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Author Topic: Bilateral Internal Tib/Fib and Bilateral Internal Femurs with Dr. Mahboubian.  (Read 10714 times)

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Optimistic1

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Can someone show me how to upload images? It keeps saying the message inbox is full. Thank you.
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KiloKAHN

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Can someone show me how to upload images? It keeps saying the message inbox is full. Thank you.

http://www.limblengtheningforum.com/index.php?topic=2183.0
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Surgery performed by Dr Mangal Parihar at Mangal Anand Center for Limb Lengthening & Reconstruction. http://www.limblengtheningforum.com/index.php?topic=634.0
Pre-surgery height:  164 cm (Surgery on 6/25/2014)
Post-surgery height: 170 cm (Frames removed 6/29/2015)

Optimistic1

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Thank you, KiloKAHN.
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Optimistic1

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Here's a couple images of my first x-ray. Just copy and paste it onto our URL.

https://imgur.com/a/qum6v
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Honore

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Looks good.. looks already nice bone growth, but the fibula seems mis-aligned.. is that a problem?
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Optimistic1

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Honore,

Thank you and that was my concern as well. However, Dr. M said "Everything looks well aligned and exactly as it should be." He also said "The amount of bone you are forming is fantastic!"

He further said "We never put a rod in the fibula. Rather, the fibula is attached to the tibia and lengthens along with the tibia."

I asked him "The 2 ends of the Fibula bones are not connected to anything. How are they going to regenerate bone properly and connect with each other later on?" I'm still waiting for his response. I'll keep everyone posted.
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Optimistic1

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23rd day post-op: I stopped exercising on my stationary bike for 2 days now and my pain is improving at night and early in the morning. I also notice that the pain meds kick in faster now compared to before. I'm still lengthening 3x a day at .25 mm each time. My femur surgery is in 5 days and I'm a little bit worried because I came a across a statement posted on this forum under Dr. M's name about 2 and half years ago. The statement is as follows:

"It is not recommended to perform lengthening on the femurs and tibias simultaneously due to higher complication rates including fat embolism, joint contracture and nerve damage."

I'll be lengthening my femurs and tibias simultaneously after the femurs operation on March 15. I don't know what has been done since this statement was made to prevent or reduce the above-mentioned complications. I spoke to Dr. M before my Tibia surgery in December 2017 about the risk(s) of doing both tibia and femur simultaneously and he said don't worry because a lot of his patients have done both with no or very limited problems.

I just emailed him about the above statement last night and am still waiting for his response. I have never read any diaries from anyone who has done both on this forum. Any information or tips are greatly appreciated. According to Dr. Paley's website, "It remains safer to do the two lengthening surgeries on separate dates separated by at least two to three weeks apart." I'm doing my surgeries 4 weeks apart so I hope this will help prevent or eliminate most, if not all, of the above-mentioned possible complications.

My Tib/Fib is recovering very well. I'm still taking 1 Norco plus 1 Ibuprofen every 4-6 hours. I think I can wing it without pain meds but I don't like that uncomfortable feeling. My swelling has gone down almost completely. Just one or two remaining bruises.

My flexibility is great. I can stretch my legs all the way out and bend to touch my butt with my heels laying down. I do 7 exercises 3 times a day so my flexibility improves a lot. My PT said my flexibility is like a normal person. I can sleep on my side a little bit now. Everyone is different so I hope my experience is helpful to you in some way. 
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short2tall

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Hey Optimistic1, its great to hear how flexible you've remained. I hope I can get back to that point soon.

I think you will be fine after the femur surgery. If both Paley and Mahboubian are willing to do quadrilateral lengthening (3 weeks apart), it has to be something that they feel is safe. I was thinking your weight bearing would be extremely limited, but I don't think it will be any different after the femur surgery. The smaller nail in the tibia will be the limiting factor.
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Bilateral femurs with Dr. M on March 1st
Starting height: 5'8.5"
Shooting for 5'11"

MirinHeight

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looks good man!
did insurance cover any of the hospital bill?
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currently 179 cm with a 6'2 wingspan
Goal: 182-183
top 5 LL surgeons: Paley, Rozbruch, Mahboubian,  Donghoon Lee, Giotikas

- planning to have stryde tibias with mahboubian or giotikas in 2021

Optimistic1

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MirinHeight,

My insurance does not cover any of the hospital bill.
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Optimistic1

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Hi Everyone,

I flew into Burbank today for my Tib/Fib second post-op and femur pre-op. I'm ready for my femur procedure. I had my second x-ray at Dr. M's office and was informed that my bone growth is not so good. He measured my distraction at 1.5 cm but I measured it at 1.35 cm. He said there's little or no bone growth in my fibula bone. Therefore, I'm reducing my lengthening to 2x a day at .25 mm each for 5 days then resume to my usual routine. I don't know how this is going to work as I will be having my femur procedure in 2 days. I'll lengthen 2x a day tomorrow then resume 3x a day on Monday. The days (Thursday, Friday, Saturday, and Sunday) that I don't lengthen due to my femur procedure I'll just consider them as I'm lengthening 2x a day.

Dr. M prescribed the same thing for my femur procedure: Norco and Xarelto. I called 6 different pharmacies and none of them has the amount for Xarelto that I need. The most I can get is 12 pills which I filled. I'll ask Dr. M to send the RX to the same pharmacy in my hometown for the rest.

Dr. M. also prescribed me Silica to aid with the bone growth in my Tib/Fib. I'll update everyone about the femur procedure soon.
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short2tall

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Sorry to hear about your bone growth Optimistic1  :'( Hopefully that rest period while you have your femur surgery will allow for some bone to start forming. I'm sure it will all work out. Great luck with your 2nd surgery!
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Bilateral femurs with Dr. M on March 1st
Starting height: 5'8.5"
Shooting for 5'11"

Honore

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Success with the femurs... did the doc gave you possible reasons for the non-growth? And can I ask you about whether you smoked a lot in your pre-cll life or had a bad diet or something else maybe related  to not forming new bone? Or is it just genetics?
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Optimistic1

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short2fall,

Thank you and I'm hoping for the same thing too. I'll keep everyone posted and provide suggestions I might have in improving my situation.
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Optimistic1

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Hi Honore,

Dr. M didn't tell me the cause of the slow or non-growth of my bone. He said it looks better in the Tibia bone than the Fibula bone. My concern was fast consolidation so even though this is a problem it's not as problematic. I have already rearranged everything at my company to allow me to be away for 8 months. So far, most of my employees are very cooperative and I just gave everyone a bonus before I left yesterday. This gives me the peace of mind to continue on with my journey. I prefer a slower lengthening rate to prevent any possible complication. I read somewhere that the ideal rate for lengthening is .66 mm a day. I could be wrong.

I don't smoke or drink. My diet is average but I've been taking a lot of supplements (7 different supplements ) every day. I used to work a lot so sometimes I'd skip lunch or have a very late lunch or just 1meal a day. It's tough growing a business at where I live, let alone growing a successful one. Breakfast is not part of my diet. However, I used to juice everyday and used to drink 2 large glasses of 6 different fruits daily.

It could be genetics and that could be the explanation as to why I wasn't able to grow as tall as my dad (6 feet) or my brother (5'10). Lol. I will everyone posted of my femur procedure.
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LAGrowin

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Hi Optimistic1,

Hope you're well overall.  Wishing you all the best with your femur procedure, is that tomorrow or next week ?  Please reach out if you need anything while in town.

I'm sorry to hear about your current bone growth. One of Dr. Ms other patients who happens to also be a physician recommended a supplement called bone builder which I want to look into and take when I'm about to finish lengthening.  You might want to check it out.

Here is one I saw:https://www.vitaminshoppe.com/p/garden-of-life-grow-bone-system-algaecal-240-capsules/gu-1128?mr:trackingCode=152E5D84-C9E0-E511-80ED-00505694403D&mr:referralID=NA&sourceType=sc&source=SHOP&acqsource=adlucent&utm_source=Shopping&utm_medium=CSE&utm_campaign=Garden%20of%20Life&utm_content=GU-1128&gclid=EAIaIQobChMI_fLnours2QIVBp7ACh35qAPcEAQYCyABEgKLsvD_BwE

Wishing you all the best!
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Optimistic1

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Hi LAGrowin,

Thank you for the recommendation. I’ll definitely look into it. My surgery is this week. Hopefully, it won’t be too bad.

Optimistic1
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LAGrowin

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Hi LAGrowin,

Thank you for the recommendation. I’ll definitely look into it. My surgery is this week. Hopefully, it won’t be too bad.

Optimistic1

Sincerely hope that surgery went well for you Optimistic1.  My thoughts with you for a smooth recovery.



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Optimistic1

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Hi Everyone,

I had my femur surgery on Thursday (3.15.18). Dr M. almost cancelled my surgery because I was not supposed to be taking Ibuprofen but I did for 3 weeks straight every day for 3 pills a day or even more. Basically, Ibuprofen causes one's blood to be thin and the body will bleed excessively during and after surgery. It will also slow down the healing process. He told me to come back in a month. I was already on the surgery table. I felt so bad. My primary care doctor told me to take Ibuprofen to help with the pain while keeping the Norco at 1 every 4-6 hours. I told him I couldn't afford any down time and I'd sign a waiver. He finally agreed and called in a blood transfusion tech just in case.

During the surgery, he lowered by blood pressure and everything went well. I didn't bleed as expected and had my blood drawn the next day. The results came back great. Dr. M is very good in this field. My tib/fib procedure was tough but oh boy, the femur procedure was at least 3-4 times worst. Whatever LAGrowin went through, I went through almost the exact same thing. The pain was so bad that 4 shots of dilaudid right after the surgery didn't help. I was still in so much pain. My pain was very bad for another 4 hours. However, Dr. M took me off the dilaudid the very next day to transition me to Norco. The pain was so bad that I had a fever a least 3 times. The only positive thing this time around is that I was able to pee after about 2-3 hours whereas I wasn't able to for 1-2 days last time.

I was immobile on Thursday and Friday. I had no control of my legs and getting to the edge of the bed to pee was a challenge. I'd be sweating like a pig every time I attempted to get to the edge of the bed to pee. Most of the nurses recognize me and call me brave for doing 2 procedures just one month apart. I know this is not a good idea but I can't afford anymore downtime. I need to get back to work as soon as possible.

I improved a little bit on the second day. I trained myself to pee in the urinal while waiting for my femur procedure and being able to pee in the urinal is extremely helpful. The driver from Affinity came pick me up today. I'm now at the hotel with my mom and sister. I can finally get on and off the bed by myself. The process takes a lot of time and effort. My pain is currently manageable with Norco. The pain in my femurs is so intense that I don't even notice the pain in my Tib/Fib anymore. Hopefully, the pain will continue to be manageable for days to come. I forgot to mention I had a really good nurse for both surgeries and she truly made the process less painful. 

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Android

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Wow, you're a trooper. Glad that taking the ibuprofen didn't lead to any complications. It can be a difficult decision when timing is a big factor. Hope that your pain becomes manageable in the coming days.
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5'4" and 1/4" (163.2 cm) | United States | early 30s | Cross-lengthening with Dr. Solomin & Dr. Kulesh

Optimistic1

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Thank you, Android. I exercised so much at the hospital that some of the incision sites started to bleed again. I wanted to be able to move so bad that I tried really hard and to the point where the physical therapist had to step in to stop me. I will try to keep everyone posted every step of the way so any potential CLL who wants to do both bilateral tib/fib and bilateral femurs at the same time can gain from my experience before having to go through with it.

I know the tightness is going to be very bad as I’m lengthening both regions at the same time. However, I will try my best to deal with the extreme tightness. Dr. M said the reason I was experiencing slow or non bone growth was due to me taking the Ibuprofen. The point to take away here is do not take Ibuprofen and listen to your CLL dr., not your primary care dr. Lol.
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LAGrowin

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Hell Optimistic1,  glad to hear that you're well overall and that you were able to get through that obstacle caused by the ibuprofen.

What you're doing is admirable. I can't even imagine,  but as you know time flies and before your know it you'll have passed the more difficult weeks. 

Good to know you have family with you.

Call me if you like when you're up to it and I'll share some tips I learned.   Things will get much easier between weeks 2-3.

Get some rest and keep us posted when possible.   Congratulations!
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Optimistic1

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Hi LAGrowin,

Thank you. I have been reading your diary over and over to understand and know what to expect for my condition. Thank you very much for taking the time to put it together. People like you and those who came before us really laid the foundation for a stronger CLL community.  I truly appreciate it.

I'll be in Burbank until this Saturday. I'll let you know if I need anything. Thank you and good luck to you on reaching 2 inches. I'll update everyone on here about my condition now.
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Optimistic1

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5th day post-op (Surgery was on 3/15/18): I have been dealing with the pain and immobility since the surgery so I didn't really have the energy to do anything or to continue this diary. I feel better today and was able to get off the bed last night with less effort than before. I having a locked knees condition now. It started since yesterday morning. I notice that whenever I sleep for over 4 hours straight, I experience the symptom. Therefore, if you want to avoid experiencing this condition, try to sleep only about 2-3 hours at the time. I think the drawback from this is your body won't heal as fast compared to if you're able to sleep longer.

I am having regular bowl movements now. I notice that eating oranges, strawberries, and drinking milk in addition to taking stool softener helps with the bowl movement. I have locked knees every morning now and I spend about 30 to 45 minutes to stretch and it would go away. I haven't regained much of my flexibility but enough for me to move around. I exercise every time I have a chance and I take a norco before I do that. This helps with the pain. My pain is much more manageable now. I don't want to jinx it but I don't feel much pain in my tib/fib region anymore. I haven't experienced any double attacks from both my tib/fib and femurs at the same time for the last 2 days. My tib/fib have been good to me. I still experience some pain when moving in and out of the wheelchair, in and out of bed and onto the toilet. However, I feel this pain will go away soon. My appetite is not completely back yet. I'm back lengthening 3x a day at .25mm on my tib/fib now. I'll see Dr. M this Friday for my femurs first post-op. Let me know if you have any questions now.
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Android

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Thanks for updating even with all the pain and discomfort.

If you can manage to do it, maybe you can change your sleeping habits a bit, like biphasic sleep. Could tough when you have appointments to keep, not to mention the unpredictable cycles of pain. Glad that your tibias are manageable now.
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5'4" and 1/4" (163.2 cm) | United States | early 30s | Cross-lengthening with Dr. Solomin & Dr. Kulesh

Optimistic1

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Hi Android,

I think I know what you're talking about. I saw a video clip on YouTube about it as well. I don't think I have the energy or the will power to do that now but it's something worth considering when this is all set and done. Thank you for the information.

Optimistic1
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Optimistic1

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10th day post-op: I had my first post-op appointment on March 23th for my femurs and flew back home on March 24th. I was given the ERC machine and instructed to lengthen 4x a week and .33 mm each time. After that, I will go down to 3x a week and also at .33 mm each time. My pain is getting better but every time I move around in a car or fly around, it aggravates and taking Norco doesn't really help much. I have more pain on the right of my right thigh. It seems to be constant and I try to stay still to not aggravate it. My thighs are still really tight and stretching does bring pain but I have to stretch to get rid of the tightness. Fortunately, I don't feel much pain in my tib/fib anymore.

I also had my x-ray for my tib/fib at the post-op and I continued to have no bone growth in this region. Dr. M attributed this 100%  to me taking Ibuprofen for 3 weeks immediately after the surgery. I did some research and it's true that taking Ibuprofen blocks the production of prostaglandins, which are chemicals made by the body to help the healing of broken bones. When these chemicals are blocked, theoretically, bone healing can be delayed. I have to stop lengthening my tib/fib for 5 days then go back to 2x a day. Dr. M recommended taking Silica in addition to Vit. D and Calcium. I'm still researching the right one. Now that I'm home, I will try to eat health and have a more consistent diet plus taking all the recommended supplements. That's pretty much all the updates so far.
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Body Builder

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Bilateral lengthening is a very bad choice.
It puts great stress to the body and to soft tissues and it is orobably the reason why you have poor bone growth.
Even 1 segment LL is very stressful for the body, 4 fractures at the same time is too much.

I thought that Mahboubian was a good doctor but doing 2 segment LL at the same time means he cares more for money than for safe results.
After that I put him out of my list for my second LL.

Anyway I hope you'll become better.
Keep strong.
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Optimistic1

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18th day post op: It's been awhile since I last updated my journal due to the constant pain I am experiencing after I had my femurs done. I think because my body was substantially weakened after my tib/fib procedure (February 15, 2018), I experience more pain when I underwent another surgery (March 15, 2018) almost immediately right after. PLEASE DO NOT DO WHAT I DID. Only do one surgery at a time, completely recovery, and then do another one. I can't afford to do that. I own and run a company. I'm at the peak of my career. I have to take major losses every day that I don't work. Therefore, I cannot afford anymore downtime. If you're working and have to take a break or quit your job, do it. It's not that bad except that you might not have enough money to carry on with life thereafter. My point is you should do this surgery as soon as possible. You don't know where you'll end up in life and you might be in a position where money is no longer an issue but you just can't set aside 4-6 months to do this surgery.

In addition to financial losses, I have staffing problem at my company the last couple of weeks. My manager decided to quit and only gave me two weeks to find a replacement. He's a very intelligent employee so it's going to be tough to find someone like him in such a short period of time. My other manager will be taking her maternity leave soon so I have to hire someone to do her work while she's gone. I've been reviewing resumes and interviewing candidates for these two positions. To make matters worse, I got hit with 3 HOA bills: 2016, 2017, and 2018 for a total of almost $20,000.00. I own a new building where my company is operating in and never got the bill in 2016 or 2017. All of the sudden,  they demanded that pay all 3 years together. I did pay but realized that they inflated many charges and some of the charges are don't even exist. I proposed that all owners meet to resolve all issues together. My birthday was last week so I'm 34 now and it wasn't a good birthday as you can see. It's very difficult for me to handle these issues due to the constant pain I'm experiencing. I'm in my third week of my femur procedure but Norco doesn't work that good anymore. I still experience pain with pain meds. The pain level with pain meds is still around 3-4 whereas it was 0-1 before the femur procedure.

I feel a little better today and the nerve pain on the right side of my right thigh is not so bad with pain meds. I resumed lengthening my tib/fib a couple of days ago and I went down to 3x a day on my femurs. Nighttime is the worst and especially when I exercise (PT) during the day. I can only sleep 1-2 hours at night and 1-2 hours during the day due to the constant severe pain in my thighs. My mom massages my feet for hours during the day and at night to help with the pain. It helps a little. My mom is getting tired doing it so my female friend is taking over. I think foot massage is very helpful with pain and especially when you're waiting for the pain meds to kick in.

My appetite is somewhat okay now but not as good as before when I had my tib/fib procedure done. I have gained about 1 inch in my tib/fib and .5 inch in my femurs. My legs look so long now. I think part of it is because my legs got so skinny so they give the impression that they are much longer than they really are. I'm happy to see my legs getting longer. I don't feel the tightness in my tib/fib and calf muscles yet. I feel a lot of tightness in my thighs and I think it's the effect of the surgery as I've only lengthened less than .5 inch in that region. I'm really worried that they will get tight soon and since I'm lengthening both regions at the same time, my lengthening will be substantially limited. However, at least my proportion will be better compared to if I only lengthen 1 region. The other concern I have is the lack of bone growth. I didn't have much bone growth based on my last x-ray. I stopped taking Ibuprofen (main culprit) about 3 weeks ago and have been taking Vitamin D and Calcium religiously. I am hoping to see some bone growth at the next post op with Dr. M. I have already booked my flight and will be flying back home after the post-op in the same day.

Tips:

1. Try not to move your legs so much unless you need to. It's okay to exercise but when you're done, rest and get some sleep so the muscles can heal.
2. If you can pee in the urinal, do so to limit the amount of times you have to get in and out of bed.
3. Get foot massages but only at the bottom of your feet. My calves are still sore from the tib/fib surgery.
4. Don't wait for your pain to get to so high before doing something about it. Rectify it right away because it will take longer to bring down your pain when it's at 8 or 9.
5. If you can only sleep a couple of hours at night, get some sleep during the day.

Any questions, please feel free to ask me.
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Android

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Phew, that's intense. Maybe once it's all said and done you'll be happy, but at this moment in time, it's painful and excruciating. These are the kinds of things we tend to forget after some time has passed, so it's good to have it in writing now that it's a real struggle that should be avoided if at all possible.

Sorry to hear about the troubles you're having with your business. When it rains, it pours... But it will eventually stop.

Ibuprofen seems to be the serial offender these last few updates in the diaries. Were you not warned against taking them? It's such a common pain reliever that you'd think patients would be dissuaded from using it by now. I think most Americans would reach for it when in pain, since it's OTC and is for the most part harmless.

Sucks to not have an appetite, but eat anyway. Make it your job to eat, a box you have to check off by end of day. Let your body do the heavy work by feeding it.

And good tip about sleep, no need to stick to the once a night schedule like everyone else. Every minute helps!

Best of luck.
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5'4" and 1/4" (163.2 cm) | United States | early 30s | Cross-lengthening with Dr. Solomin & Dr. Kulesh

Honore

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Thanks for your update.. Very nice of you to keep us posted amidst all your problems... I wish you all the best

So te be clear.. you now have 4 bones with a nail inside? And I guess you can/cannot get up from your bed/move alone(crutches, wheelchair)? When do you expect to be walking unaided/without crutches(optimum prognoses)?

So this is what I have to endure in the (hopefully) near future(minimum10cm/tibia/femur)? I hope I'll have your guts/stamina

get well, my friend..
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