Tinman Walt

Update -

Today I had my stoma redone for the second time as it retracted and almost healed over. The last redoing only lasted 5 weeks. All due to the way the scarring from the ops developed. General anaesthetic but day case, only under about an hour. Hurts like **** to move and I'm knocked back to square one.

Chicken soup and ensure diet until op swelling/bruising goes away. Which I like. Although the 'tonight I cooked' thread is doing my head in.

Had my yearly breathing check on Tuesday and was signed off from that clinic, as the COPD seems stable and I've not had too many chest infections this past year. Even though moving and even conversation can make me breathless, it doesn't continue to get worse and is relieved almost as soon as I stop doing whatever causes it.

Peripheral neuropathy in feet/legs and pelvis is ongoing and I think I've got a bit of it in my arms/hands.

Still generally goosed and immobile. For a week or so I tried walking on a running machine, first for 2 minutes, then for 3 but that's gone by the board due to leg and pelvic pain. Got a constantly sore arse from sitting so much. Keep feet moving all the time I'm awake to stave off DVT.

Have my 9 month check up in a couple of weeks, to see if I'm still in remission.

So, generally goosed but ent ded. Which is nice. Not quite time for the pool yet.
Good to hear! Were you a big smoker?
 
Good to hear! Were you a big smoker?
Yep. Chain-smoked for about 40 years. Surprised I didn't get lung cancer. Stopped on diagnosis of COPD by using an e-ciggie.

Chain-'smoke' that now, though it doesn't appear to affect my breathing.

Have to say though, that I don't regret any lifestyle choices of the past - wasted effort.
 
Yep. Chain-smoked for about 40 years. Surprised I didn't get lung cancer. Stopped on diagnosis of COPD by using an e-ciggie.

Chain-'smoke' that now, though it doesn't appear to affect my breathing.


Have to say though, that I don't regret any lifestyle choices of the past - wasted effort.

Never smoked a day in my life but still got it.
 

mercurydancer

LE
Book Reviewer
Yep. Chain-smoked for about 40 years. Surprised I didn't get lung cancer. Stopped on diagnosis of COPD by using an e-ciggie.

Chain-'smoke' that now, though it doesn't appear to affect my breathing.

Have to say though, that I don't regret any lifestyle choices of the past - wasted effort.
Indeed we cannot change the things we have done in our past. Apart from the ladies of the night who are still hunting me down for payment.

ent dead is good.
 
Not been around for a while.
Are you still ent dead yet????
How’s things going?
Spooky, I was just thinking about an update. Am indeed still ent ded. Which is nice.

As far as I know I'm still in remission, some bloods were out when I was tested two weeks ago but that might be because I've had a chest infection. Required two courses of antibiotics as the first lot didn't quite fix it. Think I might be getting another one.

Next month will be a year of remission if it's still holding. Had to take some extra morphine tonight as I was getting breakthrough pain in back and hip/pelvis/groin. Thought it might help me sleep as well but haven't had a wink as yet.

Third version of stoma seems to be holding up well. Although it's not what would be called a perfect one, I'm well satisfied with it. There's constant adjustments with it however.

I had a fuck it moment a couple of weeks ago and decided to start eating anything I wanted. My taste and appetite have returned although not fully. My diet is fairly restrictive anyway. Don't eat fruit and hardly any veg. For some reason I've grown excessively fond of Heinz macaroni cheese, so have that on two slices of toast every day. Also the old faithful chicken soup, Heinz, and Sainsbury's ready built pancakes. Will try and eat as much as I can of any evening meal that's going. Spag bols, various pie, a slice of meat and a forkful of veg. Have to restrict myself to two or three potatoes, as they're very slow to digest. Have to beware of blockages. Having to chew everything to excess is a bit of a bugger.

Actually felt good for a couple of minutes the other day, a feeling I've not had since the middle of last year. Managing to maintain weight at 170lbs but getting no exercise. Got no muscle at all and I sit for so much of the time that it feels like my tailbone's about to burst through my skin. Had to cut a hole in my wheelchair cushion to try and solve the problem but it only worked for a bit.

Periods of feeling shit amongst a general feeling of 'less than'. Fatigue ongoing, neuropathy ongoing, generally immobile, mild cognitive impairment, pain mostly controlled with occasional breakthrough, abdominal discomfort with occasional pains. Mental health-wise I'm fine. Live in the moment.

Think that's about it. And as said, ent ded yet.
 
My pelvic mass - this is to bring things up to date and to ask for ARRSERS' opinions as I may be slightly biased. First we need a bit of background.

In 1997, I had an abdominal rectopexy with Ivalon mesh to repair a full thickness rectal prolapse. The technique stitches a cut-to-size sheet of Ivalon sponge to the sacrum. Two 'arms' are then wrapped around and stitched to the rectum. The sponge encircles about two thirds of the rectum. The rectum can be stitched directly to the sacrum but the theory is, that the use of sponge increases scarring and fibrosis, making for a more permanent solution. Attaching the rectum to the sacrum by any method, stops it from prolapsing. Surgical sponges can be made of various stuff but it's important to note that gauze swabs are also known as surgical sponges. So that's the background.

Shortly after my cancer diagnosis, when I'd had various scans, I was informed that I had a mass in my pelvis. It's size is about 10 cms by 8 cms by 8 cms. While consulting with my bone doctor, she showed me my CT scan and as well as various bone lesions, she showed me the mass with, 'Nobody's seen anything like this before but we don't think it's anything to do with the myeloma'. The mass was pale with little dark squiggles lines in it and she seemed concerned about the squiggly lines. I said, 'Could it be something to do with the rectopexy'? - 'Oh, you've had a rectopexy, have you, we didn't know that'? 'I bet they've left something inside me', said I, 'somebody's gonna get sued'. My immediate thought.

When I got home I googled stuff left inside after operation and the first image result, that I now can't find, had a picture of an almost identical mass, with squiggly lines. This confirmed my suspicions.

Note - A mass created by a sponge is called a gossypiboma or a textiloma and anything left behind after surgery is known as an RSI, a retained surgical instrument. When diagnosed with cancer there's a mult-disciplinary team (MDT) put together, with various specialists who discuss your case and decide treatment options etc.

The radiologist's report of my CT scan, talking about the mass, suggested maybe some sort of pouch had been created and either the relevant surgeon should be spoken to or the operation report studied. No mention of RSI although supposedly a radiologist is trained to spot them.

I was told after defecography that the rectopexy was still properly in place, as they could see it. No mention of any mass but defecography might not have shown it.

A needle biopsy was done and the report stated that the mass contained necrotic tissue and had a linear element. My suggestion that this pointed to something man-made was rebutted with 'Not necessarily'.

When I asked about the operation report, I was told that records were only held for a certain number of years and might not be available but she'd look. This was the consultant assigned to monitor the mass. She also said it was inoperable, as it would damage nerves and make me worse off.

The latest visit to her last week and she told me that all the reports (she didn't specifically mention seeing the operation report) and stuff she'd read made her quite happy that some sort of sponge was placed deliberately to generate the response and this was to help hold the rectopexy. The first acknowledgement that there was something man-made inside me. At first hearing this seemed reasonable, given that that's why sponges are used. But does it stand up to scrutiny.

I can find nothing in any of the literature that suggests the placement of a random bit of sponge, in order to create a mass that could, and did in my case, lead to severe consequences. There's also nothing in the operation report, which took me less than a minute to find, to say any other sponge was placed in situ, other than the one previously described above as a usual technique.

As I see it there are three options -

1. The sponge inserted has degraded and a piece has come off and caused the mass. Sponges do deteriorate and can do all sorts of damage. Possible but the squiggly lines suggest the radiopaque thread in a gauze sponge, specifically put there so that RSIs can be seen.

2. The surgeon used a technique that is not in the literature and did not mention it to me or put it in the operation report. In other words, used me as an experiment. Doesn't seem feasible given there was no sort of follow-up to monitor this 'experiment'.

3. What I consider the most rational explanation, is that the mass is a textiloma, caused by an RSI, left in negligently.

It seems to me that the everybody has gone out of their way to suggest various things except for an RSI. An RSI is not even mentioned as a possibility and it is this omission that points to an RSI being the case. It's the elephant in the room.

This is all leading to a possible lack of trust in my medical team; do they have my best interests at heart or the best interests of the hospital and the team that did the rectopexy?

I see my haematologist on Wednesday or possibly her nurse, for my 3 monthly cancer check. I don't know whether to make my case or leave it until some future date. I'm going to speak to my GP tomorrow to see if she suggests getting a second opinion from a different hospital, initiate proceedings by making a complaint or seek legal advice. I'll be clear now, it's about the money.

So as you can see, I'm biased. Given what I've stated above, I'd be interested in the opinions of ARRSERS
 
As just posted get legal advice.

If you contact the Law Society they will give you a list of solicitors/barristers who specialise in medical negligence cases remembering that you can only get a barrister via solicitor.
 

mercurydancer

LE
Book Reviewer
My pelvic mass - this is to bring things up to date and to ask for ARRSERS' opinions as I may be slightly biased. First we need a bit of background.

In 1997, I had an abdominal rectopexy with Ivalon mesh to repair a full thickness rectal prolapse. The technique stitches a cut-to-size sheet of Ivalon sponge to the sacrum. Two 'arms' are then wrapped around and stitched to the rectum. The sponge encircles about two thirds of the rectum. The rectum can be stitched directly to the sacrum but the theory is, that the use of sponge increases scarring and fibrosis, making for a more permanent solution. Attaching the rectum to the sacrum by any method, stops it from prolapsing. Surgical sponges can be made of various stuff but it's important to note that gauze swabs are also known as surgical sponges. So that's the background.

Shortly after my cancer diagnosis, when I'd had various scans, I was informed that I had a mass in my pelvis. It's size is about 10 cms by 8 cms by 8 cms. While consulting with my bone doctor, she showed me my CT scan and as well as various bone lesions, she showed me the mass with, 'Nobody's seen anything like this before but we don't think it's anything to do with the myeloma'. The mass was pale with little dark squiggles lines in it and she seemed concerned about the squiggly lines. I said, 'Could it be something to do with the rectopexy'? - 'Oh, you've had a rectopexy, have you, we didn't know that'? 'I bet they've left something inside me', said I, 'somebody's gonna get sued'. My immediate thought.

When I got home I googled stuff left inside after operation and the first image result, that I now can't find, had a picture of an almost identical mass, with squiggly lines. This confirmed my suspicions.

Note - A mass created by a sponge is called a gossypiboma or a textiloma and anything left behind after surgery is known as an RSI, a retained surgical instrument. When diagnosed with cancer there's a mult-disciplinary team (MDT) put together, with various specialists who discuss your case and decide treatment options etc.

The radiologist's report of my CT scan, talking about the mass, suggested maybe some sort of pouch had been created and either the relevant surgeon should be spoken to or the operation report studied. No mention of RSI although supposedly a radiologist is trained to spot them.

I was told after defecography that the rectopexy was still properly in place, as they could see it. No mention of any mass but defecography might not have shown it.

A needle biopsy was done and the report stated that the mass contained necrotic tissue and had a linear element. My suggestion that this pointed to something man-made was rebutted with 'Not necessarily'.

When I asked about the operation report, I was told that records were only held for a certain number of years and might not be available but she'd look. This was the consultant assigned to monitor the mass. She also said it was inoperable, as it would damage nerves and make me worse off.

The latest visit to her last week and she told me that all the reports (she didn't specifically mention seeing the operation report) and stuff she'd read made her quite happy that some sort of sponge was placed deliberately to generate the response and this was to help hold the rectopexy. The first acknowledgement that there was something man-made inside me. At first hearing this seemed reasonable, given that that's why sponges are used. But does it stand up to scrutiny.

I can find nothing in any of the literature that suggests the placement of a random bit of sponge, in order to create a mass that could, and did in my case, lead to severe consequences. There's also nothing in the operation report, which took me less than a minute to find, to say any other sponge was placed in situ, other than the one previously described above as a usual technique.

As I see it there are three options -

1. The sponge inserted has degraded and a piece has come off and caused the mass. Sponges do deteriorate and can do all sorts of damage. Possible but the squiggly lines suggest the radiopaque thread in a gauze sponge, specifically put there so that RSIs can be seen.

2. The surgeon used a technique that is not in the literature and did not mention it to me or put it in the operation report. In other words, used me as an experiment. Doesn't seem feasible given there was no sort of follow-up to monitor this 'experiment'.

3. What I consider the most rational explanation, is that the mass is a textiloma, caused by an RSI, left in negligently.

It seems to me that the everybody has gone out of their way to suggest various things except for an RSI. An RSI is not even mentioned as a possibility and it is this omission that points to an RSI being the case. It's the elephant in the room.

This is all leading to a possible lack of trust in my medical team; do they have my best interests at heart or the best interests of the hospital and the team that did the rectopexy?

I see my haematologist on Wednesday or possibly her nurse, for my 3 monthly cancer check. I don't know whether to make my case or leave it until some future date. I'm going to speak to my GP tomorrow to see if she suggests getting a second opinion from a different hospital, initiate proceedings by making a complaint or seek legal advice. I'll be clear now, it's about the money.

So as you can see, I'm biased. Given what I've stated above, I'd be interested in the opinions of ARRSERS
PM me, I may be able to advise
 

dockers

Old-Salt
Book Reviewer
As just posted get legal advice.

If you contact the Law Society they will give you a list of solicitors/barristers who specialise in medical negligence cases remembering that you can only get a barrister via solicitor.
You can directly instruct barristers now
 
My pelvic mass - this is to bring things up to date and to ask for ARRSERS' opinions as I may be slightly biased. First we need a bit of background.

In 1997, I had an abdominal rectopexy with Ivalon mesh to repair a full thickness rectal prolapse. The technique stitches a cut-to-size sheet of Ivalon sponge to the sacrum. Two 'arms' are then wrapped around and stitched to the rectum. The sponge encircles about two thirds of the rectum. The rectum can be stitched directly to the sacrum but the theory is, that the use of sponge increases scarring and fibrosis, making for a more permanent solution. Attaching the rectum to the sacrum by any method, stops it from prolapsing. Surgical sponges can be made of various stuff but it's important to note that gauze swabs are also known as surgical sponges. So that's the background.

Shortly after my cancer diagnosis, when I'd had various scans, I was informed that I had a mass in my pelvis. It's size is about 10 cms by 8 cms by 8 cms. While consulting with my bone doctor, she showed me my CT scan and as well as various bone lesions, she showed me the mass with, 'Nobody's seen anything like this before but we don't think it's anything to do with the myeloma'. The mass was pale with little dark squiggles lines in it and she seemed concerned about the squiggly lines. I said, 'Could it be something to do with the rectopexy'? - 'Oh, you've had a rectopexy, have you, we didn't know that'? 'I bet they've left something inside me', said I, 'somebody's gonna get sued'. My immediate thought.

When I got home I googled stuff left inside after operation and the first image result, that I now can't find, had a picture of an almost identical mass, with squiggly lines. This confirmed my suspicions.

Note - A mass created by a sponge is called a gossypiboma or a textiloma and anything left behind after surgery is known as an RSI, a retained surgical instrument. When diagnosed with cancer there's a mult-disciplinary team (MDT) put together, with various specialists who discuss your case and decide treatment options etc.

The radiologist's report of my CT scan, talking about the mass, suggested maybe some sort of pouch had been created and either the relevant surgeon should be spoken to or the operation report studied. No mention of RSI although supposedly a radiologist is trained to spot them.

I was told after defecography that the rectopexy was still properly in place, as they could see it. No mention of any mass but defecography might not have shown it.

A needle biopsy was done and the report stated that the mass contained necrotic tissue and had a linear element. My suggestion that this pointed to something man-made was rebutted with 'Not necessarily'.

When I asked about the operation report, I was told that records were only held for a certain number of years and might not be available but she'd look. This was the consultant assigned to monitor the mass. She also said it was inoperable, as it would damage nerves and make me worse off.

The latest visit to her last week and she told me that all the reports (she didn't specifically mention seeing the operation report) and stuff she'd read made her quite happy that some sort of sponge was placed deliberately to generate the response and this was to help hold the rectopexy. The first acknowledgement that there was something man-made inside me. At first hearing this seemed reasonable, given that that's why sponges are used. But does it stand up to scrutiny.

I can find nothing in any of the literature that suggests the placement of a random bit of sponge, in order to create a mass that could, and did in my case, lead to severe consequences. There's also nothing in the operation report, which took me less than a minute to find, to say any other sponge was placed in situ, other than the one previously described above as a usual technique.

As I see it there are three options -

1. The sponge inserted has degraded and a piece has come off and caused the mass. Sponges do deteriorate and can do all sorts of damage. Possible but the squiggly lines suggest the radiopaque thread in a gauze sponge, specifically put there so that RSIs can be seen.

2. The surgeon used a technique that is not in the literature and did not mention it to me or put it in the operation report. In other words, used me as an experiment. Doesn't seem feasible given there was no sort of follow-up to monitor this 'experiment'.

3. What I consider the most rational explanation, is that the mass is a textiloma, caused by an RSI, left in negligently.

It seems to me that the everybody has gone out of their way to suggest various things except for an RSI. An RSI is not even mentioned as a possibility and it is this omission that points to an RSI being the case. It's the elephant in the room.

This is all leading to a possible lack of trust in my medical team; do they have my best interests at heart or the best interests of the hospital and the team that did the rectopexy?

I see my haematologist on Wednesday or possibly her nurse, for my 3 monthly cancer check. I don't know whether to make my case or leave it until some future date. I'm going to speak to my GP tomorrow to see if she suggests getting a second opinion from a different hospital, initiate proceedings by making a complaint or seek legal advice. I'll be clear now, it's about the money.

So as you can see, I'm biased. Given what I've stated above, I'd be interested in the opinions of ARRSERS
Can you choose my lottery numbers for tomorow
 
Well many thanks folks, already made me realise that there's a time limit from when I became aware, 1 year for a hospital complaint or 3 years for legal action. Not sure when the aware date would be, because there's not a definitive answer as to what the mass is. Whatever I decide, I'll begin this week.

Am still ent ded and will give a proper update on the cancer on Wednesday.


I've just had a thought that mayhap the MDT are playing a delaying game such that I'll run out of time. See what I mean about lack of trust?
 
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