Terminal cancer support please

[Nystagmite]

According to mum, he's really gone down hill. When I last saw him, (July 15th) he was really skinny and didn't look well at all.

 

He's now been given a year.

[Nystagmite]

Argh.

 

Diagnosed in May 2012 with Arachnoid cysts and was told they don't know the prognosis and I was discharged.

 

Went to GP about in July 2012 about headaches and was told to drink more.

 

Went to the opticians in July and explained that part of the reason for my visit was because I was constantly getting headaches. The optician told me that he doesn't think it's eyesight related, gave me new glasses and told me to visit my GP.

 

Did that was told by the GP it's tension headaches, he doesn't think it's to do with AC and told me to just take paracetamol and ibuprofen.

 

I know my headaches are sometimes eye strain; but these aren't. And it's always the same place. (above my right eye, which has much less vision in than the left)

 

I don't want to be in the situation where I'm constantly having to visit my GP and begging for him to do something. There was talk of neurology referral and beta blockers too.

[citizenB]

http://www.dailymail.co.uk/health/article-2198751/Arachnoid-Cyst-Schoolboy-Laughlan-Dougall-undergone-40-operations-cure-year-headache.html

 

How very odd - someone sent me this link a few days ago regarding Arachnoid cysts.

 

Could you not pester your GP to refer you back to the Consultant who diagnosed your condition in 2012 !

[BRIGADIER2JCS]

Citizen B is correct in all but one point don't pester DEMAND referral to a neurosurgeon, show the your GP that article you should not have to suffer!!

[mr_mastiff]

Argh.

 

Diagnosed in May 2012 with Arachnoid cysts and was told they don't know the prognosis and I was discharged.

 

Went to GP about in July 2012 about headaches and was told to drink more.

 

Went to the opticians in July and explained that part of the reason for my visit was because I was constantly getting headaches. The optician told me that he doesn't think it's eyesight related, gave me new glasses and told me to visit my GP.

 

Did that was told by the GP it's tension headaches, he doesn't think it's to do with AC and told me to just take paracetamol and ibuprofen.

 

I know my headaches are sometimes eye strain; but these aren't. And it's always the same place. (above my right eye, which has much less vision in than the left)

 

I don't want to be in the situation where I'm constantly having to visit my GP and begging for him to do something. There was talk of neurology referral and beta blockers too.

 

How was you diagnosed, because the only way i know of is by M.R.I. If that as not been done you are being fobbed off mate.

did they they tell you where the cysts are located because they can give different symptoms depending on location.

Edited September 1, 2013 by mr_mastiff
want more info

[Nystagmite]

Thanks. It was by MRI. I had an MRI for something else, they saw something that shouldn't be there, couldn't work out what it was, gave me another MRI, ignored the original issue and gave me the AC diagnosis.

 

I can't remember where they said they were located. But he (GP) said it's not where I'm experiencing headaches.

[mr_mastiff]

I have been trying to find out the recommended review times for AC. In America its at least once a year minimum but I cannot find anything concerning the U.K at the moment I have tried N.I.C.E but can only find guidelines for procedures. I will keep digging and see what I can dig up

[mr_mastiff]

Thanks. It was by MRI. I had an MRI for something else, they saw something that shouldn't be there, couldn't work out what it was, gave me another MRI, ignored the original issue and gave me the AC diagnosis.

 

I can't remember where they said they were located. But he (GP) said it's not where I'm experiencing headaches.

 

Have the headaches been increasing in intensity or duration if they have then the GP should refer you

[Nystagmite]

They do keep increasing. GP did seem to imply that the referral would be the last resort. I've seen that consultant before and I thought he was awful.

[mr_mastiff]

They do keep increasing. GP did seem to imply that the referral would be the last resort. I've seen that consultant before and I thought he was awful.

 

I am sorry but you must insist. Everything I have read indicates that it may not be due to AC, However even if it only a small chance that it is, it must be eliminated. Both for your safety and peace of mind. There is also the option of asking for a second opinion if you are unhappy with your consultant. That is your legal right.

[mr_mastiff]

Nystagmite, Hi I been looking around and there is not a great deal out there for you. There are no support groups that I can find in the U.K. Nearly all of the material out there relates to children. I have found a few support sites around the world which I have enclosed below which could be of interest to you. There appears to be a world wide problem with getting doctors to listen to you.

 

arachnoidcysts.org/mission.php

groups.yahoo.com/group/arachnoidcystfriends

neurotalk.psychcentral.com/thread18964.html‎

http://www.arachnoidcystsupport.blogspot.com/‎

http://www.arachnoidcyst.org.nz/‎

 

There is also a link to a library which you may find useful. http://www.healthline.com › Reference Library

 

I have tried to find published Guidelines/Protocols For the treatment of A/C but its that rare they do not exist. I looked on the N.I.C.E site and again nothing that would be of use to your case.

 

I have rang a friend who works as a nurse in neurology and asked her what advice is given to patients on discharge, she replied that it was very patient specific due the nature of the cysts and there location. She did ask what advice you were given on discharge by the consultant. I asked her about your symptoms but she would not give me an answer as such. I did ask her that if you were in his position what would you do. She said she would be banging on the GP,s door.

 

She also said the following book was very usefull . The Official Patients Source book on arachnoid Cysts, its american and I do not know how useful it will be to you.

 

I am sorry there is so little but when it comes to AC there seems to be a black hole on information to help you.

[Nystagmite]

Thanks for your help.

 

I did join a group on Facebook, which appears to be American and it seems as though they do things differently over there - many people seem to have (or their children) VP shunts and /or have had surgery to remove the cyst. According to my notes, it says "there is a question of a mild cyst" - that was around June last year. A letter from ophthamology does give the AC diagnosis.

[mr_mastiff]

Nystagmite, Its been over a year since you was last reviewed I think that it is time to be referred back to your consultant. Its not my area of medicine but I believe you have good physical and psychological reasons to ask for a referral back to The neurologist. I hope everything turns out for the best for you.

 

P.S The Americans do have a different approach to medicine. There are a number of risks to this type of surgery and the British approach is to balance the risk to the benefit of each case. from what I have read a large number of cases do not require intervention just monitoring.

Edited September 2, 2013 by mr_mastiff
More to say

[Nystagmite]

He's in hospital again and it's spread to his lungs. He's not eating or drinking and now they're talking about putting a peg in. (feeding tube into the stomach)

[honeybee13]

I'm very sorry to hear that, Nystagmite. It's hard seeing your loved ones going downhill, I know.

 

Hugs, HB

[Nystagmite]

Thanks. They were hoping he'd be home today. They're putting a stent in and considering putting a camera down his throat.

 

Parents and Grandma (his wife) are now discussing his funeral.

 

He's going downhill so quick now.

[honeybee13]

It's tough, I know. I wish I could make it better for you. HB

 

[Nystagmite]

Thanks.

 

He's had his feeding tube fitted (not sure if it's PEG or RIG) and he should be home by the weekend.

[Nystagmite]

We have no idea when he'll be home. There have been some serious cock-up recently. He's had no food or drink since the weekend, they think his feeding tube has come out, they can't get a canula (?) into his hand and he can't reach his bell. He had to phone Grandma to ask her to phone the hospital to tell someone that he needs pain relief.

 

He explained how oncology get a needle into his hand - they put his hands in hot water and then insert. He was given lukewarm water. He said that's no good, they walked off and didn't come back.

 

Where his tube has possibly come out, they gave him half a pouch of food, which has probably got into his insides.

 

Is it too much to ask for decent care for a man who is seriously ill and will die soon?

[Nystagmite]

I have an appointment to see the GP again next week. Now having problems with the pressure in the front of my head.

[mr_mastiff]

I have an appointment to see the GP again next week. Now having problems with the pressure in the front of my head.

 

I hope everything goes well, stand your ground and insist on a referral, if your pain and eyesight are deteriorating then ask them the question why.

 

There is an old motto from my days in the Army that" knowledge dispels fear" and I believe i that they should be giving you the answers or explanations that you require.

[mr_mastiff]

Nystagmite, has the GP been monitoring your blood pressure when you have been to see him.

[Nystagmite]

I've seen a different GP each time. BP was taken last time.

[mr_mastiff]

I've seen a different GP each time. BP was taken last time.

 

I know my questions seem a bit random, but as there been any increase in your blood pressure since diagnosis? If there as been a increase that coincides with your headaches and eye sight problems then you should be referred.

[Nystagmite]

My BP has never been taken apart from last time in relation to this. Each time it's been "just drink more water" (currently drinking up to 3 litres a day) or "take ibuprofen and paracetamol". None help at all.

 

The tests they use to test eye sight, aren't that accurate in relation to the conditions I have - because things like tiredness affect how much I can see.