Share your unique experience!

Hello! I’m Arjuna, a Ben’s Friends intern, and the co-president for the newly established University of Toronto chapter of Ben’s Friends Patient Communities. Our group aims to raise awareness and funds for various rare diseases in the wider Toronto area. One of our upcoming events is the inaugural Rare Disease Mini-Conference on March 10th. As part of the event, we will be providing a conference package to attendees.

We’re hoping to include some interviews with patients and volunteers who are part of the Ben’s Friends online support communities. Please let me know if you’re interested in sharing some of your unique perspective and experiences! Interviews will be only 2-3 questions and entirely at your discretion.

QUESTIONS:

  • What is your rare disease, and how has it affected the way you live your life?
  • Could you tell me a bit about your experience with the healthcare system, such as how your disease was diagnosed or treated?
  • What do you think of the current state of knowledge and research on your particular rare disease? Where would you want it to go in the future?
  • How has being involved with the Ben’s Friends community affected your experience as someone with a rare disease?

Feel free to reply to this post directly, or shoot me a private message with your response!!

Best regards,
Arjuna

My rare disease is a 5mm multilobed bifurcation aneurysm in LICA, ruptured. Since the SAH, I’ve had two subsequent coiling procedures. The second procedure gifted me with Foreign Accent Syndrome, rare being only about 100 people in the world have this diagnosis. I also have dysphasia, lose words or use inappropriate words in conversation, a right hand tremor, photophobia, loss of peripheral vision which improves, hearing issues, poor short term memory, and balance issues. The FAS has brought to light how prejudicial people can be that I had not experienced as much prior to rupture. Photophobia can be painful so sunglasses are a must anytime I’m outside, sometimes inside. It also is a direct link to my stutter and dysphasia, so I keep my sunglasses on to keep my words. Because of my revised language skills, people often treat me as if I have a very low IQ, which is not the case. I can hear almost as well as our dogs, which also means I have trouble shutting sounds out, large gatherings are painful and I try to avoid them. It becomes an overload of senses. I wear ISOtunes, which stop the higher pitches, allows me to play music which can calm me, and I can still take phone calls. I can no longer cook unsupervised, which means cold meals or microwave meals for the most part. Once, I burned my tea kettle to the point it melted to the electric eye. I now have an electric kettle with auto shut off. I also drive only in areas that don’t have a lot of traffic so it’s about a six mile radius. My life has become more focused on learning adaptation and relearning skills.

As for the healthcare system, I have learned the importance of the professionals making notes that are accurate and the importance of having them corrected if inaccurate. I used to be on medication for tachycardia; however, that medication is also used for high blood pressure. So the hospital I was transported to when I ruptured, sent a note to the hospital I was heliovac to saying I have high BP. I cannot get that note off my charts. After 26 days of Neuro ICU, the office person put I could return to work in two weeks. My Neurosurgeon had not released me to go to work and in fact said I would not be able to go back. That same person continued writing incorrect entries which to this day, we think effected my ability in part to get disability. I had paid for long term disability for years with my employer. When my short term disability ended, I was refused long term disability because I could drive to my parents and to Physical Therapy, both about one mile from my home. My PCP, GP, or family doctor did not know what to do with me upon release. His answer was for me to get a Neurosurgeon in our area. None of which did brain surgeries at the time. Luckily, I had back surgery the year before for Spondilolisthesis, and I asked the Neurosurgeon who saved my life for PT, she also wrote a prescription for Speech Therapy. I needed Occupational Therapy, but there is only one in our area that works with adults and her cases are filled with the local hospital and their cases. Tried to get one that could come to the house, but I didn’t qualify because of the incorrect entries made by the one aforementioned person. Again, I was lucky, my mom had an OTA coming to her home and I was able to pick up a few things. We found out when I went to my new PCP, that I was receiving Medicare and my private pay insurance would no longer cover medical costs. The front desk wouldn’t let me see my PCP until the issue was resolved. It didn’t matter that I offered to pay cash. It was very upsetting and confusing. I had to call my partner because all I could understand was that they wouldn’t let me see her. So for several months, we had paid the private insurance company several hundreds of dollars a month for nothing. And they don’t reimburse. Now, despite repeated calls to the teaching hospital and the appropriate paperwork filed, the teaching hospital still attempts to bill the private pay insurance company. I receive monthly bills to pay for the last MRA. My partner has taken over these calls and letters. There was also many entries from the specialist that indicated I did not have FAS. I was able to contact the Speech Therapist at the hospital that treated me for the rupture and have her send an email to the person making the entries for the doctor. She sent it to the doctor and to the person making the entries on my bequest. Those entries were immediately corrected. The last angiogram I had, the person didn’t explain there would be a new closure system used. It felt different, we called the on call dr who couldn’t tell us anything, six months later we figured it out. The accepted way to contact the surgeon is by their patient portal. It goes to the triage RNs and they go either to the NP or PA, sometimes they go to the Dr. In one of the attempts of contact for issues, the assistant did not bother to respond and in fact went on vacation the next day. I called to get an appointment and the office wanted me to see that assistant. I said, “No, I’m not playing with her anymore”. She had never read my chart, didn’t know what lengths the doctor went through to save my life and I’m not sure she cared. She has since moved on to another job. The replacement is a much better fit.

As for the current state of knowledge on a multi-lobed aneurysm, it’s not enough. I have found only two or three studies which cover them. Even those studies indicate that I am what my Neurosurgeon says, a miracle among her miracles. Apparently, people who rupture from a multi-lobed Aneurysm don’t have as high a survival rate as those with a berry or fusiform aneurysm. There is also conflict in semantics from the medical field to the government, not to mention the difference amongst medical professionals. I would like the specialists, the governments and others to all use the same language. I would like to see everyone cite their sources for statitistics and how they came about those statistics. There are many studies who seem to have just clicked on a foundation and repeated those statistics as if they were law. I believe all countries need to put more effort into studying cerebral aneurysms. I would like to see the medical field understand that they don’t know everything and they need to be able to think outside their box. I would also like the field to go ahead and take the extra time to do MRAs as opposed to CTs as I have enough radiation in me now to light up our county. I would like to see research on why so many of us become hypertensive to light and sound, why we have troubles with bending and why disorganization affects us. I feel further exploration on childhood head trauma and development of aneurysms is needed.

Being a part of Ben’s Friends has helped me tremendously. Having been in the helping field for a couple of decades and then not being able to work, had me lost. Ben’s Friends has offered a place I can help. The support I receive from the others and the moderators are indispensable. I don’t live in an area where I can go to a support group as they are all in big cities. Without the Brain Aneurysm support group, I would feel alone in my struggles. With them, I can conquer anything, together. Just surviving for the first two years after an SAH is against the odds. For those of us who have to be recoiled and start the clock back to day one is impressive. I’m not sure where I would be in my recovery without Ben’s Friends and the support I receive. The members challenge me, they celebrate and grieve with me, they give me a familiar purpose and I thank them every day.

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