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24 Mar 2019
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Past and present, we all want to hear your story.

TOPIC: Surgery with Dr J 4/21/16

Surgery with Dr J 4/21/16 3 years 3 months ago #4511

Sounds like a great start to your recovery!!

Like the guys said above me, your pain will change and evolve over time, but you must expect for it to be there for awhile. The intense pain will dull to a soreness, and if you're like me, the soreness will linger for a few months. You learn to live with it and manage it, and then one day, you will become very aware that it has all but left. The best advice I can give to you now regarding pain is to keep ahead of it and treat it preventatively before it grows out of hand. Try non-medicinal approaches as well, such as hot/cold packs, massage, hot shower (and Epsom salt baths once you are able) as these will help you in ways drugs cannot.

Those photos from surgery say it all. This is the reason we have this surgery!!!!! Congrats on a top notch repair and all the best to you in your recovery. Adhere to the 3 P's: be Positive, be Patient, and be Persistent. This is a journey and some parts of it will move slow. Keep a bright spirit and you will do just fine. :)

Surgery with Dr J 4/21/16 3 years 3 months ago #4513

Thanks for all the continuous support. The major swings of good and bad hours have already been happening.

It looks like I have an allergy to one of the meds I'm on. They suspect the mscotin so I'm back on oxycotin. I don't respond as well to the pain with the icy and the rash is still hanging around. I'm sure it will take days of being off something to figure it out. So this is one of the bummer movements.

I will say though that I'm still glad I did this, right or wrong I'm already planning on what I'll do with my bars once they come out. I think one, maybe two of them, will end up being turned into shifter linkage for my harley. They other will end up in my jeep with some sort of mechanical purpose. It helps me to have a "long term" goal then each day/week/month to set short term goals.

I think overall I'm doing well even with my little complications. I haven't had a bar spin, my body isn't getting a rash from the bars, I'm not in horrible pain, this will all just pass it will be come my life.

That being said, today is my post-op visit and I get to go home. I am excited about that. Seeing my kids is going to be awesome. Now I just have to figure out how to keep my 1yo Great Pyrenees/Boxer mix from wanting to rough house with me....

Surgery with Dr J 4/21/16 3 years 3 months ago #4514

I'd say your recovery is going well. I found out I was allergic to one of my meds too with my entire back turning into one itchy rash. Best of luck on keeping up this forward momentum!

Surgery with Dr J 4/21/16 3 years 3 months ago #4515

That's what's happening to me, my whole back is lit up. I know everyone is different and if you don't want to say, no biggie the , but do you remember what it was that caused the rash?

Also, apologizes for the bad typing. My iPhone isn't probably the best to do this on.

Surgery with Dr J 4/21/16 3 years 3 months ago #4516

it was gabapentin. I had to get a back scratcher

Surgery with Dr J 4/21/16 3 years 3 months ago #4518

They still think mine is the MSCotin causing it. We'll see. My back and legs are lit up pretty bad, but I do think I am getting better. It will take a few days to tell.

Yesterday at the post-OP I had the techs telling me I was moving very well, and Nicole, Marry Ann, and Kelly all told me I'm looking and moving very well. I think I'm recovering well. I plan to continue to post in this thread to keep a decent account of my experiences for at least a year. My true goal is to keep this going until the end when the bars are removed.

So I made it home last night. Sleeping in my own bed was nice. I over slept my med schedule and woke up in a bit of pain, but I was able to fix that pretty quickly and am doing pretty well now.

As a random thought I have always worked since I was 15. I was either at a job or in school, or near the end of college I was dong both. The only times I was home during the week was when I was sick. I'm sitting here now in the house by myself, in a nice calm relaxing feeling. My dogs are snoozing on the couch next to me and it's kind of nice.

Overall the recovery from this surgery isn't as bad I thought it was going to be. I have had some rough days like people have said, but I'm one week post op and so far at best I have a rough hour here and there. Keep in mind I'm not up running around and working, but I can handle taking care of myself right now and it's a good feeling.

I have a friend who's wife and son have PE and I'm trying to get his wife to see Dr J. for an evaluation, and someone else equally qualified for kids to look at their son. I also have had other people I know come to me telling me they have PE and or their sibling has PE. as they learned about my surgery. I'm now trying to get each of them to take the first step and get looked at by Dr J for the adults. The point being is I'm not sure if anyone is reading my posts that has not been corrected, but if you have PE and are apprehensive about the surgery/recovery, don't be. It's not a horrible thing. You can and will make it through recovery. I'd encourage Adults with PE to contact Kelly Myers at Dr J's office and just take that first step of getting looked at. You don't even need to go there to do it. They can send you instructions on how to get the tests done locally and mailed to Dr J. There will be ups a downs, but the human body is an incredible thing and paired with Dr J's ability you will have such a better quality of life than if you do nothing. Before going into this I thought "I'm going to the Mayo, they are the best" not to take away from the Mayo cause they are good, but the best is Dr J. She's the the one that makes the difference.

Kind of went of on a tangent there, but I really wanted to get that out.

Surgery with Dr J 4/21/16 3 years 3 months ago #4522

Lurch

Keep posting during the entire recovery journey. It will remain here to help 100's, years after you have finished this journey. Your doing great! Simply remember, the physical and mental recovery is full of major weirdness. Expect weirdness at any time, then there will be no suprises. Have a productive day!

Randy

Surgery with Dr J 4/21/16 3 years 3 months ago #4523

Hi Lurch!

It's Michelle...we had surgery the same day! I'm glad I got to meet you while we were both recovering. I'm sorry I didn't stop by when I was discharged to give you my real email or something...I was so doped up and ready to get out of the hospital.

I'm home, too, and doing I think well overall. I get really excited when I make some progress (this morning was the first morning without nausea!! Woo!!), but last night was a lot of bad sleep and pain's been bad today. It's frustrating that recovery isn't linear. I want to keep getting better and better every day, and I'm not loving when I have a bad day.

The spring snow is bugging me, too...I did get to go do some walking around the middle school track by my home with my Dad the day after we got home. (My husband went back to work and my folks were here to make sure I wasn't picking up heavy stuff). Felt awesome! I got two laps in. Fortunately, at least I have a treadmill. I walked 1.1 miles yesterday (in two sessions), and this morning I walked 0.7 miles before I felt done.

I hope you're doing great! My blog is www.pthalocyaninethoraciccorset.com/ if you'd like to check it out. I haven't uploaded photos partly cos I'm out of it and I don't have pre- and post-....just post, and the post still show the chest tube and the On-Q pump.

Hope you're doing great! My real email is michelle m jonjak at gmail (without any spaces). Keep in touch!
/m

Surgery with Dr J 4/21/16 3 years 3 months ago #4528

Hi Lurch 1980,
I agree with you 100% and Dr. J is the most amazing surgeon for PE! Her partners at Phoenix Children's Hospital that are pediatric surgeons do children with PE with the same techniques so you can have the kids you know come to Phoenix too. They can contact me, Jackie Hurley at 602-933-4246. Keep us posted on your recovery and keep doing your breathing and walking!
The following user(s) said Thank You: Daria

Surgery with Dr J 4/21/16 3 years 3 months ago #4529

Hey Michelle, I'm glad you're home and doing well! I was having a rough day the day you were discharged. Once Mike got my Valium dose dialed in things got a lot better for me. I't awesome that you're walking so much! I do smaller laps here at home (like you said the weather is kind of cruddy) but I find my chest tightens up after walking for a while. I figure it's normal and I'm just rolling with it.

Last night I woke up (mainly cause our five year old had a bad dream and came into our room, but it was an opportunity for me to take my pain meds. Once I did that I slept okay. I really want to sleep on my side and I can't so that is bugging me. As for the ups and downs you just have to keep pushing forward. I just take a pause when it hits me, (Usually I go into a good morning position as it seems to take pressure off my back and chest somehow) concentrate on breathing, and after a min or less I startup again. It seems to work for me.

I'll email you.

Hi Jackie,

I'll push my buddy to reach out to you guys to have his son looked at. He still tells me that his Kids PE isn't as bad as mine and that it's not causing issues for his son. I just keep trying to explain that we don't know that until the right tests are done. It's going to take some time.


In general though, today was a pretty good day for me. My endurance isn't there for wondering around but i was able to hang out with some friends today and I was able to have good conversations with them, as in I wasn't distracted by pain or looking for a place to pass out because of the meds. Now I have my five and eight year old on my own tonight until about 9, so I'm hoping everyone stays calm and no fighting happens. :)
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