be involved as they have access information about long term hospital stays.
I must add that I am a registered nurse in Australia, and I know the medical system here is totally different than in the US. But ask around and get the medical team to look beyond the physical and look at the emotional and overall picture.
I send positive thoughts to both yourself and Angela and I hope that you are looking after yourself as well. You are the rock at the moment so looking after yourself is also a priority.