Help, please

[AmandaHsu]

I am Amanda, from Nanaimo Canada, please forgive my bad writing since English is not my first language.

My husband has been in ICU 20 days, he was being diagnosed meningitis on Dec 10, after that day, he opened his eyes here there but his hands and feet had started losing responding after that. Around Dec17, he's fully rely on life support machine ( not breathing by himself), he still open eyes sometimes and look around. So far, Doctors still do not know if it is viral or bacteria but all tests for bacteria are negative.

From this week, doctors came to me couple times, telling me that they have negative feeling on my husband since he has not been having any improvement ( such as awake or response on hands or foots). The speech broke my heart. I have been doing researches online and learned that everyone has different pact to recover / awake. From this website and many other sites, I noticed some people went in coma more than a month or longer. I truly do not want to give up, what can I do.....please......

Will my husband get better chance if he can get treatment directly from specialist ? The reason I am asking because the hospital changes doctors every week in ICU and each of them has different professional, however, it does not sound like any of they had experience with meningitis. Even though they keep telling me they have keep in contacting with specialists within Canada to look for different treatment but I am just wondering, will my husband get better chance if the specialist could see him directly instead of discussion via the phone only.

I know, nobody can give me a 100% guarantee on what is going to happen. I just ... I truly do not want to give up. Am I too selfish? Dr said, when family do not want to give up, most because family member feel better but we are not considered patient's interest. No..No....I just think it is too early to go that.......God...help me

[clairelway]

Do not give up. I am very sorry to hear how I'll your husband is. I had bacterial meningitis some years ago now with pneumonia as well and was in intensive care for several days. I initially went in to a coma and then they put me on life support so my body could concentrate all its energy on fighting the meningitis. I remember them taking me off it and hearing them telling my husband I may not be able to speak as they didn't know what brain damage it had done but I could hear them and managed to squeeze their fingers. I tried with all my might. Everyone is different so you must do what you think is right. I guess there is no harm in contacting a specialist to ask what they think? I still do not have a response on 1 of my feet as that was damaged but I can walk well enough with it now. Good luck and I hope your husband responds soon. I had CT scans whilst in hospital too if that helps xx

[AmandaHsu in reply to clairelway]

Thank you for your sharing. He did couple CT scans, dr is going to do another MRI this coming Tuesday, hope they can find something.

[SHS7]

I agree, don’t give up. Go with your gut instinct. If that tells you to contact specialists then do it, do everything you can and speak to as many people as possible. Doctors are not always right, they are only human and under stressful jobs, I have personal experience of them getting it wrong with my daughter and my mother and pushing them in the right direction through self belief, gut instinct and determination. It’s not to say there will always be an answer or a miracle cure but at the end of the day if you can do absolutely everything you humanly can then that is all you can do and whatever the outcome for your husband may be, you will always know you did your very very best and searched every possible avenue you could. I hope there is a good outcome for your husband and good luck. Best wishes

[AmandaHsu in reply to SHS7]

Thank you so much. I will do my best

[euagelia]

Yes,dont give up. there is still many you can do. Ask for mri,ct scan,neurologists to evaluate him. What treatment is he on? doctors should know if its viral or bacterial. if its bacterial then he needs strong antibiotics. Send his lampure pancture results to as many drs you can and ask for their opinion. it is crucial to know if its bacterial.

[AmandaHsu in reply to euagelia]

Thank you so much. Dr is going to do another MRI this coming Tuesday and an neurologist will do an assessment to. I just know he got antibiotic on. All the tests for bacterial are negative, so dr doesn't think it could be bacterial but they still give the treatment just in case. The hospital has sent the lampure puncture to different specialist within Canada and nobody find anything.

[Westchester]

Hello, I have an experience with my mother in law, they thought she had bacterial meningitis and after 4 weeks of antibiotic treatment, they began to think she had TB meningitis. They did several MRI with contrast and it showed an enhancement on the bottom of brain and after the neirosurgeon did surgery to go inside and see if he can biopsy the dura they got a confirmed fungal meningitis. Actually she has aspergillus fumigatus in side her head. They began the correct treatment and now after 8 weeks of becoming incontinent, not walking or able sit and not speaking and very confused she is finally doing better. Of course she is in rehab learning how to walk and doing a lot of therapy, but she is alive. We don’t know what will be the final outcome as right now she needs a lot of help with everything but everyone is happy to still have her. She had fevers for 4 weeks until they finally found the correct treatment for the fungus. They did so many Lumbar Punctures and never did she get a positive fungal test, it was directly in her head!

[AmandaHsu in reply to Westchester]

Thank you for sharing, I am going to write down and ask the doctor. Yes, the case is so similar, cause they still can't find anything.

[sdjohnson231]

Don't give up. Push the doctors for a definitive answer. They should be able to find out, through a lumbar puncture, if it's bacterial meningitis or not. If it is bacterial, your husband should be on a very high dosage of antibiotics. An infectious disease specialist should be one of the doctors seeing him right now. Insist on it! A neurologist or a neurosurgeon should be seeing him right now. Insist on it! Do everything YOU can possibly do so that you have no regrets. Best wishes for a positive outcome for your husband. Please keep us informed. Susan

[AmandaHsu in reply to sdjohnson231]

they do have an infectious specialist but not seeing him everyday. The hospital will have a neurologist come to see him after Tuesday, after the new MRI. Hope we can find some answers. Thank you so much.

[sdjohnson231 in reply to AmandaHsu]

Ask if the infectious disease specialist will come to see him daily. I think it's very important. They can detect small changes, either good or bad, that we can't see. A daily visit should be part of the regular protocol. Susan

[Snoop23]

Never give up, im from Terrace BC and had viral meningitis is april but no where near as extreme as your husband. My saviour was Dr. Kenya, I know he splits his time between Nanaimo and Terrace. He may not be able to do anything else but he is a very smart man and everyone in the hospital here talks very highly of him. If its viral I have hope and so should you.

Also, VGH is full of very compassionate and helpfull Drs. I felt safe when I was flown there after my seizures.

[AmandaHsu in reply to Snoop23]

Not sure if you're talking about Dr Michael Kenyon. We are on Vancouver Island, and they changed doctors every week in ICU, so it makes me difficult to build the trust sometimes when they don't stay with the patient too long.

[Snoop23 in reply to AmandaHsu]

Yes Michael Kenyon, sorry

[Snoop23 in reply to Snoop23]

And I definitely understand how hard it is to deal with different doctors, they all do things differently. One sent me home early and i had seizures after 3 days at home, Dr Kenyon had wrote to keep me for 3 weeks but you cant tell em much.

[windhorsepixy]

I agree with sdjohnson231.

And keep talking to him - something is telling me it is important to keep talking to him no matter what.

[AmandaHsu in reply to windhorsepixy]

I did. Even though most people say " telling me something positive" but I actually tell him everything. Include what happened these days, my worried, my hope, my plan. The only bad thing is I cannot stop crying after I started talking to him.

[sdjohnson231 in reply to AmandaHsu]

Yes, talk to hm. Have music playing in the background. You don't know what is getting through to his brain. Assume he IS hearing you! Squeeze his hand. When he opens his eyes, tell him to blink them if he understands you. Keep talking!!! Susan

[Sascha54321]

Hi Amanda, I’m sorry to hear about your husband, and all I can say that there is not much you can do for him except for pray and hope. Not only that you are not selfish and do not give up. And these may only be words, however I have survived meningitis at only 3 weeks old and I will pray for your husbands recovery and that he will get the best help, that he can. Just stay strong, it’s ok if you need to cry, no one will judge you for that. Stay strong and know that there are people around you who support and love you and your husband.

I hope your husband gets the treatment he needs and that you will both survive this traumatic experience.

From Sascha

[DebDog]

I don't know exactly what to say but from my personal experience I have found the Infectious Disease Doctor to be my best help. Whatever you do--- do not lose hope or give up. The disease is horrible but not always deadly. You are in my thoughts and prayers.

[AmandaHsu]

Here are some update / information after my last post, hope it would be able to help some people. My husband was transferred to bigger hospital on Jan 10, 2018, and doctors / specialists are considering that my husband might have GBS (GUILLAIN-BARRÉ SYNDROME). So my husband received treatments, such as plasma exchange and intravenous immunoglobulin. He started moving both his arms / hands, talking. Now he is under the progress of weaning off from ventilator. His legs still has not started moving but doctors want me to wait patiently. So far, doctors still cannot 100% sure if it is GBS because all the new tests they have done are still negative. However, at least my husband is on the progress of recovering. What I learned from this experience is family has to do quite much homework, and fight for the patient if it is needed ( such as asking for other hospital or specialist ). Hope these little experience could help someone.