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Living with brain injury: question and answer session

Brain questionsThis webchat was held live at 11am on Tuesday 12th May. Angela, our Helpline Manager, answered your questions on the topic of Living with brain injury...

Your questions on living with brain injury

dubgirl: Arachnoid Cyst

my 10 yr old son has a large arachnoid cyst on his left temporal lobe, I have read many things about it and some people suggest draining or inserting shunt or waiting till it causes damage when it will then be irreversible, can you tell me what you think is the best way to go as I want to do whats best for my son but even doctors tell me different things, some say he cant play contact sports such as rugby, others say it would be ok to play.

Angela Helpline Nurse: 

Hello, I can understand your confusion. The doctor’s will always give their judgment on their own clinical experiences, so hence the differences of opinion.
I can only suggest you be guided by the symptoms your son is experiencing and if they increase in severity to the point where his education and social life is being disrupted, this may be the time to see the neurosurgeon again for another assessment and surgery.
In regards to the contact sports I would err on the side of caution and avoid contact sports, or at least until he has had another scan and/or consultation.

chrissie: Offer of help 

I can help with questions about brain injury as I have suffered one and have also worked in brain injury rehab.

Angela Helpline Nurse: 

Hello Chrissie,
Thank you for your message. You have a unique view of brain injury as you have seen it from both sides. Any input to the forum is very welcome.

Moortosea: How long do the coils last?

Hi, I had a brain Haomorrage in 2001 and it was coiled under the Isat trial. I under went angiograms for appx 5 years after the original procedure, it was found not to have sealed fully after a year on one of the follow ups and another coil was inserted. How long are the coils expected to last and how long at presant is the longest survival rate for this procedure.the reason I ask is I have started getting regular headaches they are bearable at the moment and they could be due to a number of other ongoing health issues that I have, Problems with alot of metal work that was inserted alongside my mid to lower spine to straighten and support the spine ( 2 screws have since come loose causing me alot of pain and another 8 hr op needed ) I also have osteoarthritus in my neck and most other joints. plus Left and right hip also been MoM resurfacing ( still painful ).so the headaches could becaused my any number of these problems although not knowing for certain does cause me some worry. as I also get at times a feeling of fatigue/pressure in my chest which is what happened when I had the Brain Haomorrage.

Angela Helpline Nurse: 

Glad to read that you are doing well.
When the coils are inserted into the aneurysm, the doctor fills the aneurysm with various lengths of platinum coils which form a ball to stop blood entering the aneurysm. Over months these coils settle into the bulge of the aneurysm and may leave a small space, this is why you had another coil inserted a year later.
The ISAT trial closed some years ago and part of this trial was the follow up over 5 years. Nowadays people are followed up over various lengths of time, depending on the size, type and position of the aneurysm. Some people have an angiogram at six months and then no further follow up, others are seen over several years.

joyce: Will my nerve problems ever get better?

i suffered a bleed on the brain resulting in me having to have 7 coils fitted through my groin. i havent recovered completly i have very severe nerve damage down my left side, this will be my sixth year since my illness. could you please tell me whether this will ever get any better, and what is the long term prognoist. thank you.

Angela Helpline Nurse: 

Hello Joyce,
Now that you have had the aneurysm treated with coils the long term prognosis is very good.
The nerve problems that you have down the left side of your body are due to the bleed you had 6yrs ago and it is difficult to say how much more recovery you will experience. There are several types of medication which can block nerve pain and I wondered if you have tried any of these. Also some people find alternative therapies helpful, such as acupuncture or massage. The most important thing you can do to aid recovery is to keep as active as you possibly can both physically and mentally. I am sure you have been told many times to drink 6-8 mugs or glasses of fluid a day and to eat a balanced diet, so that your brain is getting the nutrition it needs to help it heal

Guest: Chiari research

Is there any research being done for Chiari malformation?

Angela Helpline Nurse: 

There is research being carried out into Chiari malformation. Researchers are looking at the flow of cerebral spinal fluid around the brain and how it is obstructed when a Chiari is formed. It is only through advances in MRI techniques that doctors have been able to understand this important part of the Chiari malformation and how syrinx form.
Also doctors are looking at hereditary factors of Chiari through DNA testing and seeing in the future whether it will be possible to alter the gene that causes Chiari.


Guest: Nerve cell regeneration

Is the nerve cell regeneration possible:?. Whether the nerve cell injury recovery or regeneration happened anywhere at the world?

Angela Helpline Nurse: 

In regards to your question, there are many different types of medical research currently taking place and many of them are looking into and trying to understand the brain and how brain cells function. This could be due to a disease or to an injury and researchers are looking at various ways of treating people i.e. in Parkinson’s disease they tried implanting cells into the brain in order to see if that section of the brain will regenerate.
There are many researchers working to understand regeneration of nerve cells and this area of medicine is still in its infancy. Watch this space.

Guest: Glioma symptoms 

How long do you think a Glomo (type 4) brain tumour would have been there before any symptoms were known.

Angela Helpline Nurse: 

The problem with glioma type brain tumours, is that they can often start as a grade one and as they grow and change the grade may increase to a three and four, or just start as a grade four. So in answer to your question it is difficult to say how long it has been there, as it is only when it gets to a certain size will the person experience problems. The grading of the glioma is defined by the cells that have been seen under the microscope and how quickly they are growing.

alanhillx: Vertigo and other problems

For six years I have been getting the occasional vertigo, but for the last 8 weeks I have been getting it everyday. When I have it I can only lay down wherever I am for at least two hours and the next day I feel drained and weak, it sometimes affects my vision with multiple lens effects and when dark I see flashes of laser like light at the edge of my vision.. I have also been feeling faint everyday, but not at the same time as the vertigo. My legs feel tight around the veins everyday and I feel as if something is taught in them and I want to put them up when sitting down. There are no big swellings or redness. However I get fluttering in the veins and you can see them pulsing in some areas. A friend asked two weeks ago, what is wrong with your legs? I looked down and saw a lump on each calf about the size of half a ping pong ball. I am worried about a blood clot is stopping a proper flow of blood to my brain due to arteries being blocked. I am 66 otherwise healthy trim, non-smoker and only drink occasionally. At the moment I am living in Thailand with my wife, but shall be back in England in June. The doctors here don't know. They gave me some Betahistine and Dimenhydrinate I can't take them together because it makes me aware of a stiffness in my chest around my heart, so I only take one of them 3 times a day. It does suppress the complete vertigo somewhat, but I still feel faint everyday. Can you help with any suggestions please? Thank you Alan.

Angela Helpline Nurse: 

Hello Alan,
There are several points you have raised in your message. I wondered if the doctor in Thailand, has checked your heart and done blood tests to look at your cholesterol, blood sugar and blood clotting. Have the doctors seen your legs and ‘ping pong ball’ swellings, as this does not sound as if it is a neurological problem. The dizziness problems can be linked to blood flow around the inner ear, raised blood pressure and some vitamin deficiencies.
I can only suggest having further investigations prior to flying back to the UK in June.

David: Mood swings and tearfulness after subarachnoid haemorrhage and hydrocephalus

As a recovering 61 years young male from an SAH with Hydrocephalus, I still get low mood swings and tearfulness, even though I was treated in 2007. My GP and the Hospital specialists say that this is ""normal"" but is it? I do not want to take any drugs to help control my issues[ I have had enough pills in the last 5 years to last a life time]. Is there any approach to my problems other than medicinal please?

Angela Helpline Nurse: 

Hello David,
Depending on where the bleed occurred in the brain and the severity of the bleed, very much determines what problems people may experience. These can be physical or emotional and many people have a combination of both.
It is a life changing event and it does take time for people to adapt to the changes forced upon them. It is common for people to experience changes in their mood and some people find attending a support group or seeking specialist counselling.
In the past few years some research has found that following a brain injury people can experience changes in their hormone levels. I don't know if you have had blood hormone levels taken but you could discuss this with your GP.

David1961: Memory problems after a head injury

I had a severe motorbike accident in 1979,the force of the impact,pushed my spine into my skull.I was told that it has scarred my temporal lobes.I then had meningitis,and I had a ventricular valve inserted.I did not know any of this until I had been released from hospital for about two weeks.I told my mother I dreamt I had a motorbike accident,then she proceeded to tell me I had,and what effect it on me.I am a bit concerned as I have memory problems due to the scarring,and the Grand Mal Epilepsy it has left me with.How will I realise that my memory is getting worse,and it is NOT the early signs of Alzheimers?

Angela Helpline Nurse: 

Hello Dave,
Thanks for your message. You certainly had a major motorbike accident. The problems you currently are experiencing may not lead to a progressive brain condition in later life, but I can’t say that you won’t get one the same as any of us.

Guest: Should I get check-ups on my unruptured aneurysms?

I was diagnosed with 2 brain aneurysms a few years ago but were advised that an operation would be too dangerous because of my health problems including heart disease and lupus.The last time I had a scan was 3 years ago when I developed a severe headache and had a subdural haematoma so I am unsure if the aneurysms have got any bigger.Should I be getting regular check-ups and if so is there any new treatment available which may be suitable for me?

Angela Helpline Nurse: 

The treatments currently available for treating brain aneurysms are clipping of the aneurysm through surgery and coiling or stenting of the aneurysms. They don’t generally continue to scan people on a regular basis unless they feel they can treat the aneurysm. You do have the added complications of your other health conditions which the doctors have taken into consideration and hence they have said it would be too dangerous.

serenebutterfly: Brain stem lesion and spastic paraparesis

I live with a brain stem lesion and spastic paraparesis, and recently my symtoms have been worsening and had experiences of vision loss for a few minutes afteer a spell of vertigo. Been referred back to see a neurologist but I have at least a 26 week wait. Is there anything I can be doing in the meantime to be helping myself as it's been getting me down

Angela Helpline Nurse: 

Sorry to hear your symptoms have recently got worse. Are you currently under the care of a neurologist, if you have a name I would suggest ringing the consultant’s secretary to tell them of your new symptoms. I would also encourage you to tell your GP about any changes to your condition, particularly your visual problems.
Are you managing to rest during the day and sleep at night, if not this can have an impact on your symptoms.

Debra: Identity bracelet for a coiled aneurysm? 

If you are living with a coiled cerebral aneurysm, should you be wearing some sort of identity bracelet with some sort of ICE instructions, and if so, what should they be??

Angela Helpline Nurse: 

Hello Debra,
We are not aware that there is any necessity for people who have had coiling to carry an emergency identity bracelet, as the aneurysm has been treated. So as you have been treated you are safe.

Guest: Cause of SAH not known

Hello, I had a SAH last year. The cause of it was unknown and I can't find any information about this type of haemorrhage. Can you help?

Angela Helpline Nurse: 

When we wrote the SAH booklet we had problems finding information on this type of bleed, known as a nonaneurysmal subarachnoid haemorrhage or periencephalic haemorrhage. Both types of bleeds have been found to cause less long term physical effects, but can still have an impact on how people feel emotionally.

Allison: Stabbing sensations in my brain

Hi I had a subarraicnoid haemorage that was coiled in September 2012 , I get strange stabbing sensations in my brain usually in the evening. Which don't last long but worry me none the less , is this normal ? I did tell the doctor but they didn't really comment or give me an explanation .

Angela Helpline Nurse: 

I was pleased to read you have been checked out by the doctor.
Many people tell us that they experience ‘odd’ sensations in their heads following a SAH, particularly when they are tired and this could be why you get the stabbing sensation in the evening. Are you able to rest for a short while during the day and I suspect you are now doing more activities in your day to day life , that might also be contributing to the pain.

Guest: Complementary therapies for people with brain injury

How do you feel complementary therapies would benefit people with brain injury? Do you know of any complementary therapy services available in the community for those who have acquired brain injury? How about an integrated complementary healthcare therapy system which include those who suffer brain injury?

Angela Helpline Nurse: 

Complementary therapies do have a role in aiding people with brain injuries, particularly with the person’s overall wellbeing, but what might work for one person may not be effective for another. It is very individual as to which therapies may be helpful and as far as we are aware there are limited alternative therapies available on the NHS, acupuncture in pain clinics being an example.

Only last year an online directory outlining brain injury services available in England was launched (Brain Nav www.brainnav.infoso I think we are a long way from an integrated health care therapy system directory.

Janice: ADEM and MS

Can you highlight the symptoms that would differentiate an ADEM diagnosis from an MS diagnosis at the outset of illness? Thanks

Angela Helpline Nurse:

Hello Janice,

Acute disseminating encephalomyelitis or ADEM for short is often linked to viral illness, which generally manifests itself in multiple problems such as fever, neck stiffness, drowsiness and (in some people) coma. Generally in MS one symptom will present itself at a time and not multiple symptoms as in ADEM.

Following an MRI, the differences between the two conditions will be identified as the findings on the scan will be different for MS and ADEM.

Vincent: Vascular disease / dementia

Can you tell me what to expect and treatment for vascular disease / dementia also sensory motor neuropathy.

Angela Helpline Nurse:

Hello Vincent,

As with most neurological conditions, medications are the main type of treatment, to try and prevent the condition progressing or to slow the condition down, treating the symptoms such as pain, spasms and headaches. <

For vascular disease anywhere in the body the doctor will most probably prescribe a blood thinning drug, to aid the blood to flow more easily through the brain and body; also check your blood cholesterol levels (which makes the blood sticky) and if elevated prescribe a drug to lower the cholesterol. If it is elevated you could help by drinking less alcohol, stop or cut down on smoking and see if you are able to help lower it through your diet.

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Read the chat as it happened