Woman Needs Operation, But Can’t Afford It

July 21, 2015

IMG_2349[Written by Don Burgess]

Everyone knows that batteries have to be replaced, but what happens when that battery is in a critical piece of medical equipment and there is no money to get a new one?

That is the situation Barbara Johnson is in.

In April 2002, Ms. Johnson started suffering chronic pain in her leg. [The exact cause of that pain cannot be named for legal reasons.]

Since then, she has had nine operations at both Johns Hopkins in Baltimore and The Lahey Clinic in Boston — with one of those surgeries being the implantation of a spinal cord stimulator in her back.

Dr. John Gaugain, of the Bermuda Chronic Pain Clinic, told Bernews: “Mrs. Barbara Johnson is a chronic pain sufferer who had a spinal cord stimulator implanted a number of years ago. She has travelled overseas a number of times for assessment and implant revision. She currently has a functional problem with her implant and, due to her financial circumstances, is seeking funding for her overseas appointment.”

Ms. Johnson does not have the $65,000 to pay for the operation and the operation is only partially covered by HIP. [Bernews has seen the paperwork from the Lahey Clinic to verify the costs of this operation]. She can’t get any help from the LCCA as she still owes around $25,000 from her last operation.

First Baptist Church has helped Barbara over the years with her medical bills, debts and needs, but the gap in which they can help this time is too great.

Because of the chronic pain, it makes it difficult to hold a job, and that’s even if a company is willing to hire her because of the high cost of insuring her due to her medical liabilities.

Dr Gaugain said: “Chronic pain is a relatively common and complex condition, which can be debilitating to the individual if not controlled.

“In a number of patients special implants that prevent the signal from the pain site reaching the brain are used… and require specialist surgical expertise for their placement. At the moment the implantation of spinal cord stimulators is not available in Bermuda.”

Mrs. Johnson said: “The unfortunate thing for me is I don’t have insurance like I used to when I was working.

Ms. Johnson started to cry: “Anything so I don’t have to face the pain on a daily basis without the device.” She said since the operations she hasn’t been “…able to work and perform the way I used to perform.

“Like everyone, I try to put up a good front, put on a smile and show the good side of us, but no one knows what I struggle with behind closed doors. I’ve stopped asking ‘why’ and have concentrated on how to best live my life with this.”

“From the day I’ve had this implant, I was told, ‘Don’t let this battery die’. When I went for a checkup in November, they said it was time for a new battery,” she said.

An additional problem for Mrs. Johnson is the stimulator has also moved closer to the surface of the skin so it protrudes a bit now.

“When they put it in, they put it deep in the tissue, but over the years the skin has thinned out and the box has started to lift to the surface. Just putting a belt on hits up against that area and it’s uncomfortable.

“My pain varies every day. Dr. Gaugain explained to me that it is like a live wire being in a gutter and it sparks. My leg is like that because the nerve is damaged. I have no idea when it is going to hit — it’s unpredictable, but I try to live my life as normal as I possibly can,” Ms. Johnson said. “But there is always that pain that is dormant and I don’t know when it is going to happen.”

She added, “[the device] has changed my life because I don’t have the pain I used to suffer every day. I used to be down at the hospital all the time. I had to learn to deal with chronic pain”.

Once she had the spinal cord stimulator implanted in her back, much of the pain she was suffering through was taken away.

“This has worked for me really well and I don’t know where I would be if I didn’t have this device.

“After seven years I need a new battery. Just like any other battery, it doesn’t last forever. It’s not like without this battery I am going to fall down tomorrow, it helps me manage my pain.”

“I’m trying to raise the funds to get this operation done. I’ve already postponed two surgeries because I haven’t had the funds to do it. Right now, I’m just leaving it in the Lord’s hands.”

Update 9.25pm: People wishing to help Ms. Johnson, may do so by donating online to First Baptist Church HSBC account Account #010011955001. Please make sure it is marked clearly for Barbara Johnson.

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Comments (24)

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  1. GTA says:

    I wonder if she has ever considered alternative forms of medicine for her chronic pain, namely medicinal marijuana and THC therapy. I am sure these forms of treatment would be a fraction of the costs as well. Obviously without knowing the full extent of her injury/cause of pain, it can not be for certain this alternative form of medicine would suffice, but I believe all options should be considered when you are looking for such large sums of money, I do wish her well.

    • Really really Bettty says:

      This is sad indeed. No person should not be able to receive medical care. In the mother country she would get it. Yes $1 from everyone would help. God bless.

    • Keepin' it Real!...4Real! says:

      Like someone said about not knowing the extent of her problem i would strongly recommend that she needs to see SIFU DR. REGINALD CANN at COHA on the corner of montpellier and happy valley roads…If he can’t help her then drugs n surgery is the only resort.

  2. Everyone on the island donate $1, we can help her.
    All the best.

  3. Rosie Marangiello says:

    No one should be suffering like this, she has gone through more than her share, there are many pain management centers in the States, Canada and UK and, whatever she, doctors and family decide is best course of action. There should be no extra worry about finances and should have the procedure, follow-up and rehab … and don’t worry about it, we have enough folks here, wealthy or not, who would be more than glad to contribute, do you know more hospitable people anywhere other than on island … I don’t … where to send check.

  4. umum says:

    Why are Bermudians so resistant to socialised medical care?

    • ann says:

      Really,How are we going to afford that? Income tax has been put on the table and the crying started how that’s not fair. Our civil service is way to large and receives better sick, Holiday and compensation packages than the private sector. So…. how do you think we should fund socialized medicine??

  5. Don Burgess says:

    If anyone needs more information they can drop me a private message on Facebook or they can email me at dburgesspb@gmail.com

    Thanks,

    Don

    • whatever says:

      Mr Burgess, you should suggest that Ms Johnson set up a crowdfunding site. It’s a super easy and inexpensive way to raise funds (easier than mailing cheques around).

      http://www.gofundme.com/?pc=cf2

  6. Ella says:

    I want to help. How can i contribute? It doesn’t mention in the article..

  7. Concerned Canadian says:

    Have you thought of setting up a GoFundMe page?

  8. Hazel says:

    Will an account number be published for funds to be deposited to? I will certainly contribute to this worthy cause. May she get the assistance she needs…Wishing you God’s richest blessings Ms. Johnson.

  9. how you doin says:

    Gov’t please step in and help one of our own. Thx.

  10. Darryl says:

    Poor lady, I cant take headache pains, leaving out her chronic pains. Prayers will go up. She will get her relief from pain in Jesus Name.

  11. Oh My says:

    How does one contribute?

  12. jenny says:

    Wow, unreal, I know that feeling of oweing moneyvas well to lcca, lord knows it isnt easy, no way to even pay onthat bill too, cause cant work, from cchronic illness, always that worry if something should happen, how you going to manage to go away again oweing money already for surgrey, I owe 60,000 dollars hip only covered 16,000 dollars, and can only have hip insurance, cause of pre existent condition, and like I said cant work, my heart goes out to you, sure know how that part feels, but dont know the pain, for me living with my illness, I pray people help, one day I might be as well in same position, I know I dont have a lot myself, but for sure can find a dollar, and im sure everyone could

  13. peter n says:

    So sad..no one should suffer due to finacial woes or circumstances..ever!! Shame on our government and our healthcare system…dispicable bermuda!!

  14. aceboy says:

    Why can’t the cause of her pain be mentioned? Legal reasons?

  15. ME TOO!!! says:

    I literally just returned from a trial version of the same surgery after dealing with chronic pain for 14 years. The trial did not provide the relief that I need in part due to the fact that I have systemic chronic pain (all over my body) though the main focus of the procedure was also my leg as such a procedure is said to be more effective on extremities. Not everyone will have the same results of course so it is good, no, GREAT! that Ms. Johnson has found relief in this course.

    The battery device is usually not implanted deep within the tissues but still is not to be seen protruding though it can be felt when the area is touched. There is also usually an external remote to control the stimulation that the device provides as well as an external recharging device that you would hold near the implanted battery site to recharge. The medical team also can externally recharge and adjust the battery settings without further surgery. Ms. Johnson’s case sounds interesting in the way of repeated surgeries having occurred and while I know that Lahey and Johns Hopkins are highly noted by Bermudians, may I offer that there is another internationally recognized and very highly regarded institution that may be worth a try. If interested, Bernews can contact me for further information.

    I suggest them to you because they also have a well comprised pain rehab program which I have also just completed that sounds like it would be well worth a try for you. There is no cure even for my chronic pain condition and I know how extremely difficult it is to not give up and to smile and to pretend by putting on a brave face. It is made harder when people look at you and “see nothing” wrong though you feel like you just got hit by 10 buses! The understanding can only come from those who feel it too and the fix can ultimately only come from God. Until such time, we have to brace ourselves, endure, and keep hope alive for not only a cure but preferably less invasive methods of relief just to make it through the day.

    Hope is the only thing that is free, the rest of this will cost significantly. I count my blessing to be employed despite my agony all day everyday and would not have been able to seek the treatment attempts that I have without insurance coverage. What’s important through it all, is that Ms. Johnson and others are their own medical advocate. Do not say yes to everything that is suggested out of desperation for relief. I know this feeling and I know that it is tempting. If you happen to have the same condition that I do, repeated surgeries will not fix us so it may just be better to say no thank you or that you will wait (I have done this too) when the professionals jump to costly “options”.

    There is a rub that Ms. Johnson may also find helpful, one is a medicated compound rub and the other is easily bought online. Out of all the rubs and everything else that I have tried, all of which have never worked, I can attest that these two have provided relief to some degree. Again, we are all different but understanding your plight, I will say that these are worth a try.

    I pray the best for you Ms. Johnson and I would love to see all others with chronic pain in Bermuda, diagnosed or yet to be, to come together in positive support and to encourage awareness even amongst the medical professionals in Bermuda many of whom spent too many years dismissing me and my pain as well because they didn’t know what to do but more importantly, never tried and never truly listened. Education of this thing is paramount. I honestly am not sure how to but I am willing to do what I can to form the local support group base. Bernews can contact me if others express interest.

  16. dee richardson says:

    HIP pays 60% of reasonable charges and Financial Assistance may be able to help if you qualify. Call the nurse practitioner Mrs Liacos at HIP for guidance.

  17. Amy says:

    Wow! I was searching web and came across this article. Im searching bc im in exact same losition w a back stimulator. Its been 4 yrs since implant. Lost 33lbs and the leads and box dropped. I now have “speghetti” in my back and a box sticking out making it hard to sit in wooden chairs etc. We had insurance 4 yrs ago. Husband works so hard! Prior company stopped paying our insurance without telling us and BAM we’ve yet to recover financially. Almost lost out house, still could. Sue the prior company? Ya, ok. We did. Owner is sitting in Hawaii and i cant sit, period. Cant get the surgery. Extreme pain. What do i do?! We’ve paid taxes our entire lives. ALOT of taxes. We’ve contributed these taxes so people unwilling to work get free medical, including dental and eye,?! Hard working, was middle class family, marriage of 25 yrs,great kids etc. So now what? Im just screwed? To purchase ins on own is almost 1,800 month! So i guess we still get to pay our taxes and contribute to nonworking for their medical yet i get turned away? Yes im angry. Angry and in extreme pain. I truly believe its bull*** that we pay for others yet im out in the cold. Infeel for this woman dearly. Im glad she got some help and im sure she’ll raise her funds needed. Me? Wont happen. Theres nowhere for me to go to ask! We qualify for NOTHING. Never have asked ever for anything that way. So,as i write this crying, does anyone agree theres a middle class group that is constantly screwed over taxes/$ wise?! Its true.