HELP FOR ARTERY COMPRESSIONS

Hi Guys!

 

My names Emma, I set this page up with a view to helping people who need to get specialised scanning or surgery treatment out abroad in Germany. I decided to choose to help firstly my friend Tessa who lives over seas in the USA and has artery compressions . I named the gofund me page 'TESSA NEEDS YOU'  rather than a generalised name as I wanted to try to help Tessa get out ASAP for treatment. After much talk and consideration Tessa has had to come to the hard decision of choosing to not flying out to Germany. This is due to Tessa's current state of health and personal reasons. There for the UK funds i have managed to raise will now be going towards helping the next set of people who can not afford to have the specialised scanning or surgery. Tessa is fully aware of this and this is something we'd discussed form the outset of me setting this funding pageup. 

 

In short, to fill you in about myself, I also have Ehlers Danlos syndrome and was poorly since having corrective spinal surgery. Each year I developed new health conditions and deteriorated as the years passed. Some of the things I experienced were :-

 

                 Postural Orthostatic Tachycardia Syndrome

                 Sjoegrens Syndrome

                 Mast Cell Activation Disorder

                 Hypothyroidism

                 Dysautonomia

                 Pelvic Floor Dysfunction

                 Pelvic Congestion

                 Nutcracker Syndrome/Renal Vein Compression

                 Gastroparesis

                 Scoliosis

                 Gastroparesis

                 Heart problems – ectopic beats, heart murmur

                 Nausea

                 MS like symptoms such as collapsing with no warning where my legs would buckle                                              

                 Numbness tingling

                 Incontinence

                 And many more symptoms I could go on forever!

 

I became so ill I was eventually wheelchair bound, unable to work, clean, feed myself my mum and boyfriend became my full-time careers. I was bedbound and couldn’t even focus on things so even reading and watching T.V. became impossible, along with no sleep due to being in agony every hour of every day. I flew out to Germany to be scanned by a Professor. I decided to fly out to see him based on the fact he was the only person who connected EDS (stretchy/lax collagen) or an angle of someone’s lordosis (so in Tessa’s case her scoliosis) to being the cause for artery compressions to develop!! He also currently runs a new type of testing/ scanning using a colour Doppler ultra sound called the ‘PixelFlux technique’, that is as of yet, the first of its kind worldwide! Once out there he found 5 artery compression syndromes for me that had all gone missed over the 14 years of ill health. All tests that I had done in the UK were the wrong type for picking up artery compressions. I then decided to also have surgery in Germany with another Prof. who was highly recommended whilst out there. This vascular surgeon operates on people with multiple compression syndromes simultaneously (I’ve yet to hear of any other surgeon whose operated on as many multiple compressions as he currently does in one surgery). Not only that but his surgery techniques and knowledge on these conditions are completely different to other specialists currently carried out around the world. 

 

I now have none of the above health symptoms I listed!! and am living a pain/sick free life, due to having life changing surgery out in Germany to correct the 5 artery compressions! It turns out my artery compressions that had been missed in the UK actually caused me to develop secondary health conditions (which I’ve listed above) which have now completely resolved due to having the corrective surgery. The only health issues I struggle now with are joint problems due to still having Ehlers Danlos Syndrome (stretchy/lax collagen) which causes me pain the more I do physically however this is not the same debilitating sickness/pain I experienced prior to surgery caused by my compressions.

 


 The scanning that’s is offered if you are lucky, to get put in for in the UK are :-  CT, MRI, CTA and a venogram. However, people have actually had compressions missed by these forms of testing. When I told them I was flying out for surgery they disproved and some felt it would only make me worse health wise, yet here I am now better than I’ve ever been my whole adult life!

 

Due to the conflicting ongoing debate between the medical community, on these artery compressions, it is very hard to get funding for something that’s currently not fully understood by the majority of the medial profession. 

The money raised through this Gofund me will be going towards helping people in the UK to getting the scanning I was lucky enough to have by Prof. Scholbach and also toward surgery by Prof. Sandmann.  Thanks to these two men I am alive now and compression free!


On a final note, I’d like to thank you all for reading and to anyone who is willing to contribute to this cause I’m extremely grateful. Many thanks Emma x