Hi IFS,
Thank you very much for this informative diary. You seem like a great guy and a positive human being, I truly wish you the best in your recovery and in life in general.
Ive been lurking on this site for probably 7 yrs, if not more. I have decided to proceed with this as well and I am in the process of booking surgery with Dr. Rozbruch for this coming May. I should be finalizing a date sometime next week. I am very excited about the surgery but at the same time very nervous and scared as well, mainly because of the pain. With this said I have a few questions for you. I have read your diary in full, and have been following it closely every day. Thus I believe these questions haven't been brought up yet but forgive me in advance if they have been answered and I've just somehow missed your answers. I will number them so that it is easier to answer:
1. You've said that you are very tight and may stop at around 6.5 or 6.9cm but what is the pain like now after you have passed the 5cm mark, which from the looks of it seems like relatively easy to get to and becomes much more difficult as you progress past 5cm. Do you experience dull pains, sharp ones, are you taking pain medication because of the pain? Please explore this aspect a little more if possible. Pain is something I am very much afraid of and I expect it to be quite intense. I believe its best to prepare for the worst, but then again pain is so individual that it is hard to even imagine how intense it can really be.
2. how did you get around post-op in terms of using the toilet, like sitting down on the seat, getting up, etc. the first week after surgery? What did you find the most difficult to do? Did someone assist you?
3. when leaving the hospital on the day of surgery did you bring your own wheelchair to the hospital or did they provide you with one, which you later returned? I think you recommended buying one that leans all the way back so that we can sleep on it, and I intend to do just that. I am just not sure whether I should take it with me to the hospital, and while I will be asking the relevant parties from Dr. Rozbruch's office, I was just curious how you resolved this question.
4. do you regret having gone through with the surgery? was the pain more intense than what you expected, less or about the same? From reading your diary I do not believe that you regret the procedure but just wanted to confirm 
5. lastly, what would you change, if you could do this over again, in order to make the process easier for yourself. Any tips (aside from the ones you have so generously given on prior pages) would be immensely helpful.
Thats about it for now and if you have any questions for me please feel free to ask. Thanks IFS!
Hi Tiggy,
I'm very glad to assist in any way I can. Thank you for these questions. They are excellent. First of all; I'm excited for you and I'm certain you will really benefit from the gains of 2-3 inches of height. It does make a difference. I will answer your questions 1 by 1:
1. You've said that you are very tight and may stop at around 6.5 or 6.9cm but what is the pain like now after you have passed the 5cm mark, which from the looks of it seems like relatively easy to get to and becomes much more difficult as you progress past 5cm. Do you experience dull pains, sharp ones, are you taking pain medication because of the pain? Please explore this aspect a little more if possible. Pain is something I am very much afraid of and I expect it to be quite intense. I believe its best to prepare for the worst, but then again pain is so individual that it is hard to even imagine how intense it can really be.
To be completely honest, the pain for me has been very low, even after 5cm. The tightness has been more of a discomfort than anything else. While resting, practicing my walk on crutches, etc, etc. I have little to no pain at the post 5cm point. The worst pain that you experience during CLL will likely be during the first 2 weeks. The pain from the first 2 weeks simply includes the post surgical pain that goes along with the healing of your wounds and initial shock of or surgery. At week 3, things begin to get much better. You may have some positions that give you a bit more pain than others; but you will be able to easily avoid those positions most of the time; until you are feeling better. Week 4 and on you really do not experience much pain at this point. You may feel some soreness from Physical therapy, or the occasional lingering dull pain; but nothing that would distract you to much. I'll emphasize that most of the pain and use of pain medication is really during the first 3 week. Week 4 and on, things are much better and the process becomes very tolerable and predicable at that point. Now, once you start to get very tight it can feel very uncomfortable and it also causes some anxiousness on your side. It is not a natural way for your body to feel and just know that once you finish lengthening that the tightened muscles, with the help of stretching and assisted walking, begin to immediately adjust to the new length of your bones.
2. how did you get around post-op in terms of using the toilet, like sitting down on the seat, getting up, etc. the first week after surgery? What did you find the most difficult to do? Did someone assist you?
I have to admit, the first week after surgery was the toughest for me. I'm not sure if you recall, but I had a sore/weaker left leg; so I could not even use the walker during the 1st week or so. I needed the help of my brother for transferring to my bed. As far as restroom was concerned, I went number 1 in Urinals for the first couple of weeks and used a bed pan that slid under my butt to go number 2. During week 3, I was finally able to use the walker to get myself to the restroom and around other places in my apartment. My advise is to ensure that you have help from someone for the first two weeks at least. This person should assist you with transferring to bed, car, restroom, etc. This person will also help you prepare meals, etc as needed. It is just very helpful to have someone with you to start out. If they can stay a month or more that is even better.
3. when leaving the hospital on the day of surgery did you bring your own wheelchair to the hospital or did they provide you with one, which you later returned? I think you recommended buying one that leans all the way back so that we can sleep on it, and I intend to do just that. I am just not sure whether I should take it with me to the hospital, and while I will be asking the relevant parties from Dr. Rozbruch's office, I was just curious how you resolved this question.
Okay, usually the hospital can easily provide this for you at discharge. One piece of advise I have is to contact a Wheel Chair Transportation Company which will bring a wheelchair to the hospital and take you home safely. This way, you will not have to concern yourself with having family or friend drive you home. Your legs will be a bit sensitive to the touch right after surgery, so the less having to maneuver your way in and out of car seats is best. By hiring a Wheel Chair Transportation Company, you make this easy and pain free on yourself. At home you will have your own Wheel Chair waiting on you. You do not need to bring your wheelchair to the hospital. When you are dropped off by the Wheel Chair Transportation Company, they will push you all the way into your residence and even help you onto your new wheel chair. I definitely recommend getting a wheelchair that will allow you to fold it back a full 180 degrees if needed. This way you can easily lay down and rest without having to transfer. Many people who have CLL often comment that sitting down is alot more comfortable than laying down; so this is another great reason to have this kind of chair.
4. do you regret having gone through with the surgery? was the pain more intense than what you expected, less or about the same? From reading your diary I do not believe that you regret the procedure but just wanted to confirm
No regrets at all. I love my new height (still in progress) and I know that once I am recovered that I will benefit so much from my gains. I think I may have overestimated the Stryde Nail a bit. What i mean is that just because the new nail can hold your weight; it doesn't mean that you will be walking from day 1 or even day 20. It may take some signification time before you are walking. I have read some stories where the CLL patient is walking 5 days after surgery. For me, this wasn't the case. I wasn't taking full unassisted steps until, I believe week 4. This was due to a weak left leg. This isn't to say that you want be walking earlier; but just remember that with the Styrde nail, you are allowed to put full weight on it as soon as you can tolerate and this serves as a big advantage over the past Precise nail. Also, keep in mind that you will prefer to be on your walker or crutches for much or your distraction. Walking on your own feet will be a tad painful and difficult. I will be 100% done with distraction phase by April 1st and I'm already able to take baby steps with no assistive devices. With this in mind, I have confidence that I should be walking close to normal in 2 - 3 months (by July or sooner).
5. lastly, what would you change, if you could do this over again, in order to make the process easier for yourself. Any tips (aside from the ones you have so generously given on prior pages) would be immensely helpful.I will think more on this one and get back to you; but with this in mind I would have focused and even Obsessed more on 2 areas that currently are bothering me a bit.
1) Duck Ass (Anterior Pelvic Tilt) - Start working out your glutes from the first moment you are awake from surgery. Weak Glutes is what causes Duck Ass in CLL. I didn't really start pushing my glutes until week 4 and I believed that payed a roll in my slight duck ass that I will need to resolve. No big deal, but it is a tad annoying.
2) Leg Straitening - In my right leg, I have a 2 degree knee bend. Lol. I know that doesn't seem like a lot and I should have no issue resolving in the coming weeks; but I think I could have avoided it if I would have been constantly focused on keeping my leg straight.
I have a 3rd bit of advise. Ask any and all questions you feel necessary to your Doctor and never hesitate to contact your Doctor. One item I definitely recommend is to have your Physical Therapist reach out to Dr. Rozbruch and have a brief conversation about the procedure. Your PT should know from your doctor what has happened and what he recommends as well as what to look out for. Also, emphasize with your PT the need to ensure that you legs remain straightened and you want to avoid Anterior Pelvic Tilt. Ask specifically for him or her to incorporate these work outs into your PT plan.
I hope this helped a bit. I will think of more items as they come to mind and update. Feel free to reach out or ask additional questions as needed. Thank you again for reading my diary and best regards to you!
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Topic: Diary - January 2019 - In Full Stryde with Dr. Mahboubian of North Hollywood. (Read 123140 times)