A stroke and BM

[Dawnie55]

Hi I'm new on here my name is Dawn I'm 55, I was diagnosed with pneumocooal meningitis and stroke on 16 May this year,i am now totally deaf I in right ear and partially deaf in left ear. I was in hospital for 4 weeks, it has totally changed my life at the moment my left side has been affected due to stroke. I am in a lot of pain at the moment due to sciatica down my legs and bottom of back, also really bad pain and stiffness in neck.i do get very down some days because I can't do what I'm used to doing, I am a very outgoing person who loves mixing with people but due to deafness and pain I'm really struggling to mix . I am hoping things will get better as time goes on and I try to keep myself thinking positive.My consultant says that it will take time and that I may never have a complete recovery.I am just beginning a lot of hospital appointments, including a hearing test which has been arranged for me by my GP, the one arranged by the hospital is for August 27,three months waiting for a hearing test is not acceptable , my consultant was not pleased when I saw him on Thursday .The deafness , I think is a factor in my lack of balance and giddiness and hopefully after the hearing test a decent hearing aid will help. Even having a hearing aid will improve my well being. I will fight to get better, I know that other people have suffered worse symptoms but don't give up.

[Schmooschmoo]

Hi Dawnie55! I'm so pleased to read your story and thanks for joining here. You will find a lot of Viral meningitis stories, not so many BM ones though. Can I ask the correlation between stroke and Phenumoccocal meningitis? Did this occur together at the same time? I hope you don't mind me asking such a personal question? I agree that the hospital should have given you a hearing test before you were discharged and definately should have scheduled follow up hearing test appointments for you. I'm sorry to hear that the medical field have been reactive and not proactive for you, you should not have to chase them for this yourself. I'm sure you will get better, as you have probably been told, you suffered a serious illness and recovery is slow. All the best, thanks for reaching out, you will receive some helpful replies.

[Dawnie55 in reply to Schmooschmoo]

Hi schmooschmoo

I was diagnosed about the meningitis first then roughly a week later the stroke, I have also been diagnosed with a brain abbess, I'm waiting for an appointment for another scan to see if all gone.im hoping once had hearing test I will feel better about really bad dizziness I have, it makes me feel like I'm on a boat swaying all the time it's awful. I'm also getting a really stiff neck and bad pains on lower back and legs been told probably sciatica waiting for MRI scan. Thankyou for listening it's just so many different things at moment,driving me mad

Thankyou again

[Schmooschmoo in reply to Dawnie55]

Wow, I just read this was the third time you have been diagnosed with BM! You are a brave person. My mum had been diagnosed with Phemuniccocal meningitis in late stage (she had been to the GP at 9.30pm, dr dismissed her illness at 72 years if age as just an ear infection and sent her home). By 9am next morning she was paralysed, could not move at all or talk. After 24 hrs in hospital she was not able to talk but was moving her arms, following dr instruction but because of her confusion and general movement in hospital bed, they put her in induced coma. Within 48 hrs of hospital admission she suffered an aneurism (SH) which the dr's "missed" (in their words) I take it because she was under induced coma. Aneurism is the same as stroke is it? I find it very odd that mums hospital did not give her a CT scan given she had BM. They relied on lumber puncher only. Did you have a CT scan before your stroke? Is this something the hospital would have preempt for you?

[SunflowerGirl]

Hi Dawn55,

I'm sorry to hear your tough story about having pneumococcal meningitis and the slowness in follow up treatment.

I just wanted to let you know my experience with pneumococcal meningitis. I had it twice, when I was 45 and 48. After the first case I lost about 50% of my hearing in my left ear, as well as acquiring very severe tinnitus. I also had damage to my vestibular organs which caused balance difficulties, similar to what you are describing. I was also very outgoing before the illness. The second time was less severe as I knew what was happening and was able to obtain treatment quickly.

I did not have a stroke, so your symptoms and recovery may be different to mine. The surprising thing for my ENT and audiologist, is that the my hearing in my left ear slowly recovered and is now about 90%. This took a long time, well over a year. 50% hearing deficit was seen at 3 and 6 months after the illness. The balance problem also slowly improved. The main thing to help me with the balance difficulties was to use my eyes to focus on points and not rely on my "inner balance'.

I am also back to my normal outgoing self! There was fatigue for a good few years, but this also improved and passed.

The only thing that did not improve was the tinnitus. But I have adapted to this.

I wish you lots of patience for your recovery. It can and will happen. For me, keeping positive, exercise, healthy eating and learning new things was helpful. All the best!

[Dawnie55 in reply to SunflowerGirl]

Thankyou for sunflower girl, you saying had it twice, I'm on my third time, once when was about 18mths another at 10 years and now 55yrs. I'm hoping as get less tired and less dizzy and shaky will be able to do more. I used to walk into work daily so I'm missing that, can't walk far at the moment have to have someone with me, I tend to veer off to the side a lot even when using walking crutch. I'm hoping after hearing your story that eventually I will be able to do more I used to love taking dog for a walk, it's early days yet and still getting over the shock of it at the moment I think, I was in work one day then next thing I'm in hospital being told I've been in an induced coma and that I'm very poorly. Thankyou again for your reply, have to keep thinking positive