So today was the deadline for applying for Out of Country Care coverage; that is, it's the last day that applications received before April 1st will be adjudicated under the new regulations.
So I did it. I managed to get the application faxed in today and now it's just a matter of wait and see.
Wow.... knowcks the wind out of me just to think, "what if I do get approved?" Am I really ready?
One day at a time... that's all I can do is take it one day at a time... I'll let you know how simple (doubtful), or our difficult (more likely) the process goes.
Wish me luck!
Thursday, March 31, 2011
Wednesday, March 30, 2011
OHIP Changes to Out of Country Care
On Friday May 11th, 2011 The Globe and Mail reported on a case where an Ontario Tarlov Patient had won an appeal to be covered under OHIP's Out of Country Care (OOC) program.
The news story informed readers of the four day winning battle Rose had fought and also provided comments from a local, Ontario Neurosurgeon, Dr. Charles Tater who stated, "Rose could be treated in a timely fashion in Ontario. He had treated five patients over his career of nearly 50 years and he believed other neurosurgeons treated a similar number of cases."
Lawyer Perry Brodkin commented on the new changes saying, “This legislation makes patients guinea pigs because they’re not going to get the foremost expert in the world,” He also added that, “Under the new rules, that surgeon may have never performed the surgery or may have performed it only once.”
The news article and the suggestion of new rules caused a wave of concern to those diagnosed with symptomatic Tarlov Cysts. We were all worried about how those changes may prevent Tarlov Patients, like Rose, from receiving experienced treatment in future.
Neurosurgeon Frank Feigenbaum of the Research Medical Center in Kansas City, who operated on Rose’s Tarlov cysts, said in a letter entered as an exhibit before the appeal review board that the surgery is extremely intricate, complex and a “very scarce commodity.”
Dr. Feigenbaum also stated, “There are only a few surgeons in the world with experience and proven good outcomes with surgery for these rare giant cysts who would even attempt this surgery,” he wrote. “I am one of those surgeons.”
Rose's application for OOC had been refused on application, but after a four day appeal Rose's application was approved.
Reta Honey Hiers, president of the Tarlov Cyst Disease Foundation, testified during the appeal saying, "no Canadian physicians were on her list as having expertise to operate on such cysts; the one Ontario surgeon that was listed had asked to be removed." Which leaves many to wonder where these program changes may take future patients in need of experience to treat this rare diagnosis.
In an email received today from Perry Brodkin, he supplied a link which I've attached to this post that will bring you to the new list of amendments.
(Click on the Post Caption in RED at the top of this post to be linked directly to the E-Laws site.)
However, according to Mr Brodkin one question remains, "At this time the major issue is whether the changes apply to a person who has appealed to the Health Services Appeal and Review Board, but has not yet had his or her hearing before the Board. The changes do apply to a person who has not had an Ontario physician complete and submit to OHIP a Prior Approval Application for Full Payment of Insured Out-of-Country Health Services before April 1, 2011."
The news story informed readers of the four day winning battle Rose had fought and also provided comments from a local, Ontario Neurosurgeon, Dr. Charles Tater who stated, "Rose could be treated in a timely fashion in Ontario. He had treated five patients over his career of nearly 50 years and he believed other neurosurgeons treated a similar number of cases."
Lawyer Perry Brodkin commented on the new changes saying, “This legislation makes patients guinea pigs because they’re not going to get the foremost expert in the world,” He also added that, “Under the new rules, that surgeon may have never performed the surgery or may have performed it only once.”
The news article and the suggestion of new rules caused a wave of concern to those diagnosed with symptomatic Tarlov Cysts. We were all worried about how those changes may prevent Tarlov Patients, like Rose, from receiving experienced treatment in future.
Neurosurgeon Frank Feigenbaum of the Research Medical Center in Kansas City, who operated on Rose’s Tarlov cysts, said in a letter entered as an exhibit before the appeal review board that the surgery is extremely intricate, complex and a “very scarce commodity.”
Dr. Feigenbaum also stated, “There are only a few surgeons in the world with experience and proven good outcomes with surgery for these rare giant cysts who would even attempt this surgery,” he wrote. “I am one of those surgeons.”
Rose's application for OOC had been refused on application, but after a four day appeal Rose's application was approved.
Reta Honey Hiers, president of the Tarlov Cyst Disease Foundation, testified during the appeal saying, "no Canadian physicians were on her list as having expertise to operate on such cysts; the one Ontario surgeon that was listed had asked to be removed." Which leaves many to wonder where these program changes may take future patients in need of experience to treat this rare diagnosis.
In an email received today from Perry Brodkin, he supplied a link which I've attached to this post that will bring you to the new list of amendments.
(Click on the Post Caption in RED at the top of this post to be linked directly to the E-Laws site.)
However, according to Mr Brodkin one question remains, "At this time the major issue is whether the changes apply to a person who has appealed to the Health Services Appeal and Review Board, but has not yet had his or her hearing before the Board. The changes do apply to a person who has not had an Ontario physician complete and submit to OHIP a Prior Approval Application for Full Payment of Insured Out-of-Country Health Services before April 1, 2011."
In response to Mr. Brokins question the Ministry of Health and Long Term Care responded with the following.
"Any Health Services Appeal and Review Board (HSARB) appeals received prior to the regulations taking affect (April 1, 2011) will be adjudicated based on the old rules. Any application for Out-of-Country (OOC) health services approvals received prior to April 1, 2011 will be based on the old rules. Any application denied based on the old regulations and then appealed to HSARB will be adjudicated based on the old rules (in other words: as long as the application was received prior to April 1, 2011 to the General Manager of OHIP or to an OHIP Office, any related HSARB appeal to that decision will be based on the old rules)". They also added, "All applications are date received stamped upon receipt; therefore, even if the application is reviewed after April 1, the review/appeal will be based on the old rules".
The battle for expert care is far from over and if you are in need of further information, guidance or legal support, please contact:
Perry Brodkin
Barrister & Solicitor
515 Rosewell Avenue, Suite 304
Toronto, Ontario M4R 2J3
Tel: (416) 482-3482
Fax: (416) 484-8290
E-mail: perry.brodkin@rogers.com
Barrister & Solicitor
515 Rosewell Avenue, Suite 304
Toronto, Ontario M4R 2J3
Tel: (416) 482-3482
Fax: (416) 484-8290
E-mail: perry.brodkin@rogers.com
(all quotes in this posting were taken from the Globe and Mail article, and also from direct email contact with Mr. Brodkin. For that I am grateful. There are still a lot of professionals willing to help us fight for what we require as patients. I am grateful for their ongoing support.)
Friday, March 25, 2011
Visiting the ER or Emergency for Chronic Pain
| Posted By: Sharon Jones Gillece | ||||||||||||||
Visiting the ER or Emergency for Chronic Pain March 26, 2011 webmed article Visiting the ER for Chronic Pain How to reduce stress and suspicion when seeking chronic pain medications. By Katherine Kam WebMD Feature Reviewed by Brunilda Nazario, MD You’re a chronic pain patient who takes several prescription narcotics to control your symptoms. Then one weekend, excruciating pain lands you in the emergency room. There, a doctor grills you about your medications, in part to make sure that you’re a legitimate pain patient, not someone seeking drugs. What can you do to help the ER doctor to believe you? It’s not always easy to tell chronic pain patients from drug-seeking patients, says Howard Blumstein, MD, FAAEM, president of the American Academy of Emergency Medicine and medical director of the North Carolina Baptist Hospital emergency room. Patients with chronic pain visit the ER for various complaints, he says. “Some of these patients have demonstrable disease, like sickle cell disease or chronic pancreatitis. I think that physicians are more likely to give them the benefit of the doubt when they come in and say they have pain.” “Other patients are prone to have problems that you can never objectively demonstrate, like chronic back pain and chronic headaches,” he says. “We just have to take their word for it. You can’t look into anything and tell whether or not they’re actually having pain.” Regardless of which group patients fall into, Blumstein says, “there are some patients who, because of their behavior or their frequent visits, still get labeled as being addicted to drugs or abusing drugs.” What type of behavior raises suspicions? “Patients will come in and be very demanding, get into fights with doctors and nurses because they don’t think they’re getting enough pain medicine, and that causes the health-care providers to become suspicious of the patient’s motives,” he says. Or the patient may ask for a specific narcotic like Demerol, or say they’re allergic to non-narcotic pain relievers. Understanding Suspicion in the Emergency Room “In most cases, it’s probably unfair to the patient,” Blumstein says. But emergency room doctors have strong motivations to carefully screen out drug seekers. They want to thwart drug abuse and any chance that narcotics will be diverted, for example, sold to strangers, or exchanged for illegal substances. “They have a high street value,” Blumstein says. ER doctors have one useful tool, though. Currently, 34 states have prescription drug monitoring programs that allow doctors to check a patient’s prescription history online. “I can look up a patient and see all the prescriptions that have been filled for controlled substances,” says Blumstein, who practices in North Carolina. Doctors can use the database to corroborate a patient’s story. Or they might see patterns that warn them to probe further for drug abuse, for example, prescriptions from numerous physicians that have been filled at multiple pharmacies. “It is an unbelievably great tool for physicians,” says Eduardo Fraifeld, MD, president of the American Academy of Pain Medicine. But ER doctors also rely on instincts, Blumstein says. “It’s all perception. It’s the whole gut impression that the health-care providers get about you.” So how can a patient with chronic pain convince the ER staff that his or her complaints are legitimate? Here are a few tips from the pain experts: 1. Make sure that you have a regular physician who treats your chronic pain. That’s a relationship that all chronic pain patients should establish before they ever set foot in an emergency room, Blumstein says. But many people don’t have a doctor, he says, “and it looks really bad from a doctor’s point of view when a patient comes in and says, ‘Oh, I have this terrible chronic pain,’ and the doctor says, ‘Who’s taking care of this terrible chronic pain?’ and the patient says, ‘Oh, I don’t have a doctor.’” “Before you get into a situation where there’s an exacerbation of your condition, make sure you have a regular doctor treating you,” he says. 2. Show that you’ve tried to contact your regular doctor before you go to the ER. If you’ve been in pain for five days and have not alerted your doctor, the ER staff will question how bad your pain really is, Blumstein says. Even if the pain struck just that day, make an effort to contact your regular doctor first, he suggests. ER staff will be more sympathetic to patients who have called their doctors and been told to go to the emergency room because the doctor was unable to see them, Blumstein says. “At least you’re showing you made an effort. You’re using the emergency room as your treatment of last resort, as opposed to the primary place you go for pain medication.” 3. Bring a letter from your doctor. “A letter from your physician, with a diagnosis and current treatment regimen, is a reasonable thing to carry with you,” Fraifeld says. “Particularly if you’re on chronic opioids in today’s atmosphere, I would highly recommend that to patients.” Make sure the letter has your doctor’s name and phone number, Blumstein says. That way, if ER doctors want to contact your physicians, they can. A letter is especially useful if you’re traveling or going to a hospital that you’ve never visited before. It’s fine to bring medical records, too, Fraifeld says. But don’t overdo it, Blumstein says. “I’ve had patients come in with tons of records -- I mean, you could measure the stack in inches. It just looks like you’re going overboard.” 4. Bring a list of medications. Bring a list of your medications, instead of relying on memory, Blumstein says. Fraifeld takes it one step further and suggests that patients bring the drugs. “Take all the pain prescriptions with you -- the actual bottles -- not just the list,” he says. “[Patients], I’m sad to say, highly contribute to their own problems by not even being able to tell physicians exactly what they’re getting and when they got it and whom they got it from.” 5. Work cooperatively with emergency room staff. “It might not be fair, but if a patient comes in screaming and shouting that they need pain medication right away, the staff isn’t going to like it. It calls negative attention to yourself,” Blumstein says. “And it is unfair, because you might be having agonizing pain, and why shouldn’t you speak up for yourself, right? But a lot of staffs don’t like it and they don’t respond well to it. So rather than demand things, try to work cooperatively with the staff.” COMMENT FROM SHARON My personal opinion on this is to have a copy of your regular monthly prescriptions and also bring the bottles. I usually bring my most recent prescription with me when I am travelling anywhere, for the airport staff and in case of emergencys. When I was admitted to Hospital 2 years ago with acute pain from Gallbladder after the Doctor had visited me at home and was sending me to Hospital in an Ambulance a family member remembered to bring my recent prescription, Its not the actual prescription its the copy and reciept, from the Chemist (Pharmacy). Make sure you always get a reciept when collecting your prescription. I don't know how it is done in the US and other countries, but here in Ireland, the reciept will be a copy of the original. Love to all Sharon |
Diagnosed with a Tarlov, Perineural, Meningeal or Arachnoid Cyst?
Too many times Tarlov, Perineural and Menigeal Cysts are seen as an incidental finding on most MRI's or CT's. Most Radiologists and Physicians don't even bother to tell you a cyst was found believing they are mostly asymptomatic. Even if the cyst is recorded and mentioned in your MRI or CT report, which is not always the case, most Physicians assume there is no way this little cyst sitting on, in, or around your spinal cord, could be the cause of your developing, ongoing problems. Sometimes the Physician is right, but there's currently a long list of patients, including myself, who can prove that sometimes they're wrong. Sometimes that little, incidental cyst is exactly what is causing your agony. There are living examples, such as myself, who can attest to how these cysts can indeed be symptomatic and how they can detrimentally effect your life.
When I was first diagnosed I was totally stunned to learn that not one Physician I knew, and I know quite a few, had ever heard of these cysts. Then when I did finally find Doctors who'd heard of these cysts very few believed they were symptomatic and responsible for my ever increasing, excruciating and debilitating chronic pain.
I ended up having to dedicate the first year after being diagnosed trying to find out as much as I could about my spinal cord, human anatomy and physiology. I had to find out what they were, what caused them and what could be done to treat them. It wasn't easy to figure out what was relevant information, what was hypothetical jargon, and what was bias based on professional arrogance. Sometimes it can be very difficult to recognize the difference, but I'm going to give you some links that just might make your journey a little easier than the one I traveled. It can also make your journey easier than most of the TC sufferers, or Tarlovians I know.
Consider this a gift, but remember there are limits to every gift. You will still have a lot of work and learning to do on your own, but these links will help make the work and the learning a little easier to achieve.
I wish you luck on your journey and wish you all the best of outcomes.
Remember. Be positive, don't give up hope and always pay it forward. Just as I help you today, perhaps the day will come where your knowledge and experience may just be what a scared, unknowing, newly diagnosed sufferer may be in desperate need of. Sharing is the key. Be proud of what you've learned, share how you learned it and direct anyone and everyone affected by this illness to the best of what and who you know.
We are never alone..... we have each other. Please help us to keep it that way....
When I was first diagnosed I was totally stunned to learn that not one Physician I knew, and I know quite a few, had ever heard of these cysts. Then when I did finally find Doctors who'd heard of these cysts very few believed they were symptomatic and responsible for my ever increasing, excruciating and debilitating chronic pain.
I ended up having to dedicate the first year after being diagnosed trying to find out as much as I could about my spinal cord, human anatomy and physiology. I had to find out what they were, what caused them and what could be done to treat them. It wasn't easy to figure out what was relevant information, what was hypothetical jargon, and what was bias based on professional arrogance. Sometimes it can be very difficult to recognize the difference, but I'm going to give you some links that just might make your journey a little easier than the one I traveled. It can also make your journey easier than most of the TC sufferers, or Tarlovians I know.
Consider this a gift, but remember there are limits to every gift. You will still have a lot of work and learning to do on your own, but these links will help make the work and the learning a little easier to achieve.
I wish you luck on your journey and wish you all the best of outcomes.
Remember. Be positive, don't give up hope and always pay it forward. Just as I help you today, perhaps the day will come where your knowledge and experience may just be what a scared, unknowing, newly diagnosed sufferer may be in desperate need of. Sharing is the key. Be proud of what you've learned, share how you learned it and direct anyone and everyone affected by this illness to the best of what and who you know.
We are never alone..... we have each other. Please help us to keep it that way....
Wednesday, March 23, 2011
Ontario MVA Insurer Exams? A legal scam?
I hear a lot about what the insurers rights are, and what a claimants responsibilities are and even though I know we (claimants) have some rights such as;
Why do all insuring Physicians say we are not allowed to have anyone else in the room for the assessment? What do they have to hide? What's the need for secrecy for if we, the person being insured, wants a person there to support them? If a claimant has asked for a person to be there with them then obviously they feel comfortable enough to be honest in front of them. Do insurers examiners really have the right to refuse, or is this just an assumed right that we follow believing they know something about the rules that we don't?
What about their oath? Does that just disappear when they take on insurance examinations?
What if they lie, or write their report in a way that is misleading? At some points some of their comments even feel like a personal attack on a claimants character. How do you address that? Is there any way to prevent them from ever doing that again? Like filing a complaint with the Physicians and Surgeons board?
I've had several insurer exams in the last year, and the results, and even some of the comments made make me think what they're doing and saying, cannot be legal under their oath.
I know my Lawyer will address the comments made in the assessments and it's my Lawyers job to fight against the assessors claims, but I honestly feel that some of the things said in the report, or during the assessment could easily fall within the realms of a viable complaint to the Board of Physicians and Surgeons.
If we all know that an insurers exam will always go against the claimant, why is that allowed to happen? Obviously someone is lying somewhere if the standard procedures as we know them; Insurers Exams are always against the claimant, Lawyer exams are always for the claimant. Where is the honesty in that process? Where is the accountability? Why aren't the shady way things are done addressed?
It's a rough road for claimants, especially claimants that truly are ill and in constant pain; like me.
My stress level is always high and every exam, every test, every report just makes the difficult life I'm living just that much more difficult.
No wonder so many people don't go the legal route and fight for what they know is their right.
It's a broken system.... what can be done to change that?
- The right to send the insurance company doctor other medical records and reports you want the doctor to consider.
- The insurance company must arrange for your transportation to the examination if you request it.
- The insurance company must make reasonable efforts to schedule the examination for a day and time that is convenient for you.
- There are time lines that govern when they can ask you to go to an insurer exam.
- The insurer exam must be conducted at a place reasonably close to your home.
- You have the right to get a copy of the report.
Why do all insuring Physicians say we are not allowed to have anyone else in the room for the assessment? What do they have to hide? What's the need for secrecy for if we, the person being insured, wants a person there to support them? If a claimant has asked for a person to be there with them then obviously they feel comfortable enough to be honest in front of them. Do insurers examiners really have the right to refuse, or is this just an assumed right that we follow believing they know something about the rules that we don't?
What about their oath? Does that just disappear when they take on insurance examinations?
What if they lie, or write their report in a way that is misleading? At some points some of their comments even feel like a personal attack on a claimants character. How do you address that? Is there any way to prevent them from ever doing that again? Like filing a complaint with the Physicians and Surgeons board?
I've had several insurer exams in the last year, and the results, and even some of the comments made make me think what they're doing and saying, cannot be legal under their oath.
I know my Lawyer will address the comments made in the assessments and it's my Lawyers job to fight against the assessors claims, but I honestly feel that some of the things said in the report, or during the assessment could easily fall within the realms of a viable complaint to the Board of Physicians and Surgeons.
If we all know that an insurers exam will always go against the claimant, why is that allowed to happen? Obviously someone is lying somewhere if the standard procedures as we know them; Insurers Exams are always against the claimant, Lawyer exams are always for the claimant. Where is the honesty in that process? Where is the accountability? Why aren't the shady way things are done addressed?
It's a rough road for claimants, especially claimants that truly are ill and in constant pain; like me.
My stress level is always high and every exam, every test, every report just makes the difficult life I'm living just that much more difficult.
No wonder so many people don't go the legal route and fight for what they know is their right.
It's a broken system.... what can be done to change that?
Thursday, March 10, 2011
Act One: scene one - Insurance denial...
Who knew???? The insurance sent me to a bunch of specialists who conveniently said, "there are no signs of any injuries that can be attributed to the specified MVA"........... Interesting!!!!
I knew the results would be in from the insurance assessments today, and for the first time ever something arrived exactly when the claims adjuster claimed it would. I was impressed for a short moment before the reality hit me of what these assessments actually meant, or could mean to my life. In one quick turn of words, these results could momentarily control the route my life would take in the immediate and near future. Approve; quick effect. Deny; slow stressful effect. Unfortunately the path I'm now on is the more stressful, later of the two, but thankfully I'm no longer reeling from the shock. Now I'm back in battle mode with confidence fueled by anger, a feeling of unfairness, even perhaps a hint of descrimination and a determination to fight for what is right.
Even though there may be many times when I feel, as I felt today, that God has abandoned me, or chosen me to suffer, he hands me a gift I couldn't currently live without; strength and determination. Everyday for the past year I thank God for the gifts he has given me that enable me to face this fight with confidence. A passion and respect for the power of words, a belief in fairness and personal rights, a quick comprehension and the mental capacity to face whatever may come my way.
I've always believed that everything that happens in life happens for a reason and my current lot in life is a perfect example of that belief. I may currently be weakened by my physical disabilities, but my mental abilities seem to be increasing with each limited achievement. In this situation even little successes mean a lot. During this journey I have experienced a massive amount of small successes some of which include; new friends who understand my illness and the barriers it brings, friends and family who support me and assist me in my battle, finding and being accepted by a Lawyer who gives determination and skill new meaning, and a limited number of specialists who have given me their time, for free I might add, to help educate me on what is happening to my body, how it happened, the factors involved, and the possible outcomes of several different treatment, or non treatment, options. Every lesson learned is one more success to add to the list and I am grateful for every one.
Today I was denied what was right by a system that misleads it's consumers, but tomorrow I will take up the battle once more on the path to proving accountability.
There is no question to whether or not I will win and get what I need and deserve, it's just a matter of when.
I knew the results would be in from the insurance assessments today, and for the first time ever something arrived exactly when the claims adjuster claimed it would. I was impressed for a short moment before the reality hit me of what these assessments actually meant, or could mean to my life. In one quick turn of words, these results could momentarily control the route my life would take in the immediate and near future. Approve; quick effect. Deny; slow stressful effect. Unfortunately the path I'm now on is the more stressful, later of the two, but thankfully I'm no longer reeling from the shock. Now I'm back in battle mode with confidence fueled by anger, a feeling of unfairness, even perhaps a hint of descrimination and a determination to fight for what is right.
Even though there may be many times when I feel, as I felt today, that God has abandoned me, or chosen me to suffer, he hands me a gift I couldn't currently live without; strength and determination. Everyday for the past year I thank God for the gifts he has given me that enable me to face this fight with confidence. A passion and respect for the power of words, a belief in fairness and personal rights, a quick comprehension and the mental capacity to face whatever may come my way.
I've always believed that everything that happens in life happens for a reason and my current lot in life is a perfect example of that belief. I may currently be weakened by my physical disabilities, but my mental abilities seem to be increasing with each limited achievement. In this situation even little successes mean a lot. During this journey I have experienced a massive amount of small successes some of which include; new friends who understand my illness and the barriers it brings, friends and family who support me and assist me in my battle, finding and being accepted by a Lawyer who gives determination and skill new meaning, and a limited number of specialists who have given me their time, for free I might add, to help educate me on what is happening to my body, how it happened, the factors involved, and the possible outcomes of several different treatment, or non treatment, options. Every lesson learned is one more success to add to the list and I am grateful for every one.
Today I was denied what was right by a system that misleads it's consumers, but tomorrow I will take up the battle once more on the path to proving accountability.
There is no question to whether or not I will win and get what I need and deserve, it's just a matter of when.
Wednesday, March 9, 2011
Another Day in the life of a Canadian
Today is Wednesday, March 9th and it's the day before I get the results of nine medical assessments. Neurosurgeons, Neurologists, Orthopedic Surgeons, Rhumatoligists, Psychologists, Occupational Therapists, and on, and on, on. They've all been given the power to decide if having the spinal cord surgery I so desperately need will be easily accessible, or just another enormous, never ending battle.
Just the thought of tomorrow makes me very nervous, but I know that at the end of the day, no matter what may come out of that long list of medical assessments, it is what it is. There's nothing I can do about those results except keep trying, keep fighting and keep believing I deserve better than I've gotten so far from the Canadian Medical community. I deserve treatment.
Having a rare diagnosis brings about an extensive list of obstacles. Most of the obstacles don't even make sense and are often contradictory, but all of those obstacles include one common factor; fear. Fear of pain, fear of ongoing and developing damage as my illness is left to run amok without care. Fear of surgery, fear of not having surgery, fear of not being able to have a choice between surgery or no surgery. Fear of my future, fear, fear and more fear. I'm sure I could go on for an hour, but I won't.
How do we overcome fear? In my experience a person may not be able to overcome the original discomfort or the mental and physical impact of the initial sense of fear, but we do manage to overcome fear as long as we are determined enough to face it and march right through to the final result. I, like most others, have no choice but to face fear head on. If I didn't face it, or wasn't willing to face it then I might as well just give up, find a short pier and take a long walk. Thankfully I'm not willing to do that, so I face it and just keep on marching. Even if that march is done with a limp and slow deliberate steps.
Tonight I went to see the one and only Physician I ever met who has ever heard of, or dealt with my type of illness. He's a walk-in Physician at a local clinic and he's great. He actually takes the time to ask you questions, find out what's really going on, and figure out what he should or could actually do to help you with it.
Tonight he was seeing my son about a torn ligament from a bad slip and fall. He treated my son, then I asked him if he remembered me. He sat back and looked at me and said, "you look familiar." That's when I reminded him of who I was just by naming my diagnosis, Tarlov Cyst. He smiled and looked at me with a warm, hesitant smile and asked how I was and if I had gone for surgery yet. I told him no, but I said I was booked for surgery this June with Dr. Frank Feigenbaum. He was surprised to hear that name as he'd never heard it before. The only name he knew was Dr. Henderson in Washington. After a few short minutes of informational conversation I asked him one question just before he walked out the door. "Would you ever be willing to go on camera to say what you know of this illness and talk about the lack of treatment available in Canada?" He smiled again, and considered it for a minute then said, "sure, but I can't break patient confidentiality. But yeah, I'll do it if you need it. Things have to change here " I knew he was referring to Canada.
He had told me a long time ago that he had a patient diagnosed with the same diagnosis as me. He had done some research on the disease and then referred her to Dr. Henderson, another Neurosurgeon who specializes in Tarlov Cysts in the States. Before surgery this patient couldn't even stand up straight and was in constant, excruciating pain. After surgery she slowly got back to normal and is now back at work, living a full and productive life. Now that's a story that should be told!! The stories that prove this surgery can and does work. The stories that prove Canadians need and deserve access to this treatment.
All I can say is thank god for this Doctor and his dedication to his patients. He is one of the rare Physicians that has experienced and researched this illness hoping to help his patient find a way out of her Tarlov Cyst hell. This dedication to to this patient, with her best interest at heart, managed to find her a way out. Unfortunately, the only way out for patients in Canada is in to fight for surgery in the States seeing as Canadian specialists don't even know what to do or say about this illness, and this is what needs to change.
Just the thought of tomorrow makes me very nervous, but I know that at the end of the day, no matter what may come out of that long list of medical assessments, it is what it is. There's nothing I can do about those results except keep trying, keep fighting and keep believing I deserve better than I've gotten so far from the Canadian Medical community. I deserve treatment.
Having a rare diagnosis brings about an extensive list of obstacles. Most of the obstacles don't even make sense and are often contradictory, but all of those obstacles include one common factor; fear. Fear of pain, fear of ongoing and developing damage as my illness is left to run amok without care. Fear of surgery, fear of not having surgery, fear of not being able to have a choice between surgery or no surgery. Fear of my future, fear, fear and more fear. I'm sure I could go on for an hour, but I won't.
How do we overcome fear? In my experience a person may not be able to overcome the original discomfort or the mental and physical impact of the initial sense of fear, but we do manage to overcome fear as long as we are determined enough to face it and march right through to the final result. I, like most others, have no choice but to face fear head on. If I didn't face it, or wasn't willing to face it then I might as well just give up, find a short pier and take a long walk. Thankfully I'm not willing to do that, so I face it and just keep on marching. Even if that march is done with a limp and slow deliberate steps.
Tonight I went to see the one and only Physician I ever met who has ever heard of, or dealt with my type of illness. He's a walk-in Physician at a local clinic and he's great. He actually takes the time to ask you questions, find out what's really going on, and figure out what he should or could actually do to help you with it.
Tonight he was seeing my son about a torn ligament from a bad slip and fall. He treated my son, then I asked him if he remembered me. He sat back and looked at me and said, "you look familiar." That's when I reminded him of who I was just by naming my diagnosis, Tarlov Cyst. He smiled and looked at me with a warm, hesitant smile and asked how I was and if I had gone for surgery yet. I told him no, but I said I was booked for surgery this June with Dr. Frank Feigenbaum. He was surprised to hear that name as he'd never heard it before. The only name he knew was Dr. Henderson in Washington. After a few short minutes of informational conversation I asked him one question just before he walked out the door. "Would you ever be willing to go on camera to say what you know of this illness and talk about the lack of treatment available in Canada?" He smiled again, and considered it for a minute then said, "sure, but I can't break patient confidentiality. But yeah, I'll do it if you need it. Things have to change here " I knew he was referring to Canada.
He had told me a long time ago that he had a patient diagnosed with the same diagnosis as me. He had done some research on the disease and then referred her to Dr. Henderson, another Neurosurgeon who specializes in Tarlov Cysts in the States. Before surgery this patient couldn't even stand up straight and was in constant, excruciating pain. After surgery she slowly got back to normal and is now back at work, living a full and productive life. Now that's a story that should be told!! The stories that prove this surgery can and does work. The stories that prove Canadians need and deserve access to this treatment.
All I can say is thank god for this Doctor and his dedication to his patients. He is one of the rare Physicians that has experienced and researched this illness hoping to help his patient find a way out of her Tarlov Cyst hell. This dedication to to this patient, with her best interest at heart, managed to find her a way out. Unfortunately, the only way out for patients in Canada is in to fight for surgery in the States seeing as Canadian specialists don't even know what to do or say about this illness, and this is what needs to change.
Subscribe to:
Posts (Atom)
