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[tiggy]

Hey everyone,
A quick update, I am 3 weeks post op and will be hitting 19mm today. I also drove my car today for the first time since surgery! The trip wasn't a long one, I'd say about 3-4 miles back and forth but it felt very good to get out of the house and do something on my own. My right leg did get a little tired so I really wouldn't drive somewhere much farther away, still it was a nice trip. Being stuck in the house is starting to get to me but I just need to suck it up and push on.

Another update re sleeping, I must say I slept better during the first week post op than I do now. Now  I get sore from sleeping on my back and my legs actually get tired from being stretched out all night. So I try sleeping on my sides. Because sleeping on my sides is still uncomfortable, I wake up often to switch sides. But again I must say that I feel progress on that front because it does get slightly easier to sleep on the sides with each passing day. I imagine that within a week or 2 it will get significantly easier and less uncomfortable. That's it for now guys. I'm seeing dr R next week for a follow up and will update the forum accordingly. Be well.

[myloginacc]

Hey, tiggy. Thank you very much for the diary. Very kind of you to share your experience with us here. Wishing you the best of luck through the entirety of your CLL journey.

Do you want to share more on how you came across CLL, your motivations for it, and what made you decide to finally go with it?

All the best, man.

MLA

[tiggy]

Hey, tiggy. Thank you very much for the diary. Very kind of you to share your experience with us here. Wishing you the best of luck through the entirety of your CLL journey.

Do you want to share more on how you came across CLL, your motivations for it, and what made you decide to finally go with it?

All the best, man.

MLA

Hey man, thanks for your wishes. Sure thing.

I wanted to do LL because at my height of 5'3 life isn't easy. Other males don't take you very seriously and overall I just felt insecure around other men and women who were taller than me. After this surgery I will hopefully be 5'6 and while that is not tall or even average for males in US, it is still a decent height when wearing shoes. Even with regular dress shoes I would be 5'7 and to me that is a decent height. Moreover, I would no longer stick out in the crowd as the shortest guy, and that, in and of itself, means a great deal to me.

I first learned of LL about 7 yrs ago, I believe it was from the old forum  community site. Back then I had no means to go forward with it but I knew I would proceed with the surgery some day. But through all these years I frequented both the old forum  community and this site to learn as much as I could about the procedure. Fast forward to present time, my plans were to have the surgery next summer. However, about 3 months ago a close family friend was diagnosed with a brain tumor at a very young age. This came as a wake up call to me. I knew I couldn't postpone the surgery any longer because I did not want to have any regrets in my life when my time came. I know this is very morbid but it's the truth. I also realized that waiting another year made little sense because if I did LL now, by next summer I would be healed and could just move on with my life. Plus it would give me 1 extra year to enjoy my new height. When one thinks of it that way, it all starts falling into place.

I also knew that I had to have this surgery because it was eating me alive, it was constantly on my mind everywhere I went. It became a disease and I just had to get it out of my mind by taking the plunge. All these things ultimately led me to where I am today. This is not to say that I wasn't scared of the surgery. I was immensely afraid of complications and pain. But after that incident with our family friend, I knew all of those things were secondary because we only get 1 chance in life to make the most of it. And in theory most people already know this, and I did too 4 months ago, but when something truly horrific happens to a close family member or a friend, it really changes your perspective. Theory no longer mattered when it wasnt accompanied by action. So I had to act.

Anyway that's my story. Sorry for the long write up but I hope it was useful to you or others reading.

[myloginacc]

Hey man, thanks for your wishes. Sure thing.

I wanted to do LL because at my height of 5'3 life isn't easy. Other males don't take you very seriously and overall I just felt insecure around other men and women who were taller than me. After this surgery I will hopefully be 5'6 and while that is not tall or even average for males in US, it is still a decent height when wearing shoes. Even with regular dress shoes I would be 5'7 and to me that is a decent height. Moreover, I would no longer stick out in the crowd as the shortest guy, and that, in and of itself, means a great deal to me.

I first learned of LL about 7 yrs ago, I believe it was from the old forum  community site. Back then I had no means to go forward with it but I knew I would proceed with the surgery some day. But through all these years I frequented both the old forum  community and this site to learn as much as I could about the procedure. Fast forward to present time, my plans were to have the surgery next summer. However, about 3 months ago a close family friend was diagnosed with a brain tumor at a very young age. This came as a wake up call to me. I knew I couldn't postpone the surgery any longer because I did not want to have any regrets in my life when my time came. I know this is very morbid but it's the truth. I also realized that waiting another year made little sense because if I did LL now, by next summer I would be healed and could just move on with my life. Plus it would give me 1 extra year to enjoy my new height. When one thinks of it that way, it all starts falling into place.

I also knew that I had to have this surgery because it was eating me alive, it was constantly on my mind everywhere I went. It became a disease and I just had to get it out of my mind by taking the plunge. All these things ultimately led me to where I am today. This is not to say that I wasn't scared of the surgery. I was immensely afraid of complications and pain. But after that incident with our family friend, I knew all of those things were secondary because we only get 1 chance in life to make the most of it. And in theory most people already know this, and I did too 4 months ago, but when something truly horrific happens to a close family member or a friend, it really changes your perspective. Theory no longer mattered when it wasnt accompanied by action. So I had to act.

Anyway that's my story. Sorry for the long write up but I hope it was useful to you or others reading.

Thank you very much for sharing your story, tiggy.

If it's also not too personal, may I ask how you went about preparing for the logistics and the finances for CLL during these last 7 years?

Wishing you the best, and a safe lengthening journey!

[tiggy]

Thank you very much for sharing your story, tiggy.

If it's also not too personal, may I ask how you went about preparing for the logistics and the finances for CLL during these last 7 years?

Wishing you the best, and a safe lengthening journey!

Not exactly sure what you mean by logistics but in terms of paying for it, 7 years is a long time to save if you spend little. As they say, if there is a will there is a way. Thanks for reading.

[TheAlchemist]

I first learned of LL about 7 yrs ago, I believe it was from the old forum  community site. Back then I had no means to go forward with it but I knew I would proceed with the surgery some day. But through all these years I frequented both the old forum  community and this site to learn as much as I could about the procedure. Fast forward to present time, my plans were to have the surgery next summer. However, about 3 months ago a close family friend was diagnosed with a brain tumor at a very young age. This came as a wake up call to me. I knew I couldn't postpone the surgery any longer because I did not want to have any regrets in my life when my time came. I know this is very morbid but it's the truth. I also realized that waiting another year made little sense because if I did LL now, by next summer I would be healed and could just move on with my life. Plus it would give me 1 extra year to enjoy my new height. When one thinks of it that way, it all starts falling into place.

I also knew that I had to have this surgery because it was eating me alive, it was constantly on my mind everywhere I went. It became a disease and I just had to get it out of my mind by taking the plunge. All these things ultimately led me to where I am today. This is not to say that I wasn't scared of the surgery. I was immensely afraid of complications and pain. But after that incident with our family friend, I knew all of those things were secondary because we only get 1 chance in life to make the most of it. And in theory most people already know this, and I did too 4 months ago, but when something truly horrific happens to a close family member or a friend, it really changes your perspective. Theory no longer mattered when it wasnt accompanied by action. So I had to act.

Anyway that's my story. Sorry for the long write up but I hope it was useful to you or others reading.

Thank you for sharing your story. I connected with this in so many ways. The key take away for me was time is valuable. Such a painful yet powerful experience this is. The realization and perspective that time is valuable and taking action through LL, while at the same time, embarking on one of the longest, most painful journeys through LL. I've never felt this level of anxiety, fear and optimism all at once.

[tiggy]

Thank you for sharing your story. I connected with this in so many ways. The key take away for me was time is valuable. Such a painful yet powerful experience this is. The realization and perspective that time is valuable and taking action through LL, while at the same time, embarking on one of the longest, most painful journeys through LL. I've never felt this level of anxiety, fear and optimism all at once.

Hey Alchemist,

The things you are feeling are totally normal and I had the exact same feelings. In fact, as I was being wheeled into the OR I still couldn't believe that I was about to have my perfectly healthy legs broken and all because of my mental height dysphoria. But I also knew it was too late to turn back and at that point you just let go. Honestly this experience, so far, has been nowhere near as difficult pain wise as I've imagined and read about on this forum. Perhaps it's because of the Stryde nail, perhaps it's the drs skill, or maybe it's just my own body's reaction to this or maybe it's a little bit of each. Either way there are so many people out there who are dealing with death and loss of a kind someone healthy can hardly imagine. My point is, take the plunge if you know it must be done, try to minimize anxiety and fear by realizing how lucky you are to be healthy and able to do something like this, deal with discomfort for 3 months and move on. Live your life the best you can, do what makes you happy and hope for a long and healthy life. It's such a simple concept yet often overlooked and overthought by many, including myself (until this horrific news came my way 3 months ago). It's interesting actually because as soon as I found out about it, I literally called dr Rs office within I think 3 days to schedule a consultation. I had surgery about 2 months later. So you can see the impact all of this had on me. And guess what, I don't regret a single thing. Of course I may regret it later but I hope not and I doubt I will knowing myself. Sorry for the long speech but I thought it important to share this with the community.

Also, for those reading, please do not take this post as an encouragement to proceed with this surgery with sub par drs at sub par facilities. It is immensely important who you choose as your surgeon and if I wasn't truly at peace with my choice, I would never had put my health and healthy legs at such a risk. Please do your due diligence because you owe it to yourself. Be well.

[tiggy]

Hey guys, I've hit 22cm today and I'm having somewhat of an issue. Since yesterday the front portion of my right tibia has been getting numb. First it would appear when my leg was motionless for a few minutes, for example when sitting or laying on my stomach. Today it's been more frequent and the numbness extends to my knee if I don't shake off my leg and switch positions. I've contacted dr R and he advised that I slow down to 3 times a day. I'm very upset about this because it means the lengthening phase will be extended. My question for those LL veterans reading, have you experienced something similar and has the numbness subsided for you? If so what caused the numbness to go away? I'm just worried that if it doesn't go away after I drop down to 3 sessions a day, I may be forced to stop so as not to cause nerve damage. Any and all responses are welcome

[InFullStryde]

Hey guys, I've hit 22cm today and I'm having somewhat of an issue. Since yesterday the front portion of my right tibia has been getting numb. First it would appear when my leg was motionless for a few minutes, for example when sitting or laying on my stomach. Today it's been more frequent and the numbness extends to my knee if I don't shake off my leg and switch positions. I've contacted dr R and he advised that I slow down to 3 times a day. I'm very upset about this because it means the lengthening phase will be extended. My question for those LL veterans reading, have you experienced something similar and has the numbness subsided for you? If so what caused the numbness to go away? I'm just worried that if it doesn't go away after I drop down to 3 sessions a day, I may be forced to stop so as not to cause nerve damage. Any and all responses are welcome

Hi Tiggy, I started to experience numbness in both of my shins at about the 2 inch mark; so you're a bit early compared to me; but nothing that is out of the ordinary.   I first became numb in the left and then in the right.  These are superficial nerves that are being stretched out and hence are starting to feel numb.  At this point; I'm sure as Dr. R will explain there is nothing to be concerned about in terms of motor function. The numbness was not too uncomfortable for me; unless I would feel an itch in area. It's hard to scratch an itch you can't touch (because you can't feel it, lol).  Other discomforts are at night time.  Almost felt like tiny little explosions/tingling as the days would wear on.  2 months now, post lengthening, I have most feeling back in shins and it continues to improve.  I would not worry about anything until you absolutely need to.  When I finally got to 75mm (7.5cm and 3"); my chins we're very numb; but it was bearable and everything came back in good order.  You're good to go; but of course monitor closely.   My main take away I want you to have from this post is to not worry about this.  Most all CLL patients will experience numbness in at least one of their shins.  It's something that you usually will push through and feeling comes back. 

Let me know if you have any additional questions.   

All the best,

IFS

[tiggy]

Hi Tiggy, I started to experience numbness in both of my shins at about the 2 inch mark; so you're a bit early compared to me; but nothing that is out of the ordinary.   I first became numb in the left and then in the right.  These are superficial nerves that are being stretched out and hence are starting to feel numb.  At this point; I'm sure as Dr. R will explain there is nothing to be concerned about in terms of motor function. The numbness was not too uncomfortable for me; unless I would feel an itch in area. It's hard to scratch an itch you can't touch (because you can't feel it, lol).  Other discomforts are at night time.  Almost felt like tiny little explosions/tingling as the days would wear on.  2 months now, post lengthening, I have most feeling back in shins and it continues to improve.  I would not worry about anything until you absolutely need to.  When I finally got to 75mm (7.5cm and 3"); my chins we're very numb; but it was bearable and everything came back in good order.  You're good to go; but of course monitor closely.   My main take away I want you to have from this post is to not worry about this.  Most all CLL patients will experience numbness in at least one of their shins.  It's something that you usually will push through and feeling comes back. 

Let me know if you have any additional questions.   

All the best,

IFS

Hey IFS,

Thank you so much for putting my mind at ease. Dr R said it sounds like a stretch on a sensory nerve and dropping down to 3 sessions a day usually resolves the problem. I really hope he is right because if numbness came on this early, dealing with it for another 2 months is going to be hell. Did you slow down your pace of lengthening after the numbness came on?

[InFullStryde]

Hi Tiggy,

I did not slow down the pace due to the numbness alone. As I approached the 2 inch mark, I was getting tight and very uncomfortable some days.  As a result, I would skip sessions here and there all the time.  My goal was to not allow the lengthening process to exceed 90 days; but I took all kinds of .33 sessions off to ease the process.  I even took as much as a day or two off in order to ease the pressure.  If not for the 'breaks" I would have never gotten through to 3 inches.   As you push toward 2 inches; you're going to feel your knees wanting to bend and not straighten along with you quadracepts pulling down on your pelvis; making you want to lean forward all the time... Not to worry; PT and time will heal all....muscles get tight with this process and it takes these weeks and months to get past.   

[tiggy]

Hi Tiggy,

I did not slow down the pace due to the numbness alone. As I approached the 2 inch mark, I was getting tight and very uncomfortable some days.  As a result, I would skip sessions here and there all the time.  My goal was to not allow the lengthening process to exceed 90 days; but I took all kinds of .33 sessions off to ease the process.  I even took as much as a day or two off in order to ease the pressure.  If not for the 'breaks" I would have never gotten through to 3 inches.   As you push toward 2 inches; you're going to feel your knees wanting to bend and not straighten along with you quadracepts pulling down on your pelvis; making you want to lean forward all the time... Not to worry; PT and time will heal all....muscles get tight with this process and it takes these weeks and months to get past.

All of that makes sense. I guess I just had it so easy up to now that I thought it would stay that way. I gotta buckle up for some major turbulence! Your posts have really put me at ease IFS truly man thank you so much for that. I will keep you and others posted as to my progress with numbness. I will skip my 4th session tonight and give it a few days to see if dropping the sessions to 3 makes a difference. I really hope it does so that I can try going back to 4 sessions to speed up the process. Just knowing that the lengthening is going to take longer than I expected is bringing my spirits down. Let's see what happens!

[InFullStryde]

All of that makes sense. I guess I just had it so easy up to now that I thought it would stay that way. I gotta buckle up for some major turbulence! Your posts have really put me at ease IFS truly man thank you so much for that. I will keep you and others posted as to my progress with numbness. I will skip my 4th session tonight and give it a few days to see if dropping the sessions to 3 makes a difference. I really hope it does so that I can try going back to 4 sessions to speed up the process. Just knowing that the lengthening is going to take longer than I expected is bringing my spirits down. Let's see what happens!

I understand. :-) You're in good shape, still. As reference, my surgery was January 3rd and my last turn on the machine was on April 6th.  :-)

[tiggy]

I understand. :-) You're in good shape, still. As reference, my surgery was January 3rd and my last turn on the machine was on April 6th.  :-)

Ah so you were almost in that 90 day span! Good to know, I'll keep that in mind. Thanks!

[tiggy]

Hey,

Here we are on day 27 and 2.4mm on. Im lengthening 3 times a day at .25mm as per dr Rs instructions. Unfortunately lowering the sessions did nothing to alleviate my symptoms. In fact things have gotten worse. I now have the numbness at all times and must move my leg every few minutes to find a comfortable spot to ease the numbness burn. Last night  pain was at it's worst, about 5-6. The numbness felt like a burning sensation plus needles and sharp shooting pain. The only way to help the pain was to sleep on my side but I'm afraid that even that tactic will start wearing thin as this goes on. I've notified dr R about it this morning so perhaps he can prescribe some sort of medication to help the pain. I haven't heard back yet.  I also fear that this may become permanent and not end post lengthening. That would be truly horrific because this numbness and pain is terrible. I can't imagine wearing anything against my shin without burning up from heat. Anyway I will raise these concerns with him as soon as I see him and report back. Let me know if you have questions. Thanks for reading.

[Ghostfish]

Hey,

Here we are on day 27 and 2.4mm on. Im lengthening 3 times a day at .25mm as per dr Rs instructions. Unfortunately lowering the sessions did nothing to alleviate my symptoms. In fact things have gotten worse. I now have the numbness at all times and must move my leg every few minutes to find a comfortable spot to ease the numbness burn. Last night  pain was at it's worst, about 5-6. The numbness felt like a burning sensation plus needles and sharp shooting pain. The only way to help the pain was to sleep on my side but I'm afraid that even that tactic will start wearing thin as this goes on. I've notified dr R about it this morning so perhaps he can prescribe some sort of medication to help the pain. I haven't heard back yet.  I also fear that this may become permanent and not end post lengthening. That would be truly horrific because this numbness and pain is terrible. I can't imagine wearing anything against my shin without burning up from heat. Anyway I will raise these concerns with him as soon as I see him and report back. Let me know if you have questions. Thanks for reading.

Hi tiggy
I think that is probably due to the extension of nerve.  I also had a similar problem in my right leg, while my left leg was completely fine until the end, although I did IT band release on both legs.  I don't know whether you did IT band release.  If not, you may need to do that.  If so, you just need to hang in there.  Stretching, walking, and slow extension could help. 

The thing is after lengthening done, this burning and numbness have been gone

Stay strong!

[tiggy]

Hi tiggy
I think that is probably due to the extension of nerve.  I also had a similar problem in my right leg, while my left leg was completely fine until the end, although I did IT band release on both legs.  I don't know whether you did IT band release.  If not, you may need to do that.  If so, you just need to hang in there.  Stretching, walking, and slow extension could help. 

The thing is after lengthening done, this burning and numbness have been gone

Stay strong!

Thanks for responding Ghostfish.
Yes I did have IT band release on both legs. It's good to know that your symptoms went away after you stopped lengthening. Do you recall how long after you stopped lengthening that they went away? Also, did you take anything for the pain while your symptoms lasted? If so, did that help you manage the situation?

[Ghostfish]

Hi tiggy

I didn't take any special medicine for nerve pain other than oxycodone which doesn't really do much for nerve pain. The problem went away about one month after lengthening, perhaps a little longer.  Other patients also did have similar pain or problem but they managed to finish lengthening.  I am not 100% sure about your case, since I am not a doctor.  So discuss it with Dr. R. 

[Kenda]

Thanks for responding Ghostfish.
Yes I did have IT band release on both legs. It's good to know that your symptoms went away after you stopped lengthening. Do you recall how long after you stopped lengthening that they went away? Also, did you take anything for the pain while your symptoms lasted? If so, did that help you manage the situation?

Tiggy may i ask what was the original Length of your femur before surgery ?
& Did IT Band help at all or what, becuase you shouldnt be feeling such tension at only 2.4 cm i guess, right?
plus what are you aiming for in femur ? 6cm? or do you think you can go up to 8cm...?

also i forgot are you the one that did tibia and is now doing femur or this is your first time?

[tiggy]

Hi tiggy

I didn't take any special medicine for nerve pain other than oxycodone which doesn't really do much for nerve pain. The problem went away about one month after lengthening, perhaps a little longer.  Other patients also did have similar pain or problem but they managed to finish lengthening.  I am not 100% sure about your case, since I am not a doctor.  So discuss it with Dr. R.

Yea I will discuss the options with him. Your reply was very helpful though, thank you

[tiggy]

Tiggy may i ask what was the original Length of your femur before surgery ?
& Did IT Band help at all or what, becuase you shouldnt be feeling such tension at only 2.4 cm i guess, right?
plus what are you aiming for in femur ? 6cm? or do you think you can go up to 8cm...?

also i forgot are you the one that did tibia and is now doing femur or this is your first time?

Hi there,
I don't have the measurements of my femur before surgery because I never cared to take that information down. I did have IT Band release and I think my nerve pain has nothing to do with that because I don't feel all that tight right now. My flexibility at the moment  is actually excellent and I wasn't foreseeing having serious tightness issues until about 5cm actually. So this nerve pain really took me by surprise and I guess it's just bad luck since it seems I am having it earlier than other patients.

My goal was to go 7.5-8cm since I am not planning to have tibias done in the future. I'd like to do all I can to reach that goal but it's going to be extremely difficult if things stay the way they are, or even worsen.  Not to mention that the burning sensation really hinders my PT because I can't stay in one position for more than a few minutes. this is why I hope my dr prescribes something that helps with this nerve situation. I will be hitting 1 in today so I'm not even half way done yet, so you can imagine my frustration. I was scheduled to see him Thursday for a follow up but now I may schedule it for tomorrow. Either way I will update the forum once I speak to him.

[InFullStryde]

More experience info on this - I can remember, as I approached 2 inches, I had numbness and that tingling burning sensation for almost every night thereafter.  All the discomfort went away and I got my feeling back about 30 days after I completed lengthening. 

[tiggy]

More experience info on this - I can remember, as I approached 2 inches, I had numbness and that tingling burning sensation for almost every night thereafter.  All the discomfort went away and I got my feeling back about 30 days after I completed lengthening.

Hey man,
Yea you mentioned something of the sort. Like you I just have to push through this somehow. I want those 2 extra inches too much! I just hope dr R tells me it's safe to go forward, I don't need any more surprises lol. Right now I have that end goal in mind and it will feel amazing to conquer all this and reach that final point. I won't quit until dr R himself tells me to stop. Just gotta suck it up and push through this!

[tiggy]

Guys I just realized that I've been so busy complaining about my right leg numbness that I forgot to update on the latest developments in terms of recovery and height gain!

So today I am officially 1 inch taller. I don't notice a significant difference between being 5'3 and 5'4 lol but it does feel great to finally be taller than my mom and my sister (who are both 5'3). I keep picturing how amazing it would feel to be a whole 3 inches taller than them if I reach my goal of 5'6. Other than that, I now can get up from my bed or couch by pushing off with my hands alone and I don't need to hold on to the walker in order to stand up on my feet. Of course the lower the seating surface, the more help I need to push off by using the walker. For example when I use the toilet, I need the walker to lift me up because the seat is too  low.

In terms of pain, I've had 0 pain since the 2nd week post op (until the nerve pain kicked in 3 days ago). Currently I only take 2 Tylenol pms before bed because I notice my sleep is better while on it. I also take aspirin and the vitamins I am prescribed. I will finish the prescription meds in few days and will only be taking vitamins. I am looking forward to this because I hate ingesting chemicals.

That's about it in terms of the most recent updates. As always, I'm open to questions. Thanks for reading.

[TheAlchemist]

Guys I just realized that I've been so busy complaining about my right leg numbness that I forgot to update on the latest developments in terms of recovery and height gain!

So today I am officially 1 inch taller. I don't notice a significant difference between being 5'3 and 5'4 lol but it does feel great to finally be taller than my mom and my sister (who are both 5'3). I keep picturing how amazing it would feel to be a whole 3 inches taller than them if I reach my goal of 5'6. Other than that, I now can get up from my bed or couch by pushing off with my hands alone and I don't need to hold on to the walker in order to stand up on my feet. Of course the lower the seating surface, the more help I need to push off by using the walker. For example when I use the toilet, I need the walker to lift me up because the seat is too  low.

In terms of pain, I've had 0 pain since the 2nd week post op (until the nerve pain kicked in 3 days ago). Currently I only take 2 Tylenol pms before bed because I notice my sleep is better while on it. I also take aspirin and the vitamins I am prescribed. I will finish the prescription meds in few days and will only be taking vitamins. I am looking forward to this because I hate ingesting chemicals.

That's about it in terms of the most recent updates. As always, I'm open to questions. Thanks for reading.

Congrats on that first inch! Time seems to be flying by and and the huge progress so far, already 1/3 of the way there and past what many describe as the hardest part!

How's the numbness moving along? As well as overall pain management and sleep?

Thanks

[tiggy]

Congrats on that first inch! Time seems to be flying by and and the huge progress so far, already 1/3 of the way there and past what many describe as the hardest part!

How's the numbness moving along? As well as overall pain management and sleep?

Thanks

Hey Alchemist,

Thanks. However those weeks were nowhere near the hardest part. For me now is the hardest. The pain in my right shin hasn't improved at all. It has in fact worsened. The burning and numbness is now accompanied with some episodes of severe pins and needles sensation. On a few occasions that pain has reached a 7-8. I now walk by trying to keep weight off my right leg. Dr R has put me on neurontin, first it was 100mg 3 times a day but that did nothing. Since yesterday he increased it to 200mg 3 times a day but I don't feel much difference. I am also now lengthening my left leg 3 times a day and the right only 2 times to help improve my symptoms. If things don't improve in couple of weeks, I may need a neuroplasty procedure to locate the nerve and check for abnormalities that may be causing me this headache. Dr R does not perform this procedure and he referred me to someone else for it. I still haven't made the decision and will wait at least another week to see how I feel. But something tells things will not improve by taking 200 mg of neurontin and lowering the lengthening to 2 sessions a day. We will see how it goes.
As to sleep, I sleep well, at least 8 hrs a day. I wake up at night to change sides because sleeping on my side is the only thing that alleviates the pain for me. That's about it for now.  Thanks for checking in on me though, much appreciated. Feel free to send questions my way if need be.

[TheAlchemist]

Tiggy, thanks for the update. Thoughts are with you, hoping this numbness passes with time. Please keep us updated with your progress. Rooting for you man!

[tiggy]

Tiggy, thanks for the update. Thoughts are with you, hoping this numbness passes with time. Please keep us updated with your progress. Rooting for you man!

Will do, thanks brother

[TheAlchemist]

Hey Tiggy, how's it going? How are you managing the numbness?

[tiggy]

Hey Tiggy, how's it going? How are you managing the numbness?

Hey Alchemist,

Thanks for checking in. Numbness is the same but my symptoms have improved. He doubled my gabapentin dose and I'm lengthening 2 times on the right leg and 3 times on the left. I noticed less burning now and less of the pins and needles sensation, though both are still there. Point is that now they are much more manageable. The annoying part is that the pace is slow which means if I keep lengthening only twice on the right leg, it will double the lengthening time for me. I do hope that when I see him next week that he will allow me to increase the pace on the right leg. We will see what he decides.

[Ghostfish]

Hi tiggy

sorry to hear that you have problems that cause you to slow the pace.  As I mentioned above, most of problems are due to lengthening/extending.  I think your case is likely the same, since you do feel better after slowing down the pace.  It is a sort of tug of war between contraction forces by your tissues (muscles, tendons, and nerves) and extension forces by lengthening and physical therapy. It is a losing game in the end but everyone is different so it is the matter of when it happens to people.  Unfortunately, it seems to happen too early for you.  You just have to go through it by doing enough PT and adjusting lengthening rate.  I do want to tell you that nerves or muscles seem to adjust themselves at some point, meaning that they may react at the beginning but adjust themselves a little bit to face their new environments.  For example, I had a burning sensation in my right leg around knee at the beginning which made me so hard to stretch the knee.  Later on (I don't remember exactly when, perhaps around 5-6 weeks lengthening), my right leg got better but left leg started to feel the same burning feeling during stretching.  Anyhow, I just managed to finish all my journey.  You can do it too!

Good luck!