Dr. Giotikas - external tibia/Stryde - Diary 2018/2019

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About me

• young
• 1,60m
• current goals: about 5cm height increase with external tibia TSF frames
• later additional 5cm with Stryde
• surgery: 15.10.18
• lengthening start: 24.10.18
• staying in an appartment in Athens with 2 family members

Update 1

 
Pain
I was already told that in the first days in the hospital there's less pain as they constantly give you painkillers. I feel like heaving very heavy lower legs, very bad muscle ache. Sometimes my legs feel very hot inside. My right knee was hurting in the beginning since I had a condition there before. And only on the second day my knees felt like almost bursting when I was bending them. So far it is bearable though. It's a mix of heaviness, heat, burning and pressure. (not at the same time)

Walking
On the first day, I could only move my feet a bit, not my legs. The Dr. suggested to start walking on the next day since I seemed tired.
On the second day I walked a few steps. My right foot was weaker. I'm afraid to put my whole weight there but in theory it should be doable.
On the third day morning I was very happy because I thought I improved a lot. Walked longer, had less pain. But then I was sitting on the toilet (not the first time), my knees were hurting weirdly, my left foot began tingling and becoming warmer. After I went back to my bed I noticed that a little part of my left foot was now more numb then before. And since then my left foot becomes hot and feels like burning when I walk. Now my left foot is the weaker one and walking is more difficult and painful then on the 3rd day morning. I hope it gets better soon. Maybe I was sitting wrongly. Now I try to strech my legs a little more when I'm sitting.

Side note
I feel like I'm in good hands. (Also after having met up Zakika who seems confident) Dr. Giotikas and his co-worker Dr. Giannakos are very pleasant and reliable and assure you that you're never alone during the process. The frames are really stable. I never feel insecure. The few days in the hospital were alright. The nurses make check ups constantly so I couldn't sleep for several hours in a row. It might have been because of the medication but I felt sick all the time, so I wasn't hungry either. Now in the appartment I can sleep better and eat whenever I'm hungry. (My family's food is also better) That's it for now. I will make updates every now and then when I think it makes sense. (Picture below is from the first days, now the gauze has been changed, no bleeding anymore)

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thank you

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Quote from: wants2growtaller on October 21, 2018, 10:22:01 PMSo how did they treat you? ANd how did  they treat other people there?  Were they nice to you?In each hospital there are good and bad nurses. In general the staff of the hospital was very nice though and everyone was fluent in English. At least more heartily than German nurses..for example some of the male nurses or the Physiotherapist there called me brother which German nurses would never do. They treated the other patients in the room the same. In the beginning I was in a room with one to two old men (who didn't know about my surgery), we didn't talk (which I preferred, they couldn't speak English anyways) but when they left they wished me the best with a smile. The other patients in the hospital and their visitors will look at your legs a lot whenever you're walking around since that's not sth you usually see.

My room wasn't fit for a disabled person so they changed my room sometime after they removed my catheter, so that I didn't have a long way to a bigger bathroom.

Quoteare there a lot of short people doing CLL or is it like for medical reasons.I didn't see any other person with frames on except for zakika whom I visited before. (He knows more about other patients of Dr. G)

QuoteHow is the pain? Is it being less painful?
I described the pain in my initial post. But pain is very subjective. Also I guess that the pain will probably highly increase once I start lengthening. Although I'm young I had other bigger medical (not cosmetical) surgeries (won't talk about them) which bound me to my bed for many months. So I was prepared to wake up completely immobile and dependent on others. I am a bit more hardened therefore. If I hadn't had the experience this surgery would have overwhelmed me especially If I hadn't had family support.

Was the surgery a success?This can't be answered with yes or no, yet. I had no complications. But only in the future when I'll be able to walk without support, when I'll reach my height, I can tell if the surgery was a success.

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Thank you Honore!

Unfortunately my right ankle got swollen today (because I put too much weight on it) which makes me unable to put any weight at all on it now. Let's hope it gets better soon.

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Quote from: wants2growtaller on October 23, 2018, 12:34:29 AMMe as well. I hope you recover 100 percent.

Thank you! But keep in mind that a recovery of 100% is never possible with an invasive surgery like this.

One of the reasons why I decided for TSF frames and later Stryde is because lengthening with them is reversible. Read for example Unicorn's diary to know how important that is.

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Hi Bron,
there is also zakika’s diary on this forum.
1.The price, the package, location, Dr. Giotika’s calm and reasonable appearance
2. You can ask zakika about that
3. I think about 40.000€, not sure. Around December. You can e-mail [email protected] . They usually answer very quickly.
4. I didn’t ask that as I decided for TSF frames for tibia.
5. I described that earlier. They are all very likeable.
6. I have found a nice apartment through Airbnb. The weather is really good. Groceries are more expensive than in Germany. The people are friendly.
Thank you!

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Update 2     1,4cm

Pain?
During the last two weeks I experienced different kind of difficulties that weren’t necessarily painful.
1.As mentioned before my right foot was weaker in the beginning. I didn’t dare to put too much weight on it. But when I did it the ankle got swollen. Two days later, after I lifted my leg up and put some ice on it the swelling disappeared. As recommended by my PT I tried to put equal weight on both of my feet while standing. Now I can put my weight on the right and left foot without any problems.  (not a painful experience, rather demoralizing)

2.In the beginning, when I stood up from my bed my tibias hurt for about a minute. The pain disappeared then. 4/10
3.When I started to lengthen, I noticed a sensation like high pressure from outside squeezing my left tibia whenever I walked (not painful but uncomfortable and a bit scary)
4.The scariest thing was that for a few days I heard a loud abruptly pop (sound) coming from my left tibia. It appeared whenever I put weight on it while walking. I felt this very uncomfortable pop, too. I described this to Dr. Giotikas and he said that it might be the bones rubbing each other (where the cut was made) and that it will disappear when I continue lengthening. He was right.

5.The most painful experience was about a 7 from 10: For a few days the pins right under my right knee were causing a lot of pain. Only when I had to bend my leg to stand up or to sit. It stopped on the day when Dr. Giannakos “forcefully” bend my right leg for a few times with his hands. It was painful, but it helped a lot. On that day I also had PT where I had to bend my knee as an exercise. Afterwards my right leg was healed and strong again. Soon after, my left leg became the weaker one.
6.Two days ago sitting on the wheelchair (with your leg raised a bit) wasn’t easy. My muscle under my right knee causes problems. I haven’t tried it since.

Nevertheless, my legs usually don’t hurt while lying on the bed or when I walk. I’m lucky since my mother or sister can help me by for example putting a soft blanket under my legs and adjusting it whenever I feel uncomfortable. And except for point number 5 the pain was bearable so far.


Sleep
The whole time I had no problems falling asleep and sleeping for a long time. Only about 3-4 days ago I started to feel pretty tired during the day. It made feel very weak too which is very demoralizing. I couldn’t walk as much as before, or I wasn’t as happy. I have difficulties to fall asleep, not because of pain but because of the feeling that I have to bend my leg a bit to feel more comfortable. But when I move and bend my legs the new position feels uncomfortable after some time. Once I fell asleep around 4AM. It sounds weird but tonight after several hours awake, I laid my left arm above head for a few minutes and the uncomfortable feeling of my left leg stopped. I will see if my sleeping condition improves the next days. I already tried natural sleeping pills (Baldrian or EVIOL). Didn’t help so much.


Walking
I probably walk up to 7 or more times a day for a few steps. When I’m not tired, I try to walk more. I can’t walk too much at a time though because either my right ankle or the nerves of my left foot begin to make problems.


Side note
I can say that pushing yourself even if it’s painful is sometimes very helpful and can actually relieve a lot of pain. But I wouldn’t exaggerate it if I’m doing exercises on my own.
Also, I wouldn’t have managed to be so optimistic and mentally stable if my mother and sister weren’t there to help me the whole time.
I never really feel hungry. I have no appetite either. Only when my stomach feels empty I know I have to eat.

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Hey Mapk,

here is a picture from a few days ago. I can imagine that there will be small dots all over my legs where the pins were but since I'm more dark skinned and (more hairy than on the picutre) it won't be really noticable.

https://imgur.com/x3os7mQ

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Quote from: TinyTL on November 13, 2018, 08:23:11 PMdo you have any auto-immune diseases like psoriasis?

No:) After the surgery my skin was just very dry because the gauzes that will be put around the pin sites are drenched with an alcoholic fluid. When I had to change the gauzes 2 times after the surgery again, the gauzes were also drenched with alcohol and since it was also lying around my skin it just dried so much.

It is allowed to use skin cream unless it doesn't get inside the pins. I tried it on the sides of my legs (that look ok on the picture) but it began to itch..so right now I'm more cautious.

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Update   2,1cm

Problems
1.The last time I mentioned sleeping problems because of the feeling of having to bend my knee.
In the beginning that feeling was only troubling me in the evening and during night. But it developed to a more annoying problem. Because it was annoying me during the day too sometime after. It was obviously my muscles of my upper left leg because when I massaged them it felt good. But it didn’t solve the problem. The muscle discomfort (not pain) changed from time to time between upper leg and gluteus/butt muscle.

It might sound harmless but not only was it keeping me from sleeping but the discomfort level even raised to a 10 out of 10. I was really desperate. No position, no massage, nothing seemed to be helpful. But then I asked my sister to darken the room and leave me alone. I closed my eyes and listened to loud music. Wow…and suddenly the discomfort disappeared like magic. For one night and one day relaxing for about 10 minutes removed the problem. The next evening just relaxing didn’t help anymore. For almost the whole night I was trying to fall asleep but the muscle discomfort in my butt was too bad.
I messaged Dr. Giotikas that night and he sent Dr. Giannakos. I was told by him and my PT to do certain muscle training.
Anyways I can’t remember that I had the same discomfort since that night again. With every following day I felt better. While it was still annoying me yesterday afternoon, it improved a lot since yesterday evening. Right now it’s a 1/10.

2. Out of one pin yellowish fluid was discharging. I had to clean the pin site normally and put a gauze on it. When Dr. Giannakos was visiting, I told him that whenever I pull the gauze away to change it, it takes the crust away, he recommended to just leave it by itself without a gauze even. The result was that the yellowish fluid dried and turned red becoming a tent looking like crust around the pin site. But sometimes the yellow fluid was still discharging from some hole. Yesterday I noticed that the fluid looked like pulsating. I sent pictures and a video to Dr. Giotikas who called me and advised to clean the pin site completely, so I had to remove that ugly crust, the fluid and my skin, then put a gauze around. At this pin site something weird pimple looking like something developed. Dr. Giotikas said that it is a small hypetrophic granulation tissue that will disappear when the frame is removed. Yesterday evening I e-mailed him again, telling him that the pin site hurts when I walk. Today he said that he will talk with Dr. Giannakos if antibiotic tablets for a few days will be needed. But today it didn’t hurt anymore. I messaged him that. I don’t know if that changes anything.

3. I can pull both of my legs towards me (by bending my knees of course) when I lie on my bed. But I can only stretch my right leg back to its original position without much difficulty. My left leg is too weak for that, it needs assistance.
4. The nerves of my left foot or ankle of right foot don’t bother me that much any more when I walk a bit longer.


Walking
Some days I felt like not walking at all, I still try to walk a bit. But the last days I noticed some progress. I was able to walk the distance which I walked in the beginning now 4 times in one day.

Side Note
I very often look at my calendar wishing time to pass faster. I will definitely wait until my frames come off…enjoy life with healthy legs before I do Stryde. Once you’re at this point you value healthy legs so much.
I pass my time by reading (already finished an over 1200 page book), playing PS4, listening to music, watching Netflix and following the news. Only on those few days where the muscle discomfort was very high I couldn’t do much of my activities.