ICU Recovery

[Abbas1]

Hello,

I am 27 years old. I’ve had brain tumor surgery, because of a surgical complication i stayed in the icu for almost 4 weeks mechanically ventilated, and then 2 more weeks in the ward, its been almost two months since i left the hospital at first i could barely sit on the bed now i can walk independently but everything has changed and feels different as if it was a dream still, i have balance issues while walking will the ataxia ever go away? Will i ever be normal? Even driving is different i feel like everything is going fast.

I also have hair loss and my senses are not as the used to be hearing and smelling are weaker. My vision has changed one eye became farsighted and the other eye became nearsighted which makes me see blurry if i see with both eyes open. The neurosurgeon told me the surgery could affect the way your eyes move temporarily which i am experiencing as well. I also have persistent numbness in both hands and feet. Can anyone tell me if they experienced similar things? Will they ever go away?

[FamilyHistorian]

I think I can help you a little bit both from my own experience and from what I have heard from others who have spent time in ICU for what ever issue.

First of all there is no normal but what you describe is not unusual. You can see more about me in my profile but nearly 2 moths ventilated / sedated with trachy following heart surgery pneumonia & sepsis. I left hospital mid March’20

I lost a tremendous amount of weight both fat and muscle not forgetting there is a lot of muscle where you don’t expect. I too initially had problems on the edge of the bed not only balance and the strength to get up. I have balance issues which are getting better but I have to be careful. Driving is better but generally motor ability was poor but is improving.

I haven’t had any hair loss but I have heard others have. Smelling is ok and I do have a hearing problem but I think it’s getting better (tv lower volume).

The numbness is called neuropathy. Now my legs and feet are still numb and I get sharp pricks not pins & needles. They say for each day in hospital it can take 10 days for the nerves to recover. Well we will see. I have heard others complain of numbness in the hands.

I have memory issues and I’m not bothered any more by the hallucinations.

[Abbas1 in reply to FamilyHistorian]

Thanks for the reply kinda made me depressed what do you mean there is no normal? What i meant by normal in other words i want to live the way i used to or be able to do what i could before like driving walking without balance issues some people told me it takes time

[FamilyHistorian in reply to Abbas1]

Quite often the question is “is this normal” meaning is this the same for everyone. We are all different but there is a lot of commonality about how we feel. So you spoke about numbness and in general a lot of people get it and eventually it will go so back to normal.

I think many of us change in some way; my sense of humour has changed from wicked to evil, my brain doesn’t control my mouth so I can be inappropriate etc

I’m sorry if my comments were a bit of a downer but that is the risk when writing things and they get misinterpreted.

You might like to look at the ICUStepsChester website. They run exercise classes (all levels), yoga and drop ins all on Zoom. It really helps to talk to orhers

[Sepsur]

I don’t know if you are covered by your insurance if you are physically driving a car - might be worth checking - not sure if you are a passenger 😀

Hair loss is common but it usually reversed after a few months.

A lot of the meds affected by senses - I’m sure the treatment for brain tumour will have specific legacies but critical illness has some standard issues.

Neuropathy - nerve damage - pain/ pins & needles in extremities

Myopathy - joint pain & weakness

Delirium

fatigue

Muscle waste & weakness.

There are some really helpful pdfs on this link

icustepschester.org/informa...

[Abbas1 in reply to Sepsur]

Thank you i’ll check the link, so what i am experiencing right now is common and normal. Eventually i will be able to recover and live as i used to meaning driving working no ataxia any more and yeah i drove twice felt weird but i am a passenger most of the time

[Sepsur in reply to Abbas1]

Just check your insurance my friend, if you have an accident - you may not be covered 😱.

With all of our issues - we are never the same again.

I have an undesirable pleural effusion which means I can get out of breath quicker- does it stops me trying to do stuff - emphatically - NO

I do have more fatigue & muscle weakness - does it stop me from trying to live a full life - emphatically- NO

We as a support group ( the link I sent you) are determined to live life to the full.

[Copse77]

I saw my younger brother come out after months in ICU in an induced coma struggling to walk with a stick and before that he was a fit healthy runner and non smoker with a young family. Time is a good healer. I wish you a strong recovery. As others said hair loss and numbness and tingling are common side effects. Wishing you a strong recovery.

[tapir2020]

Hi - I ended up in ICU after brain surgery in 2017, aged a bit older than you. We all recover slightly differently, but your experiences don’t sound unfamiliar. It took me some time to feel recovered physically - the surgery and ICU both impacted on me in different ways. If it helps, I’m now back at work, (outside of the pandemic) I have a good social life and I’m generally very well. It might just take time for you to get there, so use your family / friends for support and keep your surgeon / consultant / GP updated on how you feel. There is more information available on icusteps.org . I wish you all the best for the future.