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    Old 06-12-2014, 04:56 PM   #1
    Eva 14
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    Travel to See Pain Doctor?

    I wondered if anyone here with chronic pain has to travel a long distance to see your pain doc? Do you have to drive a very long distance? Does anyone actually have to take an airplane flight to see their pain doc? (It might sound ridiculous, but I've heard that some people are forced to do just that).

    My problem: I have a great pain doc, so I know I'm lucky there. However, my pain doc is located in one of the most expensive areas of California. Rents and houses are insanely expensive here. I'm guessing that most of the good pain docs are located in the more expensive areas of the state. The best doctors usually want to practice near the best hospitals and near people who have lots of money.

    I've lived in this area of Calif. for my entire life, and I've seen the rents rise from outrageous to downright insane. (The same with housing prices. You really cannot get a house for under a million dollars around here).

    I'm in severe chronic pain due to excruciating constant migraine. I am unable to work due to my condition, and my Disability 'work credits' expired, so I now have NO chance of even TRYING to get SSDI. So I have NO income and am living off my savings, which is dwindling down quickly.

    My father just died and now I have to try to take care of my mom, too. We used to be rich, but my dad mismanaged our money terribly. My dad sold our family home for nothing 20 yrs. ago. That family home is NOW worth $1.3 million dollars! Biggest mistake of his life.

    So now my mom has nowhere to live. I rented her an apartment near me, which is outrageously expensive. In 1997, I was able to purchase a very tiny house, which is where I've been living. It's looking like I may have to sell my house, which is going to be devastating. I didn't have the money to maintain the house, so I'm definitely NOT going to get 'top dollar'. This place is a real fixer-upper. I think I'd be lucky to even get $500,000. That may sound like a lot of money, but it's nothing around here. Plus, I'd have to pay off my mortgage and capital gains taxes. I don't think I'd be left with much.

    Unfortunately, my house is so tiny (one bedroom, one bath) that my mom and I could not comfortably live here together. I know other families might be able to make it work, but my mom is used to being rich and used to luxury living. I'm used to having my privacy, too. My mom says 'NO WAY' to living in the house with me. She'd rather sell it, which I don't think is wise. But I should add that the house IS in my MOM'S NAME, so she can do whatever she wants with it.

    My mom would not put me out into the street, at least. She says that she and I can live together someplace else, but that's going to be a logistical nightmare (especially with chronic migraine pain). Just trying to find and rent an apartment for my mom around here was a nearly impossible task. If we sold this house all we'd be able to get is a fixer-upper house, if we were very lucky. And neither I nor my mom is 'handy' with knowing how to fix up houses. Renting would actually be even MORE expensive, in the long term, since I'm still pretty young.

    I really doubt that I could handle a super-long drive to my doctor's office in the amount of pain I'm in. As it is, my doctor's office is about 30 miles away and that is tough for me. Anything further, I cannot imagine. And my mom is 78, so it's not like she'd be able to drive me long distances, either. We have no other family.

    My doctor's office is about 15 miles from the airport, but I truly cannot imagine trying to take a flight every 2-3 months to see my doctor. Once I'd get to the airport, there'd be no one to pick me up, etc. The costs of airplane flights and taxis are so expensive that I NEVER get to go anywhere. (I really don't know if cheaper rent living someplace else would offset those costs.) Plus, physically and emotionally, I don't think I could handle that kind of nightmare 'commute' in the amount of pain that I'm in.

    Anyway, I just wondered if anyone else has or has had a similar problem: Good pain doctor, but very expensive area and cost of living?

    I don't know what the solution is, but I cannot imagine giving up my pain doc and trying to find another one. I suffered with under-treated severe chronic pain for YEARS before I FINALLY found my wonderful pain doc! When I was first looking for a pain doc, I set up appointments with a couple of other pain docs, and the other pain docs were NOT compassionate or understanding of my migraines and my medication needs like my current great pain doc is. Even though I had 16 years of documentation from my neurologist.

    WITHOUT MEDS, I could not function at all. I wouldn't even be able to get out of bed in the morning without my pain meds. My pain level is excruciating without meds. So I guess I'd practically live in a cardboard box just so that I could continue to see my current pain doc. If you have excruciating pain, you probably understand what I'm saying. A GREAT pain doc is worth his weight in gold!

    Sorry this is long, but I've been under tremendous stress ever since my father died. I'm the sole caregiver to my elderly mom, which is extremely stressful. My mom and I both worry about money all the time: I'm disabled (but unable to get SSDI) and she is elderly. Neither one of us can work, and the money is running out.

    If it were you, would you do what it takes to remain in an expensive area in order to continue seeing a great pain doc? (I'm an unusual CP case and require certain meds that run-of-the-mill pain docs probably wouldn't prescribe). My pain doc is very understanding and compassionate. He has top ratings as 'Most Compassionate Pain Doctor' from his patients. Lots of other awards for being a great and compassionate doctor, as well. Thanks for any opinions or advice!

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    Old 06-12-2014, 08:05 PM   #2
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    Re: Travel to See Pain Doctor?

    First off let me say that I am sorry for your loss of your dad. Also, I can relate to your issue regarding your CP and the fondness you have for your doc. The compassionate, understanding ones are not easily found. That being said, there are some out there. Have you told your doc about the other things in your life that are presently weighing on you? If not, that is something I would do. If he is so well regarded and renowned, he must have knowledge of other docs in other locations that may be able to work with you. Its worth trying.
    Im sure it all seems overwhelming at the moment. Keep an open mind for any possibility. You are doing the right thing taking care of your mom and karma is for real. The answers will come when you are open to them. I wish you all the best. bea

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    Old 06-12-2014, 10:45 PM   #3
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    Re: Travel to See Pain Doctor?

    Bea, thanks for your kind reply and your condolences. Yes, it is all so overwhelming and confusing right now. Neither I nor my mom know what to do, since my dad always had complete control of the family finances. My mom was always a housewife and never worked outside the home. My mom really knows nothing about finances, and I've been trying to educate her. I'm not exactly a financial expert myself, though.

    We do have a financial advisor, but she is very busy and is used to working with VERY rich clients---multi-millionaires. My dad hired her way back when he had a couple million dollars in investments and real estate. My dad made a huge mistake by taking all of his money out of the stock market when it crashed in 2008. If he'd kept the money in the stock market, it would have recovered by now. My dad also made some terrible decisions regarding real estate. It's amazing how quickly the money disappeared.

    My dad always told both me and my mom that we were financially secure and that we'd never have to worry about money. He was so wrong. Neither I nor my mom ever thought we'd be in this position; it truly is scary.

    I've told my doctor that I don't have much money and that I'm having trouble affording my medications and my health insurance. Since he's so compassionate, he's totally willing to try to help me out on both counts. I'll probably have to switch to a cheaper long-acting med. I think I'll also have to try to get Obamacare insurance next year. (Very confusing and I hate to leave my great 'grandfathered' insurance behind, because you can never go back to it if you don't like the new health insurance plan).

    But I'd be much more terrified to ever leave my great compassionate pain doc, because my case is so complicated and other docs have not been compassionate towards me. I used to go in and out of migraine pain, but now I'm in excruciating pain constantly, so it's all the more important for me to have a good pain doc.

    I've never asked my pain doc about docs in other areas, but I guess there's a chance he may know some names. However, I really doubt that he'll be able to have any idea if a certain doctor would or would not prescribe certain medications. I would never know that info until I set up an 'interview' with a new pain doc, and I don't even know where else I would live. I've lived in this area of Calif. for my entire life, and I truly cannot imagine living anywhere else. I like Calif. and I like my pain doc.

    I have no idea if a different pain doc would be willing to continue to prescribe the meds I'm on now. It's taken me over 20 years to find just the right combo of meds, and thank God my pain doc was willing to prescribe exactly the right meds (in adequate quantities) when I started seeing him 5 years ago. My PM understood that I had figured out what works for me, through trial and error. My PM also never tried to force me to do trigger point injections or Botox or other expensive procedures NOT covered by insurance. I know some other docs WOULD force me to do all of that, in order to continue my pain meds.

    Thanks again for your kind reply.

    Old 06-13-2014, 01:50 AM   #4
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    Re: Travel to See Pain Doctor?


    Sorry you are having a rough time, and hope things work out for you.

    Can I ask what meds did you figure out that works best for you that you can find no other to prescribe?

    Maybe your current PM could write you a letter recommending what you have found that works best to be prescribed for the new doctor, because you must move eventually.

    Good Luck
    constant companion pain

    Old 06-13-2014, 05:13 AM   #5
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    Re: Travel to See Pain Doctor?

    Hi Eva, I don't want to alarm you but recently a doc in my area lost her license for the way she practiced PM, the complaints against her were allowing early refills, not enforcing UAs and pill counts as spelled out in the PM contracts she had people sign and continuing to treat a patient she knew had moved 4 hours away to the DC area. It seems they questioned what this doc was doing that was so different that any one of dozens of PM docs in her new area could have and should have been able to continue treatment in her new home town.

    I guess its a valid question. As far as being a unique case, I think everyone thinks they are a unique case. You may be a higher dose patient or may have tried more alternative therapies than most but so have I and so have many pother people on this forum.. Ive been treated for failed back surgeries for over 20 years now. tried every alternative therapy, Been through 3, month long, 8 hour a day PM boot camps back when they didn't use opiates in the 90's. As great as my doc is, My docs aren't doing anything different that any board certified PM doc is capable of doing. Certainly nothing that would require me to travel, and particularly fly if I had no income and were having the financial problems your having. It doesn't make sense and if it doesn't make sense it will through up a red flag in someone's eyes. Yes I think your taking a chance and its not like this docs regimen works so profoundly well he is the only doc that has been able to manage your pain in a way that allowed you to return to work or show anything solid aside from a patient reporting lower pain scores do to opiates. Everyone that continues opiate treatment better be able to justify continued treatment with opiates based on tangible success. , More success than simply reporting lower pain scores. Returning to work, exercising, loss of weight and a general return to health or improved health. Controlled BP, improvement of documented psych issues, etc etc.

    You mentioned he doesn't force you to do things like Botox or TP injections and nobody should but you should at least give it a try. My wife has had great success from botox and by adding Nemanda to her regimen and they are covered by insurance, her opiate intake dropped by 2/3rds despite continued deterioration of her neck. As far as TPs and even botox placement, its a skill like acupuncture. A chart on the wall can be followed by anyone with half a mind, however being able to bring relief is a true gift some docs have and some don't.

    I think you need to find a doc in your home town before you become the first homeless person earning frequent flyer miles or your situation throws up a red flag to the wrong person and gets your doc shut down which not only effects you but every other patient he or she sees and trust me you aren't the only patient in that practice who believes they are a unique case that requires different treatment or exceptions they wouldn't make for others. Pain is pain, there isn't much unique about it, That's why they treat your headaches which cant be seen or documented through a Diagnostic process the same way they treat my back that is loaded with documented physical deformities and broken hardware from past failed fusion attempts. Pain is pain.

    I might not have the same opinion had this exact topic not been in our very recent local current events. It is a problem for you both financially and medically. Without income how long can you continue to do this and why would you continue to do this when eventually you will be deciding between food and medication, flights to a different city wont even be an option so why not find a resolution now before your detoxing because all your accounts are drained completely. Sorry to be blunt, but I guarantee you there are other people with headaches and other painful conditions in your area being treated by competent Board certified PM docs in the area you live.
    Welcome and Good Luck, Dave

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    Old 06-13-2014, 09:35 AM   #6
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    Re: Travel to See Pain Doctor?

    How are you and I'm so sorry for all your troubles!

    Is there anyway at all you can get out of that area. There are metro areas in the Midwest where your money would go sooooo much further. I don't know, Iowa, Kansas, IDK. I live on the east coast and I complain about costs but really, it's nothing like you've described. I know, it's not that easy but sometimes life throws us problems and we just need to "simplify". Honestly, all the Best!

    Old 06-13-2014, 04:34 PM   #7
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    I just wanted to send a quick reply to your post. I'm not sure where you live, you kind of went around in circles, saying it's one of the most expensive areas in the State so all I can do is tell you my own experience.
    I live in No. Calif. near Sacramento and even though I'm not on "outrageous" amounts of pain meds, I am on unusual doses because of malabsorption issues caused by my Lupus. My Primary Care Dr. is also a pain manage. Dr., with a Pharmacist and Physical Therapist in his large office. He does a lot of work with back/neck/headache patients and even though he does use meds. as a treatment, he's also open to many other treatments and works closely with his patients' teams of Drs. and will refer you out to other Drs. if you need to see someone else. Personality-wise, he's fabulous. He's warm and friendly and very, very smart. I'm not trying to "sell" this particular Dr., but what I am trying to say is that I believe if you take the time to ask around and do research, etc., with some work, you'd be able to find a Dr. that could help you the way the Dr. you have now is helping you --without putting you in the worsening financial hardship you're looking at. I don't think my Dr. is the only other one out there who is also a great Dr.
    I am so sorry for all you're going through and I hope that you find another comparable Dr. without having to face poverty and/or homelessness. Take care.

    Old 06-14-2014, 06:04 PM   #8
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    Re: Travel to See Pain Doctor?

    I can relate to your migraine misery as I also suffered from chronic daily migraines. The magic solution for me was a cocktail of meds, none of which were narcotics. I used a very high dose of Cardizem, Elavil and a tryptan such as Imitrex injections (self-administered) for breakthrough pain.

    I know that each person and situation is different, however, high doses of narcotics and/or narcotics in general, are not known to be effective for migraine pain. I recall when I was hospitalized for surgery a long time ago that the morphine in my IV took care of my post-op pain but not my migraine pain! How crazy is that???

    That said, I wonder if you have the correct diagnosis. Something here just does not sound right to me about your situation. And I DO currently take a cocktail of meds for SI joint pain, one of which is oxycodone (different age, different pain issue - pretty much sucks)

    I do urge you to move if you need to and go for a consultation at a major medical center. You might need a CT scan of the head if this has not been done (yea, I had to have one, it's protocol for migraines) and really get a good medical work-up conducted.

    I know it's scary to give up what you have if it's offering any relief at all and venture into the unknown, however, in your case, I think I would do it. Your pain-management protocol does not seem to mesh with the diagnosis.

    Best wishes to you!

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    Old 06-14-2014, 06:34 PM   #9
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    Re: Travel to See Pain Doctor?

    I'm sorry for everything you are going through. I also suffer from horrible headaches. I get chronic daily headaches along with debilitating cluster headaches. There are no good docs here (I was misdiagnosed for 5 years!), so I travel by car 2 hours to see my doc who is in Chicago. It's definitely worth the time/gas/energy to feel better! Good luck

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    Old 06-15-2014, 09:26 PM   #10
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    Re: Travel to See Pain Doctor?

    Hi Eva, I'm not going to get into the issue of what you should or should not do about your pain management doctor or selling your home thats in your moms name. Just thought I would mention your mother can draw social security from her deceased spouse, as a surviving spouse, even though she never worked. It would be based on the work credits your father had. Could be over 2,000 monthly if he had a high salary. Also, you could apply for SSI after your savings is gone if you don,t have any other assets. Sorry for your loss.

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