Limb Lengthening Forum

Please login or register.

Login with username, password and session length
Advanced search  
Pages: [1]   Go Down

Author Topic: Internal Femur to correct LLD  (Read 3709 times)

0 Members and 1 Guest are viewing this topic.

DanaKin

  • Visitor
  • Offline Offline
  • Posts: 4
Internal Femur to correct LLD
« on: April 20, 2014, 05:46:24 AM »

Hello! My name is Dana, and I just recently had LL.  During my recovery I have had so many questions and have had a really hard time finding answers and support from people who have gone through the same experience.  Hopefully this Diary can help someone else as well as myself.

HISTORY:
As soon as I was born I had Leg Length Discrepancy. As I grew, so did the discrepancy.  Please don't discriminate based on my height. We all want to be normal, right?  I am 5'10" and had an LLD of 2" (5cm) by the time I stopped growing. I have been living with heel lifts and shoe lifts in and on my left shoe for several years, and I can tell you this is definitely not ideal. You cant get lifts for this much of a discrepancy and still function normally when your Femur and Tibia are both 1" too short.  Your knees don't end up in the same place.  Your back and hip constantly hurt and I was having my hip wear down and dislocate constantly.  I haven't run in years.  I am 27. I am American, but have been living in Australia for 2 years.  And guess what, you can get this surgery for free here (at least for LLD. I don't know about cosmetically). You just have to be on the wait list for a whole year.  And you don't find out until the week before surgery that you are having and internal device.  You don't find out until the day of, that they meant the Precise nail. 

SURGERY and STRETCHING:
In January I had my LL surgery using the Precise nail on my femur.  I was in the hospital for 6 days.  It hurt SO much, but I have a low threshold for pain.  After 1 week I went to visit my surgeon and he gave me the Remote for the precise nail to take home.  I lengthened .5mm twice a day until I reached 23mm.  It took one month. The first few days it didn't hurt, then the pain came on fast.  I called up my doc and asked him to give me a prescription for OxyContin, like  I had been taking in the hospital.  The pain was unbearable. The meds made it so much better, but still very hard. 

For the length I needed to achieve, I couldn't imagine using any other device.  External is to cumbersome, and there is risk of infection.  The twisting that other nails use would have been too painful for me.  I didn't even need to consider weight bearing.  Even if my nail would have allowed it, it would have hurt too much.  This was the nail for me. 

By  the time I had stretched about 17mm, my lower leg started to go numb.  I kept on stretching.  2 days later my lower leg was burning like it was on fire.  It got worse every day, until I was laying in bed t night keeping my husband up with my crying.  Pain meds don't help pain form nerve damage.  I called the doctor and he told me to stop stretching for 48 hours.  I was so happy I could stop, but after going through so much I didn't want to not achieve my required length. After a 3 day break from stretching the burning had stopped, but I was still numb.  I continued to stretch for the next week.  It was very hard since the burning was starting to come back, but not as bad as before.  I made it to 23mm, 2 mm short of 25, but close enough for me.  The measurement of discrepancy is not an exact measurement, and I was happy to be within the threshold. 

RECOVERY:
During the month of stretching I lost quite a lot of muscle strength.  I lost a lot of my range of motion in my leg. I lost a lot of weight in my whole body.. except my arms were super strong.  And, I don't know about anyone else, but it really messes with your mind being a cripple.  Especially when it was your own decision to do it.  But I gave it 6 weeks for my bone to heal after stretching. After I stopped stretching and my Dr was happy with my length and healing, He told my I had to get off of the narcotics.  And that makes you feel awful and messes with your sleep patterns.  But it's not that bad if you don't wait too long and don't consume caffeine. 

After another 6 week of bone healing, I went back to my Dr, and he told me it was time to start walking.  My lower leg is still numb.  He said it can take many months for the feeling to come back.  But My muscles are all still working, and it is only the sensation on my skin that is missing.  If it doesn't come back within 12 months, it probably never will.  But, if I had know that I would lose feeling in my leg before surgery, I still would have done it.  Also, my hip is sore and I still can't lay on it.  The screws irritate it. It is so annoying.  My Dr says that the rod doesn't have to be removed unless I want it to.  And I think I will after all is said and done. 

After leaving the Dr, I started walking on my crutches straight away.  It was not easy after being in a wheelchair/ on crutches for 2.5 months.  But, not as bad as someone who needs to stretch a much longer amount.  After 2 days of walking I lost one of the crutches, and started exercising my leg.  I've been walking a lot.  It does hurt. My leg feels like a rock, and my knee is very stiff.  I can't afford to see a PT.  This is so different from anyone else who has this done.  Usually they spend tons of cash to get the surgery, and PT is not a problem.  But I have had the surgery as a poor person.  I have been scouring the internet for stretches and exercises to be my own PT.  The stretches help not feel so stiff.  But after a few days of walking my hip was stiff too, and now it's not.  So I think I just have to keep exercising.  I'm excited to go buy a pair of running shoes now to do exercises in that won't require a lift or build up!

After I can walk with no crutches I will be happy.  How long will it take me to get to that point? and to a point where I can walk naturally? Any ideas on what has worked for anyone else during recovery as far as exercises and stretches and frequency of exercise?

I will be going back in October to have my tibia done, so I want to be back to normal for a few months before that happens.  It will be a lot better for me mentally to be completely healthy before they break me again I think.  Any advice would be greatly appreciated!
Logged

DanaKin

  • Visitor
  • Offline Offline
  • Posts: 4
Re: Internal Femur to correct LLD
« Reply #1 on: May 02, 2014, 01:34:11 AM »

Sorry for the late reply.  I've been having internet troubles...

Thanks for the insight.  I have been going to the pool every day for nearly two weeks now.  I've been doing walking, stretches, kicking, and it has really helped.  It seems like The pain I've been having in my knee has gone once the muscles strengthened.  I can walk around the house without a crutch now and use it occasionally.  I'm going to go to my GP today for them to fill out papers for me to return to work.  Very excited about that. 

As far as I know cosmetic LL is still illegal.  I tried looking it up, and found an article dated last year that still says it is banned.  My Dr. is Dr. Walker. He is very competent.  He has done several LL ops, but mostly does joint replacements I think. 
Logged

Adriano

  • Jr. Member
  • *
  • Offline Offline
  • Posts: 183
Re: Internal Femur to correct LLD
« Reply #2 on: May 02, 2014, 02:43:42 AM »

Please ask him if he can do CLL and how much it will cost?

it sounds scarry that you only lenfthenned 2.5cm approx and you were in so much pain.

How am i going to deam with 8cm?  :'(
Logged

DanaKin

  • Visitor
  • Offline Offline
  • Posts: 4
Re: Internal Femur to correct LLD
« Reply #3 on: May 02, 2014, 05:30:19 AM »

Adriano, Are you living in Australia? 

My doctor does public and private patient surgeries. If you are in Australia you can call the Sydney Bone and Joint Clinic and ask them about surgeries.  There is also a Dr. O'Carrigan who does this surgery.  But I doubt they would to this surgery on someone who does not have a medical need for the surgery. As stated above, it appears to be banned for cosmetic purposes in this country.  If you really want to get LL, you may need to go overseas.

As for stretching 8cm, every patient is different.  And there are so many factors that can contribute to how you will handle it.  As I stated earlier, I don't have a high threshold for pain.  You might.  I needed the hard drugs or I would not have been able to deal.  I only had one month of stretching time.  And I was over it.  It is very hard.  Your bone, muscles, ligaments, skin all have to stretch. I have read for some people that the worst pain is from the skin stretching.  I had not skin pain whatsoever. Mine was all in the bone and muscle/ligaments. But every stretch you make, you are essentially re-breaking your bone every day.  I did my femur, and it is said to hurt more than any other broken bone.  It's the only bone I've ever had break so I don't have anything to compare it to. After stretching stopped, the pain diminished significantly within a week.  I could tell the difference the very next day in the level of pain.

But, what would worry me if I were you is the nerve damage that is possible.  My nerves in the lower leg are not healing as of yet at least.  The longer you grow the more chance there is of this happening. 

I have felt very depressed lately with being a cripple.  And it always goes through your head that you did it to yourself.  You have to be very mentally strong to do this.  8cm is going to be a very long and hard road.  It's the length of time that really gets to you.  Especially since You will be doing BOTH of your legs.  I could at least get around on crutches and my good leg the whole time.  Make sure you get enough sunshine, and it will help. Become independent as much as you can, and it will help your mind. 

I suggest if you do go ahead with the surgery, to prepare your body first. 1) build up your upper body strength ahead of surgery.  You will need it immediately, and if you wait till you are broken to start building it, you will be so exhausted.  I was. It will really help if you are able to push yourself in a wheelchair, move your body all by yourself.2) Get your muscles and tissue ready by stretching.  If you are stiff to begin with, you will hit the pain earlier.  If you have more play in your tissues, it will take longer for the pain to get bad.  I wish I had thought of that before surgery. And I will be doing stretching before my next one. 3) Stop taking Caffeine. You will be on pain killers, and will be for a long while if you go for 8cm.  You will become dependent on them. You will probably have to increase your dosages to keep the pain away. When you are ready to come off, you will get sick.  It will be much easier, you will get less sick if you are not putting caffeine, alcohol, and unnecessary sugar and salt into your body. 

You may want to ask some other patients who did a similar amount of stretch on the same part of the leg as you intend to.  The more similar the situation is to you, the more of an idea you will get.   From my experience, yes it was very painful. But, I am still going to get my tib done. 
Logged

DanaKin

  • Visitor
  • Offline Offline
  • Posts: 4
Re: Internal Femur to correct LLD
« Reply #4 on: May 02, 2014, 05:33:45 AM »

Has anyone here who has had LL done have any experiences with nerve pain/damage from their stretching? I am wondering how other patients have done with their nerves healing.  Did they heal? and how long did it take for the sensation to return.  I am 3.5 moths post op and still don't have sensation on half of my lower leg.  I'm just finding it hard to be optimistic about it returning.  But if anyone has had experience with it it would greatly help!
Logged

Sweden

  • Sr. Member
  • ***
  • Offline Offline
  • Posts: 888
Re: Internal Femur to correct LLD
« Reply #5 on: May 02, 2014, 08:04:28 AM »

Has anyone here who has had LL done have any experiences with nerve pain/damage from their stretching? I am wondering how other patients have done with their nerves healing.  Did they heal? and how long did it take for the sensation to return.  I am 3.5 moths post op and still don't have sensation on half of my lower leg.  I'm just finding it hard to be optimistic about it returning.  But if anyone has had experience with it it would greatly help!

I still have minor numbness around the pin insertion close to the ankle. That's it. Everything else is fine and my entire front left shin was totally numb.
It was scary especially when I took a shower, even 6 months post frame removal, bc I could t feel the water on my leg.

Now everything is fine - regarding nerve issues.
Logged
173cm before LL with Sarin, jan -13. Now 180cm tall. Considering 5cm on femurs.
Pages: [1]   Go Up