Posts Tagged ‘neurology’

Almost forgot to post this despite saying I would, not long ago I was contacted by the Royal College of Art regarding brain injury Telerehabilitation project. Two students wanted to interview me regarding my brain tumour experience as they saw my short story, I was curious as my situation is a lot different from others and wasn’t sure what I could contribute.

I gave them my website as it has my full story but they wanted to interview me face to face.

It was arranged and two nice young ladies came for an informal interview that I hope helped them.

If you have been contacted, it might be worth giving them the time, I remember being a student and having to do something similar and it is hard if people won’t take part.

The interview is about your experience both physically and emotionally with a hope of designing or re-designing a service, this is not just about brain tumours but anything that can cause brain injury and how it affects you and your family.

If you haven’t been contacted and fancy taking part I am sure sure they won’t mind if it is not too late..

Vanessa email: vasiliki.karaoglou@network.rca.ac.uk

or

Ji Young Lee email: jiyoung.lee@network.rca.ac.uk

 

All best

Derran

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Still here kicking around and plodding on with life, nothing really to report other than I have my scan results on the 20th. Finally my mind will be at rest since 15th Dec, thats right, I had my scan on 15th Dec and finally get my results next week!! Unfortunately this is the state the NHS has got in to.

Forgot to post happy valentines and a post a saw today reminded me, it said…

” To my wife, I love as much today as I did yesterday but it is a lot cheaper lol”

So I hope everyone who was able had a happy valentines day, to all those who have lost loved ones or currently battling this horrible fight, I wish you the best for the future.

All the best,

Derran

There are different types of Astrocytoma but I have not exactly been told what mine is.

What is it?

Astrocytomas are tumours that arise from astrocytes, astrocytes are star shaped cells that make up the “glue-like” or supportive tissue of the brain and spinal cord. While they are described as star shaped that is a basic description, if you look at images of them they basically have a central point followed by star shaped legs and then roots. It appears as though the tumours sit in the center of the astrocyte but I’m sure your consultant will be able to tell you more.

So, what types are there?

Below are descriptions of the various grades of these tumors:

  • Pilocytic Astrocytoma (also called Juvenile Pilocytic Astrocytoma)—These are grade I astrocytomas typically stay in the area where they started and do not spread. They are considered the “most benign” (noncancerous) of all the astrocytomas. Two other, less well known grade I astrocytomas are cerebellar astrocytoma and desmoplastic infantile astrocytoma. Pilocytic Astrocytomas generally form sacs of fluid (cysts), or may be enclosed within a cyst. Although they are usually slow-growing, these tumours can become very large.
  • Diffuse Astrocytoma (also called Low-Grade or Astrocytoma Grade II) Types: Fibrillary, Gemistocytic, Protoplasmic Astrocytoma—These grade II astrocytomas tend to invade surrounding tissue and grow at a relatively slow pace. Diffuse Astrocytomas tend to contain microcysts and mucous-like fluid. They are grouped by the appearance and behavior of the cells for which they are named.
  • Anaplastic Astrocytoma—An anaplastic astrocytoma is a grade III tumour. These rare tumours require more aggressive treatment than benign pilocytic astrocytoma. Anaplastic Astrocytomas tend to have tentacle-like projections that grow into surrounding tissue, making them difficult to completely remove during surgery.
  • Astrocytoma Grade IV (also called Glioblastoma, previously named “Glioblastoma Multiforme,” “Grade IV Glioblastoma,” and “GBM”)— There are two types of astrocytoma grade IV—primary, or de novo, and secondary. Primary tumours are very aggressive and the most common form of astrocytoma grade IV. The secondary tumours are those which originate as a lower-grade tumour and evolve into a grade IV tumour. Astrocytoma Grade IV (glioblastoma) may contain cystic material, calcium deposits, blood vessels, and/or a mixed grade of cells.
  • Subependymal Giant Cell Astrocytoma—Subependymal giant cell astrocytomas are ventricular tumours associated with tuberous sclerosis.

Location 

Astrocytomas can appear in various parts of the brain and nervous system, including the cerebellum, the cerebrum, the central areas of the brain, the brainstem, and the spinal cord.

Symptoms

Headaches, seizures, memory loss, and changes in behavior are the most common early symptoms of astrocytoma. Other symptoms may occur depending on the size and location of the tumour. With my Astromcytoma being grade 2 I guess this is why I had plenty of headaches, mine was only found after having a major seizure that came on all of a sudden with no other seizures previously. My memory has always been bad so I can’t comment on that but maybe I’ve had it all my life as I’ve never had brain scans.

Cause

Like many tumour types, the exact cause of astrocytoma is not known.

Treatment

Treatment options depend on the type, size, and location of the tumour, if and how far it has spread, previous treatment received, and the patient’s overall health. Treatment methods for the various types of astrocytomas are briefly explained below.

  • Pilocytic Astrocytoma: These tumours are often removed by surgery alone. In adults and older children, radiation may follow surgery if the tumour cannot be completely removed. Or, the patient may be watched carefully for signs that the tumour has returned.
  • Diffuse Astrocytoma: If the tumour is accessible and can be completely removed, the only additional care required is follow-up scans. In adults and older children, radiation may be suggested in addition to surgery. Radiation may also be used to treat an unremovable low-grade astrocytoma. The role of chemotherapy in treating these tumours is being investigated. I my consultations I was told that chemotherapy and radiotherapy are unlikely to work.
  • Anaplastic Astrocytoma: The first step in treatment of anaplastic astrocytoma is surgery. Radiation is then used to treat the remaining tumour. Chemotherapy may be recommended immediately after radiation or when and if the tumour recurs.
  • Astrocytoma Grade IV: The first treatment step is surgery to remove as much tumor as possible. Surgery is almost always followed by radiation. Chemotherapy is often given at the same time as radiation and may be used to delay radiation in young children.

Tumour re-growth can be treated with additional surgery, another form of radiation, a different chemotherapy drug (or combination of drugs), or any number of new approaches to treatment currently in development.

With my Astrocytoma it is a wait and watch with MRI scans, 99% has been removed (debulking they call it) but it has not been followed up with radiotherapy or chemotherapy. Like all tumours whether they are benign or cancerous, you never know if it’s “cured” but from my understanding in any of the cases you are just buying time, we all have to die I guess but some of us sooner than we’d like. If you are physically and mentally fit like me, we just carry on in the rat race with most of us doing jobs we don’t like to make our bosses happy and richer than us. Personally I would like to pack my job in and spend what time I have with my family but thats not financially viable.

I have been told I could have 5, 10, 15, or even 20 years left on this planet and I would like to hear stories of people living longer than 20 years after diagnosis. Those of you with grade 3 or 4 maybe reading this and thinking how lucky I am, I have told I am lucky, Really! none of us are lucky but some have more time than others.

It is now 26th November 2017 and I have an MRI scan on the 15th december while I won’t be updating this post, the result will be found blogs menu or in treatment section if I have bad news.

All of you who read this, I wish you all the best.

After having surgery I was advised that there are a number of things that could happened and I would need MRI scans every 3 months and reviews on medication every 6 months. The things that could happen are…

  • Become seizure free
  • Seizures could be slight
  • Seizures could be worse due to scaring on brain

Luckily up to now I have only had slight seizures every so often especially if I miss a dose of medication or take it too late.  The seizures started off very slight and you wouldn’t know I was having one.  These have started getting stronger but nowhere near as bad as they was and they do not affect what I am doing at the time I have them.

At the moment my eyes flicker to left and I may move my head but I am able to talk and do things while it is happening, usually I will try to hide it as it passes in a about 10 seconds.

Due to the fact that in the past I have had grand mal seizures I am unable to get my driving license back until I am a year free of minor seizures. It does have benefits as I can now be taxied everywhere and can drink :).

For now life will continue as it has before but “Life moves pretty fast. I do stop and look around once in a while, as I don’t want to miss it.” 😉

Hope you enjoyed this rather long winded true story, I will update it as things happen until the time comes when I can’t.

Other blogs will be information that might be of help so for now that’s it and have a listen to this…

Life without brian.

 

Well, just a quick update. Not posted for a while as you might see but I am still here and well. My Lamotrigine has been increased from 150mg twice a day to 175 twice a day to see if they will help my seizures. Give that a month and if no change to increase that to 200mg twice a day, failing that, they will be reduced and another tablet introduced.

The only news I got at present is that on Sunday 9th April 2017 I had two seizures, both were light but one at 4pm and one at 9pm. Seemed to be no link but may have missed a dose of tablets as I get confused some days or busy and forget. This shouldn’t be a problem because the oncology specialist nurse say that the change won’t affect you that quick. It would be interesting to know how many have this issue.

Luckily I get free tablets but that must be costing the NHS a fortune!

I’m on yearly MRI scans now so nothing to report on that front, hope you all are doing well and bye for now.

 

Sounds a bit morbid doesn’t it? well not today, feel like being a bit positive after a walk with my camera. Since surgery I’ve not really been out and about doing the hobby I love so I decided it was about time even though a little rusty with the camera. Sometimes I think it will do good to focus on something other than the unwanted lodger and more what you can still do so here are a few pics taken recently…

Daylight followed by afternoon light and then stages of sundown(dying light)

15th March 2016, now 1yr 8 months post operation latest MRI scan results show little to no change. Any change that has been seen has been attributed to scar tissue.  Appointments have now been changed from 6 monthly checkups to 9 month checkups.  While this a small victory for me it is quite a hollow one compared to what I’ve read recently. Three years ago I wouldn’t have looked twice at brain tumour issues specifically(but i’ve always given to cancer research).  With this month being brain tumour awareness month there has obviously been a lot of focus on this, the stories I’ve read put mine to shame and I am so lucky mine is what it is.  Sounds a bit strange as a brain tumour is devasting in it’s own way for both patient and family.

I have been spreading awareness myself and including this blog website in hope that it will make people aware.

Friday 18th Sept 2015, had a consultation regarding medication. Nothing exciting or too interesting.  Still having seizures on average of every two weeks is too much apparently, the meds are obviously not working as desired regardless.  1000mg a day is a small dose so my Keppra has now been increased to 750mg in evening and 500mg in the morning for two weeks and then 750mg both morning and evening to see if that settles them. This has to be done slowly because it takes about a week for any changes to settle in your system.  Either way I am starting to rattle as I walk now 😉

So the myth of missing a dose causes seizures can be settled now 🙂

Wednesday 25th November 2015, Keppra incresed last month to 750mg morning and 500 evening and then 2 weeks later 750mg both morning and evening. Seems to be no change and getting minor seizures around every 10 days. Will be seeing the nurse at the local GP, don’t know why as I am under consultants for reviews.

On the 21/8/16 my Keppra was increased to 2,000mg a day and as this hadn’t helped much it was increased to 2500mg per day. I’m getting no side effects but feel this had no real effect on me.

It was decided that I should increase my Lamotrigine to 450mg a day and on 02/07/17 this was completed (as you know it has to be increased slowly). This has had a slight effect of reducing the length of the seizure and a minor changed in strength of the seizure. It was discussed that I may have to be put on another tablet.

 

The holiday was a great holiday and we were camping for two weeks, such relief to get the kids out of your hair. It would have been a killer staying at home for the remainder of the school holidays.

With me having a keen interest in photography and my feeling in my hand and fingers back to normal, I was able to use the camera properly again (which was important to me).  If I have lost the use of left hand I don’t know what I would have done.

I like landscapes…(from holiday)

SONY DSC

Sunset

With me getting better week by week I was able to go back to work full time 5 weeks after the op.  It was suggested by surgeon that I go back part time after 6 weeks if I felt ok and if not I could be signed off longer.

My employer had been really supportive over the whole process from diagnosis to operation and recovery so I decided to go back full time on 1st Sept 2014.

At first it was weird being back as you had just been through a major ordeal, not feeling 100% right and people not sure how to approach you.  To break the ice I just spoke about it freely and made a laugh and joke about it such as…

Staff : How you feeling?

Me : Glad to be back, it’s a weight off my mind!

Jokes such as this continued, questions asked and soon enough it was like I had never been off or had an operation.

see to present day.