Experiences

Hilary Boone

North Hykeham, Lincoln

California

South Park High School

 

Rotator Cuff Surgery – and PPS.

This has been compiled with the help of polio survivors at different stages of having this surgery over the last six months. My thanks to Janet, Barbara, Peggy, Richard and Anita. The rotator cuff is your shoulder joint. The surgery can be done in two ways, open or arthroscopically.

More and more polio survivors with painful shoulder/s are eventually having/requesting an MRI and finding that the damage to their rotator cuff is more than their doctor expects. (“orthopedic doctor she referred me to, jumped to the conclusion that it was only a small tear, and that I wasn’t a candidate for surgery…all without doing any X-rays, MRI”). Normally one of the rotator cuff muscles is torn by a fall or injury. (“walked around the bed to get to the bathroom in the dark. I tripped over a laundry basket and fell”). Polio survivors can have all three muscles torn, and sometimes the biceps tendon is also frayed. Rotator cuff tears can happen after a fall or injury to the shoulder but in polio survivors this can also come on over time due to the many years of using ones arms as extra to the legs to rise and lower from chairs/floor/transferring.

For a polio survivor – especially one who is already experiencing some late effects of their polio – any surgery has to be considered carefully. Su your shoulder/s means that at least one arm is going to be out of action for some considerable time post surgery. Full recovery with 90 to 100% return of function from rotator cuff surgery for a polio survivor can be nine months to a year. There are stages to go through and it is imperative to assure yourself that you can transfer yourself or with help for all actions of necessary daily living till you are able to use this arm normally again. Until you strap this arm to your body you may not realise how much you do with it. (Further info later in article). The following are the general instructions for post surgery.

Six weeks with no use of the arm at all. The arm is held in a sling and swath.

There are below elbow and hand exercises that you need to do to keep the swelling down. Therapy is necessary to ensure that your arm does not stiffen up and that range of movement is kept. The therapist will move your arm for you ensuring that you do not use the repaired muscles. (“It’s painful, bearable

but essential”) Six weeks to six months you can now move your own arm with restrictions and

you must put it daily through its range of movement and work to a treatment plan. (“You cannot use your cane with this arm, you cannot use it to transfer, you cannot lift more than the weight of a mug of coffee”)

From six months on you can start lifting more weight, using that cane again, and

start using it to transfer. (You will be given extra exercises)

Pain after the operation is high. (“I was asked how bad my pain was between 1 to 10, I said 20. I told her it was easier to have a baby, and I meant it.”) Richard

had a local anaesthtic pump directly into his shoulder for three days, plus he had a morphine pump for 36 hours whilst he remained in hospital. After this he was prescribed strong painkillers and over the counter analgesics in addition. He had to take all these on a regular basis plus use heat and freezer packs. (Said by many “My arm muscles would go like ‘hard rocks’ which was very painful”). The pain gradually lessens but this continues for some months. Janet now eight months post surgery “The pain is still so bad from the shoulder down to the hands. But, I’ve stopped taking regular Tylenol as my fingers started to swell.” Richard now three and a half months post surgery “at last I am having some pain and drug free hours but I still need some over the counter analgesics most days”

The biggest problem is frustration in not being able to use the arm as you want to. Depending on how much use you have of your other three limbs this can cause a variety of problems. What you need to do is to practice pre operation and plan ahead. Using aids and assistive devices that you might only need for a while post surgery to help and make sure you do not fall and damage the surgery is essential.

Finding comfortable positions comes a close second especially as sleeping on the operated side is not possible for some months. Janet says “I made a nest with the bed pillows and got in the middle”. Having a variety of sizes of pillows available is helpful.

Before you agree to this operation ensure the health professionals involved are fully aware of polio and its late effects. It is imperative that your muscles, in all limbs, are graded correctly. In the States medical professionals specialise far more than in the UK and one surgeon does arms and another legs and sometimes even just parts of them. Therefore it is imperative that they realise what you do with this arm, and that having it out of action for this length of time

could make a drastic difference to your life.

It is advisable to ensure that your surgeon and anaesthetist are aware that polio survivors can experience problems with anaesthesia and positioning on the table and in recovery. Provide them with copies of the articles on anaesthesia and PPS in case they have not read them. If you are still concerned then ask to speak to them again explaining that you are not questioning their knowledge or expertise but for your own peace of mind you need to be sure that they do not think you are an awkward patient’ but an informed one about your own condition and previous experience. Richard says “shortly after I came round I was having difficulty breathing and they raised the back of the bed to help but made it worse. I needed to be laid flat with a small roll of material under my neck and it took him some minutes before they understood. As soon as they did this then I could breathe so much more easily.” As for the most part we are totally unaware of what happens in the operating and recovery room it is essential that you ask for an honest report so that if you have another operation you can pass this information on.

It is important that your stay in hospital, which is likely to be longer than for a non polio, goes well. Whereas for many non polios this can be done in a day surgical unit, it is likely and preferable that you stay at least one, possibly two nights. If you have special needs with transferring, toileting, dietary, then it is advisable to have someone with you who understands all this and can do the talking for you for those first few hours/day or two. It seems surprising that facts like ‘no dairy can produce food with “oh its only got 2% milk in it, I am sure that won’t harm you”.

Most hospitals procedure is to ask you NOT to bring your own drugs in with you. If you need to take these drugs at a certain time of day – even though you have pre informed them of this fact – then it is advisable that the person with you has these drugs with them in the event that they have not been prescribed. Richard “I take regular drugs that I could not take for 16 hours. As soon as I was aware enough I asked for these drugs to find that they had not been prescribed and we had to use those brought with us”. In Britain we are usually given drugs for a few days to take home with us giving us time to get someone to take our discharge letter to our doctor and the next day pick up the prescription that has been advised in the letter. In the States you are given a prescription on the day you leave starting with the next dose after leaving hospital. With drugs only four hours apart this does not allow a lot of time, but with the knowledge in advance you can prepare for this.

As mentioned before it is really helpful if you can meet the post operative therapists before the operation so that they can see how you manage your daily activities. The best thing you can do is to put that arm in a sling for a few hours over two or three days and go through your actions of daily living and pick out where there are problems. You can then show this to your post operative therapists and between you work out ways to cope, and what aids you might need to use for a few weeks/months to make life easier. It might mean that to begin with you need someone with you 24 hours a day to assist with toileting, dressing especially if you wear orthotics or need both hands to put on shoes, and making meals for you.

The other reason for meeting the post operative therapist pre the operation is that apart from seeing how you do what you do (which is likely to be different from the norm). They can also go through the post operative exercises with you so that you know what to expect and they know how far and how often you can do them now. Its useful to do these exercise with both arms if you can to ensure that you do not stiffen up. Remember that unless they are and have been working with polio survivors who have late effects of polio they may not understand that you cannot repeat the exercises the number of times they would expect from a non polio, and that you may not be able to do more than a few minutes at a time. (“They thought I was being a wimp till they read some info on PPS”) By meeting with them pre operation you can explain and show them how

you use your muscles and work out a possible schedule. Pain will be a factor post operation, and their moving your arm passively for those first six weeks will hurt but it’s absolutely necessary to keep your range of movement and prevent adhesions.

If you use a chair or scooter and are told that you cannot have it in hospital then ensure that the manual chairs that you might have to use are wide enough to accommodate you and your arm in a sling, do have removable sides and foot rests if you will need them moved to transfer.

Richards therapist – Cordell Carmalt – provided us with a set of exercises for the six weeks to six months period. Richard worked out a system that brings these exercises into his daily routine, so that he does them bit by bit during the day, pacing them with his level of daily activity. For instance when watching TV he will do a couple of arm movements each time there is a change in program or advert break. This way of pacing these exercises has worked well for him. I also do some of these exercises and my range of movement is improving slowly. Remember you must check with your GP or therapist before starting any non prescribed treatment.

SIX WEEKS POST ROTATOR CUFF SURGERY EXERCISE PLAN

FOR POLIO SURVIVORS.

IMPORTANT – This exercise plan was prepared for a specific person to start six weeks post rotator cuff surgery. If you have this surgery your therapist will give you a plan for you. However, you can use these exercises to help you keep supple. Check with your GP or therapist first that it is OK for you to do each exercise. Start slowly repeating them to your level, rest in between if necessary. You need not do them all at once, try fitting them into your daily pattern of living. Cordell Carmalt OTR/L, Bradenton,

Dowel Exercises 1″ PVC pipe 20″ to 24″ long

Start Lying Down. Keep elbows straight and pull dowel back as far as possible. Stretch that shoulder! Return to Start and Repeat.

Start Lying Down. Start with dowel below chin level if possible. Push straight up. Try to touch the ceiling by lifting your shoulders off the bed. Return to start and repeat.

LYWO DOWN

Start Lying Down with dowel above head. With elbows straight, move dowel as far to the right as possible. Then to the Left. Stretch those shoulder blades. Do five each way if possible.

After 2 weeks, do these first three exercises sitting up and add the following one.

LYT ONE

Sitting Up. Start with the dowel under your nose. Push straight up high as you can. Return to Start and repeat.

© Copyright – Lincolnshire Post-Polio Network – Volume 3 Issue 5 OF 12 JUNE 2001

21

RANGE OF MOVEMENT / STRETCHING

Start lying down. Shoulder Abduction. Slide arm on bed Then turn hand so that palm faces you above shoulder height. Try to bring arm up to the side of your head. Go as far as possible,

Then let your carer/therapist stretch you as far as you can go. Return to Start Repeat

6. 6. Rotator Cuff.

Start lying down and with arm at side. Pull Arm into ‘I Swear’ position. Return to Start without stretching. Repeat

START LYING DOWN

7. 7. Shoulder Flexion. Start lying down with arm at your side. Keen elbow straight. Pull arm behind head as far as possible. Use all your strength coming back, then have carer/therapist stretch you as far as you can stand it, but keep trying to pull the arm back with your own muscle power (hurts less after rotator cuff surgery if you do this) Return to start. Repeat. Stretch should be done every day until you have achieved normal range of motion.

02

Start lying down Place arm in internal rotation as shown. Rotate your am back and try to touch the bed with the back of your hand. Then rotate the hand downward and try to touch the bed with the palm of your hand. Have carer/therapist stretch you in both directions. Try to pace yourself. Remember if your shoulder is comfortable at your end of range of motion when you are exercising you are not gaining! Go into the Uncomfortable Zone.

© Copyright – Lincolnshire Post-Polio Network – Volume 3 Issue 5 OF 12 JUNE 2001

22

Start sitting with arms down. Pull up to the ‘I Swear position, Pull hand back as far as possible. Return to Start and Repeat.

10. 10.

Standing. Place one hand on a table or the back of a chair and lean over slightly. Have your arm go in ever larger circles, then side to side, then front to back. This loosens the shoulders. Make movements as big as you can.

11. 11.

Face wall with hand at side. Keeping elbow straight, but barely touching the wall with ‘walking fingers’ bring arm up as high as possible. Mark progress with pencil or tape a yardstick to the wall to mark progress. Push for higher and higher.

12. 12. Face to the right/left and abduct your arm up the wall as far as you can. Barely touch the wall use ‘walking fingers’. Mark your progress.

Once you can get it higher than your shoulder

turn your hand palm up to go higher.

Other exercises that you can do to help you keep your arms supple and prevent oedema post surgery. In the short run oedema (swelling) delays healing and increases pain and stiffness. In the long run this causes fibrous deposits in tissues, making them seem woody, causes scars to form between layers of tissue and reduces the nutrition and elasticity of nerves, vessels, joints and muscles. These exercises can be done at any time to help keep you supple. Remember to do them to your own pace and repeat as often as you are comfortable with. Try fitting them into your daily routine.

1

2

Lying on your back with your arms by your side raise your arm from elbow to hand up and

down. Sitting with arms by your side turn your wrists over and back again, up and down. Make a fist, being sure each joint is bending as much as possible. Relax and then straighten

fingers as much as possible. Relax and repeat. Holding hand palm upright and in line with arm bend top two sets of knuckles down and back. In same starting position bend all fingers down to 90 degrees and back again. In same starting position touch thumb with each finger. In same starting position touch base of little finger with thumb.

TLON

© Copyright – Lincolnshire Post-Polio Network – Volume 3

Issue 5 OF 12 JUNE 2001

23

All I Want is to Breathe the Air That I Need.

I have provided this story in the hope that it will assist others who have unusual respiratory problems. My research and need for diagnosis has spanned some 25 years and it is only with the help of my family, some close friends, a good GP and a wonderful Physiotherapist (Specialised in Respiratory Issues) that I have been able to withstand the emotional trauma of this 25-year period. My heartfelt thanks also to Hilary who has been the recipient of many questions over the years and has often referred me (amongst other places and people) to the Lincolnshire website for the information we have so gratefully downloaded.

Margaret Duckworth

Brisbane, Australia. [maduck@bigpond.com]

My apologies to the author of one of my most favourite songs which is the “The Air That I Breathe” sung by The Hollies and very popular in the 1970’s. Of course that does somewhat date me I know.

Apart from being a catchy melody this song with its chorus including the line “All that I need is the air that I breathe and to love you” encapsulates my feelings about my addiction to air. The love I have is for my husband and my three sons who have stood shoulder to shoulder with me during this battle I have fought to find answers about my respiratory problems and to be able to breathe easily.

As the years have passed since the initial Polio diagnosis (1954) and the later recognition of the impact of the late effects of Polio (1983) I have been searching for answers for my frustrating breathlessness. This breathlessness has always been with me but, spicing up my life considerably, have been intermittent episodes of acute breathlessness and respiratory distress.

Ask many of my doctors and they would say “Oh no, Margaret, not respiratory distress but an anxiety! panic attack”. How silly of me to think that I have respiratory distress when I can’t breathe. It is so infuriating to be told that you are having an anxiety attack when you are fighting for composure as breathlessness escalates. Do the Doctors not understand that if one allows oneself to panic at that stage the breathlessness just keeps on getting worse?

I would not like to bore my readers with a long and detailed description of my search for answers so I have prepared a brief synopsis of the many avenues I have tried to get assistance.

I must add that I fully recognise the difficulties I have experienced have been exacerbated by the fact that we, as a family, have had a number of moves within Australia which has meant that I have had to start all over again with new GP’s and Specialist Medical personnel each time we have moved. (This sort of reminds me of another song… “pick myself up, dust myself off and start all over again”).

In 1954 I was hospitalized with Poliomyelitis and while in hospital I developed Polio encephalitis. On one night some 5-6 days after being hospitalised I was deemed to be 12 hours off being placed in an Iron Lung and my parents were told that I might not live through that night as I was an extremely sick child. I was just nine years old.

Being the stubborn and determined individual that I am, I did survive, albeit somewhat disabled, having lost the use of both arms, neck muscles, some left leg muscles and respiratory muscles, which were also damaged. The degree of damage was not made available to my family after my discharge as some nurse “lost my muscle chart when my aunt, a Physiotherapist, rang to find out the extent of the damage. All I know is that I was fed thickened fluids and kept under direct observation from the Nurse’s station even in the non-acute ward.

I was taken home for rehabilitation. I spent 6 months on a double Thomas splint day and night,

© Copyright – Lincolnshire Post-Polio Network – Volume 3 Issue 5 OF 12 JUNE 2001

(enforced quadriplegia as I could only move my right hand during the day). I then spent another 12 months on the splint at night and was slowly taught to walk again.

When I returned to school some 21 months later I had to wear an arm splint and have a nap every lunchtime and I spent every Sunday in bed for total rest.

Eventually after some 4 years of intensive physiotherapy I was put back into the community as so many of us were, to function as best I could. I got on with life but noticed that strenuous exercise (dancing, bushwalking, rock-climbing etc) caused me to be very breathless even though I exercised as much and as regularly as my peers. It was often thought I was unfit but I felt there was another explanation. Thad already learnt to wake myself up when I became breathless during sleep and not to panic when I was breathless, whatever the cause, as panic just made it all so much worse.

While working as a dialysis technician in the mid 60’s I was diagnosed as having a benign familial tremor, which causes me to be very shaky in the hands and voice and legs especially when anxious. This is a genetically inherited condition and my family has a number of members who have this disorder. I am in exalted company here, Katherine Hepburn (I am told) has the same condition.

In the late 70’s I developed respiratory problems, which were diagnosed and treated as asthma. At this stage I was told that I was acutely anxious and my GP tried to alleviate my acute respiratory problems associated with the asthma attacks by injecting me with Valium. Thasten to add that nearly rendered me unconscious but did not stop the acute breathlessness.

In the 1980’s having moved yet again I met another woman who had Polio and who was using ventilatory support. I talked to her and as a result went to St Louis USA to a Polio Conference to see if I could get any answers to my questions. Following this trip I was provided with a volume cycle positive pressure ventilator and told to use it only as a daytime support mechanism. This helped but not significantly and I eventually drifted away from this treatment. I was still having regular Emergency Department visits with respiratory distress but usually leaving after some treatment with the words “Panic Attack” ringing in my ears.

I was still using a number of “tricks” to be able to sleep including pushing my chin up with one hand to assist in opening my airway, sleeping with the head of the bed up on bricks and waking up and sitting up whenever I became breathless and then breathing deeply and regularly until I felt that I could lie down and sleep again.

In 1993 I became very breathless following an infection and I did not pick up afterwards. I went to a variety of Doctors who eventually determined that I had weak diaphragm and inspiratory muscles and asthma and following a sleep study told me I had hypopneas during sleep. Importantly there was no Carbon Dioxide (CO2) monitoring during this sleep study.

My Oxygen (O2) level would drop to about 91% during sleep but this was considered not serious. However I was prescribed CPAP with low pressures between 4 and 7 cms of H20. In the first few weeks I found it very hard to use this treatment and I became progressively more tired. After about 12 months treatment I became so tired that I would fall asleep at work at 2 pm each day and I headed off to yet another Doctor.

This doctor prescribed BiPAP S as a “cure-all”. I mentioned my volume cycle ventilator and was told that it was a dinosaur and that no one used volume ventilation any more. Pressure was the treatment of choice.

I found that BiPAP was a much better form of ventilation for me than CPAP and for some months after the change I was feeling a lot better but still having episodes of acute respiratory distress requiring hospitalization although the number of hospital visits was decreasing. I might add that no Doctor to date had been willing to provide me with a diagnosis.

© Copyright – Lincolnshire Post-Polio Network – Volume 3

issue 5 OF 12 JUNE 2001

After yet another period of respiratory distress and hospitalization, I found yet another Doctor, a sleep specialist, who having done, you guessed it, another sleep study again with no CO2 monitoring during sleep, decided that I was well enough to fly to the UK mid-1998 with my husband on a business trip. In order to fly I had to use my BiPAP during flight and thanks to the airways not accepting BiPAP machines in flight I had to rent a different machine (VPAP), which had spontaneous/timed mode to regulate breaths per minute.

I moved onto that machine for 48 hrs pre-flight and found to my delight and amazement that I felt better. My husband was also amazed having had no energy for 3 months I suddenly had to be told it was midnight and time for bed. The trip went well although I did get into trouble when the crew depressurized the plane rapidly at 10,000 feet but after a short period we landed and I was able to catch my breath. Much better than other flights without the VPAP when I would turn blue and be acutely breathless for some hours after a flight. Life went on this way but over the last few years I had been feeling progressively older and more tired. I was still working full time and was in very stressful job, which placed 8, 10 and sometimes 12 hour days on me which was extremely stressful and tiring even though the job was quite sedentary.

Thad started using an electric scooter for mobility back in 1992 and even with that it became an effort to get out much. My life became a never ending round of work, sleep and housework at the weekends./ sought assistance at work and eventually with no assistance provided, I went on sick leave.

Following this period of stress and worry I developed a pinched nerve in my neck, which led me to consume large quantities of pain medication just to manage a day’s work and although I returned to work part-time I was unable to sustain this level of work and I landed in hospital with acute breathlessness. Unfortunately this time I did not recover and was unable to undertake most activities of daily living from that time for a period of some six months.

During this time my husband and I found that while using the VPAP machine my tidal volume (the amount of air one takes in one breath) was not consistent. It would vary from around 180 mls per breath to 480 mis on another breath. There appeared to be no reason for this variation that we could see.

My physiotherapist looked at a few of the many papers I had on Post-polio respiratory issues (mostly obtained from the Lincolnshire website) and then suggested that we look further at the secondary references and after a long search through many University libraries we tracked down those relevant articles.

It was a paper by Plum and Swanson from 1958 that for us, made such interesting reading. This paper discusses the damage to the brain from polio and the effect this damage has on the ability to breath while sleeping. [Ed note, we have a copy of this 27 page article]

Shortly after reading this paper I passed it to my specialist who, for whatever reason, chose to prescribe more VPAP ventilation while advising me that I was suffering “anxiety that required psychiatric treatment”.

In desperation I dug out my old volume cycle ventilator and started using that for my afternoon naps and eventually full nights.

“Is there anything sweeter than the first rush of cool air into the lungs after a period of breathlessness?”

Source Unknown

Within a couple of days I was feeling very much improved and then I started looking around for some way of getting to a specialist physician who would be able to assist me with the use of volume ventilation as I was very well aware of the dangers of “do it yourself” home ventilation.

© Copyright – Lincolnshire Post-Polio Network – Volume 3

issue 5 OF 12 JUNE 2001

Eventually through the internet I found the Australian Ventilator User’s Network who were kind enough to inform me of a Clinic in Melbourne some 2000 kilometers away. My husband and I drove down to this clinic earlier this year to find that indeed I required volume ventilation and that amazingly we had nearly the correct settings on the “old dinosaur”.

The issues for me were that I did build up CO2 during sleep but as I trained myself to wake up my CO2 levels did not rise to the same levels as they do for many other people. The breathing pattern I had varied in both rate and depth giving rise to nocturnal hypoventilation and the “panic attacks” were in fact respiratory failure.

We purchased a new ventilator, a PLV 100, and after a couple of sleep studies and some other respiratory tests we were allowed to come back to Brisbane, with the added assistance of phone and email contact with the clinic.

Since that time I have improved so much it has amazed all who see me. I am able to swim a kilometer now having been able to swim just 8 meters in February this year, my pain levels have dropped, my brain fog is much less and I can tolerate cold better than previously.

Thave just this week driven the 2000 kms (and return) by myself to the clinic for a follow up sleep study which determined that I am well ventilated but still having disturbed sleep probably from pain so now ! am on pain medication at night and I am feeling even better than previously. Thave also tracked down an appropriate doctor, newly arrived in Brisbane, who specialises in sleep disorders in people with neuromuscular diseases and he has agreed to provide on the spot care for me with annual check ups from the Melbourne clinic.

I am now looking forward to some years of reasonably stable respiratory capability and in the short term to continuous improvement in my muscles of the shoulder back and chest so that my breathing capacity

is the best that I can make it. My heartfelt thanks to all who have assisted me in this period.

Margaret has sent us a copy of the 27 page Plum and Swanson 1958 article.

Next newsletter long article on respiratory problems. Please ring/write/email us with any questions that you would like answering on this subject.

LEARN A NEW WORD A DAY .. sent in by Richard Dyck <rdyck@ISLAND.NET>

Avoidable \uh-voy’ -duh-buhl\ What a bullfighter tries to do

Eyedropper li’ -drop-ur\ A clumsy ophthalmologist

Relief \ree-leef What trees do in the spring

Bernadette \burn’-a-det| The act of torching a mortgage

Paradox \par’ -u-doks| Two physicians

Rubberneck \rub’-er-nek\ What you do to relax your wife

Counterfeiters \kown-ter-fit-ers/ Workers who put together kitchen cabinets

Parasites \par’ -uh-sites What you see from the top of the Eiffel Tower

Seamstress seem’ -stress! Describes 200 pounds in a size two

Eclipse le-klips’ What an English barber does for a living

Pharmacist \farm’ -uh-sist\ A helper on the farm.

Subdued \sub-dood’\ A guy that works on one of those submarines

© Copyright – Lincolnshire Post-Polio Network – Volume 3 Issue 5 OF 12 JUNE 2001