Bubble Echo ... now what?

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1

Hello everyone,

I recently got to have a Bubble Echo to determine if I had a Patent Foramen Ovale (PFO or hole in the heart), the head stroke consultant was hedging his bets that it may have been the cause of my cerebellar stroke, "putting two and two to make four" in his words. Since, all my other tests came back clear this was the first line of reasoning, however, there is no hole. 

So, I think they call this kind of stroke, a "cryptogenic stroke" which means no obvious cause can be found ... yet. 

The issue I have right now is the next step. I want to find out what caused my stroke or at least the most likely cause. I assume the Bubble Echo results are sent to the head consultant but what do they do? Do they contact me for further consultations? Or do I need to chase them up via my GP? I don't want to just wait in case my file gets lost in the hospital archives.

This information is important as it might be something they're missing that could cause another stroke down the line.

I am wondering if people have had continual follow-ups and consultations after their stroke with no action on their behalf, or is it a matter of pushing to get some continuity? I only had the stroke in September, I don't want to drop out of the system until some more uncertain details can be resolved. 

3

Hi Rups 

I can understand your anger and frustration. I was given very little follow up after my stroke. I am also in the process of changing GP's because his lack of interest and support since my strokes (I had TIA 3 wks ago and a full stroke 3 yrs ago) has been pitiful.  I have just had a heart monitor fitted for two days since my TIA. I had one done after my first stroke too.  I didn't get any follow up from the first so don't expect to get a follow up this time. I did ask the nurse when I had the monitor fitted what happens next and she just said the results get sent to the Stroke Consultant. So I'm a bit like you in that what happens next....? I know what caused my first stroke which was HRT combined with the high blood pressure that gave me at the time. But I don't know what caused the TIA because I thought the medication was supposed to stop it happening again. 

Follow ups vary around the country. Where I am in Yorkshire, it is near to non-existent. GP's aren't interested - all they care about is Covid. They aren't Stroke specialists so can never give us the answers we desperately need to know yet they won't refer us back. I begged my GP to refer me to a dietitian because I had put on a lot of weight since my first stroke and was worried the weight gain would cause another stroke. I walk everyday, I go to the gym twice a week, I eat healthily with small portions, I eat exactly what my husband eats and yet he is slim and I am overweight. I know my thyroid is low but the GP won't put me on medication for it and poo hoo'd my comments on seeing a dietitian. I felt dismissed like a whinging old woman. Then 3 weeks ago my worst fears happened. I had another stroke. I haven't even had the courtesy of a phone call from my GP to ask how I am. 

My only suggestion is to keep pushing for answers. If you don't get them, unfortunately, the only way I've found I can get the answers I need, is to pay private if you can.  Stroke patients are the poor relatives of the NHS unfortunately. 

4

Dear Rups

We are the cinderella of the health world. Stroke is so badly treated by our NHS. Many GPs have no training. Physio is totally underfunded. It is outrageous. And it is a post code lottery.

what we need to take on board is that stroking is often minutes and hours. When that is stopped, you will soon be assessed as medically fit and can be sent home. The hospitals should also check that you are safe to go home, possibly by transferring you to a physio ward. At best a follow up team will check you at home for say six weeks.

built in to this, a single stroke will make you medically unstable for about 4 weeks, then you should be out of danger.

Then your troubles start. All sorts of issues arise, for months or years. Your brain is trying to resolve the devastation. Side effects abound.

all these issues vary from person to person. Loss of speech, loss of memory, frozen shoulder, dizziness and the list goes on. The big issue is that you are then presenting to your GP and probably starting with the words i had a stroke. But what we need to do is present with words like i cant lift my shoulder. Your GP will know you had a stroke, so we dont need to tell him/her.

this is all a nonsense. We need many many hours of care and GPs dont have the time.

there should be stroke aftercare instead. Then we have a chance.

i have glossed over the current disaster of covid. I was pre covid and i have huge sympathy for post covid stroke survivors.

this year i have joined the thousands who have had open heart surgery, or hearties as i like to call them. And its during covid. The set up is years ahead of stroke set up. Coronary matters are rolls royce wheras stroke is more bicycle.

Every stroke is different. There are a million of us in the UK alone. But no two of us are the same. 
 

yes its a good idea to try and avoid another stroke. Preventative measures. But that is a separate issue to recovering from the stroke that bit us.

things do improve. Be positive, smile a lot. 
best wishes

colin


 

5

Dear Rups

We are the cinderella of the health world. Stroke is so badly treated by our NHS. Many GPs have no training. Physio is totally underfunded. It is outrageous. And it is a post code lottery.

what we need to take on board is that stroking is often minutes and hours. When that is stopped, you will soon be assessed as medically fit and can be sent home. The hospitals should also check that you are safe to go home, possibly by transferring you to a physio ward. At best a follow up team will check you at home for say six weeks.

built in to this, a single stroke will make you medically unstable for about 4 weeks, then you should be out of danger.

Then your troubles start. All sorts of issues arise, for months or years. Your brain is trying to resolve the devastation. Side effects abound.

all these issues vary from person to person. Loss of speech, loss of memory, frozen shoulder, dizziness and the list goes on. The big issue is that you are then presenting to your GP and probably starting with the words i had a stroke. But what we need to do is present with words like i cant lift my shoulder. Your GP will know you had a stroke, so we dont need to tell him/her.

this is all a nonsense. We need many many hours of care and GPs dont have the time.

there should be stroke aftercare instead. Then we have a chance.

i have glossed over the current disaster of covid. I was pre covid and i have huge sympathy for post covid stroke survivors.

this year i have joined the thousands who have had open heart surgery, or hearties as i like to call them. And its during covid. The set up is years ahead of stroke set up. Coronary matters are rolls royce wheras stroke is more bicycle.

Every stroke is different. There are a million of us in the UK alone. But no two of us are the same. 
 

yes its a good idea to try and avoid another stroke. Preventative measures. But that is a separate issue to recovering from the stroke that bit us.

things do improve. Be positive, smile a lot. 
best wishes

colin


 

6

Hello.i agree with you.im in south Yorkshire and stroke survivors are not a top priority.nobody seems to think aftercare or information is important.8 months after my stroke I'm still waiting for a followup, eye test,hearing test and neurological test.im still having problems with.i did have a heart monitor fitted in June for a week but not had results yet?whenever you phone you are told it's backlogs due to the covid.sooo frustrating.i feel like we are just fobbed off.

7

I feel that a lot of people are blaming Covid for everything, most of all backlogs.  Someone said that our surgery is busy due to covid. Yet on their computer systemonline, you are not allowed to visit the surgery if you have any Covid symptoms so what are they doing all day? You can't get an appointment for love nor money. They are only doing triage by phone. You can't get through on the phone - hopeless.

Your statement is 100% correct - we are getting fobbed off.

8

We are indeed, it seems, the cinderella of the health world. The aftermath affects so much of our lives, it would make sense to have good resources for follow-up to improve everything else around us which is affected by our strokes!

9

Thanks Jane, I was told each stroke patient cost the NHS £60, 000, I don't know how true this is but if it is the case, you'd think they'd have exceptional post-stroke facilities to do their best as a preventative measure.

10

It's a shame because it's not in their interest to fob us off, if we need to go back again to hospital it just adds more strain on their resources. The logic is skew-whiff. 

12

Dear Rups

yes indeed. There are so many of us. All ages. There should be something for us. I live in Essex, not the most remote county, yet the stroke association do not cover my little bit of Essex. After a while i found a brilliant voluntary society that covered my area. But i had to find it.
The hospital, Colchester, were superb. The team that came to my home for six weeks were superb. But then.....nothing. My GP was as good as i could hope for.

Yet none of this covered the years of distress that i have gone through.

the best help i have had is from the Angels who pre dated me and passed on what they learnt. That was on the old SA forum.

in my opinion there is a huge lack of understanding generally. 
i have watched ME sufferers go from being dismissed up to now establishing the different versions of ME and being treated properly.  Thats great, but why not the same for SS.

covid 19 will stop all progress for a while. Then perhaps we will sort out the NHS in general and stroke in particular.

i guess i can dream

colin