Decision making time, Any advice?

Kandy

So as some of you might recall, I have been dealing with an acetabulum fracture due to radiation to that area. This has been such a difficult situation. It was diagnosed last September and I haven't been weight bearing since. Grrrrr. Anyway, long story short, the Orthopedic Drs here ended up doing a CT on my pelvis in January. It showed that the fracture is now extending into my pelvis and is in 3 pieces and has some displacement. So my radiation oncologist sent me to another city to see an orthopedic oncologist. He consulted with a trauma surgeon there and I seen him yesterday, he gave me my options. They were not good. Option 1, was to continue as I am, the fracture will probably get worse. Due to the radiation it is unable to heal. At some point, I would still probably have to have something done and then my options would probably be less than they are today. Option 2 was to do massive surgery to pelvis, putting plates and wires in to hold it together. This carried a lot of risk. Surgery would take about 8 hours. Risk of hitting a major blood vessel cause they have to move them out of the way. Since I have already proven that the bone there is unable to heal, if it doesn't heal after surgery than there is a risk that the bone will get infected. If that occurs than more surgery to remove the bone infected. The other risk is that the hardware will be unable to stay in place cause the bone won't heal. The 3rd option was to just remove the head of the femur, not putting anything there in its place. That would relieve the pressure on the pelvis but then obviously walking would be difficult. I have a week to think about it. I don't like any of my options. Please help.

diana50

kandy

Very hard choices

I would pick #3 because less invasive, you could still walk and faster healing. The other two options sound like more complications could arise. Physical therapy could help you learn to walk. Also recovery would be faster. That's what I think I would do. Keep us updated.

Best

Diana

susan_02143

Oh my goodness! Way too complicated for me to give advice. Just wanted to write and let you know that my empathy level is at an all time high. Best of luck making this decision.

*susan*

ps. Do you have a trusted primary you could talk with to help you clarify all the pros and cons? Have no idea if that would help.

MaineRottweilers

You are not a dog but my only relevant experience is in dogs. I have seen more than a few catastrophic hardware failures due to delayed healing, most often because dogs are difficult to rehab and keep quiet. Because of this (and expense), FHO (removal of the femoral head) is the more common surgery in many veterinary practices after hip/pelvis trauma. These dogs experience immediate pain relief and usually walk right out of surgery, it does take a few months of low impact therapy to get the joint capsule to scar in and become a stable, false joint but they are walking, swimming and seem pain free except the occasional crazy stunt that dogs will pull. We have even done bilateral FHO at the same time, that was a more difficult recuperative situation but still less intensive, painful and restrictive than dogs with hardware. Again, you are not a dog but I can only imagine the risks and recoveries cannot be dissimilar.

Kjones13

holy moly! I have no advice either. I can see why you don't like your options! I hope you will be able to find enough info on each option to be able to make a decision you feel good about...or as good as possible. Best of luck to you. I can't remember what city you are in, but is there a possibility of a second or third opinion

Tina2

Devil, deep blue sea, rock, hard place. Yikes, Kandy--what a dismaying array of "choices." It sounds as if you're dealing with knowledgeable experts, but I do like Susan's idea of consulting with your PCP as well. And Tracy made an interesting point.

Feeling for you,

Tina

Mel26

These are not great choices at all. If it were me, I'd choose #3. The least invasive, and less surgery time. Did the doctor say what the reality is of living without the head of the femur? It would seem you would have a pretty dramatic limp.

I have a severe kyphosis (curvature of the spine), with collapse of 5 of the thoracic vertebrae, due to radiation. I shrunk 3 inches, and am in chronic pain. Grrrrr is right!

Good luck with your decision, please keep us posted.

Melanie

sueopp

Geez Kandy, I dunno. You are a smart cookie - go with your gut. Sending love, SUE

blainejennifer

I have to echo MaineRotties: #3 is a very common procedure in dogs, usually to relieve dysplasia of the hip. I've had two dogs go through the procedure, and - after two or three months of rehab - they move and act as if there is nothing wrong.

It's a very hard decision.

artistatheart

Kandy, Like Susan my empathy is at an all time high. What a sucky situation.....I do not have any personal experience but like Diana and a few other ladies, I would pick the least invasive and more likely to heal OK outcome. A week to decide is a lot of pressure. I hope your Dr's can answer all of your questions well and put your mind more at ease. I am so sorry you have to deal with all of this. Please keep us up to date. We are all with you in spirit here...

RonnieKay

Kandy...I agree with the others on least invasive, best chance of healing with least potential of further injury...ugh...you've already been through such a tough time.  If this can take the pain away, maybe your body will be in a better place to become stronger & heal. My DH had a hip replacement 9 yrs ago. After 4 yrs, the same pain came back, surgeon didn't think there was a problem.  Another 5 years, horrible pain, lumping, terrible QOL, new surgeon operated & found he had NO bone growth w/first operation. Hip cup was held in place by muscle & scar tissue...for 9 years...said a miracle it didn't dislocate.  I think your body can/will recover...we know it's an amazing machine. As tough as it is to make this decision...maybe the faster they make repairs, the better.  Prayer, hugs & hope!!!

Zillsnot4me

Good luck. No advice or experience.

Heidihill

Have no experience whatsoever, but maybe choice 3 would allow you to heal the fastest. Thinking of you.

Kandy

Thanks for all the input. I am still thinking about it. I am worried and scared. Yuck.

Kandy

Actually, they indicated that the last choice was really only used if there wasn't another choice. Such as if I decide to do nothing and the pelvis gets in worse shape. If that would occur, then I would definitely have to use at least one crutch to be able to walk. And back problems would occur cause of the off balance issue. I really have horrible options. Just don't know what to do.

dlb823

Kandy, my heart goes out to you. I guess the only thing that crossed my mind in reading your post is to wonder if another ortho doc -- one who truly specializes in situations like yours -- maybe an oncological ortho doc vs. a trauma ortho doc (who may deal more with crushing injuries) -- could be any more optimistic about outcomes for option #2. In other words, is there any benefit in getting at least one more opinion, ideally from someone who has done enough similar surgeries to maybe have more optimism re. recovery, or even a slightly different option??? Deanna

Kandy

An orthopedic can not fix the pelvis. It must be a trauma surgeon. But where I went to has an orthopedic oncologist that I seen before the trauma surgeon. He also will be attending the surgery if I decide to go that way. I was actually told the same thing by another orthopedic oncologist before I went there. I am actually going to a cancer center. The problem is, both said that there was not enough people this has happened to, to know what is the best. They do know that I am at a disadvantage cause it hasn't healed yet. There just doesn't seem like a good answer.

MusicLover

Have you done any research on the internet on the subject of helping fractures heal more quickly? I did a search and several things came up but since I know nothing about this I was apprehensive in suggesting any of them. But maybe you can try something that is suggested and give it a little more time?

leggo

Kandy, ugh, I can see why you're struggling with the decision. I know if it were me, I'd ask for a test to see if that bone is necrotic and how bad. I can't remember what the test is called but when I had similiar bone issues, they ran tracer dye through in real CT time to check the blood flow. If there is still blood flow to the area, I would think that surgery to the area would heal. If not, I wouldn't risk the surgery. I guess it all depends on the amount of necrosis from the rads, which is the kind of information this test could provide. I'm pretty sure the cement they use also contains some sort of mega-antibiotic to help the healing along. So very sorry you have to make such a decision.

artistatheart

Kandy, I was just thinking about you all night last night and today. I just hope all the doctors getting involved can collaborate well and help you make your decision easier and help relieve your stress somewhat. We'll be waiting for your news no matter which you choose.

steelrose

Oh Kandy, yuck is right. I'm so sorry that you're faced with this. I'm not equipped to give advice re. what is the best option, but I guess #3 sounds less scary? I'm a big believer in physical therapy, so maybe that crutch could be temporary?? They gave me a 50/50 chance to walk again after spinal surgery, but I'm up and functioning normally. Are there any success stories of people who have gone through your situation?

I'm thinking of you, and wishing you the best as you make this difficult decision…

Rose.

Leslie13

Kandy,

Those are very tough choices indeed. I can only compare to living with a bad hip, because Cancer interfered with getting a replacement. I'm waiting 2-3 months for a new hip now. Of course, it's nothing compared to what you are going through. Reducing pain would be most important, as even if they can create a functional Pelvis, will you be in too much pain still to walk? I don't like the risks major surgery brings, and it sounds like you have no ability to heal. That's asking for an infection. And an infection would be catestrophic. I don't know if they can replace your entire pelvis with man made materials.

You can't discount the outcome of injuries to muscles and nerves either with major surgery.

I know giving up walking is undesirable, but your pelvis may give you no choices. There's lots of mobility devices out there, and many communities have good services helping people who can't walk stay independent and active. How is your support Network? Guess I'm leaning towards option 3 for you

My best friend has had 8+ back surgeries, and just told she needs another, much more complex surgery. She's very upset about the possibility of losing her ability to walk afterwards. I don't blame her at all. If that happens, we'll look at other ways to help her quality of life.

Mab60

you have been on my mind a lot. Did the docs mention the use of bmp (Medtronic) if you chose option 2? It encourages bone growth. Not sure it would promote healing in your case. I know it is widely used off label. Not sure about the indications for us with mets to the bone

DivineMrsM

Kandy, I don't have any advice on the matter. Sorry that you are going thru this. I've been following the thread and have you in my thoughts and prayers.

artistatheart

Thinking about you Kandy.....

Ohmydarlin

Sending love and prayers!

Kandy

Thanks to all of you for your input and prayers. It is awesome to have so many people that care. I have an appointment on Tuesday, it is supposed to snow where I live on Monday. So I am not sure I will make the appointment especially since we must drive 2 hours to get there. I really haven't decided what to do. I just don't like my options. I told my DH, I just wanted to live in the land of DeNile. But that is hard to do when you can't get around. I contacted my radiation oncologist and he said that really the only choice I have is to have the pelvis surgery. The removal of the head of the femur was not a good option. I have been praying hard for healing. I am hoping when they X-ray it, there will be improvement and maybe it will eventually heal. We are having a gender reveal party on March 9, for my first grandbaby. I will be here for that no matter what I decide.

artistatheart

Good to hear from you Kandy. Some pretty hard choices there and I feel for you. I am praying hard for your healing too and look forward to when you tell us that the surgery is behind you and you are on the mend. Sooooo exciting about the new grand baby!

JFL

Kandy, I have been thinking about you too. Do you have active cancer where the fractures are located or is the radiation the sole cause? Just wondering if there is a chance a change in meds would help. Praying you find some answers on how best to proceed in the next few days.

Kandy

This is the result of the stereotactic radiation. There is no active mets. I told my husband for the first time I actually thought that I could die from something besides breast cancer. Yuck. Decision time is approaching.

sueopp

Oh Kandy, my dear. I can see how your thoughts could go there right now. Stuck between a rock and a hard place, and hurting besides. The sunshine breaking thru is that little Grandbaby coming soon - all of we Aunties (a lovely image, Ronnie K) circling you with joy in our hearts! Sending good karma and love, SUE