Doctors tend to speak in generalities because they seem to think that most people don’t want to know the details. But I’m a details kinda gal. I can imagine much worse than what actually happened so I like to know. Therefore, I requested the hospital to send me a copy of my “Operative Report”. (You are entitled to a copy of any or all of your medical records, but they won’t offer it…you have to know to ask.) It arrived in the mail on Saturday and was quite an eye-opener. Turns out there was quite a bit more done than I originally thought. Now I understand why each medical professional I spoke with in the hospital said something along the lines of “Wow…you’re having a lot done today”. And why the anesthesiologist said “There’s no way we can manage adequate pain control after the procedure without a nerve-block…I wouldn’t let anyone do this to me without a nerve-block” when he was trying to explain why he needed to use spinal anesthesia instead of just putting me out. Although the mystery of why I was so sick afterwards when I only had spinal anesthesia was also solved with the report. Turns out I was given a combination of spinal and general anesthesia, which would be why I can only remember bits and pieces of the surgery, mostly at the beginning and very end and why I felt so nauseous until the next morning. Five individual procedures were performed during the surgery…1. Plantar fascial release, 2. Calcaneal osteotomy, 3. One through three tarsal/metatarsal fusions, 4. First toe IP fusion and 5. Hammertoe reconstructions on toes two through four. Once everything was completed I was left with 3 pins in my toes and 1 screw in my big toe (which I was aware of) as well as 8 additional screws and 3 plates (which I was not aware of until I read the report)…..surprise!! Turns out the additional hardware is located in my heel (2 screws) and my arch (6 screws & 3 plates). So after the pins come out I won’t be free of foreign objects, the 9 screws & 3 plates are permanent. Which is fine, I don’t mind as long as I have a more normal foot…but this just shows why it’s important to request your records. Unless you’re one of those people who’d just rather not know. It also provided some vindication for me….I’d been telling my Mom and my Husband ever since I saw them after the surgery…”they put a screw into my heel, I felt a drill in my heel…it didn’t hurt but I could feel the feeling of drilling and the pressure of something pushing hard into my heel”…I don’t think they believed me. Now we know I was right, it actually did happen. Below are pics of the hardware in my “bionic” foot (as the kids call it).
According to the report, these are the type of screws and plates that were placed during surgery.
Wow, Dana,
ReplyDeleteIt looks like you had an overhaul of your foot.
Look out Airport Metal Detector! Ha! I wonder if they got those screws at the local hardware store. Ha! I am glad you are doing well! Hope this message gets through. I am having trouble with this thing. Gilbert
Yes, I intend to ask the doctor about the airport because Rex and I do like to travel and when it's just the two of us we like to fly. Once both my feet are done they'll think I'm a shoe bomber! LOL
ReplyDeleteHiya,
ReplyDeleteIm just checking in to see how your feeling and how the foot is doing? Are you able to put any weight on it yet or do you have to wait until you out of the cast? I am getting nervous about the op next Wednesday! I just want to get it over with so I can start recovering at home, im not a big fan of hospitals! Im hoping I wont have to stay in hospital too long.
xLaurax
Hi Laura! Yes, everything went well yesterday. I was a little bit chicken that it would hurt when the pins came out so I took some pain pills and I was a bit loopy yesterday so I wasn't able to get the post up. But I'm working on it now. I totally understand that you are nervous about next week...the fear of the unknown can be very scary. I know that I won't be so scared with the next foot because now I know what to expect. I only spent 1 night in the hospital and if I hadn't been so nauseous, they told me I could have gone home the same day...so hopefully you won't have to stay long either. It's always nicer to be at home. Let me know if you have any questions I can help with!
ReplyDeleteI am sitting over here just crying my eyes out after reading all your posts. This sounds so odd, I realize, but it is such a relief to find someone else who has gone through and understand what I face everyday.
ReplyDeleteI haven't been to the doctor for my feet in over 12 years (I am terrified because of all the testing and mental "trauma" i experienced from it as a child) and I'm trying to work up the courage to find a doctor to go to so I can see about possibly getting surgery to correct this as well. When I was a child, they tested me for and eventually ruled out CMT, but ruled in favor of "possible birth defect" and/or "mild cerebral palsy". They toyed with the idea of surgery scheduled only when I stopped growing (20+ years old), saying that there was a small possibility of me never being able to walk again after the surgery. I think that scared me the most. Either way, the before picture of your foot looks similar, but not identical to my feet.
Dana, did your insurance cover the procedure? Can you give me a rough estimate of about how much you paid? Did they tell you what the success rate is of this surgery? How did having pes cavus effect your pregnancy (ex: foot pain worse, couldn't walk, etc)? Has surgery changed the length of your feet (going to have to buy new shoes lol)? How soon before you will be able to walk on it fully? How long before you can have your other foot worked on?
I apologize for all the questions, I really do. Thank you so much for posting this blog. It is a Godsend.
Steph, I can empathise with the testing you went through. The testing I was put through for CMT was more like torture rather than testing. Some of it was so bad that my husband had a hard time watching. That's why I went to see an orthopedic surgeon rather than a neurologist this time. I've seen the neurologists at the Univerisity of Iowa multiple times over the years & no one ever told me surgery was an option. They were only interested in orthotics, braces and support groups. I wanted something more permanent. The key is to find a really good orthopedic surgeon who specializes in feet.
ReplyDeleteThank the Lord I have very good insurance and it covered everything, I just paid the normal 20% like I would for any other medical procedure. I'm hoping to get the second foot operated on before the end of the year (for insurance reasons) but I'm not sure if I'll make it or not. My surgeon is serious about waiting the full 6 weeks and won't let me walk on my foot until this Friday, so I'll have a better idea of how things are going to go after I've walked on the foot for a week or so. But I get to put full weight on it right away and he says there shouldn't be much discomfort involved as long as I take it easy and don't try to do too much too fast.
My surgeon didn't talk about success rates but when I asked about problems it could lead to in the future he said none. The unusual thing about my surgery was that I had so much done all at once. Normally they would have broken it up into 2 surgeries per foot but I wanted to get it over with quicker and he agreed.
As far as being pregnant, the CMT caused more trouble than the Pes Cavus. The bigger I got, the more challenging it was to carry all that weight around without tiring out, especially when climbing stairs. Although Pes Cavus does cause balance problems and in the third trimester your belly gets large enough to through off your center of gravity which just means you need to be even more careful with your balance. My foot pain was no worse while pregnant but of course you aren't supposed to be walking or standing for long periods of time when your expecting anyway. Thankfully I've never had an issue with not being able to walk. Although, years ago when I worked retail and had to be on my feet for a full shift, I would come home and my feet would hurt so terribly that I would limp badly around the house until the next morning when my feet would finally recover.
My post op foot does look about 3/4 of an inch longer now that the toes are straight and the arch is lower so I may need to buy new shoes. No big deal though since I only own 4 pairs. As you know, it's very difficult to find shoes that fit when you have feet like this so I own 1 pair of tennis shoes, 1 pair of Crocs, 1 pair of dress shoes and 1 pair of snow boots. I'm really hoping I can wear all the cute fashionable shoes once this is all over. And judging by the appearance of my foot at this point, I think I'm gonna be wearing some very stylish shoes soon! LOL
Happy to help anyway I can. Let me know if you have any other questions.
I just want to say a big thank you to Dana for the kind message wishing me luck for tomorrow! I am feeling really positive about it after reading how well your doing! I will of course let you know how I am doing once im out of hospital!
ReplyDeleteI also want to say hi to Steph. I assume you stumbled across this blog as I did after finding very little information about Pes Cavus on the internet. I also thought I was the only person in the world suffering with this problem with my feet and now I have found 2 other people who know how hard it is. I think my problem is genetic, I have displaced hips as well and have now had 2 hip operations because of that. My Dad also has bone and joint problems, as did his Grandad. My brother also has a high arch which causes him to walk on the sides of his feet, but luckily he has nowhere near the problems I have.
I have cried a lot over the years at getting frustrated about not being able to find shoes that fit, after being bullied and teased for having odd looking feet and for having to put up with awful aches and pains. I am 28 and I have suffered all this time not realising anything could be done. When I saw a doctor about my feet when I was young they said surgery isn't an option and I would be in a wheelchair, have to learn to walk again and all in all that it could take at least a year to recover! I had therefore always ruled out surgery as an option until I finally felt I couldn't take it any longer. The pain has just got so bad I struggle to walk most of the time and I try to avoid anything that involves walking too much or being on my feet for a long time. I love going to the gym, even though I can't do as much as I would like, i've never been able to run properly, even at school and I can't keep my balance on a treadmill at all. But I have always managed cycling and the cross trainer that sort of thing to keep fit, but in recent years the more active I have been the worse the pain I get in my feet. I just decided I couldn't take it anymore and I wanted a better quality of life than I have at the moment.
I was so surprised when I went to see the foot surgeon about my feet and found it that it is an option to have my feet fixed and the recovery isn't as bad as I believed. I finally feel now that there is some hope for me. I have always been jealous of women that can wear any shoes they like, where as I, as Dana has also said, have a few pairs of shoes that I find comfortable and it takes a lot of searching and trying on to find these shoes. They are all flat as I can't wear any sort of heel at all, they just cause too much pain and my shoes wear away very quickly so I have to keep buying shoes more than most people would. But I am hoping that maybe I can finally fit into a normal pair of shoes. That would be fantastic!
Fingers crosses tomorrow goes ok!!!
Laura
x
Hiya,
ReplyDeleteSorry for the delay in getting back on here but the last few days have been little rough. I had surgery on my right foot on Wednesday lunch time. The sugery went fine and I was only in hospital until Thursday afternoon. I felt ok in hospital and I was surprised by how well I was doing. By Thursday evening though I was feeling very ill, I was very spaced out, had a banging headache, I couldn't eat and I was being sick. I also starting to get a lot of pain in my foot, my foot and ankle were aching a lot and I was getting shooting pains as well. I had a bad night Thursday night and couldn't sleep at all due to the pain so by Friday morning I was exhausted. We contacted by doctor who came to the house on Friday and afternoon and prescribed me with a stronger medication than I was on and some tablets that would stop me being sick. I was feeling a little better yesterday but still a little tired and I had a really bad headache last night so I had an early night.
Today I am feeling better though, so I am hoping I will just start getting better each day. The new tablets I am on don't make me as sick or spaced out which is good. They really keep the pain away, I can tell when I am due my next tablets as my foot starts aching quite badly but as soon as the tablets kick in i'm fine. My foot has been very swollen since I came out and I was getting a bit worried about it but when the doctor came she advised me that it is normal for it to swell a lot, as the surgeon has done a lot of work on my foot. I feel like the swelling has gone down slightly today and it doesn't feel as hot as it did.
I currently have a boot on my foot, which is bandaged on my foot. When I go to the hospital in 2 weeks they will be putting my foot in plaster, apparently they have have to wait for the swelling to go down before they can put it in plaster. I am getting used to my foot being out of action now, it is a struggle trying to sleep and wash and generally getting about, but as I said I am getting more used to it, though every now and then I bang my toes on things because I not used to my foot being so big.
It feels very strange still because I can't feel my foot at all, the boot and bandaging is so tight I can't move it and it feels very numb in there, which is weird. I do keep waking up in the night with terrible cramp in my ankle and I have to sit on the edge of my bed or stand up to stretch it out. Did you have this same problem Dana? I am assuming I am getting cramp because of the lack of circulation in my foot, which would be expected as it is bound so tightly, I just wondered if this will pass.
So all in all the first few days have been pretty bad, but now I know what to expect when I go for my other foot I will make sure they put me on the right medication this time and the recovery should be a lot better.
How are you doing now Dana?
Laura
x
Sorry it took me so long to get back to you. I'm glad to hear your problems were short lived...can't believe the Dr came to your house! That's sweet! I also had issues with the meds making me nauseous and they had to give me another med to counter-act the nausea. I never had cramps in my ankle but I did have bad pains in my toes while I was in bed and I'd have to stand up or hang my foot off the bed to get relief. I'm walking (or rather limping) now. By the end of the day I'm in pain and very tired so it's hard to find the energy to do much when I get home from work. I'll post more later. Glad to hear you're doing well!!!
ReplyDeleteHiya, it's nice to know I wasn't alone in how I was feeling those first few days. I had to change to stronger meds and I am on other med's like you to stop me feeling sick. I am sleeping better now but the first few nights I was the same as you, I woke up regularly through the night and had to sit hanging my leg over the bed to get relief from the pain in my foot. I found that by elevating my foot to help the swelling I couldnt leave it up for too long as it would start to ache and throb, so I was constantly having to move around to ease the pain. It was very frustrating as all I wanted to do was sleep, but luckily that has passed now, even the cramps have eased off a bit!
ReplyDeleteKeep me upated on how your doing and let me know what the doctor says on Friday! I am glad to see youre back at work so quickly! I would think it is understandable that you get tired easily. I found that after my hip replacement last year, when I went back to work 3 months later I was exhausted by the end of the day. i would come home and have a nap every day. I think it takes a while after any operation to get back to a normal routine!
Laura
x
I thought it was just me but it's interesting that you had the same issues with having to hang your foot down to get relief. When I tried to explain it to the Dr. he said he'd never heard of anything like that. At least I know I wasn't crazy!
ReplyDeleteYes, it is pretty exhausting to go from laying around the house in your jammies to getting up and going to work everyday and hurrying around to try to get caught back up. I'm trying not to do too much too soon...I want to avoid any setbacks.
Hello all! I'm new to your blog, but WOW do I appreciate it! I'm 24, female with CMT and have the high arches/hammer toes similar to yours, ShadyLady. I live in Chicago so there is lots of walking and recently took a long shopping trip in the wrong shoes and have been paying for it for weeks in the form of a severely swollen/blistered toe. This prompted me to seriously consider surgery, which I've been avoiding. I went to the podiatrist, who recommended surgery and have a consultation appointment scheduled with an orthopedic surgeon. I thought I would be excited at the thought of possiblyl having "normal" feet with surgery--but I realized it's pretty scary. I work at home right now with pretty good insurance so I feel that if I'm going to have this surgery, now may be a great time. Anyway, I am REALLY excited to have come across this blog and please please keep posting updates on how your doing! It sounds good so far :)
ReplyDeleteAlso, do you (or did you prior to your surgery) do foot/ankle strengthening exercises? I worry about having a surgery like this but my muscles will keep wasting away and it will do no good.
thanks again, wishing everyone well!
Anna
Welcome Anna! I live in Iowa so we're practically neighbors! LOL
ReplyDeleteYes, surgery is a scary thing but after a while I just got to the point that I couldn't take it anymore. I just wanted to be able to wear normal shoes without having my toes bleed or having terrible foot pain. So far I'm very happy with the results.
I did take water aerobics at the YMCA 4 days a week prior to my surgery but it wasn't really intended as an ankle strenghing exercise. I was looking for something that wouldn't cause foot/ankle pain and that would help me to lose weight and tone up...water aerobics worked great. I lost of total of 60 pounds last year. I was sure glad I wasn't carrying that extra weight around after the surgery! I plan to start up again after I'm all healed up.
The key is to pick a good surgeon...be sure that you find an orthopedic surgeon who specializes in feet.
Good luck!!
Dana
Hi my names Katie and I'm 15 and I've been diagnosed with Pes Cavus for about 4 years now. I live in Michigan and I currently see a neurologist who works for Cleveland Clinic about 2 1/2 hours away from my house. I have done ever test they have wanted me to do including an Emg, nerve biopsy, 3 mri's and like 20 blood tests! lol I'm not quite sure that's all the testing iv'e had but since the testing has begun iv'e been put to sleep 3 times. its been a very traumatic past few years because i'm am terrified of needles. Anyways i have an appointment scheduled for the 26th of October to meet with my Orthopedic Surgeon again to see if i can have the same surgery done as you guys have. In the next year i will be getting my license and with having my permit to drive i'm having a very difficult time driving. My feet hurt to bad. It is beginning to effect my everyday life more and more. I guess my question is how do i go about asking my Orthopedic surgeon if I am eligible for this surgery? Any suggestion, i would really appreciate it!
ReplyDeleteHi Katie,
DeleteI've also experienced many of those same tests, they aren't fun. :0(
I'm sorry to hear that you've been having trouble with your feet. I always say, if your feet hurt, everything hurts.
As far as advice on what to ask your surgeon, I would make a list of all your questions and take them with you to make sure you don't forget anything. Don't be afraid to ask him whatever you want, remember that he works for you!
You may want to write down the names of my procedures from my blog & ask if any of those procedures will help you. Also, you can refer him to my blog for detailed info on my procedures.
Everyone's different, but hopefully he can come up with something to help you lead a more productive, painfree life.
I wish you good luck! Let me know if you have any other questions,
Dana