RESEARCH
ARTICLE

This thesis was added
14 July 2002

The Presenting Symptoms Associated With Arachnoiditis And The Experience Of Living With Them In Everyday Life

A thesis presented in partial fulfilment of the requirements for the degree of Master of Arts in Nursing at Massey University

by Christine Hopkins - 1998

Chapter Eight: The Role of Nursing in Participants' Experiences.

It might have been expected that nurses would have played a leading role in helping those with arachnoiditis, especially in relation to pain management. Nurses play a prominent role in providing pain relief for those with cancer and those with acute pain. Evidence of their role in providing pain management for participants was not specifically sought at interview. However, analysis of the interviews revealed a disturbing pattern. Nurses were not mentioned in the most glowing of terms by the participants in this study. Indeed, some have downright unpleasant memories of various experiences with nurses.

Jack

Jack had a “shocking” experience when he had his myelogram and became visibly distressed when recounting the events of that time. The seven attempts required before the needle was successfully inserted for his myelogram caused him major pain and raised issues of concern regarding technical expertise and judgement of the staff involved and of Jack’s informed consent to the procedure. Informed consent is a process, not an isolated incident, and Jack was having second thoughts about the wisdom of proceeding.

I just didn’t want them to do it, and they had - it was a guy that did it and three nurses holding. Because I got so, I was so anxious and nervous and, I think because they were trying to push into the spine, they sort of got half way through and couldn’t get in. I started getting so I was shaking and my body started going in to a sort of shock.

He remembers the ambivalence he had, because he desperately wanted a diagnosis to explain the very distressing symptoms that had led to him having the test, so he did not actually demand that they stop. However, consent based on hope or fear is not a free decision and there were other options, such as CT and MRI which he could have been offered once it became obvious that there were difficulties with the needle insertion.

Jane

Jane had come to a rather less than flattering view of surgery and raised an interesting viewpoint in her claim that most nurses shared her view. “You’d go to the length of the world for a cure, if you can get away from surgery. I think most nurses feel like that. You know, if you can stay away from the knife and do it naturally.” Jane had used a number of non-medical therapies over the years but had not accessed them through information from nurses.

Jim

Jim’s hospital experience of nurses, in this case, psychiatric nurses, was also so vivid as to cause him distress when he recounted it.

The times that they did pay lip service to the pain etcetera, I was basically laughed at and told to move. And I think the final insult was, without explanation, they called me into a room at five o’clock and said they were going to do a test which consisted of umm,[became distressed and tears sprang to eyes] the nurse had to put a rubber glove on and they, umm -a rectal finger or some such. That’s - there was no explanation as to why, or the result of it. As if they said, “Well, this will shut you up” [Wry laugh].

It is difficult to know the reasons behind Jim’s rectal examination experience, but he viewed it as a deliberate punitive action by nurses.

The lack of knowledge about the limitations of movement with arachnoiditis caused problems even in areas highly specialised at dealing with pain. Jim did not feel that nurses highly skilled at arthritis management were to support him knowledgeably, which left him feeling completely displaced.

I noticed even, I went to [hospital] after one of the surgeries, I used to go down to the [specialist pain facility], and the nurses just didn’t know what to do with me. They’d say, get in the pool. And I’d just do what I wanted to do, because they didn’t know what to do, really. Yeah. you feel different. It’s just that example. Everybody else is doing it and why aren’t you? So you feel terribly, totally different.

Rose

Rose’s experience at an orthopaedic clinic is interesting in that a nurse was there, but appears to only have had a role as a chaperone, despite the fact that there seem to have been serious concerns about Rose’s management of her medication.

That was when this other doctor [introduced as a pain specialist but later found, on accessing her notes, to be a drug abuse specialist] and the nurse was present . . . he told me to undress, which was unusual. Because he’d only ever told me to take my trousers off before. Ever. And I said to the nurse, “Well, can’t I keep my camisole on?” And she said, “Yes.” She was sitting next - I was sort of sitting on the bed and she was sitting there next to me. And [the two doctors], while I was at the other end of the room, he was showing him on the skeleton and they were talking there for ages. And I got angry, and I said, “Look, excuse me, Do you mind talking to me.” And she said, “Don’t worry, they do this all the time.”

Rose believes this nurse was witness to a promise which was not kept. The doctors wished Rose to have more epidural injections. Against her better judgement, because of the poor reaction she had had at the time of the last injections, but hoping desperately for an improvement, Rose made her agreement conditional.

I’ll agree on one condition. And he said, “What’s that.” And I said, “That you use a different steroid to what you used in ‘89.” I said, “You know I had a bad reaction against it.” He said, “Yes.” It would definitely be different. Now, there were two witnesses [one of them the nurse] to that.

Rose remembers another interaction with the same nurse as arrangements were made, in which the nurse sought to reassure her. “And the nurse, she knew I was pretty upset as well, who booked it in for ten days later, and she said to me, she said, it will be better.” Rose subsequently discovered she had received further treatment with the same drug, Depo-Medrol. That treatment was followed by a marked deterioration in Rose’s condition, particularly bowel and bladder function, mobility and pain levels.

Terry

Terry’s “bossy nurse” was all efficiency when Terry expressed concerns about when the allergy test he had requested prior to his myelogram was to take place, urging him to get ready for a procedure he was not yet confident to undertake. She told Terry to get your theatre gown on, because you’re holding everybody up. And they’re all waiting for you. The theatre’s booked and the radiographer is there, and all the rest of it. And I said, “Well, I don’t particularly care who is there and who is waiting. I want the allergy check done before I have this done.”

After consulting with the radiographer, Terry realised iodine was involved and refused to have the test.

This bossy sister said, “We’ve got the theatre booked and everything. I’m going to get the Matron.” And I said, “Well, that’s fine. You can get the Pope. You can do what you like, but I’m not having it done.” And she said, “You are preventing other people from using the theatre.” It was a big guilt trip. And I was, at this stage, was getting dressed again, in front of them still standing there. So she rushed off and got the Matron. And the Matron came back and said, “What seems to be the problem?” I said, “The problem is that the product you want to use had got iodine in it and I know I’m allergic to it. So I’m not having it done.” And she said, “That’s fine. You’re perfectly within your rights.” So this frumpy old - huh [he became lost for words].

Tom

Tom, trying to be treated within specific guidelines he had been given, found he had to make arrangements for himself when nurses refused to support his request that his specialist be contacted after an x-ray went disastrously wrong.

They arched me backwards to x-ray. I don’t know why. They said they had to have an extended x-ray. But me being extended, unfortunately, there was a loud crack and a big scream from me. I was put in Ward X. Now I’d been told by [neurosurgeon] that I shouldn’t have traction because I’d had a fusion. And he said, once you’ve had a fusion, you can’t be tractioned. They tried to tell me that they were going to put me in traction. And I kept saying to them [nurses], please ring [neurosurgeon]. But they wouldn’t. So I waited till the Charge Nurse left the ward and I grabbed the phone and rung him. And she came back while I was still talking to him. And they were going mad. So I just handed her over. And she spoke to him and I was in [neurosurgeon’s city’s hospital] 5 o’clock that night. And 8 o’clock next morning went into theatre.