Brief insights

As well as the full stories of other people's frames (see Other people's stories), I've decided to include a page of 'shorts'.
This is to includes the why's and wherefore's that have led many people to need fixation as a part of their orthopaedic treatment without necessarily giving the whole, continuing story.
It has been wonderful to hear from so many people who've found the web site of help, it makes it all the more worth while to me. Thankyou all for letting me into your lives.

If you'd like your brief tale included then please e-mail me. I will include pictures as well if you have them and e-mail contact points as well if you desire.
Any questions you'd like answered can be mailed to me and I will pin them to the Noticeboard.


Hi Slim,
I haven't read all (but a lot) of the things you have been through, you have really been on a TRIP and not a good one. You will have a good checkup on the 9th though!
My accident happened on Sept. 2, 1985(Monday, Labor Day Holiday here). I was in the backyard, drinking a couple of beers and floating in my pool, when I noticed my cat (Sparkle) was not in the backyard. It was time to start dinner, around 4PM anyway, but needed to find the cat first. So, I went to the frontyard and started looking for her.
The next thing I knew it was seven days later and I was in the hospital. Well come to find out I had been hit by a car, while I was looking for my cat in the front yard. Both lower legs, left arm, right femer, right hip, and pelvis were broken. My Doctor, Dr. Kleiman (Dr.K) and his associates worked all night, the 2nd, on me. I was lucky not to have internal injuries. Everything healed fairly well except for the left tibial fracture. It was broken in two places in the middle and a compound fracture right above the left ankle. The lower fracture healed but not the upper.
Dr.K. offered to put a Hoffman device on my left leg, but I was so stressed I could not handle that idea. During recovery,I had spent 2.5 months in a rehab center with a girl who had one and that was enough for me.
When I got "OK" I had had enough of going to the doctor and decided I would just live with the pain of a non-union. After all, I had a job where I worked at a desk all day, and could modify the activities I did outside to not involve too much walking ( or pay for walking too much with pain).
So, in Aug. of 1996, we found out my Mom had cancer. She lived 6 hours from me in Jacksonville, Fl and I live in Sunrise (south FL). So my husband and I decided to move her in with us. I knew she couldn't live much longer, last Aug. her Dr. gave her 6mos. to a year. So, I quit work to stay home with her while she was still ok, and we could have some quality time together. She had talked me into going to check on my leg back in 1997, and Dr. K said if he operated it could possibably make it worse. So I decided to bear the pain a bit longer.
Moving on, unfortunately Mom died in March of this year and I almost lost my mind and have been going to see a therapist (Renee Garcia) weekly. She has helped me greatly! I have gotten to accept Mom's death. But since I'm not working now, and hopefully, on a tight budget, I won't have to go back to work. I need some type of relief from the pain of the non-union.
I went back to Dr. K, and he informed me of a specialist (Dr. Simom) who specializes in "corrective and reconstructive traumatic surgery". She is the one who will operate and apply the Ilizarov on September 7th.
Thank you for writing me back, and I hope the above isn't too jumbled. I have been told I ramble, and accused of trying to write a book I will be thinking about you also, and if I can think on the 9th, I will say a universal prayer for your checkup !
Thanks again, and keep on taking care!
Janie


Hi Slim,
My name is Kathleen and I am a 25 yo. from Boston, Mass. in the United States.
I was surfing the web when I found your site.
I just had to write to let you know what a source of inspiration it has been.
I was in an accident on July 5, 1999 in which I suffered double compound fractures of the tibia and fibula of my right leg. When I awoke from surgery I had an external fixator.
I was told I will be lucky if I keep my leg. I have read of your experiences and although I do not have an Ilizarov I can relate to what you wrote about the stress of fixation.
I will be wearing the fixator until November sometime, maybe longer depending on healing.
I have been told that this device is the only means of salvaging the leg, so it's here to stay.I can identify with the analogy of the movie Groundhog day. That really made me laugh as I am accustom to everyday seeming the same.
It feels like these pins and metal rods will never come off. So, I just wanted to write you a little note and wish you luck in healing. I guess I can relate somewhat, it's nice to find someone who understands.
Sincerely,
Kathleen


Dear Slim,

Thanks for the interest.
Pagets is a slow acting disease which affects the body's normal process of bone maintenance and results in enlarged, porous and weaker bones.
It was first noted in England in the 1800s; there's a support group there on the net.
My problem is limited to the Tibia in my left leg; a doctor first noticed deformation of the leg over 20 years ago, but, didn't diagnose the disease - which could well have saved me the experience of Ilizarov.
About a year ago, the leg became bowed enough to overstress my knee resulting in great pain when I walk, unless, as now, I use a cane.
Further downsides without treatment would be a complete loss of the knee or a broken leg. Fortunately, the disease has been put in remission by an infusion of a material called Aredia, leading to this avenue of Ilizarov.
As I might have mentioned before, our US Pagets Foundation has no information on the use of Iizarov for the bone straightening.
I gather that the operations are relatively rare as those affected with this are often old enough not to bother and the operations that are done use a technique of removing a wedge of bone from the side of the tibia and bending it back; this, I believe. would result in a leg shorter than original, a situation that my new doctor deplores. So, on to Ilizarov!
I hope that you will continue to mend well and that I can call on you for more expert advice on living with this fixture in the future.
I see the doctor again next month and am targeting the operation itself for the Fall.

Sincerely,
Frank


Hello Slim,

I feel I can call you by first name , after all I have been talking to you for the past 8 weeks or so since I discovered your web site. I will first of all congratulate you on an excellently laid out site, you obviously have some expertise or perhaps some good friends do. Little do you realise that you have kept me sane through some days of despair with my own "cage".
I had a "voluntary" fitting, sounds like a new dress, on 25/2/99 at the Norfolk and Norwich Hosp by Mr Patel.
The reasons seem far from sound at 2am when I have been screaming with nerve pain, however things have improved a little in the last 3 weeks, so much so that I have left of the 15 painkillers a day ( paracetamol/tramadol), and a further 3 x Epileptic drugs...... slowly my brain has began to function again, hence this E-Mail to you.
To back track a little, when I was 14 I broke tib+fib+pelvis and in 1961 (that gives it away !!), the repair left me with 1" shortening and 10 degrees list-a-starboard in the tibia.
This has not been a problem until 10 years ago when the inevitable arthritis set in in the left knee , not surprising since I had been walking on the wonk.
The remedy then was a "nail", but this offered no lengthening and also no straightening of the back. I did nothing at that time, possibly luckily. The knee survived till winter of 97/98 when I was back to see Consultants again.....this time there was now the new Illizarov method and there were 2 fully trained experts here in the hospital.
I guess the rest is history, after much deliberation and talking to other fixator bodies I decided it is now or never. I am fortunate to have husband to care for me and 2 x daughters who live fairly near, so they all offered their support. I also have job that will ,I hope be kept for me.

I know you may want some photos, I am working on this as I have not had much success with sending my scanned pics despite putting them into jpeg compression. I intend to take a few more, especially a view from where I sit......! and various bits of home made apparatus that have helped me.

The latest is that at last visit to Mr Patel I was told to go away and walk on it for the next 6 weeks ( to 13/7/99) when he may take it off.....! AS a result of this I now have been to Physio sessions 3 times per week and am determined to give it my best. The problems are the lack of movement in both ankle ( I only have 4 rings) and the knee, also because of pain/ infection in the early days I was unable to keeps mobile as I would have liked. My quads have almost shrunk so many exercises to try and build these. I am still in some pain, mostly due to the fluid build up.......I could do with that machine you tried out !!!

Please keep up the good work you are doing to all those others out there, I thank you for keeping me going, I dont know how you manage to cope at times but I am glad you are home and can see the light at the end of yor tunnel.
God Bless you Slim,
Liz Hornegold........


October '99
Hi Slim:

My name is Jenny and I also wear an Ilizarov on the right lower leg.
I was in an mva June 9, 1995 with multiple trauma to my lower extremities which resulted in a total of 16 orthopedic surgeries and 4 plastic surgeries to my face.
I had a total of 300 sutures to my face with through and through lacerations.
I had an ilizarov applied in June '95. I had the fixator on a total of 10 months 14 days (who is counting!!!!). I had the full frame fixator with the foot frame and 17 olive wires and 9 half pins. It was one of the lowest points of my life.
While wearing the ilizarov, I had to have the opposite hip replaced related to avascular necrosis to the femoral head as a result from the mva. Needless to say, I did not have a good leg to stand on for several months. I vowed that I would never do it again.
Of, course my story does not end there.
July '98 I underwent an ankle fusion as a result of the osteoarthritis and severe pain in my right ankle. My ortho had to remove 5 cm of necrotic tibial bone tissue so that he would have good viable bone tissue for the fusion.
This means I was 2 inches short on my right with a hip replacement on my left. I had to have the ilizarov applied again so that I could lengthen my leg 2" so that there would not be too much strain on my hip replacement. I again had the full tib/fib frame with the foot frame. This time 12 olive wires and 9 half pins.
This was 15 months ago and I am still wearing the device. I just had 2 wires pulled yesterday in his office. I dont know how your ortho removes wires, but mine just locals the site that the olive wire would be removed from and pulls them through.
I believe some orthos do take you to surgery under general, but it really isnt that painful and the pain only last a few minutes. The half pins or the bigger pins, he just unscrews those out without a local. That isnt too painful either.
I also wear an electrical bone stimulator 10 hours a day to promote healing. I, too, have had my bouts of infections, muscle spasms, and just plain irritability with having to function around the device.
Out of the last 4 years, I have probably been on crutches 3 out of the 4 and have worn an ilizarov over 2 of those years. I am 32, happily married and I have a 6 year old son who keeps me active.
I use a stationary bike to excercise 2 miles every day which helps ROM of the knee. I mow the grass and do grocery shopping and continue to do as much activities as possible.
When I had my accident, my son was only 2 1/2 years old so there was no time for me to stay down!!!!!! He was by far my best physical therapist!!!
I am a critical care RN and hope to return to work when this process is complete. What I have seen many times when I go to the doctor's office is that initially when patients have an ilizarov, they feel extremely sorry for themselves.
I would just like to express that IT WILL GET BETTER!!!
As the initial trauma heals from surgery and the pin sites begin to heal, the device really isn't that bad. I actually prefer this than a cast because my foot is hypersensitive and the cast just about drives me insane.
Without this marvel of medicine, I definately would be dealing with a prosthetic limb instead of the inconvenience of this device. I will always have pain to my right leg and will always ambulate with an extreme limp and have to utilize ambulatory aides the rest of my life but it is a small sacrafice to be as close to "normal" as possible.
As a medical professional, you have done an excellent job on your site. You are extremely informative and I am sure you have relieved the anxieties of many patients who are struggling with this over whelming device.
I applaud you for your efforts!!!!!
Thank you for allowing me to vent my feelings a little!!!

Sincerely,

Jenny (Dayton, Oh)


Dear Slim Haines,

Wow thanks for the email. I want to tell you as I was going through the pictures of people with the Ilizarov I saw my son in one of them.
He is the one on the tricycle, he was only five years old now he is 14 years old. Boy how time flies.
I am attatching a more recent picture of PJ this was the one when he was 12 years old. I don't have one of this time on a disk yet, when I do I will send it to you.
Let me know if you can pull it up.
Yes, you can put my email for a contact with anyone with Ollier/Maffucci and MHE diseases. More than half of our families have gone through the Ilizarov procedure.
The only tips I can give as far as for the patients with these diseases is it is the safest and really easiest surgery that can be done to straighten, lengthen and correct deformities caused by the disease.
If I come across any other support groups I will be sure to pass them on. As far as the US, we are the only group for Ollier/Maffucci and MHE right now.
We do have some centers overseas as well. I will also send you some more links on our group as soon as they are finished.
If you want I can send you a package of information with copies of our newsletters and you can see how many families have gone through this procedure.
We are in the process of updating our websites and changing the addresses to some. I will give you that later.
Thanks again for all of your help.
Hugs, Bonnie
PS Keep up the good work.

For info on Ollier/Maffucci and MHE you can e-mail Bonnie from the Links page.


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