What is the name of your state? Iowa
15 years ago, I started experiencing horrible headaches. It didn't take very long to diagnose migraines. The only problem was that no one could tell me why these were occurring. Shortly after onset, I was experiencing headaches that would last for days and weeks on end and would usually end up in the hospital for a few days. Actually, it seemed that I was IN the hospital more than OUT. At first, DHE 45 worked pretty well but soon lost all effectiveness. For the first 9 years I saw every kind of doctor and specialist there is. I spent two weeks every summer at the Michigan Pain clinic in Ann Arbor, under the care of Dr. Joel Saper. I was also admitted to Mayo twice and the Univeristy of Iowa Med Center 3 or 4 times. There, I was put on huge doses of Morphine but still the headaches were not relieved. I even flew to Denver to have Botox injections before Botox was ever used for cosmetic purposes. I was prescribed almost every drug known to man...beta blockers, calcium channel blockers, anti-depressants, anti-seizures (Depakote was a real JOY!) narcotics, anti-histamines, migraine meds (Imatrex caused some major heart concerns) vitamin B complex, feverfew and many others. There was one that scared me so much when the doctors explained the possible side effects that I refused it...I think it was Sansert. Nothing really worked EXCEPT a mild narcotic called Nubain. The only problem with that was that NO ONE wanted to prescribe it for me. I remember being in a local hospital, in so much pain that I was, supposedly, passing out every 1/2 hour or so (I don't remember much of this but it's in my chart.) I laid there, trying to ram my fist through my skull, for over 10 HOURS without any treatment at all!!!!!!!!!!! The doctors, my husband being one of them, were trying to decide WHO would be THE ONE to order the med that they KNEW would help, but no one liked to prescribe. Really nice, huh?
Anyway, after 9 years of sheer misery, my husband at the time, a small town FP doc, discovered an article in one of his medical journals. It was written by the head of Nuerology at Beth Israel (Harvard) in Boston. Two days later we flew out there for a series of appointments with Dr. Bajwa and his team. In Dr. Bajwa's article, he stated that there are some patients for whom nothing but opiates (pain meds) work to relieve their pain. After my appoinments, we had a final consult with Dr. Bajwa. He told me that he KNEW that I was one of those patients. He said that he had NO problem prescribing Nubain when it was the only thing that would give me my life back.
So, for 2 years, I flew to Boston every six months for an exam and prescription refills. But, in 2004, I was divorced and could no longer afford the Boston trips. After an extensive search, I fould a doctor in Des Moines who would continue to prescribe the Nubain I needed. After the divorce was final, my 6 kids and I moved to Colorado. My doctor in Des Moines referred me to a doctor there. The 2 years that we were there went smoothly...health wise. But, my children "failed to thrive" and we moved back home last year. I picked up where I had left off with the doctor in Des Moines. In fact, at my last appointment, he said that since I was doing so well on this med (no break-through headaches and not one increase in dosage since I started taking it) he said, "It is counter-productive for you to come to Des Moines when your family physician can be prescribing this for you" and then told me that he would talk to her about it. He even said that, unless I start having any problems, I wouldn't need to be seen for 12 months.
Anyway, a year has past and it's time for an appoinment with my FP doc. I called her to ask if the doctor in Des Moines had contacted her about continuing with my care. She said he had not. I called my DM doc and asked him to contact FP doc. Two days later, my FP doc called and said that both of them had aggreed that I should go to a pain specialist and that she wasn't "comfortable" prescribing that med and that the DM doc would no longer provide "long-term and long-distance treatment." I asked about what had happened to "you're doing so well" and "your FP doc can prescribe this for you?"...what had made the DM doc "change his tune" so drasticly? I already knew the answer to that...any Dr. who prescribes narcotics for any length of time WILL eventually have his prescribing history "looked at." Prescribing such meds "sends up a red flag" and no one wants to be "looked at!"
So, once again I have been "passed off" to another doctor. My FP told me that she had referred me to a pain specialist in South Dakota, who, once a month, comes to Iowa. She said that his office would call me to set up an appointment. They did. The pain specialist's assistant called and told me that she needed to explain a few things before the appoinment was set. She said that this doc was NOT a plan participant provider and that his services would NOT be covered by my insurance. She went on to say that, "The initial consultation would be $350 plus whatever the satellite clinic charges." She then said that the "procedure" would be scheduled, which has an initial cost of $2000 and, depending on what the doctor finds, might get into 5 figures. I literally screamed, "whoa!!!!!" and she interjected saying, "I know that's a lot of money..." and, at that point, I yelled, "NO, it's not the money, it's the procedure! What the heck kind of procedure are you talking about?" She asked if my FP had told me about what this pain specialist actually did and I said "no." She then went on to explain that this doc performs Radio Frequency Thermocoagulation...which, after a quick search on the web, I found out was brain surgery. Actually, surgery on the nerves in the brain. MY FP HAD, WITHOUT LOOKING INTO WHAT THIS DOC ACTUALLY DOES, REFERRED ME FOR SURGERY!!!!!!!!!!!!!!!! On top of that, I believe that my FP never even read through my charts! One of the few things that most of my doctors HAD agreed on was that they believed that my migraines were NOT caused by a nerve problem. In fact, it was my eye doctor who discovered that, dilated blood vessels were, most likely, the cause of my pain. During a routine exam, he realized that one quadrant in each field of vision was completely "blind." My eye doctor turned very pale and that same afternoon, I was at the U of I med center, going through more tests. He had actually suspected a brain tumor. The test found no tumor but, rather, pressure on the optic nerve from dilated blood vessels...for which new meds were prescribed, but had no effect.
So, why have I been referred to yet ANOTHER doctor?...who wants to do a procedure that I don't even need and DEFINITELY CAN'T pay for? BECAUSE MY DOCTORS WOULD RATHER HAVE ME GO BACK TO THAT MISERABLE LIFE I HAD 6 YEARS AGO, THAN HAVE THEIR RECORDS LOOKED AT!!!!!!!!!!!!!!!!!!!!!!!
My qustion is...do I have any recourse against these doctors for failing to treat me? I am NOT interested in a monetary settlement!!!!!!!!!!! All I WANT is to be able to continue to live a pain-free life and if that means continuing to take Nubain, so be it. I've had NO side effects and NO increase due to tolerance...EVER!
So, if anyone has ANY suggestions as to how I can continue to enjoy my (physically) painless life, please write back. Thank you so much and sorry for the length...my life is complicated.
15 years ago, I started experiencing horrible headaches. It didn't take very long to diagnose migraines. The only problem was that no one could tell me why these were occurring. Shortly after onset, I was experiencing headaches that would last for days and weeks on end and would usually end up in the hospital for a few days. Actually, it seemed that I was IN the hospital more than OUT. At first, DHE 45 worked pretty well but soon lost all effectiveness. For the first 9 years I saw every kind of doctor and specialist there is. I spent two weeks every summer at the Michigan Pain clinic in Ann Arbor, under the care of Dr. Joel Saper. I was also admitted to Mayo twice and the Univeristy of Iowa Med Center 3 or 4 times. There, I was put on huge doses of Morphine but still the headaches were not relieved. I even flew to Denver to have Botox injections before Botox was ever used for cosmetic purposes. I was prescribed almost every drug known to man...beta blockers, calcium channel blockers, anti-depressants, anti-seizures (Depakote was a real JOY!) narcotics, anti-histamines, migraine meds (Imatrex caused some major heart concerns) vitamin B complex, feverfew and many others. There was one that scared me so much when the doctors explained the possible side effects that I refused it...I think it was Sansert. Nothing really worked EXCEPT a mild narcotic called Nubain. The only problem with that was that NO ONE wanted to prescribe it for me. I remember being in a local hospital, in so much pain that I was, supposedly, passing out every 1/2 hour or so (I don't remember much of this but it's in my chart.) I laid there, trying to ram my fist through my skull, for over 10 HOURS without any treatment at all!!!!!!!!!!! The doctors, my husband being one of them, were trying to decide WHO would be THE ONE to order the med that they KNEW would help, but no one liked to prescribe. Really nice, huh?
Anyway, after 9 years of sheer misery, my husband at the time, a small town FP doc, discovered an article in one of his medical journals. It was written by the head of Nuerology at Beth Israel (Harvard) in Boston. Two days later we flew out there for a series of appointments with Dr. Bajwa and his team. In Dr. Bajwa's article, he stated that there are some patients for whom nothing but opiates (pain meds) work to relieve their pain. After my appoinments, we had a final consult with Dr. Bajwa. He told me that he KNEW that I was one of those patients. He said that he had NO problem prescribing Nubain when it was the only thing that would give me my life back.
So, for 2 years, I flew to Boston every six months for an exam and prescription refills. But, in 2004, I was divorced and could no longer afford the Boston trips. After an extensive search, I fould a doctor in Des Moines who would continue to prescribe the Nubain I needed. After the divorce was final, my 6 kids and I moved to Colorado. My doctor in Des Moines referred me to a doctor there. The 2 years that we were there went smoothly...health wise. But, my children "failed to thrive" and we moved back home last year. I picked up where I had left off with the doctor in Des Moines. In fact, at my last appointment, he said that since I was doing so well on this med (no break-through headaches and not one increase in dosage since I started taking it) he said, "It is counter-productive for you to come to Des Moines when your family physician can be prescribing this for you" and then told me that he would talk to her about it. He even said that, unless I start having any problems, I wouldn't need to be seen for 12 months.
Anyway, a year has past and it's time for an appoinment with my FP doc. I called her to ask if the doctor in Des Moines had contacted her about continuing with my care. She said he had not. I called my DM doc and asked him to contact FP doc. Two days later, my FP doc called and said that both of them had aggreed that I should go to a pain specialist and that she wasn't "comfortable" prescribing that med and that the DM doc would no longer provide "long-term and long-distance treatment." I asked about what had happened to "you're doing so well" and "your FP doc can prescribe this for you?"...what had made the DM doc "change his tune" so drasticly? I already knew the answer to that...any Dr. who prescribes narcotics for any length of time WILL eventually have his prescribing history "looked at." Prescribing such meds "sends up a red flag" and no one wants to be "looked at!"
So, once again I have been "passed off" to another doctor. My FP told me that she had referred me to a pain specialist in South Dakota, who, once a month, comes to Iowa. She said that his office would call me to set up an appointment. They did. The pain specialist's assistant called and told me that she needed to explain a few things before the appoinment was set. She said that this doc was NOT a plan participant provider and that his services would NOT be covered by my insurance. She went on to say that, "The initial consultation would be $350 plus whatever the satellite clinic charges." She then said that the "procedure" would be scheduled, which has an initial cost of $2000 and, depending on what the doctor finds, might get into 5 figures. I literally screamed, "whoa!!!!!" and she interjected saying, "I know that's a lot of money..." and, at that point, I yelled, "NO, it's not the money, it's the procedure! What the heck kind of procedure are you talking about?" She asked if my FP had told me about what this pain specialist actually did and I said "no." She then went on to explain that this doc performs Radio Frequency Thermocoagulation...which, after a quick search on the web, I found out was brain surgery. Actually, surgery on the nerves in the brain. MY FP HAD, WITHOUT LOOKING INTO WHAT THIS DOC ACTUALLY DOES, REFERRED ME FOR SURGERY!!!!!!!!!!!!!!!! On top of that, I believe that my FP never even read through my charts! One of the few things that most of my doctors HAD agreed on was that they believed that my migraines were NOT caused by a nerve problem. In fact, it was my eye doctor who discovered that, dilated blood vessels were, most likely, the cause of my pain. During a routine exam, he realized that one quadrant in each field of vision was completely "blind." My eye doctor turned very pale and that same afternoon, I was at the U of I med center, going through more tests. He had actually suspected a brain tumor. The test found no tumor but, rather, pressure on the optic nerve from dilated blood vessels...for which new meds were prescribed, but had no effect.
So, why have I been referred to yet ANOTHER doctor?...who wants to do a procedure that I don't even need and DEFINITELY CAN'T pay for? BECAUSE MY DOCTORS WOULD RATHER HAVE ME GO BACK TO THAT MISERABLE LIFE I HAD 6 YEARS AGO, THAN HAVE THEIR RECORDS LOOKED AT!!!!!!!!!!!!!!!!!!!!!!!
My qustion is...do I have any recourse against these doctors for failing to treat me? I am NOT interested in a monetary settlement!!!!!!!!!!! All I WANT is to be able to continue to live a pain-free life and if that means continuing to take Nubain, so be it. I've had NO side effects and NO increase due to tolerance...EVER!
So, if anyone has ANY suggestions as to how I can continue to enjoy my (physically) painless life, please write back. Thank you so much and sorry for the length...my life is complicated.
