Posts Tagged ‘brain’

A recent experience has shown me that some patients don’t confide in their parents and parents don’t always talk to their siblings about the deeper things, feelings, emotions and fear.

While we all may be suffering from brain tumours, today is especially for mothers. If you are a mother with a brain tumour, you are still a mother not just a brain tumour patient with children. If you can celebrate, celebrate what you have while you have it. My thoughts go out to all mothers out there hoping you can have a nice day and something to look back on.

Best of luck to the future and happy mothers day.

 

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Just a quick blog today, with winter in full effect for the past few days I hope everyone is ok and not badly affected by NHS issue’s, luckily I’ve not had to use emergency services but from what I’ve seen the NHS has been affected in many areas to the point of staff sleeping at the hospitals to ensure patients get the care they need.

I have to give them credit for what they do, personally I think they do a fantastic job even though there are issue’s.

While from time to time we complain about the NHS, just think that some countries charge for treatment.

All the best to everyone for BT awareness month.

15th december 2017

Another MRI scan completed today, a little snooze in a magnetic tube courtesy of the NHS Nottingham City Hospital. Scan went fine as usual but won’t get scan results until January 2018. Slight bruising left around vein this time which is unusual as they are pretty good at not leaving a mark, no bleeding so no big issue there.

While looking at the facebook support groups I am part of, someone had posted information about Gadolinium poisoning from contrast dye causing serious health issues and in some cases hospitalisation. Ever scan I have has had contrast dye used but I am not sure which one, I have seen Gadolinium on paperwork from previous scans but it is not mentioned on the one today. I’ve not has any side affects so wondering if anyone has?

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.

 

With recent discussions regarding my health I thought I haven’t updated the blog in a while. So here it is 🙂

The last blog mentioned..

“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.”

Since then I have been to see my Epilepsy specialist nurse for medication review, not on the exact date but at some point my Lamotrigine was increased to 200mg, then 225mg and now it will be 250mg twice daily. Keeping fingers crossed that this will help as not much has happened being on 225mg other than the strength of the seizures. If this does not work then Zonisamide will be introduced, scary isn’t it? sounds like I am going to be Zombiefied!!

My aim really is get the frequency down from every 10 days to as far as I can as I want my driving licence back.

I’m sure many of you are in the same boat and understand what I am really saying deep down, people not in our situation don’t understand the loss this is and how it affects everything you want to do.

However, must keep positive as I have been luckier than a lot of others. If you can and are able (like me) to get out and about, take time to step away from the rat race. I’ve been trying and my photography hobby has increased somewhat.

One of my favourite seaside towns, Whitby looking through a whale jaw bone at the ruins of Whitby Abbey.

Take care everyone and bye for now 🙂

The date 23rd July 2017 marks the 3rd anniversary of having surgery to remove a brain tumour. While an anniversary usually celebrates a happy occasion, this is  something worth celebrating as I have had no further growth.  For some it will be a fight for survival, surviving or in my case waiting on that time bomb to go off. For some odd reason it had affected me this year when usually thinking and talking about it normally doesn’t, at Christmas my scan results confused the neurology team and gave me a bit of a scare, it was sent to a team of experts who reviewed it and came to the conclusion that it had not changed. Keeping fingers crossed it will be better this year as next scan will be around December and results about Januray.

 

I wish all patients and families who are going through this journey all the best and hope you get some good news.

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.

 

The date 23rd July 2016 marks the 2nd anniversary of having surgery to remove a brain tumour. While an anniversary usually celebrates a happy occasion, this is  something worth celebrating as I have had no further growth.  For some it will be a fight for survival, surviving or in my case waiting on that time bomb to go off. For some odd reason it had affected me this year when usually thinking and talking about it normally doesn’t. Keeping fingers crossed it will be better next year as next scan is in September and result will be about end of October/early November.

In order to mark this occasion I am releasing an ebook. The ebook is slightly different to this blog as it covers a little more on the personal side of the experience.

LIFE WITH MY BRIAN-Living With A Brain Tumour

I wish all patients and families who are going through this journey all the best and hope you get some good news.

A change

Posted: April 22, 2016 in Blogs
Tags: , , , , , ,

Not been online lately as it can get depressing reading about other people’s brain tumours so decided to give it a break and take up new hobby. I’ve always used nitro engine powered rc cars and found a little project nitro powered plane. Spent quite a bit of time researching it and got it running. While being enjoyable it has also taken my mind off things. Here is a before picture and in the future if I don’t crash it I will post an after pic.

So for all you brain tumour sufferers out there what do you do to take your mind off things.

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