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Posts tagged ‘poor balence’

A Trip to the Countryside


Sadly I didn’t get to ride the horses!

As readers of my blog will know I’ve had several eye surgeries in the last few years. This year I wanted to be free from hospitals and operations. However, my body had other ideas! 

Whilst my mobility is compromised by both my spinal arthritis and my poor lung function, I can usually stand and walk a few steps without too much pain. I take regular analgesia and my pain levels are usually well managed. But my balance is poor and a few days after a fall in September last year, I experienced a severe pain in my right leg, I was unable to put it to the ground without excruciating pain and soon I had the pain when I was sitting or lying down.

Fortunately I was seeing a Rheumatologist as a follow up after a steroid injection into my left wrist (for pain due to having to try and carry trays of from my kitchen), this was also remedied by getting extra care hours, so I didn’t need to carry stuff. When I went to what should have been my discharge appointment, the Consultant agreed to send me for an MRI. I waited in vain for the appointment, but he was a locum consultant and hadn’t done the referral correctly. Several phone calls later I finally got my scan. When the result came back it was as I had expected, I had a trapped nerve. However this was complicated by a cyst between two of my lower vertebrae L4/L5. 

According to what I understand is now NHS standard protocol, the next step should have been to refer me to the local MSK (Musculo-Skeletal) Triage Team. This is a group of specially trained physiotherapists who decide on treatment according to various treatment pathways. See here for an example of how this works.

I knew that the only way my pain would be resolved would be by surgery and there was no way I wanted a referral to my local hospital. The last time I was an inpatient there following cancer surgery I got a hospital acquired infection which caused wound healing failure and meant that my shoulder wound became so deep that my scapular was visible. The wound took over 15 months to heal. I also knew that weeks waiting for appointments to professionals who couldn’t help me would have a negative impact on my health and well being. More concerning, I had also began to experience peripheral neuropathy, ie numbness in my feet and I knew I needed treatment quickly. This also was affecting my balance, which made any walking really scary. 

One of the advantages of working as a Nurse (my former profession) is that you get to know an awful lot of medics, one in particular came to mind. She had worked for many years at RNOH in Stanmore, a world renowned orthopaedic hospital that specialises in complex cases. I was well aware that I would qualify for treatment there and discovered that I could get referred directly by my Rheumatologist. That should have been a simple letter and the sending of my MRI scan, but in the way of many NHS referrals there were several hiccups, letters not being done, the scan getting lost between the two hospitals, in all it took 3 months before I was finally seen at a wonderful state of the art building in central London.

As soon as I met my consultant I knew I had the best person possible. I had a scan just 30 minutes before I saw him, I had my medical history taken by his Registrar and underwent a rather painful examination, (it took me three days of complete bedrest to recover) the Registrar was very apologetic, but I knew he needed to examine me fully. Then I got to meet my consultant, he immediately pulled the scan up on his computer screen, and took both me and my partner Eve through the images so I could understand exactly what had happened and why I was in so much pain. 

We agreed a treatment plan, I was to be admitted as a day-case so that my cyst could be aspirated to see if that would lessen my symptoms, this would be done by guided imagery and I would also be put on the waiting list for full spinal surgery. 

I quickly got the appointment for my day surgery. I was admitted into a lovely private room, and was taken down to the imaging department where I was placed on my front, given some wonderful short acting anaesthetic and the next thing I knew I was being wheeled back to my room. A few hours later my lovely friend drove us back home. Over the next few days I noticed some reduction in my pain, but that wasn’t sustained, so I was thrilled when I got a surgery date for four weeks later. The date could not come soon enough!

As preparation for my surgery and to prevent MRSA I had to use special body and hair wash, nose ointment and some ghastly flavoured mouthwash! I decided to drive myself to the hospital as there was lots of available car parking and I knew I had friends who could drive me home again. I was admitted to a main ward and promised a side ward after my operation. I had previously been sexually assaulted when I was on an NHS ward by a male patient and am now very nervous of being in mixed sex wards. Whilst there were separate male and female bays, they were adjacent and I did not feel safe.  

The staff were incredibly understanding of this, and one of the Senior Nurses, who was on the hospital safeguarding panel, asked if she could talk about my situation, anonymously, to the panel. I agreed and I hope the way staff supported me would help others who had may have had similar experiences.  

The RNOH could be described as somewhat ramshackle. It is set in 112 acres of green belt to the north of London. It was first built as a hospital just before the WW1 when it became an emergency hospital for the military and also began to house disabled soldiers in 1918. In the 1930’s the hospital became known as the leading centre for the treatment of Polio and TB. Come WW2, lots of Nissan huts were erected to house civilian patients and war casualties. Many of those huts are still being used, with long interconnecting weatherproofed corridors. Some of the corridors are really steep due to the contours of the surrounding land. When I went to theatre my bed was pulled on an electric truck operated by a porter, even the wheelchairs the porters use have electrical assistance. I had been well advised not to have my surgery there in the winter. It looks as if the latest lot of plans for redeveloping the hospital may finally come to fruition, I really do hope so.

Despite the difficulties of the building, everywhere was spotlessly clean and the care I received was wonderful. Firstly the ward I was on had enough staff to care for the patients, a rarity in today’s NHS. All the staff I met treated me well, they understood and accepted my limitations and gave me good personal care. Pain relief was offered regularly and every nurse who came into my room checked my pain score. There were no issues about giving me my own top-up Diazepam for the muscle cramps I sometimes get, in other hospitals I’ve had major difficulties about getting it prescribed and given. The whole ethos of the ward was that everyone cared for the patients. Domestic staff as well as Nurses of all grades were friendly and professional. The one downside was the food. The menu was well designed, but the food was not good quality and it was very repetitive, with the same choices each day. I was glad of the extra treats I had taken with me. 

My surgery went exactly to plan, although it took longer than expected due to the difficulty of removing all of the cyst. I spent my first post-operative night in HDU, which is routine for RNOH surgical patients. My previous HDU experience had not been good, to say the least, so I was slightly apprehensive. But I need not have been, my care was great, I was given enough analgesia, and I did manage to get some sleep. The next day I was back on the ward and in my lovely side room. Although the room was small, I always had easy access to my wheelchair, even though staff had to bring it from another area on the ward, and then had to manoeuvre my bed & open both doors. I never had to wait to use the loo and staff were always on hand to support me when moving from bed to chair. 

I saw both Physiotherapists and Occupational Therapists. The Physio was great, and she didn’t push me to do things I couldn’t do, again a new experience, I’ve previously felt very bullied by some Physios. Even the Social Worker came to try and get my Local Authority to sort out my Care Package, this will be the subject of another blog post.

My partner came to see me each day and our Rabbi came to visit too, which was wonderful. By 5 days post-op I was ready to go home. Our Rabbi’s husband came with my partner to drive my car home, the journey was not too painful, other than going over the dreaded speed bumps along our road. I was really glad to come home and see my lovely cats, who seemed pleased to see me. But my biggest treat was a takeaway from our favourite Chinese accompanied by a large glass of wine. Desert was some scrumptious champagne truffles Eve had brought for me.

I’m writing this two days later, my pain levels are reducing, I’ve even reduced my pain killers, but I still can’t spend much time in my wheelchair. But it’s so great to be home. 


Right Corneal Graft Rejection

This last week last been been stressful and I’ve yet something else vision-wise to adjust to.

Last Sunday I noticed mistiness, pain and weeping in my right eye. Having had similar symptoms when the 25 year old corneal graft in my left eye began to reject and I needed a partial re-graft in May last year, I feared the same thing was happening again, but this time in my right eye, which had originally been grafted 22 years ago.

My vision in that eye has never been good. As a child I had a pellet flicked into to it from a catapult and that caused me some vision loss. Eighteen months ago I was assaulted by someone with mental health problems. She punched the right side of my face causing me to sustain a retinal bleed. Both of these things affected my distance vision considerably but I have retained some close vision.

I was anxious to get to Moorfields to get my eye examined. I desperately wanted to go early the following day, Monday. But I have been waiting for several months to have the gate to my balcony replaced and Monday was the day this was finally going to happen. This may seem like a insignificant thing, but my next post, ‘The Gate’ will explain why this was so important to me.

So it was very early on Tuesday morning that I left home, grateful that the glop problem I had experienced on my left lens had now been solved and I wouldn’t have to worry about not being able to wear my left lens all day.

I got to Moorfields just before 8am, and was just about to reverse into my favourite parking space when I very large lorry drove over the pavement and manoeuvred into the gap! I was not happy! I got out of the car, but not quickly enough to speak to lorry driver, who had, conveniently for him, disappeared. He was parked illegally, the bay was only able to be used by cars with residents permits or Blue Badge holders. So I had to find another space quickly as I wanted to get to the Emergency Department before the morning rush. The only space I could find had unmarked orange bollards at one end of it, not a valid way of preventing parking, but a ploy often used by builders who want a particular space. Unashamedly, I parked my car and moved the bollards, so I could get my wheelchair out.

Fortunately from this new space, I was able to get to the hospital without taking my wheelchair on the road, a very dangerous things to do, as I would be invisible to any lorry going in or out of the building site beside the hospital. I didn’t want to end up as a wheelchair casualty.

At the Emergency Department I was quickly seen by a Nurse, and then by the Doctor, he examined my eye thoroughly and then sent me for an ultrasound on my right eye. I’ve had ultrasounds done on other parts of my body, but this was a new experience.

It was painless and quite comfortable, just a light touch over my closed eye lid. Technology is so wonderful, from the optical ultrasound it was determined that I had no detached retina or retinal bleed. I was relieved, at least with a diagnosis of graft rejection, I knew what I was facing.

The Doctor instructed me to use Dexamethasone drops every half hour into my right eye, and use a steroid ointment at night. Then an appointment was made for me to see the Corneal Fellow two days later. 

All I had to do now was collect my medication, whilst waiting, the Moorefields Mascot paid a visit to pharamacy, encouraging patients to visit the research unit to see what when on there. Tempting though this was, I just wanted to get home.

Three hours after I arrived I was leaving Moorefields, excellent quick treatment, the NHS at its best.

The cone dumping builders were waiting for the space I had appropriated, but at least they weren’t abusive. I was just pleased to get back in my car and be able to drive home.

On Thursday, as I was waiting for my next appointment, Ken Pullum walked passed me, most surprised find me at the clinic, and no doubt relieved that it wasn’t him I’d come to see with yet another problem with my scleral lenses!

The Corneal Fellow, whom I had met briefly last year, decided to prescribe me systemic steroids, to see if that, combined with the topical steroid drops and ointment would reduce my swollen and waterlogged cornea. I was to take 50mg of Prednisolone for 3 days, 25mg for 3 days, 15mg for 3 days and finally 5mg for 3 days.

I was to return the following week to see my own consultant to discuss any future treatment and possible future surgery.

After all the difficulties caused by not being able to get my care hours increased following my surgery last year, I wanted to have a whole year without hospitalisation. It looks now as though this may not be possible.

My only consolation, is that at least if I do need surgery, the good vision I have in my left eye will enable me to be reasonably independent post-operatively.

My only worry is that my balance is very poor at the moment, I’m having at least one fall a day. I’m not sure if this is due to or exacerbated by my loss of vision in my right eye. Part of the reason I know is the unsuitability of this flat, the lack of space I have and not being able to use my wheelchair inside the flat. Carrying trays from kitchen to living room or drinks to my bedroom is hazardous, and would be so much safer if I could use a trolley or my wheelchair.

So amidst having to prepare for probable future surgery I must increase my efforts to move from this flat, it is becoming a more dangerous place for me to be, and moving needs to happen soon, for both my safety and sanity.

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