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Couldnt take it anymore, went to see the doc... here we go again

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Posted 11/28/2012 7:23 AM (GMT 0)
I've been dealing with this stupid leg swelling, and itching and burning, ever since maybe the second or third week after surgery. Well, until today, everyone has just blown it off, and said "well, it can happen." But every week it is getting progressively worse, now to the point, putting on socks is feels like I'm scraping flesh off to the bone. My feet are so swollen (even with compression stockings) I can't get my shoes on more than half the time. I had to wear my slippers to see the doctor today.

Well, this afternoon, I just got so irritable, I just snapped, and barked something at my son when he started not wanting to eat his dinner. I instantly realized, it's time for a change of some sort. So I called my brother, and had his wife watch my son, while my mom drove me down to the doctor, of course the only place open was the er, but they were happy to help, to my surprise.

Well, the doc turned out to be the same guy from my trip a couple weeks ago, he re-did the Doppler ultrasound of my legs and stuff, this time, even higher up than before. He said he has an idea of what's going on, but doesn't have the right equipment to do everything to check it, but he said the symptoms are pretty textbook. He made a call down the hill and got me scheduled for an emg and some kind of scan to check the blood flow, and called my back surgeon's office (since he's my primary in my work comp stuff, and he said this is definitely related) and got my appointment for the 10th moved to Thursday.

Well, anyways, this ER doc said he believes it's pretty textbook complex regional pain syndrome. I'd seen that on a few peoples posts and stuff, but never really looked into it until I was waiting for my discharge paperwork. He says it's either the end of stage one, or the beginning of stage 2. He said that if the other doctors agree with the diagnosis, I'd have to start treatment (which I have no idea what that is) to try to slow it from progressing. I saw one website mentioned that PT in early stages could help, didn't see anything besides that.

Well, they sent me home with some papers that kind of outline what it is, and again with papers on post op spinal fusion care. But other than that, just an appointment for tomorrow for some tests, and an appointment with my back surgeon, which I'm gonna have to have my dad take off work to drive me to, 140 miles to his office down in LA.

Frankly, after looking at the papers, and the couple of websites, I'm just frightened! I have no idea what's in store and what's going to come of this, or if maybe that doctor was just full of hot air and wanted me out of there. Any ideas on what I might be looking forward to? Is there any light in the tunnel for this? Any ideas, suggestions, preview of coming attractions? I'd appreciate whatever knowledge you guys have on this. Thanks. Sorry for the story book here.
Posted 11/28/2012 7:58 AM (GMT 0)
Hey Matt,

I'm so sorry to hear that you are feeling so lousy :(

I'm also sorry to hear that they are thinking it's CRPS.... ugggh. It definitely can be an overwhelming diagnosis.... thankfully, we've got some members on here that are very knowledgeable on it... and I'm sure will be on here to answer your questions.... One of our mods (Laura) also has this.... but I know she's struggling right now w/ some health stuff.... but I'm sure she'll respond when she can.

All I know about it - is what I've learned from people here. That being said.... just having dealt w/ SO much of my own stuff.... just keep in mind that sometimes *Google* can be your own worst enemy (at least for me).... and that each person's journey w/ anything is unique. All that said - I absolutely think that educating yourself on all of this is a good thing.... just try to keep a healthy perspective (I know, easier said than done).

Sending prayers your way, Matt..... keep us updated, of course. --Tina
Posted 11/28/2012 8:46 AM (GMT 0)
Thanks Tina, I usually try to see something positive in anything, not really finding it right now. I know what you mean about google, I think the latest geico commercial says it all. I guess there was one positive thing tonight, I found out that there's a pain doc here in town. The ER doc says he's really good, and said that he's heard a lot of good things from his patients, and said that he's really good about making sure his patients always have their meds before they run out, and that he's very knowledgeable about many of the PM tricks, including pumps and SCS units. I'm hoping I can get a referral to him, and more importantly that work comp will cover it, I don't know why they wouldn't, since they said in their last letter that they would cover a PM that's out of network as long as they're within a 30 mile drive of my house. We'll see what happens. Gotta call the attorney in the morning now and let him know what's going on.
Posted 11/28/2012 8:54 PM (GMT 0)
2y4t-- aaah sorry about the possible diagnosis but hopefully things go well for you, ER is NOT a fun place to be.

Thats fantastic the doc gave info on primary doctor for you that will be closer to you ( i thnk it would be closer from what you wrote? )

((hugs))
Posted 11/28/2012 9:35 PM (GMT 0)
Hey all, sitting here waiting for them to finish a scan on my feet/legs. They injected me with somekind of radioactive tracer, took a set of pictures, waited like 10 minutes, and took another set. Now I'm supposed to drink a whole bunch of water and they'll be taking another set of pictures in like an hour and a half from now.

I talked to the back surgeons assistant earlier today, they feel that an EMG that the ER doc suggested last night is a total (and possibly very painful) waist of time, so I'm not getting that today. They also said that it would also be a waist of time for me to go in to the office in the valley tomorrow (thank God) and to just come in to their office that's closer to my house on Monday; they also said it would be better if a brought the results of the scans in with me, instead of hoping that they get sent in time via courier or mail. The other thing they said, is that even though the doc is my primary on my work comp, this is obviously way out of his specialty, he can refer me to other doctors, and can possibly confirm the DX, but can't treat me for it. So they're going to contact a few other doctors offices (including the PM that the ER told me about) and see who'd be willing to treat me for that, but they said I'd probably need a GP to kind of oversee everything, since it's a possibility that we might be getting a couple doctors involved here. Basically, to sum that up, the back surgeon will continue to treat me, but says they won't be my primary treating physician for my work comp case anymore.

Well, that's it on this for now. I'll catch up on this later when I know more.
Posted 11/28/2012 10:55 PM (GMT 0)
You've been busy!

I'm curious to see how this turns out. My rheumy mentioned CRPS as a possible reason for my ongoing jaw pain and swelling that has continued for 2yrs after the replacement. He's only ever seen it present somewhere in the arms or legs, but he was quick to point out I am his only patient who has had such a surgery. When researching online, I also found very little info for this part of the body. I drive down to Duke next week for another Cytoxan infusion and the dr. is trying to get me an appointment with a colleage on that same day.

It is overwhelming. I hope these tests provide your drs with answers so a treatment plan can be developed. You've been in pain for far too long.
Posted 11/29/2012 2:48 AM (GMT 0)
Finally leaving the hospital, been here all day, and I'm starving, haven't eaten a thing since last night. Got the disc and report in hand to take to the doc on Monday. There was a neuro-something who read the scans, then he finally came out to the lobby about 30 minutes ago, and took me to a separate room to talk. I'll spare you all the long conversation, but it wasn't a fun one. The report summary says "characteristic complex regional pain syndrome changes present- medical history review, and scans indicate stage II CRPS present from mid-calf through foot bilaterally."

What now? Well, besides a double-double animal style.
Posted 11/29/2012 3:34 AM (GMT 0)
I'm sorry. I wish I had some advice, but I don't. But I hate that this is happening to you.
Posted 11/29/2012 4:31 AM (GMT 0)
Matt,

I'm so sorry to hear about your recent diagnosis. I do know some about CRPS, as my issues are somewhat similar, although they do not involve my arms or legs. But yet my situation is different enough, that I don't feel that I'd be the best person to offer you any specific advice about this condition. CRPS is certainly not a pleasant condition, but when you think about it, nothing that causes chronic pain is! At least with this new potential diagnosis, your doctors may have better ideas as to how to treat you, at least in regards to your legs. I know that there are several members of our HW CP family who suffer from CRPS. Hopefully, one or more of them will come along soon, and will be able to provide you with some better advice.

I know it is tough, but just try to take things one day at a time. Sometimes that is all that you can do. You're tough, you'll get through this! And we're all here to offer you support whenever you need it! Keep on fighting!

Skeye

Post Edited (skeye) : 11/28/2012 9:36:13 PM (GMT-7)

Posted 11/29/2012 5:42 AM (GMT 0)
Thanks skye and rocckyd, I'm not really at the point of asking why me, but really just kind of feel a metaphorical kick in the chops. It's like, two days ago, I already had bad things going on, and now I'm looking at a brick wall. The doctor today said that PT/OT could help alot, and possibly slow it way down, and then he went on to say that Im kind of shafted in that I still can't start any therapy until the back surgeon says the fusion is healed enough to do so. I know they're gonna go ahead and X-ray the fusion on monday, so hopefully he gives the green light. I'm not sure where the next stop is after that, the surgeon's assistant said it could take a week or more for them to get things set up with approvals and appointments and stuff.

I called my attorney when I was at dinner, and gave him the rundown of the report, he said, if work comp accepts the DX (which he says they're getting a lot better about those kind of things) it's an automatic permanent total disability rating in their books, which means I'd get checks from them for a long time. Just have to see what happens, he said the back surgeon would have to file the DX with them after Monday, and we'd know within 2 weeks if they plan on contesting it or not.

As always, thank-you for your kind words and generous support. You are all like another family to me now, and I appreciate all of you, more than you know.
Posted 11/29/2012 6:06 AM (GMT 0)
I've been in PT since March 2010. Luckily my insurance has no cap. I was supposed to switch to Medicare in Dec but I'm staying with the plan I have now since Medicare has a cap around $1800 for the year. The PT has been the only reason why the jaw is as good as it it-which is still pretty bad. Like I said, drs feel that I have something similar to CRPS but it's an unusual location. I don't care what it's called, I just need coping skills. Hopefully PT will be as beneficial to you as it has been for me. I've become good friends with the therapists which is good. I get so incredibly frustrated cause there isn't an end in sight and they manage to boost my spirits. I'm lucky to have a great medical team and I hope you are able to find the same.

Try not to "Google" yourself into a panic. It's so easy to do. Sometimes I feel we have too much information at our fingertips. Hopefully the xray will look good and then your drs can get the ball rolling.
Posted 11/29/2012 6:12 AM (GMT 0)
I hope that you'll start feeling better very soon.
Posted 11/30/2012 3:13 PM (GMT 0)
So sorry to hear you're going thru this. I've had CRPS for 3 years and i can definitely sympathise. Im sorry to say it only gets worse from here, therapy is PT and i can tell u that it is definitely demon spawn from Satan! They try to desensetize your limbs by draggin a tissue across the area, but i never felt a tissue, in fact to ME it felt more like a cheese grater! Before you start PT, try a referral to a pain management Dr, as bad as the pain is, narcotics and some medicines like Gabapentin make it more bearable. I wish you luck and pain relief!
Posted 11/30/2012 3:20 PM (GMT 0)
I'm really sorry to read about this Matt....

The only good thing I read about CRPS is that when it's caught early...there is a great chance of knocking it into "remission" to keep the majority of the symptoms at bay.

The key is getting in with a great Dr. who understands and treats this...and not use "google" too much but there are a few good websites (.org) ones that show information and treatments for CRPS/RSD

I'm trying to remember the exact dates of your fusion...but I was allowed to start PT about 6 weeks out from mine...There wasn't much to show on the x-ray at that time since fusions can take up to a year...but my Neurosurgeon goes on just the healing process and when it's safe to do PT....

Certainly praying for you and hoping that your date went well the other night....at least a bright spot in all of this as I hope you had fun:)
Posted 11/30/2012 7:25 PM (GMT 0)
Thanks all, Atiana, thank-you for your input, if you have any more advice, I can use all I can get. Snowbunny, I actually found one of the ".org" websites last night (sorry it was 2am, I don't remember what the web address was) but it was very informative, and talked about the major differences between CP PT and PT for CRPS, and talked about how to select a physical therapist (it mentioned to ask the potential physical therapist if they use ice for inflammation on the affected areas, and said if they do, they're not familiar with CRPS) it also talked about aqua therapy, and many other things.

"Date night" is actually tonight, getting a little nervous lol, but not too bad. I'm gonna head down in a bit and get a haircut and a shave, maybe get some nice flowers too if I can afford them; I'm actually not sure what else to bring, neither one of us drinks, so Champagne or wine is out lol, though I think she might get a laugh if I bring a bottle of sparkling cider. Anyways, I have things to do, and need to take my time doing them so that I have a little energy for tonight. Reminds me of that spoon story that someone put up a link to a while back, that is so true.

Again, thanks for being here, and I'll try to stay off of google. I hope you all are doing well today.
Posted 11/30/2012 7:45 PM (GMT 0)
Matt,

I'm sorry you are dealing w/ the whole CRPS thing. Uggggh. Not what you needed for sure.

I hope *date night*, lol, goes really well.... you'll have to update us afterwards :) I like the sparkling cider idea :)

Have a good day/night.... it's raining like crazy here - are you guys getting rain down south, too? Anyway, talk to you later...

--Tina
Posted 11/30/2012 7:50 PM (GMT 0)
Ohhh...sorry I got the date night mixed up...Well then I hope you have a great time!! I think sparkling cider is actually a good idea as I like to drink that on New Years:)

And yes, from what I read about CRPS that it's very important to find a Dr. as well as Physical Therapist who specialize in this and tailor treatments specifically for you with both medication and non medicinal modalities. I kept reading that it's all about getting treatment asap after diagnosis and keeping on top of it.

At least you are doing something tonight to take your mind off of things...And it will always get you bonus points for letting her choose the movie you all watch! LOL

Keep us posted on everything.;)
Posted Yesterday 3:47 AM (GMT 0)
**sorry to repost but I just had get in on this one---I love hook ups....

I agree its always good to let her choose -unless she keeps stalling, then its better to step up-.
I think its great that you are getting 'cleaned up' being well groomed is very important (not just clean clothes)
**Make sure you have very nice clean shoes! and BRUSH your teeth!!!!!
Dont overdress for the movies. Nice stylish skinny jeans and nice shirt, or white T with ralph vest!
Please maybe rethink the flowers though...its kinda not a good idea unless you bring like a single exotic flower. but defo not red roses!!!!

Good luck hope it goes well !!!
Posted Yesterday 3:49 AM (GMT 0)
oooooh and

DONT PUT ON TO MUCH COLOGNE!!!
sorry for yellling ..its sooo grosse when anyone wheres to much!
Posted Yesterday 8:24 AM (GMT 0)
Hey all. Well, I'm home, tonight went great in almost every aspect, but boy is my back killing me, and my feet and ankles are puffed up like balloons, and hurt like crazy too. Well, I decided to ditch the flower idea, and texted her and asked if she had made plans for a dessert to go with dinner, she hadn't, so I made my family recipe peach cobbler, it was a hit (though my mom was a little upset that there isn't any left lol). She made stuffed chicken breasts with some kind of an apple and ginger stuffing, with garlic and herb potatoes and roasted corn. Mmmm mmm. She also made a homemade mac-n-cheese bake for the kids (thank God it was only for the kids, cheese and I turn into a lethal combination fast). I brought a couple movies with me, and she picked "the amazing Spiderman" out of them, apparently she's as big of a comic movie buff as me lol.

Well, the kids passed out on the couch before 9, and we went outside after the movie and lit a fire in her little fire pit, and had some hot cocoa, and seconds on the peach cobbler. Yup, definitely a good night. Only issue is, between the trip to the barber, the grocery store, cooking, and then staying out half the night, I am beyond done in. My back and legs are spasming up a storm, and my pain is a solid 8 right now, borderline 9. I'm completely exhausted, yet my brain is wide awake, I'm still kind of amped that tonight went so well.

Thanks for the tips and support. By the way, Tina, it's midnight now, and barely starting to sprinkle some rain here, been a pretty nice weather here just overcast till now. Hope you're all doing well.
Posted Yesterday 8:54 AM (GMT 0)
Oh Pink, I would look horrrrriiiibbbbllle in skinny jeans lol. I barely have a 32" waste but my thighs are enormous from climbing towers for four years, even though it's been months since I could even walk right. We had dinner and watched a movie at her place, I have a 3 y/o son and she has a 5 and a 7 y/o, and babysitting was an issue for both of us (we've been trying to set this up for months but things just kept getting in the way, especially my back). She saw me in my custom tailored New York Jones Tux at my brother's wedding in July, so she knows I clean up pretty good, so I dressed nice, but comfortable (wanted to wear my slippers lol, didn't think that would go over very well); nice jeans, a really nice white long sleeve shirt (it's got some cool stitching woven into the fabric), and a nice pair of dark flat brown shoes. Only problem was it was so cold, I had to wear my black wool pea-coat, didn't really match, but it was that or my Carhart jacket from work.
Posted Today 4:13 AM (GMT 0)
Hey Matt:

Just wanted to say I'm so happy that your date night went well. It sounds like you both got along really well and have a lot in common. Keep us update on how things go.

I'm sorry tho that your pain was so high once you got home. I'm hoping that you're feeling better tonight. I don't know a lot about CRPS, I'll try to learn more about it so that I can offer better support for you. I really am praying that you feel better and the swelling is down tonight and your pain level is much much lower than the other night.

Hugs,
Barbara
Posted Today 4:29 AM (GMT 0)
Matt, so sorry to hear of the new dx but at least you have one now and know what is going on.Most people end up under the care of a pain mgt dr to treat this. It is generally caused by trauma or surgery. I think your worker's comp icarrier is going to have the bite the bullet & accept it. Your drs should be able to tie it in to your back surgery.

Take things a day at a time or you will just get overwhelmed. Take care....Susie
Posted Today 9:17 AM (GMT 0)
Evening all, thanks for the tips shell and for your words of encouragement Barbara, it means alot. I have been paying all night and all day for such a long day yesterday. I think I got maybe an hour of sleep last night, and so far, tonight is not any better. My feet are puffed and ankles are puffed up, it's very hard to move them at all, and my toes, especially on my left foot feel like they're gonna burst from pressure, and to top it off, I think I could fry an egg on either one of them, the heat is intense. My back isn't doing much better, it's been spasming off and on for most of the day.

I took a shower earlier, felt like sticking my legs and feet in a super hot sand blaster. Shell said sand paper, I think a power grinder is closer to the way trying to use one of my son's microfiber wash cloths felt, I've been caught in powered wire wheels and grinders before, pretty close to the same feeling, only I wasn't missing a layer of flesh when I was done, wouldn't have surprised me if I was though.

I think yesterday was by far the longest that I've been on my feet in one day since the surgery, I'm wishing now that I had not been so foolish, and maybe postponed it to another day. And having my blood sugar drop last night from the peach cobbler (dumping, it's a gastric bypass thing) didn't help either, I started sweating and shaking for over an hour around 1am, it's pretty normal if I have too much sugar, but it sure isn't pleasant.

Well, on the bright side of life, my mom and step dad have offered for me and my son to stay here at their place for a while, the drama at my brother's house was beyond intolerable, and his mother-in-law was treating me and my son like pond scum, if it was just me, so what, but yell at my kid, we have problems... especially when he doesn't deserve it. Now my grandmother who lives in town is offering for us to move in with her, for a more permanent residence, I have to see what's going to happen before making that decision, she's out of town for at least 2 weeks a month, my grandfather has terrible dimensia and the only skilled nursing home that could take him is 200 miles north of here, so she spends two weeks a month up there and sees him. Personally, I'd love to be able to move in with her, she could really use even a little financial help, but right now I need physical help that she cant give.

Well I've got lots to think about tonight, and at this rate, plenty of time to do it lol. Like trying to figure out why UPS takes 5 days to get from Ohio to California, when my brother and I used to drive the same route in 53 hours. My new tablet left ohio on friday, and its not scheduled to be delivered till Thursday, lazy truck drivers lol. Just something to giggle about I guess. Well I hope everyone is having a good weekend, mine started fantastic, not so fun now lol. Sorry for blowing off some steam, I'm exhausted, and just cant get things to settle down. Take care all. And God bless.
Posted Today 9:32 AM (GMT 0)
Oh, Suzie, when I spoke to my attorney, he seemed pretty confident about getting work comp to accept it, he said the judge in our area has a pretty level head if they dont though, and that he feels we could get an emergency hearing for this if needed. What he wasn't confident about, was if they'll cover enough treatment like PT and stuff. He said I might be better off applying for medicare, and then doing a MSA with the work comp when I can. Trouble with that is, I'd like to go back to some kind of work if I can, I have another 6 months before I could apply for medicare, but I'm not ready to throw in the towel on working yet.
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