Article by Claire Hubbard
When deciding to travel to see one of the doctors in another part of the world, it makes sense to get organised, do research and look at doctors’ credentials in order to get the most out of your money and your treatment.
I decided I needed to go the USA when hospitalised for 8 weeks in October and November in 2013 and then again for 10 weeks in April, May and June 2014. I just knew I had to do something and soon, after being affected by this illness for four and a half years.
My family were right behind me along with my friends and colleagues at work, as they had all seen how it had affected my life as I had still been going out and about when I could, even if it meant lying down in public and spasming/seizuring in front of people. It actually built the awareness of csf leaks and people really wanted to help.
I will show you my step by step approach to this journey, of which I have never regretted for one second, in order that you may get some pointers for if you ever wanted to do the same thing. I can honestly say I would not be feeling like I do now, upright much more with much reduced head pain, without the intervention and then one to one support of the USA staff.
- Contact the doctor you want to see – via email is easy enough and ask for a response due to urgency. Explain your situation and ask if they will be able to help you. Once I got a reply from Dr Gray saying she could help me, I left it, as I had not been diagnosed with hypotension and it was still all a guessing game, even though she said it was enough to warrant a visit. In 2011, I was in no position to try and explain this with no evidence and could not justify spending so much money on what could be a false trail. I re-contacted her in 2014 when it all got too much and by then we knew it had to be a leak as I had been tested for so many other things and it wasn’t helping at all. I would recommend doing this sooner and not leaving it as long as I did.
- Once you have contacted the doctor, and they agree to see you, you may need to discuss this with your own GP and neurologist to see what they think. Both my GP and neurologist were happy for me to see a doctor in the USA as they had no more ideas on how to help me, and knew I wasn’t going to give up. So I was able to go with their blessing, which meant a lot in view of any future treatment needed in the UK. I also needed them to know in case I needed a prescription afterwards – which I did…
- The next step is to ask for a quote for what the USA doctor intends doing – even if all the procedures don’t get carried out, its worth getting this quote to cover every eventuality – just in case. Now you will know how much money you need to raise to go and stay over. I was asked to pay $16,500 by Duke University in North Carolina (Dr Gray-Leithe)- which translated then to just less than £10,000 for the consultation, the scan and up to 10 glue/blood patches. I knew we also needed money for the flights and accommodation and any extra procedures carried out. We set the original figure at £13,000 but soon realised we would need more like £17,000. This ensured we had access to additional funding – which we did need.
- Now start fundraising. It was just after Christmas for me and my colleagues at work decided to start the ball rolling by asking to be sponsored for a non-alcohol month in January, one continued into March. The other fundraising went on till the end of July 2014. I opened a separate non-profit organisation bank account in both mine and my sister’s name so we could both have cheques payable to us and both withdraw funds if needed.
- Make things to sell yourself if you are able – I made cakes at home and took them into work each week to sell to go towards the fundraising. By January we had raised about £60. I had no idea how long it would take to get me there but it seemed an awful long way off!
- Use the local press. The local newspapers were contacted by a friend. This really pushed the boat out, as after it was in the papers (2 local ones) the local internet site also wanted to know about it. This led to many, many people contacting me – some I knew and some I didn’t. Some wanted to help me and some wanted to share their own experiences with me. I started getting envelopes pushed through my door and phone calls from people offering to do something to raise money. I have been a primary school teacher for 26 years and some of the children I taught years ago contacted me too. Some of the events were also noted in the local press and by this time I was back in hospital due to repetitive seizures.
- Open a justcaring or justgiving site. This was the next phase- for us to start a justcaring site and link it to a live Paypal account. My daughters decided to do this for me and wrote it from their point of view. We linked it to our facebook pages and the word then spread. They started by asking people to sponsor us as a family for not eating chocolate for 6 weeks. We put a low amount as the total needed but soon bumped it up when we got near to the total. Lots of people were asking what we needed and what they could do.
- Keep up with every fundraiser. I tried to keep up with every fundraiser that was occurring as I wanted to be personally involved. I am lucky that I have a great support network around me and they went to the events when I couldn’t. They were often asked to speak to the people involved to say thank you on my behalf. (Fundraising ideas are on the www.csfleak.info site).
- Send clear information to the doctor in the USA so they can help with a diagnosis. I knew I needed to get a clear scan to send to Dr Gray in order that she may be able to diagnose me via email. As the scans I had already sent her were not what she needed, I asked her to write down what I could have done that would help. This is when she said she needed an MRI with intrathecal gadolinium – an off-licence use in the UK. This was tricky as it needed permission and it took over 3 weeks to get it. Dr Gray was able to use these scans to inform my doctors as to what to do for me in the UK via emails.
- Raise awareness of your plight. I found the best way to deal with the money raising was to raise awareness. I decided to give up my privacy and invite everyone into my life – this was a way to raise awareness and hopefully raise money. It also gave the fund-raisers an up to date record of what was happening to me and why. Start a blog – write an online diary so that anyone who is interested can find out for themselves what you are doing and how you are spending the fundraiser. This was one of the best things I did as it kept everyone informed on what I was doing and how I was feeling. The hospital staff read it along with many people linked to fundraising at home and also family abroad (www.lucyhubblog.wordpress.com).
- When you have the funding, get a date from the USA doctor for treatment – I double-checked my quote with the admin department to check the quote included a scan as I didn’t want any unexpected costs. You are asked to pay a deposit, but it is actually the whole amount up front. Before I paid this, however, I emailed to ask the doctor to fit me in with a date that met my needs – ie on a Tuesday as Monday flights are cheaper, a date where my companions could join me, etc. Dr Gray emailed me back immediately with the dates I needed so that I could then book the flights and pay for the procedure. I went into the bank to do this as we had trouble trying to pay it online as it needed an International Bank Account order. The bank will do this easily for a small fee.
- Get an ESTA – look for it online. You just need to fill in your name and address and date of travel etc. It’s very simple and costs $14 (about £8). I applied for a visa for travelling for medical reasons, but it was unnecessary and a waste of time, money and effort. You can receive medical treatment on an ESTA – your stay is limited to 90 days.
- Book accommodation – I read the document on the csf facebook site where it recommends places to stay that have leaker rates and often a free shuttle service to the hospital. I cannot provide a link here, but can offer the information to anyone who should need it. I found it very reasonable – costing about £485 for the three of us to stay for a whole week, with breakfast included every day, and dinner including Monday to Thursday.
- Book flights – American Airlines fly direct to Raleigh Durham, North Carolina with no changes from London Heathrow. From here it was about 20 minutes to the accommodation we chose and about the same to the hospital. We were picked up by a leaker friend in Durham, who took us back to the accommodation. But there are many cabs available. Ensure you ask for Special Assistance at the airport as they will help you with carrying bags and a wheelchair if you need it. We were lucky enough to be able to afford to fly Business Class as I needed to be as flat as possible during the 8 hour flight. I took two companions as I was likely to seizure and needed as much support as I could get. We booked on a Monday and well in advance as the costs were only a few hundred pounds more than economy – keep watching the prices and buy them when they’re low. They tripled by the time we left.
- Change currency to dollars – make sure you have enough as if you do go out and about and pay by card, you will get extra charges on your account when you return.
- After the procedure – take the time to rest and recuperate in the USA. It’s tempting to want to go sightseeing but the main purpose is to rest and allow the procedure to settle and stay put. Your companions should bring a book! I stayed out for a week and was glad I did as I unexpectedly needed to go back into hospital the following day for further scans and treatment.
- Pick up patient notes – I picked up my notes before I left as I did not want to be chasing after them on my return. The Duke University Hospital gave me two copies of my scans too – all available in 5 minutes – one for you and one for your neurologist.
- Arriving home – stay resting for as long as possible. If you have been blood patched, download the “Rebound High Pressure” document written partly by Dr Gray. This will explain to the UK doctors how you are feeling if you still have some head pain and why, and may also help with ongoing support with and benefits you are receiving and the allocation of prescription medicine.
- See your UK neurologist – make an appointment to see your UK neurologist as soon as possible. I sent mine a photocopy of all the notes and scans as soon as I was back to keep them in the picture in case of a relapse. Also do the same for your GP – they need these records in their system too. You also need to prepare a plan of action with your neurologist in case you start leaking again. I did not want to wait in in hospital with daily repetitive seizures for 10 weeks again, whilst they tried to decide what to do to help me.
You can keep up-to-date with, and find out more about Claire’s story at: www.lucyhubblog.wordpress.com