Most positive today after BM and mastoiditis

[Fiona-bennet]

Today I had a follow up appointment with a surgeon from ENT about my constant ear pain. He said my scans were clear and my hearing was good just a bit weaker on the affected side but it was all looking good. When he said that to me I went into complete meltdown because I couldn’t understand how he dared tell me I was okay when I am in so much pain. His response completely changed my outlook for what will be the rest of my life.

He said “I completely understand that you would be in pain and I have nothing to compare your pain to. It is exactly 3 years ago today that you were 2 weeks into treatment for bacterial meningitis and you are 2 weeks ago from being exactly 3 years ago that you were being treated for mastoiditis. That 3 years is long enough to say that medically there is no possible way for any of your current pain and issues to go heal any further than they have. You have spent this 3 years devoting all your time and efforts into getting rid of your pain and solving everything so that your body goes back to the way it was before but your body, your brain, your ear, hearing, sight, was all put through the biggest test and through 2 life threatening infections. If you keep pushing yourself like this you are going to spiral into drug addiction and severe depression trying to get rid of pain and problems that cannot get better from here. You need to stop trying to treat the pain and start working on learning strategies to cope with how your body functions and the lack of functions and starting working on managing the pain because I am telling you it probably won’t go away. But you can get better at dealing with it. I can help you to take preventative measures to avoid any sort of infection from spreading up into your brain because the first infection created that pathway because you will forever be more susceptible to dangerous infections and a cold to me is going to be worse to you, but my cold may be worse than the average persons but I can help you to work on ways to prevent getting a cold. You have spent the last 3 years of your life on hold until you get better but you need to start living your life and protecting yourself from getting worse.”

I know many people may read what he said and say doctors shouldn’t tell you to deal with pain and tell you they can’t do anything but if you like me have spent time being told you’re okay even though you aren’t and being told it will go away and spent time waiting for it to all heal and go back to what was, then having him tell me this is the best thing for me because I don’t have pressure on myself to expect to go back to my old normal because I know this is my new normal.

So here’s to accepting what is and having people that are willing to help you to cope with that

[Lesleyandjoe]

I do feel for you with your pain situation. Maybe you will find an alternative therapy like acupuncture that helps. My son had BM at 9 months, he is now 14 and is always ill with one thing or another. It didn't occur to me that he might be susceptible to more infections than other people now. Like you it was a massive thing he went through. I guess I tried to put it behind me but perhaps it has changed his life forever too. He suffers from a headache most days...

[Fiona-bennet in reply to Lesleyandjoe]

I have started receiving Botox injections for my headaches. While it hasn’t gotten rid of it it has definitely helped settle down the pain of them and has gotten rid of majority of my flare ups. I didn’t think that surviving it was the reason why my immune system is so low but after speaking with that doctor he has made it such an easy thing for me to understand/wrap my head around. He said anytime someone has a sniffle or a cold constantly wash your hands and try to keep as much distance as possible and ask them to wash their hands frequently when around you. He said to cover my mouth if people nearby are coughing to prevent it from being passed on. He said what is a sniffle or a head cold for the majority can be something so much worse for us with our weakened immune systems and now that we have had meningitis we are more likely to get it again so take plenty of precautions with your son and good luck!

[Chip32]

I myself had bacterial meningitis in April this year, and I am trying to cope with the headaches, but I understand it will never get better something I have to live it’s hard. But if it wasn’t for my wife I would be not telling you this now. Yes I am lucky to be alive, someone was looking down on me. good luck and take care 🙏

[Fiona-bennet in reply to Chip32]

Thank you, you too

[Princess123456]

I love this doctor and I don’t know him!!! Why aren’t all doctors honest to their patients. It’s good to hear from your doctor just what to expect but I know someone that can heal anything. I don’t know if you believe in God but if you do have faith it will help you go through anything you have to go through🙏🏾🙏🏾 I will keep you in prayer!!

[Fiona-bennet in reply to Princess123456]

It was the first time I had met him and I already think he’s great! Thank you for your kindness 🙏

[EriktheRed]

It's been almost two years now since I had BM and my slight stroke......... The daily headaches have came back again, and the doctor is right... You have to change everything to be accustomed to the new you or you will never get better..... Hang in there

[DebDog]

Hi Fellow BM survivor. That’s what the doctors tell me. Just as your dr expressed in his conversation- - those of us who have had BM will always be facing challenges. The pain in my ears and balance issues were helped when my ENT experimented and put tubes in my ears. I did get some relief but not sure how much until the tubes fell out after a year. I definitely saw an increase in my pain & we put new ones in again. I tried the Botox injections for headaches and they didn’t help. In fact I had some kind of reaction and it affected my vision. After another year of neurological opthamalogists I am doing better. The one thing that I learned this past 4 years is we respond to the usual treatments differently. Do not get discouraged and think you will never get better. Your physical health & emotional health may not be as it once was but you can become the new healthy and happy! We

[Fiona-bennet in reply to DebDog]

I too have ear pain but it’s only on one side. My BM retreated into the mastoid bone behind my ear and after only 3 days of being off antibiotics I was back in hospital closer to death than the first time. I have the tube in my right ear too. Have been told it will be a constant operation I will need to have to help all fluid draining out of my brain

Good luck with everything

[menchild]

I got BM a month ago and have had craniosacral massage with huge relief from headaches and have not had to take many painkillers after only 2 sessions. I will be having 3rd session tomorrow. My blocked ear is almost gone. I have noticed that any kind stress triggers headaches and so need to lead a very quiet life at moment.

[Quiltergirl]

That was amazing! Thank you for sharing this. I saved your post. What a great physician, good explanation. More docs need to understand and explain this to us. I figured out on my own, and with help from all of you, that this my "new normal " and I need to accept it.

I am now almost 10 months from my bacterial meningitis diagnosis. I had a "mild" bladder infection last week. I felt horrible, aching, headache, photosensitivity and tremors. I hadn't had the tremors for 9 months. I guess I have been correct in fastidiously avoiding illnesses. Many blessings to you all.

[Fiona-bennet in reply to Quiltergirl]

I am so glad to know that sharing this has helped so many scared, clueless and frightened survivors like I was

Hope all is well