Looking for Support - Subdural Hematoma

[Lukew125]

Good evening everyone.

My name is Luke, I’m 22 years old and I am normally fit and well.

3 weeks ago I was diagnosed with a Bilateral Subdural Hematoma and had it treated with 2 Drains / Burr Holes and a Crainiotomy. According to the surgeon this was as bad as a 90mph Car Crash.

This has developed and stopped on its own. Everyone is baffled.

Luckily, I am still alive and have only suffered a partial sight loss in my right eye and about a week of my memory around the time of the surgery.

When I awoke, I had severe paranoia that everyone was trying to kill me. I was calling my friends and the police to come and save me.

Unfortunately, I was re-admitted a few days ago due to a headache and a CT scan showing a collection on my brain. After 48 Hours, they said it should resolve itself and sent me home.

I am now experiencing numbness in my left arm and I was unable to open my hand for about 5 minutes.

After such a traumatic experience, how are people coping psyically and mentally? I am mentally tired from everything and I feel like I am about to have a breakdown. I have had no one tell me what to expect during my recovery.

Can anyone please help ease my mind as to what you experienced or how you got through your recovery period? I am just so anxious all the time and it would be great to hear from anyone who has suffered from similar problems?

Thank you.

[cat3]

Luke, I'm puzzled as to how you developed a Subdural Haematoma with no trauma to the head. Had you had a fall, or banged your head and not remembered ?

Were you treated at a specialist neurosurgery hospital ? If so, there should be a highly trained specialist nurse based there who patients can contact anytime for advice and information on their particular condition/procedure.

But any brain injury, even minor, can cause lasting after-effects such as headaches, fatigue, confusion, forgetfulness, etc.............. the fatigue (often severe) being the commonest symptom. It can be distressing at first as you can sense a loss of self, but it's not a breakdown ; you're most likely suffering from shock, which is an extremely natural reaction.

We can't rationalise with a damaged brain, and making any sense of your situation in a period of 3 weeks is a big ask. After a bleed on the brain I was 'out of it' for almost a month and only really grasped the situation by the 3 month point.

So find out next week whether there's a specialist nurse you can talk to (in person or by phone) who can answer any/all your concerns.

Alternatively, phone the Headway helpline on monday (0808 800 2244 - office hours/free calls) where you'll hear a friendly voice and you can get advice and free printed information.

And keep talking here. Others, will identify and can hopefully offer extra reassurance.

See you again soon Luke................. Cat x

[Lukew125 in reply to cat3]

Hi Cat,

Thank you for your reply.

I was treated at Queens Medical Centre in Nottingham, UK.

Unfortunately, the aftercare is not great and I have been given very little information

After speaking with the Surgeon, consultants and doctors, they are baffled by my case and have never seen anything like it before; especially due to my age. I was misdiagnosed with headaches/Migranes about 6 times.

I started with Headaches just before Christmas that we’re extremely severe. Then on the 29th January, I wouldn’t wake up. I was taken to Hospital and after my family begged for a Scan, they did a CT scan and seen the issues.

The doctors have asked for my permission to put the case in the Medical Journal as it hasn’t been seen before, especially how bad it was... My family were told I had a 30% chance of surviving my recovery which is scary...

I will Try and contact a nurse or Headway on Monday to just try and ease my mind a little bit.

Let’s hope this is a nice and easy recovery and I can calm down a little bit and stop panicking x

[cat3 in reply to Lukew125]

Just a post-script Luke...........not to deter you from striving for recovery, but don't expect too much too soon. The brain, being delicate and complex, can't repair itself as other organs can, so be prepared for some issues to hang around for months/years to come.

Many of us have been frustrated by the impairment of certain abilities, and I for one have wasted too much time and energy on mourning who I used to be before the haemorrhage. Once I accepted the changes and found ways to manage them, they were far less daunting.

You're young, which is a great asset for recovery, but just be aware that your brain is still healing so lots of sleep and rest and daily hydration is essential. Take it easy and stay within the boundaries set by your brain's demands for a while yet ! xx

[rubyking27]

Hey Luke,

Reading your story sounds pretty mad!!! You’ve been through the works! I was weirdly pleasantly surprised at your age-(please don’t take that the wrong way- as I am 25 )and went through a completely different thing to you but a brain injury of anything is quite life changing so I’d love to hear more!

But firstly I want to quickly say- please don’t panic, write down any of your weird illusions, get them out of your head! You probably have a fantastic family and friends around you! And people are there to help/care if needed- not hurt/kill you! (If this isn’t correct- are these people you want to be around)

And also, you maybe want to go see a neurologist about your hand closing thing, they should know more about it!

I’m currently back in India- a place I actually had my accident 2 years ago! But feel very calm and pleasantly zen!

If you wanted to add me on fb please ask’ !!

Ruby x

[Lukew125 in reply to rubyking27]

Hi Ruby,

Thank you for your comments I am noting all the headaches and weird sensations... hopefully when I go back on 7th March for an Angiogram, they can answer some of my questions and put my mind at ease with some of these symptoms

It’s Glad to hear you have recovered well and are getting there

My name on Facebook is Lewis Luke.

Thank you,

Luke

[Hidden]

My husband had burr hole surgery nearly 5 weeks ago. In the first couple of weeks he also experienced his right hand tightening up. Because of this and a couple of other symptoms like blurred vision his HATS nurse- headway nurse spoke to his consultant and he requested a new CT scan to check for infection. Luckily all was well and it has now resolved. If you are concerned over the weekend ring the ward you where on. They should have a HATS nurse at Queens.

Although my hubby is alot older than you we don't know what caused his bleeds either.

[kokoloi2080]

From one person to another...I too was diagnosed with 2 small Subdural Hematomas in June 2018 to my surprised when I went in for a CT Scan as my request and was diligent with my doctor. My doctor kept saying is was sinuses and I told him NO it's this is not normal I know my body. Anyway, the two were very small subdural hematomas and after the CT Scan I was sent to ER and had to stay overnight for observation. The bleeding stopped was sent home. Yes, I was scared, could not eat and kept thinking it was going to return and I would died. No one who has not gone through it doesn't understand the feeling of the fear. I had another appointment with the neurosurgeon and again they found slight bleeding of one but he let me come home and told me no exercise, no lifting, just walking. After the first bleeding stopped, I did not listen to my doctor and returned to the gym like an idiot and the bleeding started again. Please listen to your doctor,, do not exercise just rest because that is what your body needs. Your whole life has/will changed and you must accept it. It's hard, I know... Most importantly if it was dangerous he would not let me go home. Remember, you whole life has changed and you have to accept it. I am 67 and over exercise at the gym with 2 straight hours (Cycle Spring/Body Combat/Body Pump) for 5 straight days to get in shape. Now just walk. It's very hard, I know, just take one day at a time, yes you whole life has change, and it's hard I am not going to lie...going to a physiatrist helps to express your fears. I stop eating because I was so worried and felt alone. I have wonderful friends, neighbors and that helps. Remember, you are not alone...from another Subdural Hematoma sufferer....it's hard I know but I take one day at a time. hope this helps you. You have to rest your body.....and it's hard if you are active. My whole life has changed..can't excerise, just walk, no traveling..it's a bummer. Bottom line I did not hit my head and they were shock and so was I. That is usually the cause. Yes, very day I have fear, but I must live life as it is.

[sethbovey]

Hi everyone. I have the same confusion. I am a 67 year old woman who had a fall walkng home one night. I hit my head but also injured other parts of my body. I felt OK so didnt go to my doctor until my headache wouldnt go away. It wasnt a bad headache. She sent me up for a scan which showed an old but small bleed. I was monitored until June when the bleed grew a bit so I ended up having burr hole surgery in July.

Everything was successful but a small bit of blood remains - apparently that is normal.

Whilst my care and treatment in hospital was first class, I was discharged with very little, or conflicting information.

Now I find I am unsure about travel, work, drinking etc

I have been told that if I have any further symptoms to get back to ED smartly.

As I had very few symptoms I dont find that very helpful. Also there was a raft of doctors involved in my operation but my post op check up was done by someone who wasnt involved.

I live in New Zealand, but am finding this site very helpful for me and my ensuing anxiety. Good luck to you all.