Really hope you’ll be able to reach the 6cm man! As you said, safety first, this surgery is no joke, god bless your mother identified the problem in time!
Hello everyone I’m a quiet and silent cll patient. I had my surgery JAN 31 with dr. Paley in Poland at his institute as I could not travel to the US due to Covid. My journey started with complication of minor fat embolism as dr. Paley called it but it scared them and he told me I’m one of the 3 patients he has seen this happen before. I was in icu for 3 days.
I am 43 years old and started surgery with 176.5 cm aiming to get to 184 cm.
I have been in poland since then doing my regular physios sometimes 2 hours and recently when I reached 4 cm I had an irregular heartbeat and I rushed to ER. Poland for that matter isn’t most first world and even though I’m at best private hospital here it’s still not my first preference.
I was asked to shift to aspirin when injections finished and when irregular heartbeat happened I did blood tests. I refused to accept from local polish docs that it’s all in my mind. I had care taker who rushed me to ER. They did ct scan ecg and finally I asked for ultrasound of legs and they said only blood shows dimmer levels elevated along with liver enzymes being elevated too. Apparently also part of post surgery. So I am now on 2injections per day of 40mg of heparin which isn’t something I look forward to daily. I am shocked and surprised that docs only do x rays and not blood tests every 2 weeks or a monthly blood check.
In any case next week I should be at 5.5. Cm distraction and 182 cm height. I am being adamant on blood tests next week as after 8 weeks post surgery dimmer levels should start to show normal levels along with liver enzymes.
Dr. Paley says that distraction is not affected by veins or clots.
But I am no doctor and I feel every time I do distraction now my breathing is bit heavier. What truly helps me are deep breaths throughout day.
I started walking and have been active with right leg struggling at time’s due to my 2 acl surgeries I had as I was an active sportsman.
I have had many surgeries in life for various reasons but this surgery is another league.
I suggest all cll patients to be in solid shape and by that I mean from lungs to liver to heart to all and have all pre tests done. In hindsight now if I knew I had fatty liver maybe I shouldn’t have done surgery.
Doctors do their job and you are left alone with physio or an assistant doc but it is pretty much upto every individual to monitor how they feel.
I have gone ahead and also bought an oxy meter to check oxygen levels and beats per minute just in case. Prevention is better than cure.
The energy levels post this operation are low low for me. It’s like 4 hours of regular work and I feel like I’m 90 years old. Hoping energy levels improve which all say only come back in 6 th month.
Dr. Paley would be visiting in may in poland again as he has an excellent practise here for many deformities and heavy cases with children which are another league of complexities.
So overall yes I am thankful and blessed to be alive but in hindsight if one is doing this surgery I would recommend regular blood tests and be on dot yourself. We know our bodies better than anyone. Any deviation I would say go to ER. Don’t google or check the forum alone.
Just my 2 cents and need the prayers and love for all to complete this journey.
Does anyone have literature on fact that distraction may cause embolism?
Thanks
ahd
its really scary to read all these. as a current precise patient, could you tell me what signs i must look into to detect this early?
erkan said he had swelling, what did you(ahd) notice to suspect this? abnormal heartbeat?
i also read literature on covid or its vaccinr increasing the risk...@ahd, did you have covid or its vaccine ?
its really scary to read all these. as a current precise patient, could you tell me what signs i must look into to detect this early?
erkan said he had swelling, what did you(ahd) notice to suspect this? abnormal heartbeat?
i also read literature on covid or its vaccinr increasing the risk...@ahd, did you have covid or its vaccine ?
Hello
I was eating garbage after having read on forum eat your way to glory and one of days I was eating a full pizza and coffee and coke. I think my eating became unhealthy as I assumed whatever I eat would consume it. But remember previously I had fatty liver in blood tests which I guess comes with drinking or age or bad life style. I didn’t specifically prepare for surgery as I thought I’m just in my 20s still and I’ll recover.
So what happened was that my heart beat became very fast and erratic. I rushed to ER as I mentioned and dimmer levels came elevated. Only then they did ct scan ultrasound and ecg. I was fortunate clot didn’t form to reach but blood level showed signs
So yes heart beat and heavy breathing was for me.
I would suggest following
1. Eat well but healthy. You aren’t moving much so don’t stuff junk
2. Have blood tests every 2 weeks. Drink lots of water and that also pushed u to go to toilet more often
3. Breathing excercises daily. Getting out of bed every 2 hours and I was lazy watching tv at times.
4. Get an oxypulse meter for home to check oxygen levels.
5. Continue heparin till distraction no matter what.
6. Do not panic breathe heavily and have emergency on speed dial. Pain worsens it.
7. Besides this inside ankle of right leg and lateral femoral nerve of left leg has gone numb with tingling sensations. But that dr. Paley says is from surgery and is normal and over time when we get active these nerves come back.
I have been told to continue with distraction I am trying for 7.5 and currently close to 5.5.
Listen to your body it will give you signs. Don’t over exert either.
Over all it’s tough journey mentally physically and all levels.
Take each day as it comes as some days are excellent and some just very tiring.
I am still learning about energy levels being so low and adapting to this new pace.
And pls pls have someone with you. I had no one past 2 months and it really sucks emotionally. That’s why I have a care taker so we have something to share or talk and he can always be around if I need to rush somewhere.
Hope this helps.
I will brief all on my blood tests next week and let’s see if dimmer levels have come down which they should as they only stay elevated 6 weeks post surgery.
But I am really pushing local docs here in absence of dr. Paley and they might not like my approach but I have paid 100 usd for this and if I’m just left alone to figure it all out myself. No thank you. I will push the limits do research and continue with blood tests so these docs know I’m not just a number
Hello
I was eating garbage after having read on forum eat your way to glory and one of days I was eating a full pizza and coffee and coke. I think my eating became unhealthy as I assumed whatever I eat would consume it. But remember previously I had fatty liver in blood tests which I guess comes with drinking or age or bad life style. I didn’t specifically prepare for surgery as I thought I’m just in my 20s still and I’ll recover.
So what happened was that my heart beat became very fast and erratic. I rushed to ER as I mentioned and dimmer levels came elevated. Only then they did ct scan ultrasound and ecg. I was fortunate clot didn’t form to reach but blood level showed signs
So yes heart beat and heavy breathing was for me.
I would suggest following
1. Eat well but healthy. You aren’t moving much so don’t stuff junk
2. Have blood tests every 2 weeks. Drink lots of water and that also pushed u to go to toilet more often
3. Breathing excercises daily. Getting out of bed every 2 hours and I was lazy watching tv at times.
4. Get an oxypulse meter for home to check oxygen levels.
5. Continue heparin till distraction no matter what.
6. Do not panic breathe heavily and have emergency on speed dial. Pain worsens it.
7. Besides this inside ankle of right leg and lateral femoral nerve of left leg has gone numb with tingling sensations. But that dr. Paley says is from surgery and is normal and over time when we get active these nerves come back.
I have been told to continue with distraction I am trying for 7.5 and currently close to 5.5.
Listen to your body it will give you signs. Don’t over exert either.
Over all it’s tough journey mentally physically and all levels.
Take each day as it comes as some days are excellent and some just very tiring.
I am still learning about energy levels being so low and adapting to this new pace.
And pls pls have someone with you. I had no one past 2 months and it really sucks emotionally. That’s why I have a care taker so we have something to share or talk and he can always be around if I need to rush somewhere.
Hope this helps.
I will brief all on my blood tests next week and let’s see if dimmer levels have come down which they should as they only stay elevated 6 weeks post surgery.
But I am really pushing local docs here in absence of dr. Paley and they might not like my approach but I have paid 100 usd for this and if I’m just left alone to figure it all out myself. No thank you. I will push the limits do research and continue with blood tests so these docs know I’m not just a number
Hopefully you will able to reach your goal, if not then you still achieved a good gain and recovery should be very easy.
Are you doing much exercise? Does Dr Kohne allowing cycling in a gym? Do you have any exercises for plantar flexion, they might help promote blood flow.
Do you you have any family history of clotting disorders, they are very common?
D dimer is a non specific test an ultrasound is much better
dear Ahd1978,
its normal protocol to do only the xrays every two weeks. All the doctors I have consulted told to me this.
This is my humble opinion from my side friend: I think some of this things are in your head. the mind can play games on you. I want to tell you a short story. When the pandemic was at its peak I fell ill and thought I Had got the covid. I knew all the symptoms from Google and news channels. One day after coming back from the super market I felt more tired than the usual. So I convinved myself that I had the covid. I slept on my bed except to eat and go to bathroom and kept thinking about my breathing and heartrate. My heartrate was in consistently in the 120 and above. my oxygen levels were in the normal as per the oxymeter. Then after 2 days of living in the fear like this I called the ambulance and got the covid test done and it came negative. Then automatically my symptoms vanished away.
anyway the health is precious and if you want to do more tests and be safe then it's not a problem. But I just wanted to tell you the tale of my story of anxiousness which made me think I have severe the heart problems and breathing problems but it was nothing.
And Ahd1978, THANK YOU for asking Dr Paley about whether dvt means you should stop the lengthening. I am finally very happy to hear this answer from the expert.
cheers,
sergio
Ahd1978 wrote some very very good points. you shouldn't expect doctors to notice everything by themselves! Everyone feels their own body best. regular blood tests and be on dot yourself!
Wish you the best!
Quote from: HeightGain on April 03, 2021, 05:46:46 PMHopefully you will able to reach your goal, if not then you still achieved a good gain and recovery should be very easy.
Are you doing much exercise? Does Dr Kohne allowing cycling in a gym? Do you have any exercises for plantar flexion, they might help promote blood flow.
Do you you have any family history of clotting disorders, they are very common?
D dimer is a non specific test an ultrasound is much better
Thank you! I was not thinking about cycling, but I will ask him. I wear compression stockings during the day and take regular walks. I avoid sitting and standing.
There is no clotting disorder I know about in our family. My father had thrombosis because he got a bandage wrong in the hospital over the weekend.....
Yeah I ve got an ultrasound.
I agree totally
The local docs also gave me anti anxiety meds which I tried for few days but made my mouth dry and next day groggy.
I am taking each day as it comes. I avoid any googling as I understand totally. But I only went to ER when heartbeat was erratic.
And possibility of clot came up only when ER doc checked blood dimmer levels and found them elevated.
With heparin injections one has to monitor blood tests regularly. So my plan is to use injections till distraction phase which I am away from by 4 weeks. Then move to xarelto for next 2 months till I am fully active.
Btw dr. Paley also gets very upset when I ask him questions from reading online or forum. He does very very complex surgeries and for all his patients he replies online within the same day. Sometimes same hour and I respect that a lot.
He is direct and to the point.
So when I ask him doc do I continue distraction he will reply yes or no and I have to follow through
If you wish to know any further things happy to receive personal messages.
Are you doing surgery Sergio ?
Why are all so much against reaching full potential of 8 cm for femur. I can tell you one thing in mirror every cm counts.
I don’t see any change in dynamics yet for myself at 5.5.
Maybe last inch would change that but I wouldn’t know as with tightness only once it’s gone during consolidation that I would know how well now I can handle new height.
Any suggestions
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