Ilizarov hints, tips and advice.

General Health

Give up smoking.

By stopping smoking you improve your chance of success by a massive 30%. And that means giving up and staying off 'em. This is because your blood will contain more oxygen if you don't smoke and oxygen means better recovery. I have also seen it quoted in differing sources that every single cigarette you smoke slows the growth of new bone by 30 minutes. Take that over 20 cigarettes a day and the results are frightening! If you want to get really scared, check out the link to Bone Healing & Smoking on the LINKS page!

Get as healthy as possible (if possible).

If you have prior warning that you will be having an Ilizarov fixator then makes sure, as far as possible that you are as fit as you can be. The fittter you are, as above, the better you blood flow and the more oxygen that will be transferred to your damaged limb, via the blood, and the better will be the healing process.

Walk more, exercise more. Check with you GP first as he may be able to recommend a suitable course of exercise. Some councils in England run 'Fresh Start' groups for people suffering from various disabilities, injuries or who are recovering from other operations or similar trauma.

Watch your weight.

Get you weight down and keep it down! This is especially important if your injury is to a leg. As there may be a protracted period where your only mobility is via crutches or a Zimmer frame, then you want your body to be as light as possible.[Believe me, I speak from personal experience here!]. Remember that it becomes too easy to put weight on following any operation possibly leading to a lesser degree of exercise than previously so watch the food and booze intake.

Some general hints.

Clothing.

Remember, the Ilizarov is a large lump of metalwork so don't expect the designer clothes you wore on the way into hospital to fit you after the operation. Assuming a leg fitting, underwear becomes the first priority. It must be of wide leg diameter and preferably made of one of the more 'elastic' materials. Believe me, even shorts can be difficult enough to get up over the frame, so 'Y' fronts are right out of the question.

If you are female then a skirt will make life a lot easier. For men, trousers can be a real problem. Shorts are usually OK but if it's winter then that might not be an option. At the time of my surgery (Late 1998) the current sports wear fad was for tracksuit bottoms and shorts that have press-studs the complete length of the leg. Some indeed actually go right to the waist band. These are a God-send to the Ilizarov wearer. I recommend at least two pairs as you will be spending an awful lot of time in them. (Note: At late 2005 I have seen these are still available in some stores and on the web, but you may need to hunt a bit)

If you or an acquaintance are a dab hand with the sewing needle, then you can replace one seam of a pair of jeans or any other trousers with Velcro. This also works really well. [See Clothing Modifications on this site for further ideas.]

Still more clothing.

Still on the subject of trousers. If you are modifying a pair as mentioned above then may I suggest utilising a pair of ex-military fatigues or camo's. These have myriads of pockets of differing sizes and can make the carrying of magazines, bottles etc a complete doddle whilst you're hopping about on your crutches.

 

Cling film.

Wonderful stuff!. Whilst you can get spill proof cups they really aren't the same as drinking you tea or coffee from your favorite mug. Enter Cling film!.

1. Make your drink as usual, hot or cold.
   
2. Tear off a length of cling film around a foot square and fold it double.
   
3. Ensuring that the top of the cup is dry, place the folded film over it, pull it tight around the mug and press it down firmly all round.

 

And that's it. The cup can now be hung from one finger, grasped, put in a carrier bag or transported in any number of other inventive methods. And the contents will stay inside.

This procedure can also be applied to plates, bowls etc with equal success and certainly help free you from the situation where you may have to eat or drink only in the kitchen because you can't carry you refreshement anywhere else.

Of course now there are many variations on the thermally insulated mug and thermally insulated cup about that have a sealing lid as an integral part of the design. A worthwhile investment!

Cordless telephone

If you haven't got one - get one. If not you can guarantee that the moment you have put your crutches down, someone will ring. Also they will ring off 0.1 seconds before , sweating buckets, you lift the handset. Also should the worst happen and you take a fall, it's a life line as long as you carry it with you and do not leave it on the cradle ! Nowadays of course the mobile phone has largely surplanted the domestic phone, but the same proviso - keep it with you at all time, or very near to hand.

Mirrors

A small shaving mirror on a stand may be worth while buying. If, as I did, you have fixing pins through the foot and back of the leg/ankle, you will find it difficult, nay - impossible to ensure that you have satisfactorily cleaned the pin sites without a mirror. Remember - it's your leg, and it's probably going to be down to you to do the pin site cleaning, so any degree of help is worth considering.

[PS as a point of interest I had 20 pin sites and could reckon to spend at least an hour cleaning and drying them all. Don't rush it, it isn't worth the risk. The mirror lets you be certain the site and the pin are clean]

Crutches.

You're going to probably spend a fair amount of time moving around on these things, so here are a few hints that might make things a bit easier.

Listen.

When you're shown how to use crutches, take damn good note of your physiotherapist. This applies double if you've never used crutches before. Even if you've spent some time on crutches, the Ilizarov frame feels very different to moving in a plaster cast or no cast atall. There appears to be a greater 'moment' of motion. Take your time, get used to it.

Stairs.

Stairs are probably the scariest things a crutch user can come across (Other than escalators which you avoid like the plague!). Take your time. Use the bannister or hand rail if there is one, and for preference use one on the side of the injury. With respect to the Ilizarov, if you have a foot frame on REMEMBER it probably overhangs the back of the foot by 2.5 inches or more. So don't bring the injured leg down too close and slam it into the stairs.

Stairs (again)

Get yourself some Bungee (luggage) straps. Choose a length that will fit, slightly tensioned between the upper arm fitting and the lower end of the crutch. When you want to go down stairs and aim to use the hand rail, rather than trying to hold the unused crutch in the same hand as is taking your body weight on the used crutch, just hang it round your neck or over your shoulder. Sod it if anyone stares, it's going to be the frame anyway (or your hairstyle) that gets their (morbid) interest.

Comfort.

After just a short time on crutches, your hands especially will start to feel well beaten about. There are two things which can really help limit the pain and callouses which can occur. Firstly, bind the handles with tennis racquet grip or mountain bike handle bar grip. The difference will be greatly appreciated by your hands and arms. Secondly, try wearing a pair of padded weight lifting or cycling gloves. This is also a great advantage. However be aware that a prolonged use of crutches may cause you elbow and shoulder problems. So again try to keep the body weight down. Also, ensure that the crutches are adjusted to the most comfortable and safe-feeling length for you. Don't have them so short that you have to really lean into them, or so long that your elbows are permanently heavily crooked. Experiment - you'll find the best position by trial and error. Also it might be worth altering the crutch length depending on your footwear. I have found that, when barefooted around the house, I need my crutches adjusted about one notch (1 inch) shorter than if I am wearing shoes. Try it out, you may find the alteration beneficial.

Safety.

This cannot be stressed enough, at all times be aware of the surface of the ground on which you are walking. Don't trust to luck. Just because a floor is supposed to be non-slip when wet, don't believe it. Try the crutch on it first without body weight. You could be in for a shock! Steer clear of freshly washed floors, especially those in fast food outlets (McDonalds and the like). These floors are lethal!

Marble, linoleum, quarry tiles, ceramic tiles, all of these and similar can be dangerous when wet. So watch out!. Road surfaces and pavements are normally fairly slip-free. But here the problems are usually loose surfaces, rough surfaces and uneven levels. All of these can catch you out.

Basically you'll spend an awful lot of time looking at the ground when you're on crutches. But there are advantages.

• You'd be surprised how much loose change and other goodies can be found.
  
• You can ignore people that you owe money to.

As an aside, may I also point out that when you move from crutches to a walking stick many of the same points apply.

• Don't assume you know how to walk with a stick. I did and was very wrong. Ensure you're using it in the correct hand. The hand to use is the one on the opposite side to the injury - I know that seems wrong but I assure you it isn't.

• Ensure that the stick is of the correct length for you. This should be done by either your physical therapist or the walking aids department of your hospital.

• Ensure that the stick's rubber foot is kept in perfect condition. Even though you're hopefully far more mobile by the time you've got a stick, you still don't want to go taking any falls

Now some hints specifically aimed at those of you who are wearing or expecting to get a Femural ilizarov frame. My thanks to Cindy Clute for her help here.

Cindy mentions that the best item was the cutaway toilet seat - apparently they are made for people with hip replacements. So check with your hospital or local health centre for these. She also makes a wise suggestion and would tell people who are planning an Ilizarov to get their crutches before, and practice. Whilst I found the tibial frame different to a straight cast, Cindy observes that, with the femur frame,

It is so scary - a femoral cage does not so much unbalance you as makes you wider/heavier than you are used to - I had to angle my crutches away from my hips, as the top half-pins jutted out quite a bit.

 
She also observes that whilst Tibial braces tend to play havoc on ankles, femoral do the same to knees!! She states

Believe the Doctor when they tell you unless you bend your knee from the start, you'll have problems with it. It gets hard to get into cars, etc. when your knee won't bend.

 
As with the tibia frame, clothing is easy for females, skirts - skirts - skirts. However she was in hospital with a fellow who had one on his femur and snap-on sport pants are the only item. Very stretchy underwear, as you can imagine, at the top of your thigh, the cage is very wide, and underwear has to stretch. So no boxers for guys.[Unless they're like the type I wear which are very stretchy anyway because I'm a fat sod! - Slim]
Apparently there is also something called an ObusForme pillow. It's a Canadian invention, essentially a curved pillow for neck support. It was invaluable to put under the cage, and cradles it. Because your sleep is limited to one position (compared to the unilateral) you tend to wake up extremely sore.
Pin cleaning is easy because the sites are right in your lap so to speak. None of them are under your thigh. As Cindy rightly observed I have to stretch to clean mine.
And finally, usually, femoral lengthenings take longer than tibials, So hang in there!

Bob, from Houston Texas, who's wife Bev can be seen in Gallery Three of the Rogues gallery has offered the following about the extremely expensive sponges widely used in the US to cover the pinsites on Ilizarov frames.

My wife has had her ilizarov fixator for a little over a week.
The hospital gave us a few packages of those little sterile sponges to use, but we are running out of them and I have been quoted anywhere from $60 to $90 for a package of 30 (my insurance does not cover home care supplies).
There are 22 pin sites, so we're talking $300 -- $450 a week here!!! This is like outright robbery.
The doctor's office has advised us to instead use an antiseptic lotion and foam cosmetic wedges. They are 120 for $5.99 at Walgreen's and take only a minute or two longer to install (a slit has to be snipped in each one with a scissors).

Bob the followed this up with the next e-mail

So far the foam cosmetic wedges have worked perfectly -- we use the plastic clips that were intended for the Ilizarov sponges to hold the wedges in place.
Even less expensive than using a drugstore, my daughter found cosmetic wedges on sale at a beauty supply store for US $3.99 per bag of 100.
Thus, our daily cost for 22 pinsites totals only 88 cents instead of as much as $66 for the real sponges.

The antiseptic/antimicrobial skin cleaner which has so far worked quite well for the pinsites is called Hibiclens (chlorhexidine gluconate).

Best wishes,
-Bob (Houston, Texas, USA)

As always I would recommend checking out everything with your doctor first before trying it out.
If your doctor doesn't advise the use of a skin cleaner, then don't do it!
To paraphrase what seems to be on every packet these days;

Always read the labelling with your Doctor first!

I recently received an e-mail from 15 year Old Lauren Sullivan. She wished to add her voice to the important topic of exercise and Ilizarov fixation.

Dear Slim,
My name is Lauren Sullivan I'm 15 years old and for the past 3 yrs. they've been trying to lengthen my left leg!
My left leg has always been 2 inchs shorter than my right leg, it was just there from birth. However, since I was so young they decided to lenghen my leg through bone grafts and a steel rod .... well to make a long story short .. 3 yrs later and after 10 surgeries my body would'nt accept the cadaver's bone.

So, they put me in an ilizarov from my hip all the way to my ankle for 7 months.
I had to be streched 2 inchs! The pins tore through my skin and I experienced a pain that I did'nt know existed!
It was horrible! I was on many pain pills (Percacet, Darvocet, Vicodin) and sometimes went days without eating and on top of that I did not do my excercies!

PT was a big part of my life back then (exspecially since I had to quit school)! My advice to all Ilizarov wearers is to

DO YOUR EXCERCISES!

 
Put weight down on your bad leg ... it stimulates bone growth and I learned the hard way that if you don't bend and straighten your knee when it's immobilized it will either get stuck straight out or it will get stuck bent and they'll have to do surgery to either bend or straighten it!
Oh and always keep your leg as clean as possible!!

I wish all Ilizarov wearers the best of luck and a pain free recovery! Oh and now ... after all that .. I'm perfectly even !!!!!

And I'm now glad I did it ... no pain no gain!

The latest tip I've had comes from self-confessed 'Old school' fixator wearer, Sean Pritchard.
He sent the following e-mail.

I won't bore you with stories about my frame(mk2) other than to say that I've had one from hip to ankle for 14 months,and before that hip to knee for 2years 4 months so know a little about them.
Maybe it's already been mentioned,but a product called "Bactroban",a type of antiseptic vaseline is very good for keeping pin sites moist and the skin supple.
As I'm sure you know if the skin around the pin site becomes hard it doesn't "give" and the they really start to hurt.
Since my first frame was fitted at a time when pin site care was different to as it is today I'm "old school" and these sponges they use now may mean the above is of no use,but if it helps anyone else out then I'm happy.
Best of luck to all fellow sufferers. Sean

The only thing I would add to Sean's tip is my normal advice, check with your medical professional BEFORE trying anything other than their prescribed activities, drugs, creams etc whilst wearing fixation systems.

The following is a list of tips and suggestions from Melinda Dillon. [See her story via the TALES page]
My thanks to Melinda for these useful snippets of advice.

1. After my accident - I was so weak when I got out of the hospital I literally could not sit down or stand up off the toilet by myself. The bathroom toilets and raisers are really expensive from a medical supply company. However, walkers are really cheap and can usually be rented. I had the smallest walker - turned around backwards - over the toilet so I had handles to sit and stand with. It was a great feeling of freedom to "go" alone after having to have help for over 2 weeks.
   

2. After surgery of applying a fixator, I took a Zinc suppliment as it promotes cell regeneration and growth. My pinsites were clean and healed within 4 days after both ilizarovs were put on. Take no more than 30mg / day - I was actually taking 50mg / 2 days.
   
3. Crutches - I highly recommend what we call the Canadian Crutches. These are the metal crutches that wrap around your forearm rather than the wooden crutches that come up under your armpit. These are much more comfortable as well as being more manageable, more stable, and more manuverable.
   
4. Final advise - don't be too afraid of the ilizarov. It is a medical apparatus therefore you must be careful with it. But don't let it stop you from life while you have it on. I banged it into doorways, against chairs, etc when going to a restaraunt for dinner or something. (Not all public buildings are set up for walkways wide enough for crutches). It only stings for a second and then your back to the "normal" everyday pain you experience while wearing a fixator. Other activities I enjoyed include: Movies have handicapped seats available, football games have handicapped seats, dancing clubs (usually sat in back at a table with leg propped up), and of course visits to and from family and friends. I even went to work with both of my fixators. AND to attract even more attention, I decorated it with battery operated Christmas lights and little 1 inch decorations both Christmas' I had the thing on! HA!

I'm awaiting pictures of Melinda's christmas decorations as I hope to get a selection up on the site for this Christmas. So anyone out there with suitable decorated framework, please send me a copy at the usual e-mail address of slim@ilizarov.org.uk. Ta!

And now yet another suggestion from Melinda and it's certainly going to make things easier if you've got lots of pins and wires on your frame

I had the doctor cut off the bigger pins just outside the frame so you didn't have this 3 - 6 inch long pin sticking out to cause more difficulties with clothing etc.
You can also have the smaller wires cut off just outside their frame attachment.
I then went to the automotive store and bought a foot section of vaccuum hose (I then cut into 3/4 inch sections and placed over the big pins to prevent scratching/cutting myself or clothes and sheets) and some 1/16 inch hose to put over the smaller wires.
This was a life saver and MUCH more convenient than having those long pins sticking out for months. And it doesn't touch anything inside the frame so you don't have to worry about causing any problems.
My doctors thought this was great!

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