Turf Toe: Very Disabiling!!

Hi!  I found you through Youtube and have spent some time on your website.  The more I read, the more I realize I am in trouble.  I do not know if you still answer emails, but I thought I would send this.  I have nothing to lose, only to gain; right?
Dr Blake's comment: Hopefully, right?:)

So...  A year ago, I had a serious "Turf Toe" type injury, resulting in two fractures at the top-side of both joints of the big toe, one fracture, each.  I had ligament, tendon sprains, and nerve injury.  Eventually, it began developing into possible CRPS symptoms, which a physical therapist noted and got right on top of.  (I am very happy to report that those symptoms have been resolved.)
Dr Blake's comment: That therapist needs to be in your will, or at least a thank you!!

Because there was so much going on and pain and swelling everywhere, I didn't realize the pain under my foot was any different than the pain everywhere else, in the first couple months.  Through the entire year, except for wearing a boot for two weeks, around the clock, my instructions remained that I walk on it at home, with no boot (which, for me, meant barefoot, since I can't tolerate slippers or even a sock - nerve stuff) and only wearing the boot when I leave home.  

During this time, I have gradually turned into a shut-in.  Life as I knew it, stopped.  My job, gone.  As the months passed and pain, swelling, and inflammation persisted, I began asking about an MRI.  For months, my podiatrist kicked the can down the road, citing the expense for the insurance company.  Six months after the injury, he finally conceded.  The MRI showed that I also fractured both sesamoid bones.  And my resulting treatment?  IT REMAINS THE SAME!  Just keep on walking on it (booted only when I leave home, which is pretty much never)!  99% of my life is now lived banished to my recliner - but bootless, as instructed!!
Dr Blake's comment: One of the hardest things for docs in the short office visits we have is to fully understand the disability someone has! It is sad, and the patient gets into this predicament. Rehabilitation is a balance between pain and function. Sometimes we actually have to ignore some pain to increase function. It is also the role of cross training. Many patients can not walk but can build up to 2 hours a day on a stationary bike, and this can be emotionally and physically so healing. With a stationary bike, none of the weight has to go through those joints. 

A month and a half ago, I re-injured it while wearing the boot - toes being violently propelled over the top of the bootstrap, resulting in a fulcrum effect, at the base of the toes.  I fractured a new place in my low, big toe joint and the new MRI shows both sesamoid bones, still fractured.  

The doctor says he cannot tell if they are new fractures or old ones, that never healed.  My vote is the old ones never healed.  The pain and swelling never went away!  

And now...  I have de-mineralization (rated as moderate to severe) throughout my entire foot!!  I just saw a sports medicine podiatrist for a second opinion.  After seeing the two MRIs, he ordered a CAT scan, which I had done today.  He said, depending on the results, he may recommend removal of one or both sesamoids.  (He said recovery will only involve non-weight bearing on the front of my foot for 4 - 6 weeks, then I'll be good to go!  I suspected that wouldn't be enough, which I have learned from your site, is true.  Common sense!  But none of this last year falls under the category of common sense, for me.  Why not treat my fractures like fractures, instead of having me walking on them for a year??)
Dr Blake's comment: Please send the CT scan disc to Dr Rich Blake, 900 Hyde Street, San Francisco, CA, 94109. It will be good to have a clear view of the injuries since my mental picture is getting foggy. I am from San Francisco known for our fog. 

At this point, I am at home, unbooted, with crutches - why not just use the boot, right?  I CANNOT walk bare-foot on the front of my foot, as instructed by the original doctor.  It seems like I will never be given the chance to let the bones heal through immobilization, because of the bone de-mineralization (that was NOT on the first x-rays/MRI, last March).  I would think that immobilizing, the way it should have been done, now, would make the state of my de-mineralized bones even worse.  If he recommends surgery, I will never know if my sesamoid bones COULD have healed, if given the chance.  This is so not right!
Dr Blake's comment: Docs are given mere thumbnail prints of your last year in one visit. This can make the correct decision clouded by the need for pain reduction and mobility so I can see why anyone with a heart would at least entertain the thought of surgery. 

Am I seeing this correctly?    

Then...  I followed a few sesamoidectomy video diaries on Youtube and the experiences of these poor people were awful!  Do I even want to do this to myself??  ONE AND TWO YEARS LATER, they were still giving updates about their continued pain and limitations!!  Is that my future if I have surgery?  Then, of course, comes the next question.  After a year of this, already, is THIS my future if I do not have surgery???  It all looks so hopeless.  I feel trapped, with no way out!
Dr Blake's comment: Surgery has complications, but sesamoidectomy is a very successful surgery overall. When I struggle with my patients, some do eventually need surgery, and I am sorry, but they do well. I tell my patients that all the skills you learn trying to avoid surgery, help you if you eventually need surgery. You have an unusual case that needs a lot of thought. You have not walked for far too long, and you had a second injury. Also, total healing comes from too many factors that I have time for, but you work through them. But, do not focus on the 1-2% of patients that have major problems post surgery. That will serve no purpose in your attempt to heal. 

(One woman had the surgery, her big toe crossed the others, corrective surgery did not work, they fused her big toe joints, there were complications with that, then the last post was that she had the advice of two doctors to amputate!!!  Scary stuff!!!)  

Does this surgery benefit anybody???  I haven't found that story, yet.  Is it possible to have a life without permanent pain and dysfunction after this??
Dr Blake's comment: Yes, but you have to find a good surgeon if it gets to that. 

Maybe the biggest question is, "How many doctors do I go through before I find one that listens and knows what they are doing?"  THAT is the greatest futility of it all.  (The two ER docs, from each injury, missed it, which is incredible to me.  The very first podiatrist recommended two surgeries based on x-rays that were not mine!  He is known for unnecessary surgery, apparently.  I ran from that place and into the care of an orthopaedic surgeon who said it was no big deal.  He literally said I was not to modify my life, in any way, and to walk on it until I saw him, six weeks later.  At that point, he re-x-rayed one of four fractures, missing the other three, then announced it hadn't healed and I needed six more weeks of un-modified walking.  "Call if you have any problems."  No follow-up appointment.  The next doctor is the one I spent the rest of the year with, until the second opinion, I just got.)
Dr Blake's comment: I am sorry. Let me know what cities you are around, and I will send you a recommendation or two. You will at least need another opinion at some point. 

Another question.  The in-office x-rays (second opinion doc) shows the toe fractures have healed, but I still have pain that shoots out of the joint at the base of the toe (where the fractures were) when I walk.  Is there any correlation to the sesamoid fractures?
Dr Blake's comment: Of course, they are in the same area basically. Occasional sharp pain which quickly disappears is not considered damaging.  The real job now is to create that 0-2 pain level as you begin to walk more. This typically needs some form of off weight-bearing padding and an arch support. Sometimes you need crutches to help. 

And, I am getting this weird internal/external swelling that both doctors don't have an answer for.  When I rest my foot on the floor, my big toe is elevated/suspended more than half an inch off the floor.  The toe next to it (which is also still having joint pain, swelling, redness) is lifted off the floor a little less than the big toe, then the third toe is almost on the ground, while the fourth and fifth toes are on the floor, as they should be.  It has been like this since the first injury, but improving, as time went on.  The second injury brought it right back and it is not improving, at all.
Dr Blake's comment: Anytime that there are positional changes you think of tendon or ligament tears (common in Turf Toe), and these may eventually necessitate surgery. Swelling in the big toe joint typically does not cause these toe positional changes. I would find out what ligaments are torn from the MRI, the bottom or plantar ones causing the toe to go up, and the top or dorsal ones causing the toe to go down. If you lose a ligament, you have to ask the tendon in the area to try to get stronger and compensate. You can initially tape the joint so it stays in the right position. 

It also feels like I did something to the tendon at the center of my toe, travelling over the top of my foot and into the ankle.  It hurts just to touch it.  If it is the tendon, it has been very painful (with swelling).  No one responds to my concerns, at all.  I talk to the wind and the wind doesn't speak.  I wonder if that tendon could be pulling things upward, except the other two toes are involved, so probably not. 
Dr Blake's comment: No, the tendon could be in spasm, being partially damaged. Or there could be nerve issues causing the tendon to contract. Think of seeing a neurologist or physiatrist to evaluate the nerves. Send me the MRIs if you want another look, or I can give you the name of someone in your area, if I can find someone. 

From the moment of the second injury, I instantly became unable to move my big toe, at all (physical therapy had freed it up into an almost full range of motion, before the second incident).  I can get it to flutter a little, but nothing more than that, in either direction.  No one seems to think that means anything or that it needs any kind of intervention.  The MRI apparently says nothing about it, either, which is confusing to me.  (The previous doctor suspended physical therapy, to date.)

Doesn't it seem like doctors should diagnose/treat everything that is going on, rather than choosing the obvious spots to focus on, while ignoring the rest?  That's how I got here, to begin with. 
Dr Blake's comment: I agree. You probably need someone working on the exact injury, someone working on the pain, and perhaps someone overseeing it all to make sure each month you are moving ahead with progress. 

I guess I am sending a message in a bottle, so to speak.  If you have read this far, I deeply thank you for your time.  God bless you for bringing information to patients that wouldn't be able to find it, otherwise, because I am one of those.

Sincerely,

Addition:

If I walk in a boot, is that enough weight -bearing to help the increase of de-mineralization from occurring?
Dr Blake's comment: For sure. Take some photos of your feet and put some xs on where they hurt. Unfortunately, thru this conversation, I still only have a small idea of what is going on. Thanks Rich

 It's got to be better than not walking, at all, or so I would think.  Maybe if I get mobile, in a boot, at least I am walking.  I really do not know who to trust or how to proceed.  (This so sucks.)

Thanks, again...