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Prolotherapy

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Kate03 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kate03 Quote  Post ReplyReply Direct Link To This Post Topic: Prolotherapy
    Posted: Mar/10/2015 at 8:12pm
Hey, 

Thought I'd give you all an update. I've had a really difficult month with pain levels increasing and the two sides of my pelvis moving out of position quite substantially. And last week, it all became too much. I had a slip when I was out with my boyfriend which saw me nearly do the splits when one of my crutches slipped out from beneath me, and instead of allowing myself to fall (which is what I'm supposed to do, and normally fairly good at doing) I caught myself by compensating with my left leg. It was agony, and caused some serious misalignment in my pelvis. Walking on this made the pain worse but I had to walk to go to work so I put myself through hell for 2 weeks. When I went back to my physio, he showed me how skewed my pelvis was (much more so than normal) and manipulated it back as much as he could but it was excruciating, especially the right hand side.  Normally this is done every 6 weeks but I had to return after a week to have it set right again (which was done yesterday). Needless to say, I have been very upset about it all, and have broken down into tears several times with a couple of people which I feel awful about.

I had a bad weekend in the middle of all this, when I was harassed on the street by 2 guys in a group (with 2 girls) who stopped me, surrounded me and then proceeded to taunt me about my (obvious) physical situation and getting aggressive about the crutches I use. I was out with a girlfriend who had been walking slightly apart from me and was so shocked she was speechless. ThankfullyI don't know exactly what they said, I've learnt to ignore/not listen to comments because I take them too much to heart (yes, even from strangers on the street) and carry them around too long. However, I can remember their body language, getting right up in my face and general aggressive behaviour which is actually more disturbing.. I was scared by the way they were acting. My boyfriend is horrified by their behaviour and devastated this happened when he wasn't with me to support me and stand up to them, but the awful reality is that if he had been there I doubt they would have acted like that at all, they would have just walked past me maybe with a double glance and some comments to each other, but not actually engaging with me, like most people in London. I suppose it shouldn't be that surprising that something like this has happened in a big City, when I first moved to London (almost 5 years ago) I was warned about some men's behaviour towards women on the streets. But I suppose because I'd not experienced THAT behaviour before I thought it would be something I'd continue to be lucky enough to avoid. Also all the men I know personally are so lovely and caring, no one I know would have done what those men did to me.

However, I do have some good news for you :D My surgeons have finally decided to go ahead with the last treatment available for my case, which is prolotherapy. I've mentioned it a couple of times but it is now (finally) going ahead. The first injection will be tomorrow (well today now). I'm hoping this set of treatment will help me, but I have been reminded I am an unusual case so they are unsure how effective it will be. I have been told it is exceptionally painful but hoping it won't be too bad. Work have given me tomorrow and Thursday as sick leave which is great because I don't think I'll function very well tomorrow (today!) since there's so much going on in my mind.  I'll be sure to let you know how it goes! 

Sending out all my love xxxxx
24 years old
Diagnoses;
Symphysis Pubis degenerative change and dysfunction - Oct 2015
Osteitis Pubis since Oct 2012
Ligament dysfunction Dec 2013

Treatment;
Pubic Fusion Surgery - October 2016
Prolotherapy March 2015 - August 2015
Lloyd Release Procedure Jan 2014
Pamidronate infusions Sep 2013-Jan 2014
Cortisone injections Aug-Dec 2013
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pete81241 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote pete81241 Quote  Post ReplyReply Direct Link To This Post Posted: Mar/10/2015 at 9:37pm
its amazing to me that four people would pick on you who depend so much on crutches. i can visualise them bothering an old person. those people have to be the lowest of the low. 
  i have never heard of a person being given instructions to deliberately fall when their crutches slip laterally. drs obviously dont want any stress on your pelvis. when you do fall do you roll from your knee to the hip to the shoulder?
  i have heard of prolotherapy where an irritant like glucose is injected into a joint  in an effert to bring a a tendon back to normal. i hope it works for you kate...
   oh, one method i use to avoid slipping with crutches is to shorten the crutch slightly so the crutch isnt as much of an angle. i also buy the widest crutch tips i can find, i believe about 8 cm. wide. also the rubber tips seem to hold better than others. best of luck....pal pete
parkinsons disease.men1 genetic disorder. endocrine tumors in pituitary gland and pancreas. carpel tunnel syndrome. spinal stenosis.sleep apnea.vast knowledge of crutches and wheelchairs.borderline diabetic.gerd. both hips replaced. spinal stimulator. 7 spine surgeries/fusions. pain pump trial.Thrombocytopenia. no spleen.
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Bailey View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bailey Quote  Post ReplyReply Direct Link To This Post Posted: Mar/11/2015 at 4:25am
Dear Kate,
 
What a rough time you've been having. And still getting out and working and living as much as you can. You are an inspiration.
 
I wish someone had been there to put those a'holes in their place. How big and brave they were, tormenting a woman on crutches. Disgusting.
 
I can only imagine the pain you've been going through since your slip. I hope so much Kate that this prolotherepy will bring some lasting pain relief. You are braver than anyone I know, ready to endure almost anything to get better.
 
I'll be thinking of you often today. I hope they can control the pain from the procedure and that it will help your condition. I'm so glad you have friends and a wonderful boyfriend there to support you.
 
We're always here too, ready to help however we can. Lots of hugs and caring coming your way.
 
HugWarm-FuzzyHug
DDD C3-C6 with multiple osteophytes causing both moderate foraminal and canal stenosis and flattening and impinging on the spinal cord
Cervical Facet arthritis
Chronic Pain Syndrome
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Kate03 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kate03 Quote  Post ReplyReply Direct Link To This Post Posted: Mar/11/2015 at 5:12am
Hi Pete, Bailey. Thank you for your comments :) 

Yes I've been told to avoid lateral movement if at all possible because a) it is so painful and b) it causes my pelvis to slip out of position which causes more pressure on the front joint and sadly my back is starting to suffer from this movement because the muscles are trying to hold it in place and are having a great deal of strain when one side of the pelvis slips. I think the other idea is that whilst I am young the rest of my body can handle the impact of falling. Most of the time a fall doesn't really hurt me especially since I wear a HUGE coat at the moment which cushions the impact. When I do fall, if I turn slightly I can take the impact on the side of my thigh and my shoulder. They become a little bruised but it really doesn't do much damage to my pelvis.

Those men were out of order and what surprised me more was that the girls didn't tell them to stop. If I'd been in a group and some of the guys had behaved like that towards anyone I would have been furious and stopped them, but the girls just stood back and watched whilst I was clearly in distress. My friend eventually recovered her voice and shouted after them, and whilst I really appreciated her doing that I think her wise and appropriate words fell on deaf ears. I just hope the girls in that group spoke to them afterwards because otherwise that's far too depressing.

Crutch tips? Where can I get those? Also is there somewhere I can go to purchase new rubber tips, I do already have them but I think from the sheer amount of walking they have started wearing away and I am starting to think that this might be the cause of some of my recent slips. My boyfriend has taken to walking withe his arm round my waist and when I fall he supports me but I'd love for him not to have to worry (at least as much as he has been) when we do go out and about.

I hope the treatment will work, but it'll be hard word. I work hard at the moment to keep my strength up and do my exercises regularly so I think I'm up to the challenge. Today will be hard because I don't know what to expect so my mum is driving me to the hospital (Birmingham - yikes) and back again and I'm staying at the family home to recover so I'll feel safe and comfortable. My boyfriend will be coming on Friday. He originally wanted to come for the procedure but his work wouldn't give him time off and he's a little upset about it, but just knowing that he would be there with me if he could is a wonderful think to know.

Bailey, you always have such wonderful things to say, you know exactly how to cheer someone up! <3

Anyway, I'll let you know how it goes.

Lots of love xxxxx
24 years old
Diagnoses;
Symphysis Pubis degenerative change and dysfunction - Oct 2015
Osteitis Pubis since Oct 2012
Ligament dysfunction Dec 2013

Treatment;
Pubic Fusion Surgery - October 2016
Prolotherapy March 2015 - August 2015
Lloyd Release Procedure Jan 2014
Pamidronate infusions Sep 2013-Jan 2014
Cortisone injections Aug-Dec 2013
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Bailey View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bailey Quote  Post ReplyReply Direct Link To This Post Posted: Mar/11/2015 at 5:33am
DDD C3-C6 with multiple osteophytes causing both moderate foraminal and canal stenosis and flattening and impinging on the spinal cord
Cervical Facet arthritis
Chronic Pain Syndrome
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Bailey View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bailey Quote  Post ReplyReply Direct Link To This Post Posted: Mar/11/2015 at 5:56am
Here, any pharmacy would carry basic mobility aids including things like cane/crutch tips. Especially important in slippery winter conditions.
 
Having a good grip on the bottom of your crutches is hugely important, they can slip so easily without.
 
I'm glad you'll have your Mom with you and the family home to recover. You are very brave Kate. Much love and hopes this will help.
 
 
 
DDD C3-C6 with multiple osteophytes causing both moderate foraminal and canal stenosis and flattening and impinging on the spinal cord
Cervical Facet arthritis
Chronic Pain Syndrome
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Stevie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Mar/11/2015 at 10:55am
Hi Kate-----

By now your prolotherapy injection should be completed, and I'll be looking here for how you got by and hoping so much that you get some relief from it.  I wouldn't be surprised if pain levels increase at first prior to seeing an improvement? 

I can't believe how anyone could taunt you.  Deplorable behavior on their part.  I'm so sorry that happened to you, Kate. 

Please let us know how you made out when you can.  Hugs to you, Stevie

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote pete81241 Quote  Post ReplyReply Direct Link To This Post Posted: Mar/11/2015 at 5:14pm
heres the crutch tips i use. guardian rubber 5 cm width at the base. this deal gives you 16 tips for a little over 2 dllars per tip

http://www.bettymills.com/shop/product/view/Guardian/MEDG00500.html?utm_source=cpc-strat&utm_medium=cpc&utm_campaign=parts&utm_keyword=MEDG00500&utm_content=Medical
parkinsons disease.men1 genetic disorder. endocrine tumors in pituitary gland and pancreas. carpel tunnel syndrome. spinal stenosis.sleep apnea.vast knowledge of crutches and wheelchairs.borderline diabetic.gerd. both hips replaced. spinal stimulator. 7 spine surgeries/fusions. pain pump trial.Thrombocytopenia. no spleen.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote momzworkin Quote  Post ReplyReply Direct Link To This Post Posted: Apr/27/2015 at 1:18pm
Any update on the prolotherapy? I hope you are feeling better, and are too busy enjoying a much lower pain level to come here and post Thumbs Up
Blessings!
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Kate03 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kate03 Quote  Post ReplyReply Direct Link To This Post Posted: Apr/27/2015 at 5:16pm
hello lovely people,

I'm sorry it's been a while since I updated you. The first prolotherapy session went really well, they used the mild irritant and though uncomfortable doing quite well throughout the rest of March. However, my pelvis still slipped by just over a centimeter by the time of the second prolotherapy treatment. 

The second treatment was almost two weeks ago (on the wednesday) and I have had a really tricky fortnight since. Immediately after the procedure I was really sore and the journey home and the following three days were really tough. I was starting to feel better by Sunday and Monday I worked from home so it was ok. Tuesday was my first day back at work and I felt pretty good in the morning but by the afternoon I was in a lot of pain and a swelling started to appear. I had to leave work early, barely keeping back the tears and thankfully my boyfriend finished work early to take me home and comfort me. Tuesday evening was awful. The rest of the week I was super cautious but despite ice packs and being gentle on myself the swelling is around today. I saw my physio today and he thinks I've either strained the ligament before it had strengthened enough or the bones around the joint have become inflammed again. I'm very nervous and in a lot of pain but there's very little I can do.

My surgeon wants to do the next prolotherapy, next wednesday in a bid to stop my pelvis slipping but with the swelling I'm not sure what's going to happen.

On Friday, I had a long cry with my boyfriend about it all. I haven't been quite so afraid for a long time. Not only because there's so much riding on this treatment for me but also because I know my condition very well now, and swellings have only ever meant something bad. 

Will update you again soon, I hope everyone is faring a little better!

Lots of love xxxx
24 years old
Diagnoses;
Symphysis Pubis degenerative change and dysfunction - Oct 2015
Osteitis Pubis since Oct 2012
Ligament dysfunction Dec 2013

Treatment;
Pubic Fusion Surgery - October 2016
Prolotherapy March 2015 - August 2015
Lloyd Release Procedure Jan 2014
Pamidronate infusions Sep 2013-Jan 2014
Cortisone injections Aug-Dec 2013
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Stevie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Apr/27/2015 at 5:31pm
Oh honey.

I'm sending you huge and gently hugs from across the pond.  With everything crossed that this next treatment (if it takes place) may help you.  I know you have faith in your surgeon and that's so important.

I also know that you never stop trying.  I'm so grateful you have such support in your boyfriend.  You deserve only the best.

Please keep us informed when you can.  We all care about you deeply.  You have helped countless people with your story.  Hug

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
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Bailey View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bailey Quote  Post ReplyReply Direct Link To This Post Posted: Apr/28/2015 at 4:16am
Oh Kate,
 
I'm so sorry you're hurting.
 
You're one of the toughest people I know and you've been through so much fighting this awful condition.
 
Like Stevie, I'm so glad you have a wonderful boyfriend there to help you and hold you. Sending lots of very gentle but super caring hugs.
 
I'll be watching to see if you post Kate. I have everything crossed that this pain eases and you can get back to enjoying life. Not sure what your next step is, but we're here cheering you on and praying for better results.
 
For now, cuddle into that wonderful man and let him help you while you deal with this awful pain.
 
I'm so sorry Kate. I wish I could help in some way, I'm glad that your boyfriend can.
 
HugWarm-FuzzyHug
DDD C3-C6 with multiple osteophytes causing both moderate foraminal and canal stenosis and flattening and impinging on the spinal cord
Cervical Facet arthritis
Chronic Pain Syndrome
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kate Quote  Post ReplyReply Direct Link To This Post Posted: Apr/18/2016 at 3:51am
To Kate from Kate ,

I have thought about prolotherapy myself and was looking at some posts and came upon your story. I have read about your latest journy and it is so very sad. But it looks like you have tremendous support in your boyfriend. That means so much to have someone to turn to when the world is dumping on you.

I am sending much love. And days filled with happiness. ,
Kate
Pudendal Decompression Surgery 3/14/2011 failed
L3 to S1 all fused Surgery 8/22/2012
Degenerative Disc Disease
Failed back surgery syndrome
Knee replaced
Sero-negative Rheumatoid Arthritis
Fentanyl Patch
Spondylolithesis of back
CRPS
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