Off To London Again!

Finally I have a date set to go to London for a consultation and possible treatment with a Neurogastroenterologist who specialises in EDS named Prof. Qasim Aziz at The Princess Grace Hospital.

I will be flying out on Saturday the 13th of May early Morning and the appointment will be at 12:30pm in London. I am going, not only because I have been recommended by my doctors here, both in Cork and Limerick that I should go for advice and more targeted help by a professional who knows EDS but because of all the trouble I have been having with my gut related issues, by far my gut problems give me the most trouble and upset with almost constant pain, nausea, vomiting and weight loss as well as occasional swallowing problems and my already diagnosed  Gut Dysmotility.

My Doctor in Cork is coordinating his treatment with Prof Aziz in London so I am having a Gastric Emptying Test on the Monday before I fly out which will help as one of the tests that needs to be done before going over. I have already had a Barium Swallow X-Ray done in February and thankfully that was all clear, so thats another test already down!

I am really hoping Aziz will help me out if he can, it would be great to finally get some sort of relief from all the symptoms. Even if he can get a treatment plan sorted that my Doctors here in both Cork and Limerick can do more needed tests and know what more to do with me, that would be a help in it’s self but he may also want me to complete treatment or tests in the UK which I can’t plan for until I know if that is even happening, so I will have to wait and see and I will keep you all posted as usual.

Keith, being my carer as well as my husband will obviously be going with me as there is no way I would be fit or healthy enough to do it all by myself.
Even as it is we have the flights over booked but won’t be able to book accommodation or flights home until we know more from the appointment, as Prof. Aziz may need me to stay over for further tests etc. So we will leave that until the last minute when we know more.

That’s kind of it for now until we fly over and it won’t be long before we will be at the day, it’s going to be a long day traveling for me and I am not the healthiest at the moment, I have had to cancel going to London from the last time until now as I wasn’t strong enough to go for a long time, but I can’t wait any longer and it must be done now. May was the closest appointment I could get so I took it.

I want to take this opportunity to thank everyone who fundraised and helped with my medical fund over the last while to help me get there, without you these trips wouldn’t be possible and with no EDS specialists in Ireland, with I as well as others fast running out of any help, we have to travel for treatment and help as we are completely alone here, medically, in Ireland.

Thank you all once again and I will keep you updated on everything that happens.

Lette (Fainting Goat!) xxx

Got To London & Met Prof. Rodney Grahame

We were off to see the wizard, the wonderful wizard of… The Hospital of St. Johns and St. Elizabeth, in St. Johns Wood in London, Professor Rodney Grahame. Specialist Rheumatologist.

On a rainy Monday morning, August 25th, we rose early to catch our flight into Heathrow from Shannon, leaving Ireland at roughly 08:45am and Landing in England at about 10am.

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I had never been to England before so I was looking forward to the trip. After Landing, we caught the express train into the city where we could drop our things into the hotel, grab some food and gently meander around the locality. Though that didn’t last long, I was wrecked!

Considering I got no sleep the night before and had to be up at 5am to check into the airport I had to come back to the hotel for a while and take a nap before we were to meet with some friends for dinner that evening, the day had already caught up with me but the nap did me well and I went out and about where our friends showed us around some of the city (In the milling rain!) and took us out to dinner.

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It was the following day we were to meet the wizard and after a long and busy first day, we slept hard that night!

So, Up on the Tuesday, we strolled down to St. Pancras and Kings Cross Station where we grabbed a bite to eat and went for a walk afterwards to kill some time before the appointment. The time came and we took a Taxi to the hospital.

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Accessibility in London sucks… like really badly sucks, the Taxis and most busses are equipped to take individuals in wheelchairs but the city itself, the pavements are damaged and rough, few ramps, dangerous roads, unreliable traffic lights and most shops, cafes and places in general were stepped without lifts or alternatives for wheelies. The majority of the underground Tube stations were not accessible and Also, I hate to say it, but most people on the streets don’t care if you are in a chair or not, they will walk straight through you, in most cases. For such a big city it (Accessibility wise) was a bit of a disappointment.

IMG_1756I wasn’t sure of what to expect when I got to the hospital, but I wasn’t expecting what greeted us. A modern, beautiful building, all level access for chairs, open and bright and it even had a concierge beside reception, A CONCIERGE!! Seriously, inside the door ready to help! 😀 I was highly amused by that!!

ANYWAY!! Up to the 2nd floor we went where I checked in and was told wait in the waiting room. Before ten minutes passed, a door opened at the far end of the waiting room, and there stood a tiny, slightly frail looking man wearing a classy suit and a smile, It was the wizard, He called me in!

Prof. Rodney Graham welcomed Keith and I into his office where he did everything to make sure we were comfortable, even asking if the air conditioning was ok!!

I have to say he made an immediate impact as being a gentleman. I was only supposed to be booked in with him for an hour, he saw me for at least 1 hour 45 minutes.

He started by listening to my full medical, family and symptom history, taking notes as I spoke, stopping me briefly as I went to ask questions and clarify some things. He then went on to ask me a list of questions relating to family, symptoms, hospital visits, all my broken bones and injuries, asked about my pots and Gastro intestinal issues, everything! Then a physical exam where he measured my arm length, measured the curvature of my spine, did the Beighton Scale on me (The Beighton score is a simple system to quantify joint laxity and hypermobility) Checked each of my joints separately for hypermobility. Checked the elasticity of my skin, the blue in the whites of my eyes, checked my flat feet, the inside of my mouth for a high pallet and overcrowding, asking about anesthetic resistance which I have had at the dentist many times before. He asked me about cuts, bruises, bleeding, checked my blood pressure, height…

He went out of his way for a full hour and a half to rule out EDS of any type, then sat me down in front of him again, looked at me and said:
“You came here knowing what you had, you do know what you have, don’t you?”

I replied:
“I think so, but I need to hear it from you, Professor!”

He fully confirmed a diagnosis of EDS type 3 Hypermobility type, with gastro issues. Explaining to me in full how this is not a benign condition and that it needs treatment. He said he would write to each of my doctors and to me with a confirmed diagnosis, a full treatment plan and a recommendation for me to be referred to both a gastroenterologist and to  Harolds Cross in Dublin for intensive physiotherapy and rehabilitation to get me back on my feet.

He said we would wait and see how the Irish doctors and the HSE reacts to his letters and if nothing happens fast enough in the next few months he will recommend for me to come back over to his team for me to see Prof. Aziz (Neuro Gastroenterologist) and Prof. Mathias (Autonomic and Neurovascular specialist) for faster, although private treatment.

I also asked about the seizures and if Dysautonomia could cause them. He said he was not a neurologist but that people with EDS and Pots have had Non Epileptic seizures before, but he did not know if the seizures were caused by dysautonomia or something else, but that it has happened. He also agreed that it was most likely the medication that they were giving me to ‘treat’ the seizures, in fact, made it worse, giving that now I have stopped being prescribed these meds, I have had no more seizures.

I was delighted, It was so worth the money to fly over and meet him, even for the confirmed diagnosis itself. I haven’t received the letters as of yet but as soon as I do, I can presume my doctors will have gotten them too… I am very curious as to how they will react to what he has to say. Prof. Grahame is considered one of the worlds best Autonomic specialists, I would hope they listen to what he has to recommend for me and that treatment can finally get a proper run for its money! I would really love a chance at Harolds Cross for Rehabilitation. Anything to help me back on my feet again 🙂

IMG_1758We had one more day in London before flying home, we booked an extra day not knowing if Prof. Grahame would send me for some diagnostic tests or not but we had the day to ourselves.

A dear Irish friend of ours, now living in Stoke On Trent came down to London to meet up, it was the first time seeing her since Christmas and it was brilliant to catch up. We decided to go to the Natural History Museum to see the Dinosaurs and because it is free in! It was amazing! After a short wait in the queue to get in, the museum itself was fantastic. Not entirely accessible though, just be aware if you go there, not all areas can be accessed by wheelchairs but overall it is still definitely worth going to see and ended up being one of the highlights of the trip overall 🙂 Unfortunately we arrived on one of the last days that kids were off school, so the place was packed and the queue for the dinosaur area stretched the entire way across the museum, it would have taken well over an hour to get in and we decided not to wait, either way there was plenty for us to see, check out the photos I snapped on the phone! 🙂

IMG_1804After being about three hours at the National History Museum, we decided to head to Covent Garden where I picked up some pressies for the family and we caught a bite to eat, walked around for a bit and took in the sights and sounds before getting our friend back to Euston Station for her train back to Stoke on Trent, we said our goodbyes and Keith and I headed back to the hotel room, started to pack and prepare for the flight home the next day, then fell into bed.

The following morning we grabbed some breakfast and headed out to Heathrow, before long we were back on the plane home and it was all over. If I am to head back over which may very well be a possibility very soon, I will only stay for 1 or 2 nights as opposed to 3. London is expensive and you easily notice the extra day on your pocket just with eating and getting taxis alone But we didn’t know what to expect from our first trip and it was well worth going over to meet the man. I couldn’t have done it without the Medical Fund, and hopefully now treatment will get underway properly without any more doubts from the HSE.

My next appointment is on the 15th so I am interested to see how that goes and of course ill fill you in, so that is all for now, will leave you with some other shots from walking around London! Toodle pips! 🙂 🙂 🙂

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