my wife's condition worsen,and, after a week in hospital doc's won't say nothing

[masisu]

Hello to everyone,

 

Apologize for my grammar I'm only a bit in a rush.

Basically my partner has been in hospital(won't say which yet) since last tuesday with a strong pain right side of head (that lasted since a month ago). Also a little lump on forehead. In the same day(last tuesday) she's fainted/passed out, but she doesn't know what happened since she was walking alone.

First 2 days they won't give her nothing stronger than paracetamol/ibuprofen stuff. Now she is on smth v strong similar with morphine that sedates her and every time i see her she's very sleepy and anyway looks "drugged".

Now her neck is hurting and her right arm is very swallen and she won't move it properly.

She's had 2 ct scans and 2 mri's(apparently first was not good or smth) and they won't say nothing about her diagnostic.

 

Now I'm asking you, is this normal not to know what is going on with my wife, she doesn't know, and if she's allright why is she under so many drugs?

 

Thank you.

[Desperate Daniella]

Hi masisu, and welcome to CAG!

 

Has your wife been seen by a senior consultant?

 

If not, you will need to start demanding one. Don't be fobbed off. Another cagger on the forum said that when he complained about his wife's treatment, the sister on the ward made it clear they are not used to people complaining.

 

My mother has been taken into hospital twice and we have always demanded that she gets looked at by a consultant, and that she is moved if she's distressed where she is. I must emphasise that we are always very, very polite - no screaming or yelling is required - but we are very, very insistent.

 

Go in today and insist that she is seen by a consultant. It doesn't sound as though your wife is improving and they need to find out why.

 

DD

[seanamarts]

You can speak with the ward sister and she should know what is going on, if not then she will get the doctor to speak with you. Have you asked yet?

[masisu]

Hi again,

 

Thank you for reply.

My wife has been seen by a doctor twice, but every time she has been seen he did not say nothing about what is going on, only asked her if she has any family history related to heart or brain problems and every time the same questions.

Is the doctor a consultant or should i ask to speak with another doctor. I'm on my way to hospital and work after.

 

Many thanks.

[Desperate Daniella]

The first person they usually call in is the Registrar or maybe someone junior to him.

 

Insist on seeing the consultant.

[assisted blonde]

They may not know what is wrong with her yet!

[Desperate Daniella]

They may not, but she has been there for a week and apparently her symptoms are getting worse. Masisu says they won't say anything about her diagnosis which is why he needs to speak to someone who will discuss what may be going on and what has been ruled out.

[seanamarts]

Speak with the ward sister and ask to see your wifes notes and explain what is going on, if you are not happy with what she/he has explained then ask to see one of the doctors.

 

please do keep us informed.

[masisu]

Hello everyone,

 

Thank you for your support.

Sorry for delay but here are the updates:

- on 30th I've been hospital and we've seen a doctor that told us she has done only 1 mri, but because my wife moved(she was in pain) in last couple of minutes of it, it was not good, so she will have to do another one.

- they've increased her painkillers dosage, this was on 30th at 11 am, and told us they still don't have a diagnostic, and again on 30th she has been released at 4 pm. Makes me wonder if my visit did this. Basically they gave her alternatives: stay in hospital or go home both cases waiting for another mri. They've strongly suggested that my wife will go home(better rest).

 

Part diagnostic - epilepsy, lots of medication: Epilim included. Also they said she possibly had a blood clot(right side of head) which dissolved on its own, so they expect the head pain to go in couple of days. What is annoying, there is no paper or anything that confirms they're saying, the doc verbally communicated to my wife.

Now she is waiting for a full body mri (at outpatients:! that will come we don't know when.

My wife went to stay with her parents for couple of days, so she can have some peace away from kids, me, visitors ect, but i think something is not all right. She is continuously tired and she looks like even going to toilet is too much effort. The pain in the head and arm has not disappeared and has same strength, she sleeps all night and many hours(7-8) a day. She never slept before in the day time.

 

Now i don't know how suddenly they've found that she is epileptic(my wife is 31 yr old). Shes never had it before and there's no history or hereditary in both families of any heart or brain problems.

Edited May 2, 2013 by masisu

[Desperate Daniella]

Hi masisu,

 

You must be really worried.

 

MRI scans can takes weeks to organize through outpatients; they are quicker for inpatients.

 

Is part of the medication they have given your wife for the headaches? If it is, and if it is not working then you need to take your wife back to the hospital. She will get more rest and peace and quiet at home, but if she has now been at home for nearly 48 hours and is still in great pain then I do think she should go back. That is my personal opinion, of course, but it is what I would do for any member of my family.

 

Was your wife actually seen by the consultant at all?

 

Did your wife ever have any fits or seizures? They are usually the obvious symptons of epilepsy, but I don't know enough about that condition to advise. I wonder if anyone else on the forum does? I'll have a look for you.

 

DD

[masisu]

Hi DD,

 

I am worried and feel powerless.

I did imagine the mri's are quicker for inpatients.

Yes she is taking all the pills that have been prescribed, i believe all of them except epilim are for pain: eg oramorph 10 mg.

My wife is quite stubborn(hope she will be right) so she wont go back so easy, if it was by me I would've take her back to hospital whether i can't stand hospitals.

Yes, she's been seen by a consultant, that asked her questions like any family history ect, move your head up and down, analysed her eyes, that's all.

Shes actually had no seizures before, except nobody knows what happened in the day she went hospital: she was having a coffee with a friend sat on a chair and next moment she fell off on the floor unconscious. Unfortunately her friend was at toilet so she has no idea ab how long it was or any other details. There were other people around her that helped her sit up on chair and that was all. Afterwards she went/walked hospital.

 

Masisu

[Desperate Daniella]

Hi,

 

What did they say about her arm being so swollen?

 

It could have been a blood clot, as they say, but I don't know why her arm would swell.

 

Nobody likes hospitals, but if she is still in pain this evening I really would try and persuade her to go back.

 

DD

[Desperate Daniella]

If she does go back in at least she'll get the MRI sooner.

[Nystagmite]

Hi,

 

Sorry to hear about your wife.

 

My dad was diagnosed with epilepsy at the age of 44. I had it as a child. I think my dad has it because of a head injury. A cousin of mine (on dad's side) has it too.

 

The MRI scan would help rule out any underlying causes for the epilepsy. In my case, it's probably because I was born with another brain condition.

 

Being tired after a seizure is normal. When I was 11, I had a seizure, I was asleep at the time and remember nothing at all. I woke up with what can only be described as migraine and all I wanted to do was sleep. The pain in my head didn't help this at all. Dad said he was the same - he felt really tired and was in a lot of pain (he hit his head both times and had to be restrained) after.

[unclebulgaria67]

I have been in these situations, where Doctors do not appear to know what is wrong. People think that MRI scans and other diagnosis tests in the NHS will reveal what is wrong, so the relevant treatment can be provided. This is unfortunately not the case, as diagnosis mostly relies on the consultant Doctors experience of seeing similar conditions before. You need to be put as much pressure on the Hospital as possible and involve her GP as well. Unless you jump up and down to make sure everything is done that is possible, they will do the minimum. If you can afford to do so, think about getting a private assessment. I have seen this, where NHS Doctors have been clueless over a few years and a private assessment has quickly revealed the problem, which could then be dealt with.

 

In regard to epilepsy, this runs in my family. Nothing during most of peoples lifes and then it comes on in their last 40's/early 50's. Taking the treatment is absolutely vital and in most cases it works. But even with medication, fits can happen due to stressful/anxiety situations, which should be avoided. As much relaxtion as is possible sbould be taken and people who live with her, should make sure this happens.

[masisu]

Once more thank you everyone for your support.

Daniella I will try to persuade her, we'll see the results.

Nystagmite thank you, if it's just epilepsy that wouldn't be great because i know epilepsy can be controlled, and I do know some people having it and living their lives like any other.

She does not have any seizures, although if anyone(me, her parents) talks to her, after couple of minutes of conversation she feels she needs to close her eyes and drop her head so she's kind of out of conversation for 10 sec and she does it quite often. Same thing she was doing in hospital so i presume it's the medication.

Thank you for all the input.

 

Masisu

[Nystagmite]

No problem. In my dad's case, it's controlled really well and in my cousin's case, they can't control it.

[Panthro]

Just to clarify, epileptic seizures are not only where there is unconscious uncontrollable body jerking (tonic-clonic). Seizures might not even be noticeable to the sufferer or a bystander, e.g. absence seizures. If you are concerned about what the actual diagnosis is, then make an (double) appointment with your GP who will have the discharge letter and might explain the reasons for your wife's symptoms. Some of your wife's current symptoms appear more drug related however, this might be a good idea to discuss with the GP also.

 

Hope she feels better soon.

[masisu]

Hi again,

 

My apologize for not typing anything since..

My wife had since an Mri and an Mri with contrast(the last one) about 2 mths ago.

She's received the letter from hospital along with a phone call around 3 days ago..the letter says:

 

"We discussed your Mri scans that you've had over the last few months. It is still not clear with all the experts in the room whether this is a congenital cortical dysplasia or a low grade glioma.

The recommendation has been that we rescan you in six months time and in particular we need to do particular view of the brain as it's still quite difficult to see on some slices.

If you have any problems in the meantime please feel free to get in contact with either your GP or your neurology department."

 

Am i being paranoid or what? How can they not be sure and if it's 50% chances to be a tumour why no biopsy? Why wait 6 month, when, everywhere i read online it says patients with low grade glioma start imediate treatment or surgery or ...alternatives..

My wife feels exhausted every time i come from work i can see it, but she is trying to keep a positive attitude.

 

This unclear diagnostic and such delay is frustrating and i believe that 6 mths is far too long. I've read about both diagnostics online and don't seem nothing similar with hip replacement, hernia(my apologize in now way i'm thinking these are easy surgical intervention) which are not considered life threatening.

Unfortunately we're not actors or well known persons to be treated in consequence.

 

Any advice/reply would be greatly appreciated,

 

Masisu

Edited September 26, 2013 by masisu

[mr_mastiff]

Masisu, I am very sorry to hear of your wife's problems. I hope I can explain what is happening. Due to the fact that your doctor could not make a diagnosis he/she as asked for the opinion of other consultants. I have attended a few of these meetings and there may be as many as five consultants plus a consultant radiographer. Each will examine both the MRI and case notes, obviously in this case even with this level of expertise no firm diagnosis could be made.

 

The next question would be what do we do now? Should we Biopsy? What are the chances for a successful biopsy. In this case due to it being so small and very hard to see there would be only a very small chance of success.

There are risks to any biopsy and so I believe that the doctors have discussed the chance of success against the risks of biopsy and found it would be to great a risk at the present time.

 

Of course you what to know if it is a glioma and if it is what type is it, but rushing into a biopsy at this point could put your wife at risk and you could still after biopsy not have the information you need due to the high risk of failure.

 

Glioma,s are normally slow to grow and I believe the doctors are playing it safe for the present time until they can safely acquire the information they need and then go forward to treatment of the condition.

 

This should have been explained to you and I would encourage you to speak with your consultant to confirm what I believe.

 

I hope that future procedures will give you and your wife the answers you need.

[masisu]

Thank you mastiff, I very much appreciate your detailed answer. It seems to be same with what I've read online and that's that the neurosurgeons opinions usually are divided in 2 : some say is better to proceed to surgery / and or treatment and some to not touch it and let the nature do her job, until there's no alternative than surgery eg tumour grows so big that puts the patient in immediate life risk.

As everyone does, I want what is the best for the one I love, so may I ask you where is/are the best place(s)/specialist to go for second opinion?

It appears from what discussion my wife had over the phone with the secretary(dunno why secretary), that doctors are more inclined to believe its a glioma.

Once again thank you and if have anything else to say please do, I'll be happy to devour your information.

 

Masisu

[mr_mastiff]

Thank you mastiff, I very much appreciate your detailed answer. It seems to be same with what I've read online and that's that the neurosurgeons opinions usually are divided in 2 : some say is better to proceed to surgery / and or treatment and some to not touch it and let the nature do her job, until there's no alternative than surgery eg tumour grows so big that puts the patient in immediate life risk.

As everyone does, I want what is the best for the one I love, so may I ask you where is/are the best place(s)/specialist to go for second opinion?

It appears from what discussion my wife had over the phone with the secretary(dunno why secretary), that doctors are more inclined to believe its a glioma.

Once again thank you and if have anything else to say please do, I'll be happy to devour your information.

 

Masisu

 

Masisu, A number of consultants will have already seen your wife,s scan so I believe that one more opinion will be just more of the same.

 

Due to its small size I believe that your consultant thinks it would be unwise to proceed.

 

If it was my wife Emotionally I would want to be doing something now, but the medically trained part of me would be wanting to wait a short time to do things with greater safety.

 

There are a number of on line groups which may help you. try the one below.

 

http://community.macmillan.org.uk/cancer_types/brain-cancer/f/30/p/36034/407878.aspx

 

http://www.astrofund.org.uk/onlineSupport.ph

 

http://www.braintumouruk.org.uk/node/231

 

You need to go back to your consultant or GP and gather more information. I would be asking the following.

 

Where is the Glioma(if it is a glioma).If the Glioma is in that area. how could it effect my wife? What are the treatment options how long will they last. What support can I get for my wife both emotionally and financially?Should my wife be having regular checks on blood pressure etc.

 

You may find the more knowledge you can get the less helpless you may feel. If I can explain or translate any information please get back to me.

Be careful of what you read online each case is different and there could be many outcomes.

Edited September 29, 2013 by mr_mastiff
Better advice needed