I am not ok. Not even a little. There's a lot going on and I don't know where to start. I will be brief as possible while still giving as much context as possible.
Before I get started please don't suggest I get a second opinion as no doctor will take me on. I don't know if it is because I am only a moth post op, but no one will treat me and I am just told it's the surgeons responsibility and a liability issue. This is not an insurance thing as I can see any doctor that takes my insurance without a referral.
The same surgeon that disappeared for 11 days after the surgery then lied to me and denied an infection that he diagnosed and treated .He has stopped this gaslighting as my WBC sed rate and CRP do not lie(I was forced to go to the ER when he ignored the infection coming back). I did have an infection. A very serious one. An infection that likely could have been prevented if he had just listened and gave me antibiotics before the procedure like I need to do with the dentist. My immune system is not healthy.
So why am I not better? Well I have some nerve damage or some sort of vascular thing going on. I also am still actively bruising. Not small subtle bruises but giant purple bruises that keep happening. I am also still too swollen to fit in the aircast and haven't had my pain treated in weeks . It's not like surgery and infections from surgery are painful or anything. Sed rate 69 (nice! lol)
Why do I think it's nerve damage? Well because I know what nerve damage feels like and also this is classic nerve damage symptoms that started when I woke up from surgery.
The peripheral nerve bock failed. This did not surprise me because dental nerve blocks also fail or partially fail on me and always have.I need at least 3x the numbing agent and it needs to be reapplied every 5 -10 minutes(not exaggerating). This has always been the case with me. For some people this is just a thing.
How do I know the nerve block failed? Well I woke up from surgery in excruciating pain. I could also wiggle my toes. I was supposed to essentially be temporarily paralyzed and should not have been able to wiggle my toes for at least 24 hours. I saw the "oh shit" look on the nurse's face when I could wiggle my toes .It felt weird but I could do it.
I did feel tingling sensations. Some loss of touch but mostly cold tingle and pain. I figured this was probably a partial nerve block fail. I also assumed the swelling from the cast could be cutting my circulation a bit. So I ignored this.
5 days later when I went into the ortho office and spoke to his PA (who also dx the infection) I tried to tell him about this cold painful tingling and nerve zaps. He interrupted me before I could explain what was going on, said it was normal and not to worry about it. He was not kindly reassuring me. He was basically eye rolling and dismissive.
Again I still assumed it was essentially wrapped too tight and the extra swelling was not helping. I ignored it thinking it would go away when I transitioned to the aircast boot.
In the boot it did not go way. I still thought well maybe it was too swollen and was wrapped too tight. The the infection came back(a coupled days after stoping antibioics) and It swelled to the point I could no longer wear the boot.
Infection is cleared but I still cant fit in the boot as the swelling is still really bad.
Once the infection cleared I unwrapped it completely (was told it's ok to do this at rest) The tingling did not stop even after days or it not being wrapped.I'm struggling to keep the foot warm even under layers of blankets. When it does warm up the pain intensifies it goes from a cold tingling pain to a hot tingling pain, the hot tingling does NOT subside. This is not just circulation coming back pain (I have reynauds I know what that is like and it is temporary)
It is more pain and tingling than numbness but there is some loss of sensation in my entire foot up to the bottom my calf like I am wearing in invisible boot of tingle and pain. It is very obvious where it ends as the temp and sensation is very different above that invisible line.
It feel like when novocaine is wearing off after a dental procedure where you can feel tingling but your cheek still feels weird and you can move it but it is a struggle. Similar to when a limb "falls asleep" and is waking up but not quire back to normal.
I talked to ortho about this a couple days ago. He referred me to ultrasound at a vascular specialist (I am already a patient at that practice). An ultrasound with the pain and swelling I am experiencing and I have no pain meds. Do you know how hard they press on ultrasounds? Is ortho trying to torture me?No way in hell can I tolerate one right now. I would like CT or MRI though and will get ultrasound when it's possible to do.
I do not think this is a circulation/vascular thing (or at least not just a vascular thing) as there has not been any color changes. My toes/feet are not turning white or blue but my foot is red when it's wam but that is both feet. My hands and feet get very red hot and burn feeling frequently (like a sunburn) so it's not different than the other side really except it is more swollen.
Oh and on top of this the damage to my left side which had the same issue as my right before surgery makes it so I can't weight bear on that side either. My left side had been ignored from the start despite me begging for something to prevent this.
So now what? No other dr will take my case. The ultrasound is not something I can do right now and I am refused other testing. Even if my ankle was healing as I should be moderately weight bearing on it at this point since I can't feel my foot very well trying to walk would be very dangerous. At least ortho agrees with that point.
It's like imagine you are recovering from surgery with two busted ankles and one of them is "asleep" but never wakes up. This makes walking impossible. I can do that anyway because I am not healing.
What little QOL I had before surgery is gone. I am having to starve and dehydrate myself because even with a wheelchair I cant get up and use the restroom as often as I need. I am also very very weak(was weak before cutting back on food/water) Yes I told ortho and he just gave me a boot for the left side which I should have gotten BEFORE surgery. The damage is done. I am supplementing vitamins the best I can to get some nutrition but I am eating drinking about half of what I should be.
With my chronic illnesses starving and dehydration are common .I am not always able to get up and use the restroom and since I don't get any treatments for the underlying cause I have to conserve energy and that usually means starvation .I am often too tired to eat as well. In fact I often starve after going to in person dr appointments because I do not have the energy to eat. Drs do not care at all about this. If I had MS or any other disease they would care but having POTS and ME I am just seen as a "faker" "hysterical" or having a eating disorder/anxiety. I do not have the energy to eat often and also my jaw goes off trick the more I push, so I don't eat like I should because I am not able to. No one cares.
I have no choice but to "freeze" my foot. I keep it cold because I can't tolerate the pain when it warms up. The tinging never goes away when it warm anyway so I may as well be less in pain I guess.
I am stuck. I can't get a second opinion. I can't get the testing needed to see if something is up with the nerves. I guess I just slowly starve to death in excruciating pain. In other words SSDD.
Oh my husband has the same neuropathy in his feet from his autoimmune disease. He gets pain meds and treatments.
I also have tried drugs like lyrica (don't get me started on this rant about these drugs and forcing them on pain patients when they don't work and cause major side effects)which made my POTS worse .The only thing I have been offered is a SNRI and or tramadol (also an SNRI) I can't safely take SNRI meds because of my other conditions and am on a norepinephrine blocker so....