At what point do we have to beg for help

[sirbob10]

In March 2008 my husband began suffering dizzy spells.

 

He went to the doctors who thought he may have some infection but after 1 month of high blood pressure they decided to refer him to our local hospital.

 

After a few months and no change he was then referred to a bigger hospital 30 miles away. After various tests, procedures and changing of medication over 4 years he felt he was getting nowhere and asked to be referred to a hospital closer to us.

 

A few months ago he underwent some genetic tests and an echocardiogram. The results of the echo showed thickening of the artery walls which they say was a concern and today he went back to be told they still have no idea why his BP is so high (221/136) and all genetic testing was negative. They have said they are very concerned about the thickening of the arteries but until he BP is lowered they can't do anything. His BP has been high for over 5 years now and even when he goes twice a week to our GP for bloods and BP he is very surprised how my husband is still walking.

 

For the last 18 months my husband has suffered blackouts.

 

We are starting to get desperate now as his BP is at a dangerous level and shows no signs of going down and now the consultant my husband seen today says he is referring him back to the hospital over 30 miles away. My husband takes 9 lots of medication each day but nothing is working and every consultant he has seen is baffled.

 

Also my husband is only 42. We have 3 daughters aged 14, 11 and 9 and my husband gets so depressed as he has no energy that is needed to bring up 3 girls.

[bohomiz]

Hello

I'm not a medical person as in a dr but I do have an interest in medicine.

 

I'm going to ask questions in all sorts of random order. Sorry. It's 01:15.

 

Firsly, why does your husband have to travel 30 miles away to a hospital? You mentioned it is larger, but does it have a facility there that is suited to your husbands condition?

 

I know this might sound strange, but see if you can speak to a pharmacist in regards to the 9 lots of medicines your husband is taking. Although dr's prescribe, pharmacists know a lot more. Explain the situation to a pharmacist, the high blood pressure and what it is, the thickening of the arteries, &c., and if possible take the medicines with you or write them out for him to see - don't guess them by this colour, this size blah blah. There could be a possibility that one medication is not working well with another. It can happen.

 

Also, demand a second opinion. You are both entitled to this, and especially if you are not happy with what is being or not being said about your husband's health condition. What might perplex one dr might not another.

 

Like I said, I'm not a dr or a nurse, but have an interest, and I used to work in a pharmacy many years ago and was told that they should/could be used as a first port of call.

 

It's just an idea.

 

Wishing your family the best of luck.

 

With blessings.

 

bohomiz.

[stu007]

Hi

 

There are two avenues I would suggest approaching this and I can fully see your concern with the length of time and been passed from place to place.

 

1. I would suggest making a double or triple appointment with your GP and get it all out in the open with your GP and that you would like a Second Opinion.

 

2. Contact the Patient Liasion Officer at the Hospital they are presently under and be open and explain your concerns and that you would like a full meeting to discuss the treatment as you feel you are going round in circles with do definitive answers.

[sirbob10]

The hospital that is 30 miles away is supposed to be the best.

 

He was referred to that hospital in 2008 to see an endocrinologist but as I say come the beginning of 2013 he was still no further forward. In 2009 he had a kidney sampling procedure done to see which adrenal gland was causing what he though was the problem but they said they couldn't find which side was causing the problem so agreed to do it 1 year later. This never happened although my husband was in to have the procedure done again in 2012 and just as he was about to go into theatre it was cancelled due to theatre contamination but then the consultant decided not to re-arrange as he didn't seem to think it was necessary. So why book it in the first place?

 

Sometimes my husband would have an appointment and travel the 60 miles round trip only to see the consultant for 5 minutes. At the beginning of the year my husband told the consultant he'd had enough of being messed around by him and he had achieved nothing in 4 1/2 years apart from his BP was higher so that why we asked to be moved to a closer hospital but after genetic testing they still have no idea so want to send him back to the RVI in Newcastle. The consultant at this hospital keeps saying to my husband not to worry as they have many years before his BP is a major problem but as he has thickening of the artery walls in his heart and his BP still rising time is not on our side. His BP on Friday was 218/132. He has his BP and bloods done twice a week.

 

My husband at the moment takes

 

Eplerone 200mg per day

Doxasosin 16mg per day

Amiloride 20mg per day

Atenolol 50mg per day

Amlodipine 10mg per day

Ramipril 10mg per day

Hydralazine 100mg per day

Sando K 10 tablets per day

[Panthro]

That is a hefty amount of anti-hypertensives! Is there a possibility that white coat syndrome could be a part of it? Do you monitor it at home?

[sirbob10]

Hi

 

I'll try and be quick.

 

March 2008 my husband starts to feel unwell. Goes to GP and his BP is slightly high. Goes on medication. Few months later and no better BP only getting higher.

 

Referred to local hospital and has MRI. Small nodule/tumour on adrenal gland discovered.

 

Referred to bigger hospital 35 miles away. Sees consultant who adds more medication. Back and forward a few times and they do a procedure to see which side of adrenal gland is causing problem. No answers so agree to do again in 1 years time.

 

Back and forward every 6 weeks and only changes medication, nothing else done.

 

After few years of this referred to another hospital for genetic testing after husband is loosing faith in his consultant.

 

Has genetic testing but all negative so referred back to bigger hospital which my husband was not happy about but referred to different consultant.

 

Husband gets a call from new consultant and without even seeing him says they need to remove the nodule/tumour asap. We go and see surgeon and they want to also remove part of the adrenal gland as they says this has been the problem from the start. No guarantee they can save all of adrenal gland so may have to remove all of it.

 

Back and forward to hospital over 20 times. Husband lost 2 jobs due to his high bp (242/145) and suffers blackouts so can't drive. His mother would make the 100 mile round trip when he had to go to hospital.

 

All consultant ever done was chop and change his medication. He now takes 9 different tablets each day and to make it worse if the surgery works he'll need further surgery on his heart as the genetic testing showed thickening of the arteries due to his heart working to hard pumping blood round his body.

 

So do we have a valid claim. If they'd removed the tumour in the beginning then all of this could have been avoided.

[mr_mastiff]

Sirbob10, Hi I am very sorry to hear of your husbands condition, You will need to find out a lot more information before considering taking action. A lot depends on the size and location of the tumour, there are a number of treatment options depending on if the tumour is functioning or non functioning (hormone production). There is no one size answer fits all.

 

It would be my advice to sit down with your new consultant and ask him for exact details of size of tumour, location and ask him if the conservative treatment your husband had in the beginning was reasonable compared to the risks of surgery. Without all the details of medication, medical records scans etc it would be imposable for anyone on the forum to give accurate advice.

 

This area of medicine is very complex and the pros and cons of immediate surgery is very difficult to predict. The complex function of these glands can lead to a number of hormonal imbalances if part of them are removed.

Edited September 11, 2013 by mr_mastiff
more to say

[Nystagmite]

Did you (or your husband) ask about other options other than medication?

[sirbob10]

Hi

 

Yes we did and whenever the consultant drew a blank he would say lets start from the beginning and see if there is anything we missed.

 

He had 2 lots of what they call adrenal sampling, the 1st time they done it was useless as his consultant forgot to tell him to stop all his medication 2 weeks before hand so they could get a clear result. When they wanted to do a third they took my husband into hospital for 3 days to monitor him before the procedure and then due to theatre contamination it was cancelled and he was waiting to go to theatre.

 

When we asked what date he was to be brought back in we were told the consultant had changed his mind and didn't want to do it anymore.

 

As the blackouts didn't start until 2 years ago the consultant said it was nothing to do with his BP although that's when it was at its highest 248/149. Even his GP says how my husband is still alive is a miracle.

 

I'm just surprised they let it get this far. I could understand them saying lets give it 1-2 years of chopping and changing medication but 5 years is just to long.

 

Sometimes he would have an appointment and his mother would travel 40 miles to our home to pick him up, 35 miles to the hospital, be in the hospital for more than 5 mins for the consultant to say I'm going to arrange an MRI for you, then bring him home and then travel back to her home. I actually spoke to PALS and said the consultant could have quite easily called him to tell him that over the phone instead of wasting an appointment.

[mr_mastiff]

Hi sirbob10. just a few more questions if I may>

 

The GP started your Husband on blood pressure Tablets about 5 years ago. Did the GP do any other blood tests before referring your husband for an MRI.

 

What tablets was your husband on before his adrenal sampling. Was the plan to sample both his adrenal glands. Who told you that the consultant had changed his mind. was it your GP or by letter from the hospital.

 

What was his first consultants speciality. was he an endocrinologist.

 

What is is new consultants speciality.

 

The adrenal sampling can be a very important diagnostic tool. For example if your husband was producing say to much of hormone N, then by taking a sample from both adrenal glands you can tell which one is causing the problem. Sometimes the side that as not got the tumour starts to produce far to much of the hormone leading to the imbalance.

 

You need to ask your GP if there was any Clinical reason why the procedure was not carried out. It could be due to the fact that your husbands blood pressure was to high at time for it to be done safely. You should also ask your new consultant the same question.

[sirbob10]

Hi

 

The GP did bloods and results came back his potassium was low and BP high.

 

The 1st consultant dealt in hormonal problems I believe and he ordered the MRI which showed the tumour on the adrenal gland. He then referred him to the hospital in Newcastle to see an endocrinologist who 1st done the adrenal sampling but when the results came back they were unclear due to not being told to stop his medication for 2 weeks prior.

 

The procedure was carried out for the 2nd time in June 2009 but was again unclear. The consultant said in some cases they may never be able to tell which side was causing the problem, but they would try again 1 year later.

 

After a few years they agreed to do it again and in 2012 he was admitted again for the procedure and this is when it was cancelled at the last minute due to theatre contamination. The consultant came around to see him to apologise and that they would get him back in.

 

I called about 6 weeks later to see when they would admit him again and that's when we were told the consultant didn't see it as beneficial and was referring him to another hospital for genetic testing. We have this in writing.

 

We attended the other hospital and bloods were taken and that's it. A letter was then sent to his GP and the consultant saying they were referring him back.

 

My husband had an appointment with his consultant and said he felt that after 4 years under him he was getting nowhere and asked to be referred closer to home.

 

He then attended Durham hospital who carried out extensive genetic testing which all came back negative. This is also when he had an scan on his heart which showed thickening of the arteries. He said this was a problem but as long as he had the high BP nothing could be done.

 

He was then referred back to Newcastle but to a different consultant who is also an endocrinologist and without seeing him he called and said what was needed. We seen a surgeon within the week and surgery is arranged for next month. He must go in for a pre-op assessment as the surgeon said he didn't want his staff passing out when they took his BP prior to the op.

 

I'm not sure why the 3rd sampling never went ahead. My husband had spinal surgery for a different problem in Oct 2011 and they closely monitored his BP during the surgery.

 

In fact only 2 weeks ago when we received the letter confirming what was discussed with the surgeon it was mentioned he has Conn's syndrome. Although this has been mentioned it was never actually been confirmed.

 

Like I say at the moment he takes 9 different medications. One of them called Sando K the limit for a person with low potassium is 4 per day,my husband takes 12 per day, in fact on 4 of the tablets he takes above the normal limit.

 

He has bloods and BP done at the surgery twice a week.

[mr_mastiff]

Hi Sirbob10, thank you for your reply, If I may I would like to take 24 hours or so to study this. Then I promise I will get back to you.

[mr_mastiff]

Had more time than I thought. I hope this helps.

 

 

First point I would like to make is that if they had removed the tumour when it was first found it could have had a number of outcomes. Ranging from improvement to making matters far worse.

 

It would appear that the first consultant tried to stabilise the condition with conservative management, by giving medication for his blood pressure and I presume medication to control hormonal imbalances.

 

He then started investigations into which area of the glands was causing the problem.

 

First test was inconclusive due to your husband continuing to take his medications.

 

Second test was inconclusive. You were told by consultant that they may never know where the problem was. This is a well documented fact.

 

Third test was not carried out due to theatre contamination.

 

Six weeks later you are told that the third adrenal sampling would not now take place and your husband would now be referred to another hospital for genetic testing. I believe the consultant may at that point thought that genetic testing would provide more answers with less risk than adrenal sampling.

 

When he went to the other hospital and bloods were taken did they explain why he was being referred back. I cannot understand this. Did it state why in the letter.

 

Your husband then requested to be referred closer to home and had genetic testing which proved negative. He also had a scan of his heart which showed thickening of the arteries and at that point he was referred back to Newcastle.

 

His new consultant on reviewing his notes then rang you and said he would be referring him to a surgeon for an operation. I believe he thought that due to all the negative results and the fact that the heart was now being damaged that this option was now the only option left.

 

Did the surgeon tell you what operation your husband was going to have. Is he going to remove the gland or just part of it.

 

As his new consultant talked to you yet about what outcome he is expecting from the operation.

 

Do not worry about the high dose of medication your husband is on at the present time it is very important to keep his potassium levels in the normal range. It can be very serious if they fall too low.

 

There are only two areas which cause me concern. The first one is the time taken between the second and third adrenal sampling. Why two years? You mention an operation on his spine was this in that time period.

The second area is why was he referred to a hospital and then referred back what that was about i do not know, perhaps your GP may have the answer,

 

I hope that everything goes well for you and your husband.

Edited September 13, 2013 by mr_mastiff
mor to say

[sirbob10]

Hi

 

Many thanks for your time and effort.

 

My husband has only had 2 lots of adrenal sampling the last being in 2009, nothing since then.

 

No idea why he was referred to the other hospital but we do recall getting a letter saying why.

 

The surgery he is having is removal of the tumour and partial removal of the right gland although the surgeon can't guarantee he can save all the gland.

 

The only thing we are concerned about is if it will work, which the surgeon has told us only time will tell but he will need close monitoring so they can gradually reduce his medication.

 

Joanne

[mr_mastiff]

Hi Sirbob10.

During my time as a nurse I nursed a few patients with this condition, which as you know is not that common. In one case it took about six month before the other gland sorted itself out and started to produce the right amounts of hormones. I believe the surgeon is correct in telling you that only time will tell and if I was in his position that would be the only honest answer I could give you.

 

Again good luck to your husband in his operation.

 

I spent many a happy day around the area of framwellgate moor in my younger days in the army. Durham as so many lovely places.

 

I normally come up onto the forum once a day if you have any more questions please ask.

Edited September 13, 2013 by mr_mastiff

[sirbob10]

Hi

 

So finally on the 29th October my husband had his surgery. They had planned to remove the tumour and part of the right side adrenal gland but my husband was told that during a prior scan a few months previous another tumour had been found which my husband knew nothing about. It was decided then that they would remove the whole right side adrenal gland.

 

His BP prior to the surgery had peaked at 250/154. After the surgery his BP was still high so they gave him all his BP tablets as normal. Within a few hours it has nose dived to 101/55. He spent 4 days in critical care due to 1 of his kidneys not functioning correctly but they treated this with fluids.

 

He has been out of hospital 1 week now and although the left side of his heart is enlarged due to the constant high BP he seems to be making a good recovery.

 

His BP today was 140/96 so its gradually getting better. His medication has been reduced from 30 tablets per day to 6.

 

So what do I do now? This has taken up 5 years of our lives. Do I contact a solicitor or should I write to the hospital and ask why it took so long to perform the surgery?

 

Any advise would be grateful.

[mr_mastiff]

Hi

 

So finally on the 29th October my husband had his surgery. They had planned to remove the tumour and part of the right side adrenal gland but my husband was told that during a prior scan a few months previous another tumour had been found which my husband knew nothing about. It was decided then that they would remove the whole right side adrenal gland.

 

His BP prior to the surgery had peaked at 250/154. After the surgery his BP was still high so they gave him all his BP tablets as normal. Within a few hours it has nose dived to 101/55. He spent 4 days in critical care due to 1 of his kidneys not functioning correctly but they treated this with fluids.

 

He has been out of hospital 1 week now and although the left side of his heart is enlarged due to the constant high BP he seems to be making a good recovery.

 

His BP today was 140/96 so its gradually getting better. His medication has been reduced from 30 tablets per day to 6.

 

So what do I do now? This has taken up 5 years of our lives. Do I contact a solicitor or should I write to the hospital and ask why it took so long to perform the surgery?

 

Any advise would be grateful.

 

First I would like to say what excellent news concerning your husbands recovery. Due to the number of different hospitals/consultants it is going to be very difficult to pin down down why this operation was not performed sooner. Due to the complex nature I would seek legal advice on how to procede.

[sirbob10]

Hi

 

Thanks for your reply. He only ever saw one consultant. This consultant was who he saw originally in October 2008. It wasn't until 2012 he was referred to see another consultant (genetics) where he had bloods taken. He never saw this consultant again as was referred back to the original hospital. In 2013 my husband said he felt no progress was being made so he was referred back to a hospital closer to home.

 

This consultant performed more extensive genetic testing which all came back negative. He also had a heart scan done which showed the problems with the heart. He told my husband as all genetic testing was negative he was referring back to the original hospital. My husband wasn't happy so the consultant said he would get another consultant at the same hospital.

 

A few weeks later the new consultant called and said he'd read through all the notes and enough was enough and surgery was the only option. My husband seen the surgeon 2 weeks later and the surgery scheduled.

 

I feel that only 1 consultant is to blame for the length of time it has taken to sort things out.

 

5 years of chopping and changing medication. The tumour was discovered in 2008 and as far as I'm aware it was never going to disappear, get bigger or more develop which is what happened but never go away. My husband was on 30 tablets per day and with the majority of them he was taking over the recommended dosage and his heart was never monitored over the years.

 

I'm going to try and look into a medical solicitor. My husband has an appointment in 2 weeks with the surgeon to see how things are going.

[honeybee13]

Hello there.

 

The Law Society website has a facility that helps you find local specialists.

 

http://www.lawsociety.org.uk/find-a-solicitor/

 

HB

[mr_mastiff]

Hi

 

Thanks for your reply. He only ever saw one consultant. This consultant was who he saw originally in October 2008. It wasn't until 2012 he was referred to see another consultant (genetics) where he had bloods taken. He never saw this consultant again as was referred back to the original hospital. In 2013 my husband said he felt no progress was being made so he was referred back to a hospital closer to home.

 

This consultant performed more extensive genetic testing which all came back negative. He also had a heart scan done which showed the problems with the heart. He told my husband as all genetic testing was negative he was referring back to the original hospital. My husband wasn't happy so the consultant said he would get another consultant at the same hospital.

 

A few weeks later the new consultant called and said he'd read through all the notes and enough was enough and surgery was the only option. My husband seen the surgeon 2 weeks later and the surgery scheduled.

 

I feel that only 1 consultant is to blame for the length of time it has taken to sort things out.

 

5 years of chopping and changing medication. The tumour was discovered in 2008 and as far as I'm aware it was never going to disappear, get bigger or more develop which is what happened but never go away. My husband was on 30 tablets per day and with the majority of them he was taking over the recommended dosage and his heart was never monitored over the years.

 

I'm going to try and look into a medical solicitor. My husband has an appointment in 2 weeks with the surgeon to see how things are going.

 

Sirbob10, I have read all your posts again. The question you need to ask is did the first consultant fail in his duty of care?

 

The points I would bring up to your legal advisor would be. 1) Length of time medication! Was this reasonable and in your husbands best interest. They could argue that the risk of surgery when first diagnosed was greater than the conservative treatment of medication. I am only stating an opinion but I find it very hard to believe that this could have been in his best interest for that length of time.

 

2) Length of time he was Hypertensive! A man this hypertensive with a diastolic >140 would be a risk of substantial damage to the organs within his body. This level of hypertension could have caused renal failure,cardiac failure etc. You stated that his heart was not monitored, was his renal function etc monitored because this would be a reasonable expectation for the care of a man with this condition. This care was not only the responsibility of the consultant but also your GP.

 

3)Your husband as had what looks like a very good outcome and I am sure that the consultant will argue that the outcome could not have been predicted and surgery may not have been successful. Was your husband given a choice at any time about having surgery by the first consultant. Was it ever discussed?

[sirbob10]

Hi

 

Although his heart was never monitored he did have regular bloods done. His potassium levels were always low as he was placed on Sando K. The maximum dose for this was 4 tablets per day but my husband was on 12.

 

Removal of the adrenal gland was never discussed with his consultant and when my husband would have an appointment he said a few times he was going to start all over again and the adrenal sampling was the best way to go but this procedure has never been repeated since 2009.

 

My husband is seeing the surgeon next week for a check up and is going to ask if there was a reason the surgery was never done sooner.

 

So far though things seem to be getting better. His BP last Friday was 140/96 and bloods show his potassium levels are rising.

[sirbob10]

Well it's been over 1 year since the surgery and although in the early stages things looked promising his BP has crept back up to its high levels (168/125). We seen the consultant last week and they are now going to remove the left adrenal gland. The consultant said he is still baffled why they are unable to control his BP and as the medication was creeping back up they are hoping further surgery will work.

[sirbob10]

I'm just looking for some advice.

 

For a few years I've been suffering with heavy bleeding, prolonged periods and serve pain.

 

Last August I saw a consultant who after doing an internal said he couldn't feel anything nasty and all looked healthy.

 

He said I had 3 options to control the bleeding, tablets, coil or surgery to burn the lining of the uterus away. I opted for the surgery as I didn,t want to keep going back if the other options didn't work.

 

In October 2013 I had the procedure done and after co in ground from the surgery I was told all looked well inside but due to a very thick lining of the uterus e felt the surgery would fail but I had to wait 6 months. I returned in March 2014 as it had failed where he agreed to do a hysterectomy but only if I lost 3 stones.

 

I went to my doctor who said he felt the surgeon was asking a lot and although I'm overweight I am big framed also I take medication for thyroid and suffer poly cystic ovaries he felt doing the surgery would be best as my other problems were preventing the weight loss.

 

My doctor wrote to another hospital who said my bmi was in range so I seen them 5 weeks ago and they said they would do a scan and then go from there.

 

I went back last week and was told the lining of the uterus was very thick but also a 30mm fibroid was present and this is why I was suffering the heavy bleeding and severe pain. The consultant at the new hospital was very surprised a scan had not been arranged prior as even before doing any surgery a scan would be required as there is only so much they can see with their eyes and feel with fingers.

 

I have started to feel anger in the last few days as I have suffered a further 14 months of pain, signed off work due to finding it difficult to do my job.

 

Is it worth complaining or should I just let this go and await my surgery. I'm 38 so quite young for a hysterectomy

[rebel11]

If you want to know how to complain then follow the following guidance:-

 

http://www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/NHScomplaints.aspx