To Sharon WPosted by Marty on 9/16/03 at 11:20 (130209)
Hi Sharon ..... it's been a while.
When you had TTS release how long did you wait till you had the other done?
It's been 7 months now and I'm far from 100% but still making gains weekly. I'm very hopeful that I will recover completely. Most of my problem is still in the ball of my foot. The areas where I had the TTS and PF releases are healing well. I do have pain in the pf incision spot but other then that not much. Still the ball area is swollen and I have shooting pains if I put all my weight on in. (Heel to toe) gate not possible yet. BUT it's getting better sloooowly.
How are you doing?
Re: To Sharon WSharon W on 9/16/03 at 14:21 (130232)
Nope, I never had to have the second TTS release, only one foot was really bad and the other seemed to get better with all those 'conventional treatments'... I guess I was pretty lucky, huh?
Glad to hear you're 'still making gains weekly'!! The time may come when you realize, you haven't noticed any improvement for quite a while, and you think, 'OK, this is as much better as it will ever get.' Well, it probably isn't, at least, not quite... At the end, that last little bit of improvement seems like it takes a lo-o-ng time...! So just hang in there, Marty, and keep a firm grip on that positive attitude of yours... It will help you get through all this.
I don't know what to tell you about the ball of your foot. Your doc said it isn't a neuroma, just a slow-healing nerve -- and I assume you've gotten a second opinion on that (you're too smart not to have) -- so I figure it's just a matter of being patient and having faith.
Guess what, Marty? My nephew was made Bishop a couple of weeks ago!
Re: To Sharon WKathy G on 9/16/03 at 16:38 (130256)
In the Catholic Church, Sharon, or the Episcopal? I think they are the only ones who have Bishops. You should be very proud of him. What an accomplishment! All churches, no matter what denomination, need good, devoted people. And if he's related to you, I know he must be good and devoted!
Sorry about butting in!
Re: To Sharon WSharon W on 9/16/03 at 16:53 (130261)
Nope, the Mormon church, they have bishops too.
And yes, I'm VERY proud of my nephew!! He certainly doesn't get it from me! -- I am no longer active in the church, haven't been since adulthood) -- but you are correct that my nephew is a good and devoted man. He is also very smart, with a special talent for relating to young people -- a music teacher. (He recently got his masters' degree in education administration, and was going to work on his doctorate, but this will slow things down a bit I'm afraid...)
Re: To Sharon Wmarie on 9/16/03 at 20:00 (130287)
So nice to hear that you are upbeat and improving. It may be slow but just hang in there.
Have you heard from your youngest son. Didn't you say he left to go on a mission. As I remember parents can only talk to their kids twice a year. Can you email?
Re: To Sharon Wmarie on 9/16/03 at 20:06 (130288)
You should be very proud of your nephew. That's quite an accomplishment.
Every time I tell kids that I used to live in SLC Utah the first question they ask me is 'Are you a Morman?' The next is 'Did you know any Mormans?' They're so funny...I always respond 'I lived in SLC Utah. What do you think?'
Marty and or Sharon
Did you go on a mission for the church? And if so where did you go and what did you do?
Re: To Sharon WKathy G on 9/17/03 at 08:49 (130319)
Oh, I forgot about the Mormon Church having Bishops! Well, he sounds like an amazing person and you should be very proud of him! We have Mormons who come to our town and they stay with a few families who live in our neighborhood. I can always spot them because they guys are wearing jackets. And they are so nice and friendly!
This summer, two came by and I told them that I actually had a Book about Mormons that I had gotten from a couple of girls a few years ago and that while I admired their convictions, I was happy just the way I was. I said that I didn't want to be rude but I was busy putting up newly ironed curtains and had to get back to them before they wrinkled. They actually asked me if I wanted a hand! I nearly fell over! Not many young people would have even considered asking!
Re: To Sharon WSharon W on 9/17/03 at 09:51 (130324)
I'm sure they were genuinely delighted that you were polite to them. Many people would have just slammed the door in their faces...
And yes, my nephew went through that. (They say it 'builds character'.)
When I lived in Chile I would see them on foot, and offer them a ride in my BMW... I could tell that they were really surprised! I didn't tell them my background, though.
Re: MarieMarty on 9/18/03 at 13:57 (130456)
Sorry I haven't got back to the sight since I posted by things have been really crazy.
Yes my youngest son is on a mission and the only contact we have with him right now is snail mail. He might have email later, we don't know. He's good about writing every week. We can't call him at all and he can only call at Christmas. As you know it really takes a lot from these kids to put 2 years aside and go out at 19 and serve others. My second son was so beat when he came home, it took a full year for him to recover. He really pushes himself in everything he does though. LOL
Boy people here are so nice and remember so much. You amaze me Marie.
Thanks so much
Re: To Sharon WMarty on 9/18/03 at 14:25 (130460)
Sorry about taking so long to read your prompt response.
Oh wow Bishop! That is a really big big job. You know they receive no money or compensation at all for the service. On the average they spend 30 to 40 hours a week. As you know they are 'called' to do it which means they don't seek the position at all. They are just asked to do it. If you get a chance to talk to him tell him you know a 'Ward Executive Secretary'.... (me), he'll know what it means. LOL I hope I'm seeming pushy at all here but I don't know if you believe in our religion but if so then it does bring some comfort to you to know you will see the sister you lost recently again. ok enough of that. hee hee
You know I'm kind of wondering the same thing with my 'other foot'. Seems to be doing better too. Weird?. I think it's only going to be time however and I don't know if I want to wait till it's really bad. Takes so long to recover and you run a chance of permanent nerve damage.
No neuroma in the ball just really damaged nerves that were pretty much dead when the nerve was pinched and now released WOW!! waking up big time. Getting better though. Wooooosh :-)
I'm patiently waiting for the time when I can ask myself 'hmmmmm is this it, am I going to make more progress?' I know that day will come and I know I will make more progress from that point but it may come months later and then one day I will heal more. Weird isn't it all?
Thanks so much Sharon, your great! What a memory to remember so much about me.
Re: To Sharon WMarty on 9/18/03 at 14:31 (130462)
They got the right man if he has a talent with young adults and kids. that's will be his biggest job.
Re: To Sharon WMarty on 9/18/03 at 14:33 (130464)
Where did you nephew go on his mission?
Re: To Sharon WSharon W on 9/18/03 at 23:06 (130494)
Heh heh heh... I think I know what a 'ward executive secretary' is too... It's lots of work!
It's your call (and your doctor's) but I don't think I would have the other foot done as long as I felt it seemed to be doing better without surgery. Mine 'other foot' really DID get better on its own... no Tinel's Sign anymore, even. (I do have neuropathy on both sides but that is different.)
Actually I have a TERRIBLE memory -- Neurontin, you know! -- but I do have a soft spot for Mormons, since there are some people I love who fit that description. :)
Good luck to you, Marty!
Re: To Sharon WMarty on 9/19/03 at 10:17 (130522)
Hmmmm, I think you have a soft spot for most people Sharon that is evident for what you do here on this board. Hey aren't you off neurontin now? Seems like your doctor put you on something different, if so how's it working out?
Re: To Sharon WSharon W on 9/19/03 at 10:39 (130524)
Nope, Marty, I've kind of gotten stuck on that one -- long story -- I'm halfway in between Neurontin and Topamax and my doc doesn't know what to do. She got cold feet, actually...
I'm still only taking 50mg of it but so far the Topamax doesn't seem to be causing any more brain fog than the Neurontin already was. And I THINK it helps with the clumsiness and movement problems in my hands... it's hard to be sure because it's such a small dose. What it DOESN'T do at this dosage, unfortunately, is seem to help control PAIN... Sigh.
How are you doing on pain, Marty?
Re: Sharon and Martymarie on 9/19/03 at 21:52 (130574)
Oh Sharon, I apologize for butting in, but I was hoping that the Topamax was helping you. I just hate to think you might be in any pain or discomfort. Please keep us up to date, you mean alot to us all on this board. Why do you think your doctor has gotten cold feet?
P.S. Marty, let us know how you are doing...are you in any pain? I'm so glad to know that you have had a suppotive work environment...that really helps.
best wishes to you both as you're both so dear to my heart.
Re: Sharon and MartySharon W on 9/19/03 at 23:17 (130579)
It's not meant to be a 'private' conversation or anything, it's just that Marty and I both were investigating this PN thing at about the same time. (Of course I guess his problem, as it turns out, was 'just' a nasty case of TTS & PF after all, whereas in my case once the TTS got better it became possible to detect that I was developing PN... Ugh.)
Thanks for your concern, Marie, it's really sweet of you!
Re: To Sharon WMarty on 9/20/03 at 22:27 (130604)
Hmmmm sorry to hear about your pn troubs Sharon – I hope you get things resolved with your doctor.
I'm doing pretty good with pain. My current level is about 3 most of the time. The burning is anywhere from a 3 to 6 depending how long I have my shoes on. I can't wear them from more the 10 minutes unless I'm totally into something that keeps my mind off it. Urggggg. I'm on 2400 mg of nuerontin and I take 1000mg of ibuprophen 3 times a day. I really hate being on the nuerontin, I get brain fog real bad and my ears ring really loud if I miss taking it by like 2 hours. Sheesh my wife told my that I'm not myself at all on the stuff. I'm so distant but one good thing in I sleep well now and that's something I use to have troubles with.
Re: To Sharon WSharon W on 9/20/03 at 23:47 (130607)
Mmm. I've had the ringing in my ears too... and I am pretty fed up with brain fog!! But I may not have much choice except to go back to it. (Unfortunately.) It's not like there are a lot of good choices for medicines with chronic nerve pain. And I'm really not into taking narcotics if I can help it; I hate the way narcotic painkillers make me feel.
1000mg of ibuprofen 3 times a day, though?? That seems like a lot of ibuprofen... are you having any stomach problems?? (I noticed that new OTC Prilosec is out, if your doctor says its OK maybe you could take both things TOGETHER...)
Personally, I can't handle taking ibuprofen at all. I take Vioxx once a day and if I need something more I just take a couple of extra strength Tylenol. I try not to do that more than twice a day, though, because I've read more than 2000mg/day of acetaminophen per day is hard on the liver. Tylenol doesn't really help that much, but I think it does help a little bit; it may bring down the pain from 4 to 3, something like that. Ice doesn't seem to help me anymore; in fact, I think it makes things worse. If pain gets up to 5 I will try to lie down with my feet up on my wedge pillow for a while; that actually seems to help more than anything. My pain level is usually below 5 though; it typically only gets to 5 when I've been on my feet or I've had to drive for a couple of hours straight. So I really shouldn't complain -- I know that a lot of people have it a whole lot worse.
Nice 'chatting' with you, Marty!
Re: To Sharon WMarty on 9/22/03 at 16:59 (130708)
Wow Sharon a pain level of 5 is getting pretty bad in my opinion. Is all of you pain pn? Where is your pain mainly?
Yes I do agree that 1000mg of Ibupropfen is bad. I do always eat before I take it and I drink allot of water. So far this day I have only had to take it in the morning. If I'm on my feet much I have to take it. It doesn't bother my stomach at all so I'm fortunate there. If the pain is real bad I will take Tylenol but I have always tried not to take it so I wont get use to it. Ice makes it worse for you, that sucks. At this point I'm hoping that I have a real bad case of TTS/PF and that it's not pn. As you know from reading the posts on the pn site many have had TTS/PF release with not improvement. Only time will tell and I'm positive I will get better!
Do you wear shoes when you drive? There's no way I can. Without shoes I can drive for 2 of 3 hours and with them on, 5 minutes.
Nice chatting with you too Sharon,
Re: To Sharon WSharon W on 9/22/03 at 21:25 (130747)
I HAVE to wear shoes when I drive -- and I mean real shoes, too, not my Birk sandals. Otherwise I get terrible cramping in my shin(s) after a while, and I have to pull off the road. (The right is worse than the left, but it happens on both sides. I don't know why and no doc has been able to explain it, but it happens...) And I have the same problem when I walk for very long.
But I do agree with you about shoes. I'm supposed to wear my running shoes with the orthotics all the time but I rarely do around the house anymore, because my feet have gotten a whole lot more sensitive to the pressure of the shoes. (Like you, wearing shoes makes my feet BURN!!) I'm only wearing my Birks except when I know that I'll be driving for more than half an hour, or I'll be doing quite a bit of walking.
Yeah, it really BITES about not being able to use ice anymore! But, it's like ice aggravates the nerves, excites them or something -- I don't know. Ice used to be my best friend when my feet hurt, so it's a sad thing...
My pain actually ISN'T that bad, only 2 or 3 most of the time (although it may get up to 4 in the evening) -- it only gets up to 5 occasionally. The thing is, it was better when I was taking 1800mg/day of Neurontin instead of 1200mg. That 50mg of Topamax is supposed to be helping to 'take up the slack' but it really ISN'T... I think it's just because I'm not taking enough to have any effect, but my doc got freaked out I guess and doesn't want to deal with it anymore.
You asked WHERE my pain is... It's still worst in my arches and bottoms of my feet, outside part of the balls of my feet especially. But the truth is I do also get it on the tops of my feet too now and in other areas that don't have much to do with TTS. (Like my hands, for example...)
Where do you get your pain these days, is it ONLY in the ball of your foot, or do you still have heel and/or arch pain too??
Re: To Sharon WMarty on 9/23/03 at 08:59 (130789)
The pain is much better even though I have only had one foot done. I think it's mainly because I was forced to be off my feet after I had the left foot done and that it will be just a matter of time before it will get bad again once my activity level picks up. Also the right isn't as bad as the left was so the pain is lessened.
The burning is just as bad as it ever was maybe worse, shoes .... no way most of the day! My burning like you is in the arch area along as the top of my feet. If I have shoes and sometimes even socks the burning is everywhere. To be honest its pretty bad and I have no idea if it will get better. Right now I just trying to get over the surgery completely (ball area problem) and then I will see if the burning has subsided at all. Other then that I just have some burning up my legs to my knees but not to bad.
Does topamax help for burning? Man I really don't want to take any more PILLS !!!!
Re: To Sharon WSharon W on 9/23/03 at 11:57 (130803)
I haven't noticed Topamax helping with the burning. I notice that Topamax, even at this low dose I am taking, seems to help a bit with the muscle twitching and cramping, and since I've been taking it I haven't had that 'quivering' feeling in my muscles hardly at all. (I don't know if any of that means anything to you though since it is probably PN stuff...) I know someone who works in ER who says that they use Topamax sometimes for the cramps and seizures that drunks get when they are detoxing from alcohol intoxication. Makes sense to me, Topamax seems to work really fast for stuff like that...
You should post to Bev about Topamax, she's been taking it for quite a while now and is taking a lot more of it than I am. She's had very good luck with it, apparently...
Hang in there, Marty!
Re: To Sharon WMarty on 9/23/03 at 12:55 (130805)
The tops of my feet are really screaming today ! RRRGGGGG
More drugs ...... man i just don't want too. I hate it!!! I'm going to tuff it out for a while and see if the surgery does the trick. Hope so.
Re: To Sharon WSharon W on 9/23/03 at 13:30 (130806)
I still think you have a lot of healing left to go, before you stop getting better.
Re: To Sharon WBevN. on 9/23/03 at 14:34 (130810)
As Sharon says I take Topamax for my PN burning pain and it has been a great help to me. I guess some meds work differently for different people. I had 'SEVERE' burning in both feet with my PN and the 100mg. of Topamax at bedtime really did help. Then during the day when the burning starts again I take the Ultram . A few times I have had to take Topamax during the day (lower dose) when the burning became too bad though. I also have the Lidoderm patches to wear now for the pain and they are great and I finally sleep like a baby now :) Bev
Re: To Sharon Wmarie on 9/23/03 at 15:28 (130819)
Hang in there Marty! It's been a tough day for me too. My calves are twitching and I can't stand for very long. I think the rainy weather has flared things up a bit. It's just so darn frustrating. I really want to go to the OAEA workshops and conferences this year. There's alot of walking involved so I hope this doesn't last long.
take care all!
Bev, it's nice to know that you are sleeping well. Hope things are looking up for you.
Re: To Sharon WMarty on 9/24/03 at 12:59 (130886)
thanks for the information. man I'm a bit bummed that I might have to take more meds. the burning yesterday and today has been really bad. it has been burning in both legs as well as my feet. it just started up just like that. I haven't had any in my legs for months. I wonder if it's something I'm eating?
I have tried ultram, it did nothing for at all. I don't want to go to another nueralogist!!
Re: To Sharon WMarty on 9/24/03 at 13:03 (130888)
thanks marie, it's real bad today. burning and hot type of pain in my legs.
man sorry to hear your having a bad day too. hope you can go to the OAWE !
Re: To Sharon WSharon W on 9/24/03 at 15:41 (130910)
BOY do I know how you feel about THAT!!!!! I have to go see a neurologist tomorrow and I would rather have a root canal done...
Re: To Sharon WMarty on 9/25/03 at 09:09 (130971)
Is the a new neuroIs this a new neurologist of do you have to go to that jerk again?
Good luck Sharon
Re: To Sharon WSharon W on 9/25/03 at 09:37 (130973)
The neuro I will see this afternoon is partners with the jerk who 'examined' me without even having me take off my boots(1) and then wrote in his report that I had 'refused further treatment at this time' when really HE was the one who blew me off with, 'Come back when it gets WORSE...'
Ugh!!! I do NOT like neurologists!!!