Hilltop - External Tibias - Dr. Amar Sarin - 2011 - Journey to a new beginning

[Arche]

Also, I would like to add I'm still seriously considering India, and that's why I'm upset.

[sniper]

I have also considered India with Dr.  Sarin and am a bit distraught at the posters who have gone there and stopped updating their diaries.  then again, you have to remember that some members have done the same for longer and have returned later.  brother11 for example didn't post for 2 years (from june 2009-june 2011) due to complications that had to be fixed in China.  I don't think it's fair to pass judgement this early

[shoryuken]

im not judging anyone im just a little worried

[SysOp]

Many people start a diary and never finish it. 95% of the people who find out about LL from this site and have the surgery don't write a diary at all. If someone chooses not to update their diary for a long time or ever, that's mostly means that they are done with LL and didn't feel like telling their story anymore. Thats why the veterans that write full diaries are so revered around here.

Reading diaries is good research, but you really should have a consultation with your doctor before you decide that you will do your LL with them. Words on a page are important, but talking to other patients in person and seeing the facilities the doctor uses is a critical part of the decision making process.

[a.watanbe91]

Hi :)

I saw that you are going through the leg lengthening process with Dr.  Sarin, I am really thinking about this in the future after university.  I want to ask if he would do 10cm and what the life is like in India? I also want to ask about the information put on the forum that Dr.  Sarin wouldn't operate on any patients who have suffered/suffering from depression or other mental illnesses, I am suffering some at the moment, do you think that will stop him from accepting me for the procedure in future?

Alex

[Dookieman]

Hey Hilltop - I enjoy reading your journal. Hope you can give us an update soon!

[hilltop]

Hey Friends

Long time, No see, Dude I am sorry.

I knw its been long I have written anything in this diary, mainly because of many ups and downs I have gone though in the last 30 days. Last time when I wrote, I was 3.2 cms, Now I am ##cms( read the post till the end and you will find out) :-)

An mm a day, Still destination far away

At 3.5 cms, I went to the hospital for my X-ray and check up. The doctor took the measurement of the  the gap between the legs. I was shocked and surprised to find that my left leg was at 2.7cms while my right leg was at 3.2 cms. I was thinking “ Now that’s not fair. It takes hell of an effort to turn each mm every day”.

mm gone with the wind, vanished in thin air.

8mm lost in left leg..phew that’s said because that means another 8 days of pain more. I asked the doc why such thing happened. He told me that it happens because of the tension in the pins. The pins try to pull the bone back.(I didn’t understand much, do comment if anybody has any Idea about it). The good part was till now I had no ballerina in any of the legs.

Seven beautiful days before the storm.

I went back home a bit upset. The next seven days I distracted 7mm in each leg(continuing 1 mm a day).After this things got worse.

I have balloons in my feet.

In the last 3 days I got extreme swelling in both my feet. And believe me friends, it was extremely painful. The nerves in my both feet were paining a lot. The swelling started when I sat in the wheel chair for almost 5 hours continuously. And then it didn’t stop. It felt as if somebody just blew some air in my feet. The skin was stretched a lot and I couldn’t touch the skin. I asked the doc and he told me to keep two pillows below the feet and stop distracting for few days. I decided to stop distracting for 2 days. The swelling reduced and I started distracting again. Though the swelling was still their, but it had reduced and pain was also less.

Its high time now, the balloons have to burst.

 I was at

4.2 cms in left leg and

4.6 cms in right leg

At night I couldn’t move my legs. My feet had become water balloons and do to pain I couldn’t exercise much during the last ten days and due to which I was feeling that I have started developing ballerina. I was also not able to completely straighten my knee for that last five days. It was bent and I couldn’t straighten it.

Its time son, to visit the hospital.

Three days I waited but the swelling got worse and so did the pain. It was so bad that I couldn’t lift my leg with the help of my hands. So finally I went to the hospital.

Two days stay in the hospital.

Going to the hospital was really tough since I had extreme pain. Just a bit movement of the legs was painful and since I couldn’t straighten my legs, I looked like a child with twisted bones as if I had polio.
In the hospital, a number of checkups were done to check functioning of different parts. My nerves were fine. The problem was with the arteries. The size of arteries had reduced and they were not allowing the blood to circulate, hence the blood had collected in my feet. They gave me ivy drops with 100 mg tramadol. After 2 hrs I got relief. I was admitted in the hospital. I was given some medication for the swelling and the nerve pain. Things got better the next morning.

Knee straightening time.

The doctor tried to straighten my knee by putting pressure with his hands. It was extremely painful. He told me that he’ll straight them by pressing them under anesthesia. But the same day I tried to straighten them by putting pressure myself and at the end of the day. I could straighten both knees. So knee problem was solved. But the bad news as I mentioned earlier was that I had ballerina still to correct.

Another Surprize struck me.

The Xray was taken and after the measurement I found out the following

Right leg—I had turned 4.6 cms.    ….Xray measurement showed 5cms

Left Leg—I had turned 4.2 cms…….Xray showed 4 cms.

So, the bad part was that there was 1 cm gap between both the legs. This time I didn’t ask why such a thing happened. I just want to go by the xray measurement. In Xray I could see the 1cm difference between both legs.
So  I went back home and started distraction again. I felt more energy in my legs and the going looked easier till 1 cm.
I had completed 6 cms in my right leg and 5.5 cm in my left leg. Now I had a lot of nerve pain in my left leg.. It was difficult to distract.I couldn’t put weight on my leg at all as it pains a lot.

Current distraction as of today:

Right leg- 6cms

Left Leg- 5.8 cms

After 2mm in another two days I am going for removal of the frame. I hope this time the Xray doesn’t give me any shocks…I will keep posting my recovery details after my frame is removed.

Thanks

Hilltop…..

[hilltop]

I currently live in US and I am seriously considering LL in India.  Is it possible for me to return to the states around 10-15 days after the surgery and go through the distraction period here at home rather than staying there.  it seems as though I may only need send my x rays taken from US back to Dr Sarin to communicate my progress.  I would return to India as soon as the distraction is over to get the external fixator removed.  If this is possible, it would save a ton of money since a lot of the costs involving physical therapy and x-rays are covered under my insurance here in the States.  what do you think?

Hi Samarth,

According the my experience, its not a good idea to stay that far away.

My doctor wanted me to stay close to him so that he can visit me everyday but since that place was costlier I decided to stay at a place one and a half hour away from my doctor. Doctor allowed since I was staying with crazy +6 who is quite experienced now. But still I had problems like nerve pain and swelling. Problems occur suddenly. I was painless and distracting smoothly but all of a sudden in five days things changed drastically and I was in extreme pain. You cannot tell how your body will react. There are two broken bones and you are trying to lenghthen them stretching your muscles, nerves and tissues. Man don't take any such risk. Take your own call.

Hilltop..

[hilltop]

nothing wrong with that.  I cried a lot too, it is natural.  Any human far from home going from healthy and functioning to suddenly wearing 2 frames and broken bones will feel vulnerable.  In fact, LL is such a unique experience in how it can really humble and force you to be strong. 
You will survive, it may seem like a long time, but before you know it, distraction will be over and you will feel better.  After finishing and recovering you will most likely come through a stronger person and in life, I think that is a good quality to have. 

Hi craig
Thanks a lot for your support.

You are right. I am almost free from distraction and I didn't realize how time passed.

[plastikman]

Wow Hilltop,man you went through a lot!!

Is really good to hear that the things got better and you will be frame free very soon.

Thanks for the update!

Stay strong,we are rooting for you!

[hilltop]

Seriously?

That´s a nice restaurantbill when me and my girl is out!!

I never thought that it could be THAT cheap. How do one get a room together with others?

This makes my budget way overrated and there will be quite enough for my femurs if I live like that 

Hope you are doing fine Hilltop!
btw - where are you from?

Ha Ha...Ya, I knw its really cheap. But that is just for staying there and simple vegetarian food. Non- vegetarian food, supplements(protein, calcium, vitamins etc), fruits and all other things cost me extra which add on to the bill. Also the facilities here are not that good so I would advise you to not go my way. I had monetary problem and I didn't want to wait another year for this so I decided to go this way.

You will have two broken bones and many painful nights so I don't think you want to compromise at all on comfort. I think its better if you leave this on dr. sarin. He's preparing a facility where all the LL patients will stay and its in the same place where Dr. sarin lives so that he can visit you often. I shifted to this place 4 days back and its really comfortable here. Its not 100% ready but its better then where I was staying earlier.


Thanks

Hilltop...

[hilltop]

Wow Hilltop,man you went through a lot!!

Is really good to hear that the things got better and you will be frame free very soon.

Thanks for the update!

Stay strong,we are rooting for you!

Hey Plastikman,

Thanks for your wishes.

Hilltop..

[hilltop]

Hi Hilltop. I will be coming to join you in a little over a month, also for tibias.

I am sorry that the isolation and boredom is getting to you. I hope you told your family and friends about the surgery so they can e-mail and call you for support.

The best way to combat extreme isolation is to put all of your focus into something that you find challenging and productive - put the strong and true message into your subconscious that you are growing mentally and not just physically. If you have a laptop, perhaps you could learn web design and create a website. Perhaps you could sign up to "Squidoo" and create a "lens" about your experience. It's also very important to think about and really enjoy the small things - for example, when you have privacy in the bathroom or shower, focus on how good it feels to be safe and by yourself. Hope that helps a bit.

Hi Dryani

I haven't told my family and will only think about it once I am walking without support.
Really well written and helpful. Thanks.

I have completed distraction. I am surely going to try some of the things as I here for 15 more days after frame removal. I think I won't be able to meet you since I will return on 25th March. But I might come back to see how you are doing.

Take care and All the best for your surgery and journey. :-)

Hilltop...

[sniper]

Hey hilltop, glad to hear you are doing good man! We figured you may have ran into some complications and that was why it took some time for you to update.  That is usually the case with most users.  You are right: there are two broken legs and you are pulling the bone apart each day and have pins piercing through your bones, so it is only natural that some complications may arise.  I hope you have a good recovery!

If you don't mind me asking a few quick questions, why did you choose LON over regular external fixators, and are you using lizarov or monorail, and why? I personally am also considering Dr.  Sarin and have thought about LON, but when i saw a video of the rod removal and saw how big the cut was at the knee to take the rod away, it kind of made me reconsider.  However, you have only had your surgery 2 months ago and are removing your frames soon, and have already distracted basically 6mm in each tibia, so that is insanely fast. . . . when do you expect to be able to walk somewhat again?

By the way, if you can answer one last thing for me i would greatly appreciate it.  I know Dr.  Sarin charges $10,000 USD for the surgery but that's all that's covered, right? What about your knee problems and foot swelling, did you pay extra for him to fix those complications? Also, how much would you say you pay per month for rent, food, physical therapy, etc?

Would really appreciate if you could take some time to help me out with these questions, thanks!

[hilltop]

Dear Hilltop.

What you are doing is great.  and its great that ur started your own diary.  i have read all ur post and i will read more and more. 
excited to see your day to day experience.  even i plan to undergo this surgery pretty soon.

i am keep telling myself, " that is few months of mental and physical struggle, but freedom, excitement and happiness for rest of the life".
so great job.

keep us updated.

Hi dreamhigh,

I agree with "few months of mental and physical struggle, but freedom, excitement and happiness for rest of the life"..

I haven't given day to day experience but I have tried to include all major events that have occured till now.. I am not that good in writing diary but I am trying to help all the furture LL patients.

Thanks

Hilltop..

[hilltop]

Hey hilltop, glad to hear you are doing good man! We figured you may have ran into some complications and that was why it took some time for you to update.  That is usually the case with most users.  You are right: there are two broken legs and you are pulling the bone apart each day and have pins piercing through your bones, so it is only natural that some complications may arise.  I hope you have a good recovery!

If you don't mind me asking a few quick questions, why did you choose LON over regular external fixators, and are you using lizarov or monorail, and why? I personally am also considering Dr.  Sarin and have thought about LON, but when i saw a video of the rod removal and saw how big the cut was at the knee to take the rod away, it kind of made me reconsider.  However, you have only had your surgery 2 months ago and are removing your frames soon, and have already distracted basically 6mm in each tibia, so that is insanely fast. . . . when do you expect to be able to walk somewhat again?

By the way, if you can answer one last thing for me i would greatly appreciate it.  I know Dr.  Sarin charges $10,000 USD for the surgery but that's all that's covered, right? What about your knee problems and foot swelling, did you pay extra for him to fix those complications? Also, how much would you say you pay per month for rent, food, physical therapy, etc?

Would really appreciate if you could take some time to help me out with these questions, thanks!

Hi Sniper

Thanks for your wishes.
I chose LON for two reasons.

1) I had limited time. Just external frames without nail for 6cms takes 6-8 months and its still not certain...one can take 12 months also.

2) I couldn't imagine myself with these frames on for 6+ months. Though they have given me my desired height but I still seriously hate them. This pins piercing your flesh and pain...its hell.

I am using ilizarov. I wouldn't suggest monorail to anybody. The pin width in monorail is huge, almost 10 times that of ilizarov. Such a huge pin cutting your skin is awful. I have seen the monorail device of Crazy +6. After seeing that I know I cannot get monorail done ever even if someone gives me a million dollar.

Don't worry about that cut because that is done under anesthesia and you don't feel the pain. The scar is not much visible and if you want perfection you can get the scar removal done.

If your target is 6cms, then just make a choice.

1) Pain of 2-3 months and then rod locking. Go back to life without pain though you need to be careful.
or
2) Pain of 6-10 months and a psychological pain which hurts you everyday when you think..."God when will the bone consolidate fully so that I can walk".


Pal, I chose the first option, now its your turn to decide. I did 6cms in 74 days. Doing 1mm a day and stoping for few days. During 1mm till 3.5 cms is easy and I think anyone can do it easily. After that its a problem. So I had to fight only for 2.5 cms.

All the complications are covered as the part of the package. I have not taken any accomodation with the doctor as of yet, I am only with the doctor for few days just before frame removal. Before this I was staying in a shared apartment which was quite cheap. The details of it are given in the first page.

Phew....those were a lot of questions...I am not used to writing that much....anyways I have done it :-)

Hilltop.

[hilltop]

And sniper ,

 I think it will take me around 1 and a half month to recover and start walking without cruthes..Lets see how it goes...Will keep everybody updated about my recovery.

Hilltop...

[hilltop]

Hey guys I am feeling tired now...I will try to answer rest of you tomorrow
. Take care

Hilltop...

[SysOp]

Thank you for your detailed diary Hilltop. Many people who come to this site get excited about the possibility of getting taller and forget that leg lengthening is not easy. It takes mental strength, perseverance, and absolute conviction to achieve success. Congrats on your gains so far, the worst is almost over.

[sniper]

Thank you for the detailed reply Hilltop! I seriously cannot express how much i appreciate this type of quality, pinpoint information; especially from someone currently undergoing treatment.  This is exactly why i love to get different points of views from people still in the whole process. . . from the way you were describing everything, it seems like there is no way in hell you would consider keeping your frames on for 6 months longer.

I hope your fixator removal process goes smoothly and quickly.  Keep us updated, and Thanks again!

We are all rooting for you and wish you a quick recovery  :)