Diary - June 2019 - Stryde with Dr. Mahboubian of North Hollywood

Hello everyone,

Today June 23 is my 3rd full day after surgery.

A little about me - I'm 32, male, single and stand 5 foot 5.5 inches. My mother is helping me out during this process, she stops by at 11am and 11pm.

June 20 - Day of surgery - I got an uber @4:30am to the hospital. Arrive at 5:30, a bit of paperwork and it's off to the preop room to change into a gown. I see Dr M and he asks if I got any last questions, otherwise surgery starts around 7:00am. I wake up around noon after surgery and in considerable pain, but this pain is expected. By 8pm I've taken my first steps with the walker

June 21 - The hospital room is nice, a single bed room with tv and internet. Meals are pre ordered. And all the nurses and nurse assistants have phones that have a direct line to your bed control. The pain comes and goes, but is clearly worse after walking. I've walked all the down the hallway now.

June 22 - Discharge day - nothing too exciting, some light PT in the morning and I'm home by 2pm. Sleeping in my own bed is actually much more painful than the hospital, I don't know if it's the lack of constant ice or lower medications or what exactly.

June 23 - Today- My first full day outside of the hospital - It is very taxing moving around, using the restroom is very annoying. I don't think this would be possible if I didn't have so much upper body strength.  I am pretty much wheel chair bound, though I can use crutches/walker when needed ie the bathroom. But getting up from the sitting position is very taxing

I see Dr M on friday, and I'll update this thread then, but feel free to ask any questions. Here is a pic of my hospital white board https://imgur.com/a/QeblcTs as proof that Dr M is my doc.

hi bishopcheck
congrats on your journey! Don't worry about wheelchair right now. It is normal to use wheelchair now. You will feel quite some pain for about 2 weeks due to the surgery and get better and better. Just try to use walker as much as you can until the pain is reduced, normally ~ 2 weeks. Then you can start using the crutches and move onto a cane a couple of weeks later.

Good luck and take care!

Quote from: bishopcheck on June 24, 2019, 05:45:00 AMHello everyone,

Today June 23 is my 3rd full day after surgery.

A little about me - I'm 32, male, single and stand 5 foot 5.5 inches. My mother is helping me out during this process, she stops by at 11am and 11pm.

June 20 - Day of surgery - I got an uber @4:30am to the hospital. Arrive at 5:30, a bit of paperwork and it's off to the preop room to change into a gown. I see Dr M and he asks if I got any last questions, otherwise surgery starts around 7:00am. I wake up around noon after surgery and in considerable pain, but this pain is expected. By 8pm I've taken my first steps with the walker

June 21 - The hospital room is nice, a single bed room with tv and internet. Meals are pre ordered. And all the nurses and nurse assistants have phones that have a direct line to your bed control. The pain comes and goes, but is clearly worse after walking. I've walked all the down the hallway now.

June 22 - Discharge day - nothing too exciting, some light PT in the morning and I'm home by 2pm. Sleeping in my own bed is actually much more painful than the hospital, I don't know if it's the lack of constant ice or lower medications or what exactly.

June 23 - Today- My first full day outside of the hospital - It is very taxing moving around, using the restroom is very annoying. I don't think this would be possible if I didn't have so much upper body strength.  I am pretty much wheel chair bound, though I can use crutches/walker when needed ie the bathroom. But getting up from the sitting position is very taxing

I see Dr M on friday, and I'll update this thread then, but feel free to ask any questions. Here is a pic of my hospital white board https://imgur.com/a/QeblcTs as proof that Dr M is my doc.

Good luck, Bishop. You're in good hands with Dr. Mahboubian.  I'm on most 5 1/2 post surgery and things are looking better. 3 inches taller and getting closer to being recovered each day. It was the best investment I've ever made. Feel free to reach out if you have questions.

Hi bishopcheck,

Congratulations!  I had surgery with Dr. M in January 2018.  Wishing you well in your recovery. The first 2-3 weeks are toughest, but you’ll adjust.  The whole thing will be over before you know it.  If you go the full 3”,  the new height of 5’8.5” will be incredible.

Keep us posted. 

Congrats on starting your journey! Rooting for you. Couple of questions:

1) How have you managed work/ career through this process? Did you quit your job, request a LOA, work remote?

2) Outside of your mom, what have you communicated to friends/families? Did you tell them about the procedure? How have you explained being away for 3 to 6 months?

Thanks

Awesome another Mahboubian Diary, congrats bro! Might be seeing you around lol my surgery is coming up ... quickly

Hey there guys, I just got back from Dr Mahboubian's office for my first checkup and to pick up the ERC device. Before I get to that, I'll answer some questions and talk about this past week.

Quote from: TheAlchemist on June 24, 2019, 08:14:14 PMCongrats on starting your journey! Rooting for you. Couple of questions:

1) How have you managed work/ career through this process? Did you quit your job, request a LOA, work remote?

2) Outside of your mom, what have you communicated to friends/families? Did you tell them about the procedure? How have you explained being away for 3 to 6 months?

Thanks

1. Right now, I manage some property and will be able to continue doing so.
2. I haven't told any of my friends or other family. I have told my other doctors since I'm trying to have the VA cover the physical therapy. As for not seeing anyone, I've actually told everyone that I've had surgery on my ankle. I was injured in an IED explosion in Iraq, and everyone knows I've had issued with my ankle since then and I've been talking about getting the screws removed for years now. But who knows how well this lie will stand up the next time my sister or cousins actually see me taller than them.

@ InFullStryde and LAGrowin Thanks for the kind words, I've read both your diaries and many of my concerns were alleviated afterwards. So again thanks for taking the time to write out such detailed experiences.

Days 2-6 post op
Besides the day of surgery, the pain at home has been much worse than at the hospital. I do however believe this is largely because I forgot the take the ice packs the hospital gave me and have been using reusable packs that only last an hour. So I've been only been able to ice 3-4 hours a day between refreezing. Yesterday, I received the ice packs that are used at the hospital, yes I ordered the same ones, they were $8 for a pair so I ordered 4. I felt much better yesterday after having ice on pretty much all day and night.

Different types of pain
So there's this pain that feels like the most ultimate soreness preventing me from moving my muscles. This pain isn't so bad, it's located between the knee and hip the entire length of the femur. But there's a much sharper more debilitating pain that flares in the knees and hip area mostly during movement. That being said, the pain is manageable and annoying, but I can deal with it. I've also had much worse pains so comparably this is easy.

Sleep has been pretty bad
 I haven't had a single sleep session last more than 3 hours, partly because of the pain, sleeping on my back when I'm a stomach sleeper, and having the use the restroom. I also have a real difficult time getting comfortable in my bed, either my knees hurt or my hip hurts, or my glutes or w/e. I found having extra pillows to put under my knees, butt, hip etc necessary in an never ending experiment to figure out a decent position for the day.

Movement has been pretty good
 Despite the pain and soreness my range of motion seems pretty good. With the walker or a single crutch I can pick up things off the floor, dress myself, get in and out of the shower. Honestly, I feel that with a bit of preparation I could have done this w/o anybody's(my mother's) help. I would not have wanted to, but for those out there that just can't get someone to help them, it's my opinion that it can be done. The biggest requirements are having enough upper body strength to push yourself up from the seated position and figuring out how you're going to get groceries.

Day 7

Today I saw DR M for my 1 week checkup and to pick up the ERC Machine.

I felt like I could have driven myself, but opted to have my mother drive since I knew the ERC machine would be difficult/impossible to lug around myself and also my mother wanted to meet Dr M. Everything is looking good so far, except for what might be the beginning of an infection on one of the stitch sites. So Dr M gave me a cephalexin script.

I met with DR M's media manager, I believe the doc is putting together a video or faq of some sort of the Stryde process. Answered a few questions, but nothing too personal. I agreed beforehand that this was ok with me, so no worries guys if you don't want your pictures or story and name posted online, they won't be.

The Nuvasive rep gave me the ERC and told me the instructions. It's honestly so simple I could teach my dog how to do it. I did my first session and that was it. I'm now a minuscule amount taller.

I've emailed my doctor at the VA, hopefully they will provide me the physical therapy I need, otherwise...I'll have to figure something out.


Alright guys that's pretty much it for now. I'll update again next Friday, unless something big happens before then.

Day 8 post op/ day 2 distraction Well I'm only updating because the pain was intense yesterday. My right leg seems fine, almost no pain at all, but my left knee is around a 6 pain level and shoots to 7-8 every 5-10 minutes. The pain lasted through the night and is still with me this morning of Day 9. Norco's had no effect on the pain so I didn't get any sleep last night. Opiotes in general don't have much effect on me though.

I re-read InFullStryde's diary and he too had greater pain starting day 2 of distraction, so I'm not concerned yet, just annoyed.

If the pain doesn't subside a bit today then I'll contact Dr M tomorrow. I know he doesn't want his patients taking NSAID's, but I had a similar pain problem after my ankle reconstruction. Morphine every 4 hours wasn't relieving the pain, and even though NSAID's can interfere with bone growth, my doc decided to give me 800mg Ibuprofen every 6 hours which did help tremendously.

Maybe I should just try some marijuana....

 

Quote from: bishopcheck on June 30, 2019, 05:07:20 PMDay 8 post op/ day 2 distraction Well I'm only updating because the pain was intense yesterday. My right leg seems fine, almost no pain at all, but my left knee is around a 6 pain level and shoots to 7-8 every 5-10 minutes. The pain lasted through the night and is still with me this morning of Day 9. Norco's had no effect on the pain so I didn't get any sleep last night. Opiotes in general don't have much effect on me though.

I re-read InFullStryde's diary and he too had greater pain starting day 2 of distraction, so I'm not concerned yet, just annoyed.

If the pain doesn't subside a bit today then I'll contact Dr M tomorrow. I know he doesn't want his patients taking NSAID's, but I had a similar pain problem after my ankle reconstruction. Morphine every 4 hours wasn't relieving the pain, and even though NSAID's can interfere with bone growth, my doc decided to give me 800mg Ibuprofen every 6 hours which did help tremendously.

Maybe I should just try some marijuana....

Hi Bishop,  I can remember this part of CLL all too well. That first week or so can be tough.  Through the CLL process, particularly during lengthening, and especially the 1st month, you're going to experience odd and random pain.  What helped me was a combination of things...I'll list below:

1) I switched to Tramadol and every 4 hours I believe and at night I would take Tramadol + Tylenol PM.   I had ZERO concern about becoming addicted...It was about fighting the pain for the first couple of week.   Stay on top of the pain pill regiment so you are ahead of the pain game vs having to play catch up.

2) Make sure your legs are in a comfortable position as much as possible. For me, this meant slightly elevated all day while sitting.   

3) At night especially, make sure temperature is Controlled, I found that a fan blowing on me gently helped to ease my discomfort.  I had cold packs handy and always ready to go via the freezer and this helped to ease my surgical pains in the early going.   

4) Sunlight helps...make sure you're going outside at least once daily and if you have windows, open them up.  Stay as sun friendly as you can.  It helps. 

5) Every night, I would have a bose wireless headset with me and play gentle, soothing music that helped me de-focus off of the pain.  Much of the issue at night is that you have nothing to think about other than trying to sleep...so the pain takes hold.... Gentle music, tylenol and tramadol pain med, soothing fan helping with the hotter temps of the summertime, cold packs to help sooth swelling...all of this helps.

6) Not sure if you have tried this; but I don't suggest trying to sleep on the side at all, this early.  You could aggravate your surgical pain and the next day will be washed up dealing with that pain.  Fortunately, all goes away; but my big thing with CLL is "Don't hurt yourself" any more than you have ot. It doesn't help to hurt yourself and aggravate inflammation this, especially this early.

I was contemplating doing CBD or MJ; but I decided not to do it.   One night, I tried some Pot Cookies and it had me in a daze but the pain was still there.  I didn't feel like I was functional enough to help myself if I needed to.  Having said that; I"m not use to Marijuana in the first place; so that could have lead to some of the issue.

Feel free to reach out to me as needed if you have specific questions.

All the Best,

IFS

2.. I haven't told any of my friends or other family. I have told my other doctors since I'm trying to have the VA cover the physical therapy. As for not seeing anyone, I've actually told everyone that I've had surgery on my ankle. I was injured in an IED explosion in Iraq, and everyone knows I've had issued with my ankle since then and I've been talking about getting the screws removed for years now. But who knows how well this lie will stand up the next time my sister or cousins actually see me taller than them.

Hey Bishopcheck ...Did you really get injured in a explosion in Iraq?