is anyone who has had an APR and/or radiation having lower spine issues?

Helen321

Want to go into this appointment knowledgeable enough to help myself and get the right answer the first time. I'm finding with APRs in general, doctors outside of the cancer center are trying to figure it out.

Trubrit

I offer no help but

I do wish you the best of luck as you go to your appointment. 

I did have radiation, which has definiely left me with several side effects, but so far, my spine and hips seems to be doing well. I know radiation side effects can manifest years later, so we shall see. 

When is your appointment? 

SUE

lp1964

Hi Helen,

Took me over a year recover and despite the fact that they even removed some of my tailbone as well, I have no spine issues. This doesn't mean other people won't. For a year I couldn't put on my socks I had so much pain. 

Mall the best for you.

Laz

kristasplace

Negative osteoporosis

Hey girl! Neat to see you here!

The radiation ate up my bones to a -3.9 on the osteoporosis chart. The doc said it was almost lower than the lowest reading.

As a result I had insufficiency fractures that caused A LOT of pain in the tailbone area. I've been able to heal most of it myself with high-impact exercise, but there's a lot of calcium buildup in that area now.

All the docs say it's super rare to have this kind of side-effect from radiaion, but I know a few others who have. Are you having problems like that?

 

Hugs,

Krista

Trubrit

Trubrit said:

I offer no help but

I do wish you the best of luck as you go to your appointment. 

I did have radiation, which has definiely left me with several side effects, but so far, my spine and hips seems to be doing well. I know radiation side effects can manifest years later, so we shall see. 

When is your appointment? 

SUE

I shoudn't have spoken

I fell down today, face first into a huge flowering sagebrush, which I am allergic to. I hurt myself from top to bottom - literlly my bottom - all the way to my ankles.  

Anyway, I did a number on my hip; not a break, but something nasty. I think, if i had had any radiation damage to that area, it would have broken today. So, I'm thinking bones are good right now. 

Just pouring out my woes.  I'll have some cheese with my whine, thanks. 

SUE

Helen321

kristasplace said:

Negative osteoporosis

Hey girl! Neat to see you here!

The radiation ate up my bones to a -3.9 on the osteoporosis chart. The doc said it was almost lower than the lowest reading.

As a result I had insufficiency fractures that caused A LOT of pain in the tailbone area. I've been able to heal most of it myself with high-impact exercise, but there's a lot of calcium buildup in that area now.

All the docs say it's super rare to have this kind of side-effect from radiaion, but I know a few others who have. Are you having problems like that?

 

Hugs,

Krista

Thanks all.  Not sure yet.

Thanks all.  Not sure yet.  So far the doc says I have a fractured tailbone (did an xray) so my oncologist is going to do scans now because she's concerned since I'm having pain radiate from my back to my hip, groin area and leg.  My friend put me on to bromelain, it's the absolute best anti inflamatory I've ever tried.  It has made the pain so tolerable.  I go for the back scan today, pelvic will be next week since they couldn't fit me in for both on the same day.  I also had my ovaries removed so osteoporosis is a real concern although whatever is going on is putting a real strain on my prolapsed uterus.  It hurts to sit again.  I was starting to get past that.  I like that you recovered through exercise.  A lot of the problem for me seems to come down to just biting the bullet and working through the pain of exercise.  My prolapse causes me excruciating pain when I exercise but doc thinks if I just do it, the results will be powerful.  I joined the gym and then my back went.  I'll let you know how it goes.  One way or another I have to get to physical therapy and diet.  Not exercising has caused serious weight gain.  I'm now 30 lbs overweight.

Helen321

Trubrit said:

I shoudn't have spoken

I fell down today, face first into a huge flowering sagebrush, which I am allergic to. I hurt myself from top to bottom - literlly my bottom - all the way to my ankles.  

Anyway, I did a number on my hip; not a break, but something nasty. I think, if i had had any radiation damage to that area, it would have broken today. So, I'm thinking bones are good right now. 

Just pouring out my woes.  I'll have some cheese with my whine, thanks. 

SUE

Hey Sue, you are such a hoot!

Hey Sue, you are such a hoot!  I went for the xray, lower lumbar fracture so my oncologist said I should come in for a pelvic and abs/back scan so I go to part one today.  I'm hoping this is an easy fix and move on.  I'm 46 and I feel like I'm 96.

kristasplace

Exercise

My weight has always been a problem for me. I've gained and lost over 400 pounds in the past decade! I'm usually about thirty over, but going down again. I'm seeing a weight management doctor and I'm spending a lot of time watching what I eat and training myself to eat more meals throughout the day, and in smaller portions. Phentermine and chondroitin the first twelve weeks helped.

I remember how hard exercise was when I had an active fracture. Coupled with the bathroom issues, I wasn't able to safely leave the house long enough to walk up the street and back. I started doing laps around the house and built up to doing light dance. Within a few months, I was able to walk up the street, and soon was doing (terribly and awkwardly), Zumba classes. It is a slow and painful process, but your body will reward  you.

My tailbone and surrounding bone have developed thick calcium deposits that seem to be protecting me from anymore breaks. There is still a lot of pain in the area that my pain management doctor thinks is neuropathy, so I guess that makes sense. My pain used to be in the same areas as yours since the tailbone fracture was widest towards on of my hips, and the groin area hurt simply because the fracture was in the pelvis. I haven't had a prolapsed uterus, but that sounds horribly painful to add to a fractured tailbone.

The thing that motivated me most in the beginning was keeping in mind that the doctors wanted to inject my tailbone with cement to seal the fracture. Since the fractures were caused by an insufficiency in the bones, I could only imagine that a new fracture would eventually develop somewhere else, and they'd have to keep filling me up with cement until I was a stone statue! I didn't like that idea at all, to say the least!

Good luck with it and keep us posted!

Hugs,

Krista

Helen321

kristasplace said:

Exercise

My weight has always been a problem for me. I've gained and lost over 400 pounds in the past decade! I'm usually about thirty over, but going down again. I'm seeing a weight management doctor and I'm spending a lot of time watching what I eat and training myself to eat more meals throughout the day, and in smaller portions. Phentermine and chondroitin the first twelve weeks helped.

I remember how hard exercise was when I had an active fracture. Coupled with the bathroom issues, I wasn't able to safely leave the house long enough to walk up the street and back. I started doing laps around the house and built up to doing light dance. Within a few months, I was able to walk up the street, and soon was doing (terribly and awkwardly), Zumba classes. It is a slow and painful process, but your body will reward  you.

My tailbone and surrounding bone have developed thick calcium deposits that seem to be protecting me from anymore breaks. There is still a lot of pain in the area that my pain management doctor thinks is neuropathy, so I guess that makes sense. My pain used to be in the same areas as yours since the tailbone fracture was widest towards on of my hips, and the groin area hurt simply because the fracture was in the pelvis. I haven't had a prolapsed uterus, but that sounds horribly painful to add to a fractured tailbone.

The thing that motivated me most in the beginning was keeping in mind that the doctors wanted to inject my tailbone with cement to seal the fracture. Since the fractures were caused by an insufficiency in the bones, I could only imagine that a new fracture would eventually develop somewhere else, and they'd have to keep filling me up with cement until I was a stone statue! I didn't like that idea at all, to say the least!

Good luck with it and keep us posted!

Hugs,

Krista

Hey Krista, thanks for the

Hey Krista, thanks for the info.  The scan showed bulging disks which is most likely the cause of all the pain.I got double whammied.  The pelvis scan hasn't come back yet.  I start physical therapy on Tuesday.  My GYN doctor said that I need to do pelvic floor and abs or I'm going to be faced with incontinence and severe back issues.  The pelvic floor is very weak since the surgery and has very little muscle tone.  The prolapse is the worst.  It's an internal prolapse which the doctors don't seem to see very often because they just don't get how much it hurts and they're not at all concerned about it.  Quite honestly, I don't even notice the pain anymore until it gets bad but I sit in slight pain all day long every day, it's just now a part of my normal.  My brain doesn't even register it anymore.  The uterus filled in the space where the anus used to be behind the vaginal wall.  In other words, I sit on my uterus all day.  If you sat on me all day, I'd scream in pain at you too.  lol  I'm going to go to PT consistently and see where I end up.  I start on Tuesday. My doctor also wants me to go to a nutritionist seeing as my diet is so screwy with this ostomy.  Whenever it goes out of balance I turn to bread.  That's not helping.  She thinks the nutritionist combined with the PT will get me in the right direction.  I've never been a heavy person, the most I weighed in life was 180 and that was only once, most times I stay between 150 and 165.  Today I am 196 and I feel every pound of it.  I feel like a very old 46 year old.  I never used to feel this way.  I had amazing strength and endurance.