Latest Treatment and a Surprise TV Prolo Mention!

Hey,

 

Prolo part 2 is now over! The last treatment was quite tough, my shoulder felt really angry for a while and it has taken me some time to get over it but I'm feeling almost back to normal now. He always seems to do a little bit more on the last one I think just to cap it off! I don't have a follow up appointment until September now so that'll take me up to the full 12 weeks of 'healing time'. I'm just going to try to relax and enjoy my summer now free from hosptials! Plus it's my birthday next Tuesday so I have that to look forward to!! 

 

I'm a big fan of the TV series Pretty Little Liars and when I saw this clip of this weeks episode I was surprised to hear Prolotherapy mentioned! I've never even heard it talked about on TV before let alone on my favourite TV show. I know Prolotherapy is more well known in the US than it is in the UK but it's great that the writers obviously looked into it enough to put it in the show.

 

For those who don't watch Emily is a swimmer who has injured her shoulder (after almost being run over by -A) and she may need surgery if she still wants a college scholarship and a career in swimming.

 

Pretty Little Liars - Season 4 Episode 7

 

It's really exciting to hear it being recognised as a treatment option instead of surgery, maybe a few people will goggle it after hearing about it on the show and fingers crossed it'll raise some more awareness.

 

 

Katie xx

2 down 1 to go...

Hi all,

Just a short update for you today! Well I have I've now had 2 out of my 3 treatments on the back of my shoulder. 

I asked for a little extra local anaesthetic this time to see if it helped numb the sensation a bit more. I'm not sure if it made much of a difference to be honest it still felt the same having it done except I felt quite woozy when I sat back up again, but that may be because I'd been lying on my front for quite a while plus I may have over inhaled on the gas and air a little bit!

So just one more to go and then I'm done for the time being! Then hopefully I can enjoying this lovely weather we've finally been having here in the UK. Anyone who has chronic joint pain will know that the warmer weather definitely does help ease the pain and I can usually manage to do a few more things in the summer.

Thanks for all the supportive comments on and off the blog! 

Katie x

Round 2 Starts...

Hello hello,

So I've started my second round of treatment. He did treat the back of my left shoulder in the end and I felt happy about that decision because now we will hopefully be stabilising it all round.

I managed to get around the lying on my front problem! They had a U shaped cushion there and I lay with head on that, so I didn't have to have my neck cricked right over to one side. Just enough to ram the Gas & Air tube in my mouth! So the lying down part wasn't as uncomfortable as it could have been.

To be honest I did find this treatment really tough! It went on for longer which made it more difficult to bear, I was biting down on the Gas & Air tube so hard! Perhaps because there was a slightly larger area that needed to be injected with it being the back of the shoulder so it took more time. He told me afterwards exactly where he had done the Prolotherapy. It was kind of in an upside down Y shape I guess that's the shape of the ligaments in that area.




This is the area that was injected



I might ask if I can can have a little extra anaesthetic next time! I'm not sure if I'm able to have any more or if that's just the maximum they're allowed to give but it's worth asking.

Wow 2 weeks have gone quickly! I can't believe I'm due back to do it all again tomorrow, at least I'll have two out of three under my belt. I've got a pile of new DVD's to watch while I'm resting tomorrow though, courtesy of my friend Lucy - thanks for that! ;)

 

Katie x

A Slightly Belated Update!

Hi,


I'm really really sorry I've been neglecting this blog lately! Turns out its harder to keep all 3 of my blogs up to date than previously thought!

Thank you to everyone who has been keeping up with my blog and to those who have got in touch with me! I've had an incredible response so far which was really unexpected and I'm so pleased to know that people have been reading my blog and finding it interesting and helpful because that exactly what I set out to do.

I went for a follow up appointment just 6 weeks after my last injections (at my doctors request) it ended up being a bit of a waste of time and money to be honest though! He basically just said that it won't have finished working yet anyway so it was too soon to tell! Annoyed is putting it mildly. And he did upset me a bit by saying he was disappointed that my pain hadn't improved yet (especially as I had gone in all positive!) and that it might not be worth doing any more treatments. I tried to explain to him that my research showed that people with HMS/EDS can take longer, more like 4-6 treatments to notice the full benefits.

I don't think the prolotherapy doctors are necessarily all that familiar with HMS/EDS or particularly understanding they're more used to treating sports injuries which can be very frustrating! At the end of the day though as long as they're really good at the prolotherapy injections then that's what matters because I've got my other doctors for everything else.Sometimes I feel like there should be a handbook or a course on how to be a patient and how to handle doctors!

I do feel like my shoulder is a little more stable now though, it's definitely not clicking, clunking and subluxing as much or as easily as before so that's a start! I have been to see my physio recently and he was delighted with the stabilisation so far and says he can see and feel a noticeable difference in the shoulder which he could practically pull right out before and sounded like a musical instrument everytime it moved! My pain hasn't changed or decreased yet but my physio reckons that understandably it will take a bit more time as it's been such a long term problem. It definitely hasn't gotten worse though! I felt a little bit of tenderness around the injection site still for about 6-8 weeks after but that's better now.

Anyway I have been for my 12 week follow-up now. I had to be quite tactful with everything I said but eventually the outcome was that I'm going to have another round of 3 Prolotherapy treatments on my shoulder starting the 4th of June. He's going to talk my physio first though because we're thinking of trying the back of my shoulder this time to stabilise it all round. I think it's a good idea because my scans show I have multi-directional instability. But I won't know for sure whether we're doing the back or front of my shoulder until I go in the 4th! Hopefully this will further my progress though.

If we are going to do the back of my shoulder though I'm not sure how I'm going to manage lying on my front, as it hurts to keep my neck turned to the side. I'm alright like when I'm having a back massage or something and my head is facing forwards in the hole but they don't have that there. I'm thinking I might be able to manage lying on my side if I'm supported by lots of cushions. Anyone have any thoughts?

Well anyway I guess I'll find out tomorrow, wish me luck!

Katie x

Prolotherapy Treatment 3

Hi everyone,

Prolotherapy treatment 3 is now under my belt and I have to say it was a toughie! Hence why this post is a little later than planned (sorry about that!). I guess because the same ligament has been injected twice before already so its extra sensitive. Had the gas & air again which definitely helps. I am glad I'm having a little break now that the first 3 treatments are over and hopefully my shoulder is doing everything it should in the meantime!

I find it interesting how the Doctor does the Prolotherapy. I was expecting lots of little needle incisions up and down the front of my shoulder where I was being treated but there is just one point where the needle goes in and then he kind of angles the needle up and down the ligament underneath the skin instead. First with the Local Anaesthic which is sort of pushed in and around the area he's going to be injecting and then a few minutes later he starts injecting the Prolo through the same place. It's kind of a sore pulsing feeling as the needle is angled and the solution injected along the ligament for around about 1-2 minutes I think.

I have a follow up at the beginning of April roughly 6 weeks after my last (3rd) injection. So my doctor will be able to see how my shoulder is doing and probably book in the next block of 3 Prolo treatments. Hopefully he'll be able to see or feel some kind of improvement even if I haven't yet!

I have heard that in America some Prolotherapists treat people with Hypermobility Syndrome and EDS Type 3 by admitting them to hospital and one day treating the whole of the front side of the body and the next day treating the back. Then bringing them back for the same again every few weeks. Please let me know if anyone has had this done, I'd be interested to hear about it because to me this sounds horrendous!!

Will be updating again soon.
xxxx

Prolotherapy Treatment 2

Hello,

So I've had my 2nd prolo treatment and I felt that it went a bit better than last time, I knew what to expect so that helped. It still felt pretty much the same pain-wise even with the gas & air, which I started breathing in before he put the anaesthetic in. I was hoping it would be some kind of magic that would take all the pain away! It just made me feel a bit light headed like I'd had a couple of drinks or something. It did however give me something else to focus on, it helped me concentrate on my breathing and I bit down hard on it during the injections! So I will be using it again.

I did find it difficult holding the gas & air tube up to my mouth though as my elbows become extremely painful when they're bent up for long especially if I'm holding something e.g a book. So the nurse who was looking after me held it up for me while I was having the injections done.

I had a couple of days resting like last time and the side effects were similar to last time as well. I think part of the nausea might be due to the extra pain and stiffness in my shoulder. I do often suffer with nausea when my pain is really bad or if I've 'over done it', especially the nearer the pain is to my head e.g neck and shoulder pain makes me feel more sick than the pain in my legs. Again surprisingly minimal bruising and markings on the skin from it which I'm impressed by, I was expecting to be covered!

It takes 12 weeks from the last injection for the full growth process to complete and then I'll have a follow up appointment (for the doctor to see if there are any improvements) and will probably need at least one other block of 3 treatments on my shoulder after that. Its a long old process!

I am taking Arnica tablets to help the healing process, as HMS suffers supposedly don't heal that well/efficiently, and I was recommended them by a friend. Whether or not they actually do help I'll probably never really know for sure but it won't do any harm so I thought I'd give them a go.

So that's 2 treatments down 1 more to go, for the moment! I have my next one this Tuesday morning (19th Feb) and I'll update you again after that.

~Katie

Prolotherapy Treatment 1

Hello to you all,

Thanks a lot to everyone who has checked out this blog so far. I have had over 200 views which is amazing!

So its been almost 2 weeks now since my first Prolotherapy treatment and I'm feeling almost back to normal now! I hadn't been so incredibly nervous about an appointment in a long time! They were really nice to me though, I think they knew how nervous I was. The nurse who was looking after me was called Mandy, she was lovely and very calming. She took my blood presure and briefly talked me through what was going to happen. She had the gas and air on stand-by in case I needed it. I was lying on an extremely high bed under an xray machine. The doctor set up the xray machine over my left shoulder. He cleaned the skin and then injected the anaesthetic into the shoulder joint. He then waited a minute or two for tht to take effect before starting the Prolotherapy injections.

I've been trying to think how best to describe how it felt. I don't think I would say it was horribly painful, I was expecting short sharp pains as the needle touched the ligament. It was more unpleasant, like finger nails down a blackboard/purse your lips kind of unpleasant. At one point I was actually digging my nails into the palm of my hand and I did have a little faint at the end but I think that may have been more down to the fact I was breathing so quickly from nerves!

Bear in mind though that this for me is my most vulnerable area and has been for 10 years. Its extremely painful at the best of times, usually I hate people just touching it never mind sticking a needle in it. So for an area not so hypersensitive it might not feel too bad. I think the actual injection process only took a maybe 5 or 10 minutes, I'll have to check next time (I was trying to keep myself focused!) But it was quite relentless.


This is the area that was injected

I'm going to have the gas and air next time just to get me through it a bit easier and hopefully it'll help me focus on something else too. I'll just take a big inhale at the start before he puts the anaesthetic in. I know it was there on stand-by during my first treatment but I was just so focused on getting through it that I couldn't really manage to ask for gas and air at the time!

Another thing I thought about was that people with Hypermobility Syndrome apparently don't usually react as well to anaesthetics. However I only truely realised that mine had worked for me when I felt it wearing off a couple of hours later and I could feel my shoulder sort of throbbing realy deep down. It wasn't too bad though, I spent the rest of the day cuddled up at home using hot and cold packs on it and taking paracetamol. My shoulder was extremely stiff I could barely lift it for about 48 hours but the pain and stiffness did gradually decrease and by about the 3rd day it was almost back to my normal pain levels. I did also suffer from headaches, diarrhea and extremely bad nausea which I didn't realise were other side effects of Prolotherapy. I guess it's either due to the inflammation or the solution working its way through or a bit of both, again these went after about 2-3 days and really weren't that bad.

Although it was a tough couple of days it wasn't dreadful and for me, I think it'll be absolutely worth every minute if it does help - some pain for some gain for a change! It wasn't as bad as my normal pain can get and it's nowhere near as painful as trapping a nerve.

I should probably have said in my previous post that Prolotherapy takes 12 weeks from the last injection to fully complete it's growth process. This could last up to 5-10 years, which is pretty amazing. I'm not sure if this applies the same for us with Hypermobility syndrome but hopefully I'll be able to test that out! - I'll edit all that in to the previous post in a bit.
 
My next treatment is booked in for next Tuesday the 5th of Feb. I don't think I'll be as nervous next time any because I'll know what to expect now.


~Katie