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Please help...anyone been refused surgery?

Portia

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Hello members,

First time poster here, desperately seeking some advice. Has anyone been in a situation where you were told that your hip is too bad to qualify for a surgery? Long story short, my husband had a serious case of osteomyelitis in his right hip in early 2017. He was very sick, in hospital for 2 months and on antibiotics for 6 months. He got through that but the infection has severely damaged his right hip. We moved to Newfoundland, Canada and saw an OS here who told him yesterday that attempting to surgically fix the hip was "not in my husband's best interests" and that he didn't believe it would work. This was quite upsetting because when my husband first saw the OS last year he had indicated that he was open to doing the surgery but wanted to wait until a couple of pressure sores were healed first. Now he is saying it can't be done. In addition, when we told the OS about the pain my husband is experiencing he didn't offer him anything, just told him to take extra strength Tylenol and if that wasn't enough we should find a pain specialist. He told my husband he would just have to live with it.

I told the OS I cannot accept that. My husband is a young man, 39, and he is already dealing with other health issues. He suffered a spinal cord injury several years ago and is in a wheelchair. But he just wants to live a normal life as much as possible, go back to work, do some of the things he was able to do before his hip got bad without living in constant pain. But I also have trouble accepting it because I have read a lot about hip surgeries over the past few months and I haven't come across cases where a hip is so bad that it is impossible to fix. It seems that surgeons just find ways to reconstruct the hip or use alternate methods of surgery beyond a standard THR.

The OS said we were free to seek another opinion. But I'm not sure what to do. I feel like my husband's case is a complex one and maybe he needs a specific surgeon who has handled this type of case before. Here in St. John's there are other OS but we're a small province and I don't know if any of them have dealt with cases like my husband's, and I feel apprehensive that they will just agree with the other OS because he is generally well regarded here and doctors are kind of a fraternity so they might listen to him rather than us. I was thinking maybe my husband should seek an OS in Toronto or maybe even out of Canada like Boston or Johns Hopkins. But I don't know the Canadian health system that well and I'm not sure if we would be covered if we go out of province or out of country. We have private insurance but it's not great.

Has anyone been in this situation? What would you do in this case?
 

mainegirl1

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Maybe none of the surgeons in your area have the experience to handle a complicated case as your husbands seems. to be. St Johns is not that big a city.. I would try for a bigger city like Toronto for at least a consult with a hip replacement specialist.

I hope your hunt is successful and please please don't despair.
 

trenna

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If your husband has a GP, have your GP shop around his xrays/mri to various orthopedic surgeons. Sometimes doing that can lead to finding a good surgeon who is interested in the case.
Your GP should also have a good idea who the better qualified surgeons are.

In the meantime to deal with the pain, make the appointment with the pain clinic because those can take months to get into (it took 9 months for a friend of mine to get an initial consultation in rural Ontario) . Also make an appointment with a medical cannabis clinic, but be aware that mmj prices start at $90 out of pocket per month and increase.
 

julesglass

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Hello @Portia, I live in the States. My daughter googled top OS in Iowa and found the surgeon that did my right hip and will be doing lefty in July. Do ask your GP for assistance, however do some searching yourself also. Stay with us here let us know how it's going.
 

mikeycat

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I am from Canada as well . Do research. I have a great physician here chief orthopedic surgeon in Canada. Also To General has been noted as one of the top hospitals in the world. You must look elsewhere in Canada. I had a woman in my group who was from Victoria and came to Montreal to see the surgeon there and was very amazed. 39 is too young.
 

Carriemay60

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@Portia I live in Ontario and had a fall resulting in a hip break in Alberta. Emergency surgery was done in Alberta, was all direct billed except for a patient transfer ambulance which we had to do the paperwork on and submit the bill. My husband looked after all the billing, etc. but I don't think our extended health insurance came into it much. I don't anyone would pay the accommodation outside of the hospital stay but I would think you could find a suitable Airnb.
I would think you should be able to find someone in Toronto. I did a lot of reading on this site and my family doctor to make my decision. I don't know if writing a letter to them would help (I never got replies) but a few phone calls might help a bit with some questions to make a shortlist. I live about 45-60 minutes out of Toronto towards Niagara Falls and would enthusiastically recommend my surgeon, Mitchell Winemaker also.
https://www.ratemds.com/best-doctors/on/toronto/orthopedics-sports/
 

Ptarmigan

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@Portia I can only imagine how disheartening it was to get this news from your OS consult, and it seems to me you are very brave to reach out here on this forum. As hard as it is to see this, the OS was, in his own way, kind - as it was clearly not within his expertise or his confidence to offer your husband a surgical treatment. So he is not going to treat your husband. You need more information, and new doctors.

You use the word “complex” to describe your husband’s overall medical condition and that seems very accurate. Which means you will need an excellent partner in your primary care doctor (if things work the same way in Canada that they do in the US). You’ll need referrals, and it sounds like a pain management referral would be a good place to start.

Here is the US, surgeons don’t treat chronic pain (pain that lasts longer than a few weeks or requires significant medication). And primary care doctors don’t either. Pain management has become its own specialty. My husband has nerve pain in his lower back that isn’t treatable surgically; it’s been a long road, but he’s living well and managing on Tylenol after a few years of pain management treatment. Pain management is multi-pronged. My husband was treated with antidepressants, muscle relaxers, sleep aids, and nerve ablation as well as opiates, which he has been able to discontinue, along with acupuncture, massage, and meditation. Marijuana has been useful to him as well, once he was discharged from pain management (there was a prohibition against using non-prescribed drugs/substances while he was in pain management treatment).

Hip replacement surgery accomplishes two things: it treats pain and it restores mobility. In your husband’s case, it sounds as though pain management is your more important goal. An OS treats hip pain with an operation. A pain specialist will treat hip pain medically instead of surgically. You can start there, and move towards incremental progress and quality of life improvement, while you organize referrals to more expert hip replacement surgeons for their opinions.

You sound as though you are the advocate and partner I would wish to be in your circumstances and my heart goes out to you. You are doing all the right things. Keep asking questions. Keep reaching out. Try to find the patch of sunshine that exists in each day even when your answers remain elusive. Tend to yourself, too - you must put your own oxygen mask on first before you can help anyone else. And let us know how things go.
 
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Portia

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Thank you everyone for posting here, I truly appreciate your thoughtful responses. My husband and I are looking up the names of some good OS in Toronto (CarrieMay I will certainly check out your OS too that your recommended). We also got the name of another OS here in St. John's who seems highly regarded, I am not sure how long of a wait it will be to see him, but we will ask him if he has dealt with these kinds of cases and if not, to refer us to Toronto. From what I've been told, we are going to need a referral from an OS here in order for provincial health to cover any procedure I think. Meanwhile, we are focusing on his pain as suggested here, we are looking for a pain specialist in town and he has started trying CBD oil which helps him to sleep but is a very low OTC dose, so would be interesting to see whether medicinal cannabis would offer him relief.

Thank you again all and God bless, I'll try to keep everyone updated, this forum seems like a great resource so I'll be checking in from time to time.
 

Ptarmigan

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@Portia It’s hard to overstate the importance of sleep in all this. A dear friend reminded me to start with sleep. She said the mental game was crucial to quality of life when coping with a chronic medical condition - and there is little hope of a mental game without sleep. This is truly wise.

Best wishes to you and your dear husband for a restorative weekend.
 

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