Guest guest Posted November 11, 2003 Report Share Posted November 11, 2003 Beth - Keep us posted. Hope all goes well. barbara Saw the doc, he didn't think my meds have anything to do with the bleeding and he was concerned so had blood drawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2003 Report Share Posted November 14, 2003 Well finally have apt with urologist for next Thurs, soonest one I could get, nurse tried three different urologists, first could not see me til Dec. 19!! Bleeding is less often, but still occurring, but sonograms of bladder and kidneys looked ok so am not thought to be "urgent". So I get to sit and wait almost another week. If it gets worse between now and then I WILL go to the ER! beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2003 Report Share Posted November 14, 2003 Well finally have apt with urologist for next Thurs, soonest one I could get, nurse tried Beth, Well good, I'm glad they are going to take a look--but wish it could be sooner! Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2003 Report Share Posted November 15, 2003 Glad you finally got an appt. Wishing you luck! Barbara: Well finally have apt with urologist for next Thurs, soonest one I could get, nurse tried Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2003 Report Share Posted November 15, 2003 YEAH, SO GLAD for you please lets us know as soon as you can what happens, we will be thinking of you. s Momma JoAnn Re: Beth Glad you finally got an appt. Wishing you luck! Barbara: Well finally have apt with urologist for next Thurs, soonest one I could get, nurse tried Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2003 Report Share Posted November 15, 2003 Has anyone here had unusual bleeding due to meds? I am thinking that is what is happening since culture was negative and bladder and kidney scans were fine. Am betting on the Fosamax as I know so many have stomach problems with it. But could be who knows what! Will sleep better knowing for sure what it is, it is kinda stressing me out! Am flared up in a major way due to the cold weather. Has been in 20's at night and low 40's during the day with major wind gusts. My CRPS hand is frozen all the time, not just occasionally. Guess it is time to wear one glove again, I call it my look LOL! Even with the Oxycontin pn is abt 6 or higher, my shoulders and neck are so tight! We are going to do another MRI to look at the brachial plexus and look for the nerve damage and compression, had another one when the mess started in Feb, but it was done in an open MRI and films were very bad. Am anxious to get that done to see what is going on. Had an EKG this wk, neuro wanted it done cause I have been having chest wall burning in the evenings. I think this is due to the TOS, the nerves are compressed and I have read other TOSers posts that have had this too. Happens fairly often in the evening, early or late evening, and doesn't matter what I have had to eat or drink. Can be very pnful and causes shortness of breath, lasts 20 minutes to an hr or more. I don't think it is the CRPS. Have also noticed I am clenching teeth a lot and now have some pn in the TMJ joint, so do NOT want to get that going! Oh, EKG was fine, so no worries there. Am really wanting to get this bleeding figured out, it is subsiding some, but the vag area is very irritated. One thing I wondered, don't think it is the case, and sure hope not, but cd this be CRPS spread to the internal organs? Can someone who has experienced bladder CRPS explain how that feels and what occurs? Don't have any major pain, just irritation, and the bleeding. thanks all for the good wishes, will keep you posted! beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2003 Report Share Posted November 15, 2003 Beth wonder how the oxycontin makes you feel? I just was a zombie on it but took ALOT. And about the vag problems, that could be irritation from urine being strong and irritating the area and there are over the counter meds you can put on to take away the irritation. Take care my friend and so glad your going to a urologist. Just don't let him or her dismiss you. Get an answer, maybe if you take someone with you will help. I helps me to have my husband. WIll be waiting to here results. s Momma JoAnn Re: Beth Even with the Oxycontin pn is abt 6 or higher, my shoulders and neck are so tight! We are going to do another MRI to look at the brachial plexus and look for the nerve damage and compression, had another one when the mess started in Feb, but it was done in an open MRI and films were very bad. Am anxious to get that done to see what is going on. Am really wanting to get this bleeding figured out, it is subsiding some, but the vag area is very irritated. One thing I wondered, don't think it is the case, and sure hope not, but cd this be CRPS spread to the internal organs? Can someone who has experienced bladder CRPS explain how that feels and what occurs? Don't have any major pain, just irritation, and the bleeding. thanks all for the good wishes, will keep you posted! beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2003 Report Share Posted November 15, 2003 , I have very soft gloves, ultrafleece, and they are roomy, not tight. So far I have been able to tolerate them, this will be my first full winter season with this, so am in for some adjustments I'm sure. Right now I am wishing I had lots of very soft sweaters with zippers as it is hard to get things off and on with my bad arm, and most of mine are too tight too wear, can't do that, the extra weight hasn't helped either, plus I have the soft brace on the shoulder. One of the most pathetic things with this stuff, I even have pain just pulling my pants up and down, isn't that just the saddest most pitiful thing? beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 Beth, I did forget to mention one thing.... In Feb, when I had Petey, I had to have him by C-section.... Luckily, the anesteologist that I had knew what RSD was and he did do the block at the same time I had the epidural and he also constantly kept asking me if I felt any pain or any thing else. Luckily, where they did the cutting and all, the RSD did not spread any worse due to him being totally alert and careful. But......it did spread into my shoulders....mainly my left one.....and I was telling the guy exactly what was happening as it was happening.....thru the tears and pain that I was going thru at the time. What had happened though, was a year after I was originally injured, I had tripped and fell and rammed my left shoulder very hard into a door frame....hard enough that my friend I was with heard my shoulder hit the wood over the screaming and yelling of 50 kids in a movie theater!! She said that she really thought that I broke either my shoulder or collar bone.....that is how hard I hit. Considering I live in a small area, this movie theater can barely seat 75 people...and that night, every seat was filled up. It was the very first Harry Potter Movie....and it was the Opening Night of it... So, the injury had already been done....the C-section just triggered the RSD. Otherwise......It wouldn't of spread at all. So, in my honest opinion.....now that I've had even more time to think about it...........Going with the blocks would definately be the safest way to go......cause unless you've injured yourself and the RSD isn't there by now, the blocks will definately keep it from spreading!!! One more thing......they won't do a pump or SCS usually until you go thru their Psychologist testing, to make sure that you are mentally prepared to handle having one......and then after that, they'll do the trial.....and then your body might not even agree to having it in ya. So....there are so many factors there that is completely out of your hands that you ain't gonna have a choice in no matter what! And like Babs said.....having the nerves cut is considered barbaric in the US anymore to where there are very very few that will even mention it, let alone do it. And, if you did have it done....anywhere from 3 months to 5 years down the road, those nerves can grow back and the pain can be 100x's worse........and if you are having problems controling the pain now....what would you do if the pain was that much stronger then????? Believe me.....I know that our pain levels aren't alike....but, considering I've got a migraine from hell right now that I wish the Devil would take for me right now......I'd definately go the safest route which sounds like the blocks, cause you know that there is A LOT more research done on those than there are on cutting the nerves..... Tonia -------Original Message------- Hi Beth, Boy do you ever have a hard decision. I had a sympathectomy about 22 years ago and let me tell you it does not work. The nerves grow back together and I ended up in worse shape. And Dr. Schwartzman was the dr I was going to at the time. He is a very caring dr and I respect him so much for what he did for me.. But never would I ever tell someone to get a sympathectomy done. I did not even think any drs were doing them anymore. I have heard many people have surgeries of many types with RSD.. They just have blocks done before and after the surgery. I can't tell you what to do, but I can tell you what I have been through. About 5 years after I had my sympathectomy done a dr called me that was at the same hospital that I was at to get it done. He asked me how the sympathectomy worked for me and told me then that there were not many people at all who had them done that had good results and long lasting results from them. It is just not worth it. Not any more. Let me know what Dr. Schwartzman thinks about it though. I would be anxious to learn of his opinion now. He is one great dr and at the time it was the thing being done for people with RSD. Too bad the nerves grew back. It only took three months for the nerves to grow back together and the pain was way off the charts when they did and in many more places. Good luck with your decision. Take care Hugs,babs ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 Hi Beth, Good luck with your surgery. I hope everything turns out just fine. I will be saying some prayers for you till then. Take care and have a good night. Hugs, babs ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2004 Report Share Posted February 10, 2004 Beth, It must be very difficult for your little ones, and I agree with all the suggestions made. Sometimes, it is hard for young children to express their feelings in a way that makes them feel better. It sounds like you're doing everything you can to help her through this tough time. My thoughts and prayers are with you and yours. Hugs, Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2004 Report Share Posted February 10, 2004 Beth - Keep reassuring your little one. Surgery is a difficult concept for kids that age to grasp. Encourage her to talk about it. As she airs her feelings try be sure to tell her that it makes perfect sense that she's scared but then reassure her that you will be okay and, in fact, will feel even better in the end. You might also try tape recording a couple of her favorite bedtime stories in your voice. She can listen to them at bedtime....a time that is often hardest when kids are anxious or worried. My best to you. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2004 Report Share Posted February 10, 2004 Re: Beth . You might also try tape recording a couple of her favorite bedtime stories in your voice. She can listen to them at bedtime....Barbara Barbara you are just so wise!!! Think that Beth taping a book or so for her to hear at night is great . She needs to hear your voice even from the hospital. Hearing your voice assures her you are okay. Take care Barbara and Beth!! Momma JoAnn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2004 Report Share Posted February 10, 2004 Beth, What helped with Sami when I had to keep going back and forth to Chicago, was, that we ended up taking her with us during ONE of the trips. So, if you know that you'll have to go back for anything at all...like a post-op check up, maybe you could take her with you at that time? I mean, if its going to be a short trip...like just overnight. We left Crystal with my inlaws overnight, since she was too young still, and, because it was an 8 hour drive one way. But, with just the promise of being able to go with us, that right there helped keep the worries away to a point for Sami....plus, we called 2x's while we was gone, if not 3. We had bought calling cards just for that purpose. We'd call right before we got there.....we'd call after we left, and, if we spent the night, we'd call both before bedtime and first thing in the morning before school started. Tonia -------Original Message------- Beth - Keep reassuring your little one. Surgery is a difficult concept for kids that age to grasp. Encourage her to talk about it. As she airs her feelings try be sure to tell her that it makes perfect sense that she's scared but then reassure her that you will be okay and, in fact, will feel even better in the end. You might also try tape recording a couple of her favorite bedtime stories in your voice. She can listen to them at bedtime....a time that is often hardest when kids are anxious or worried. My best to you. Barbara ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2004 Report Share Posted February 10, 2004 Thanks, JoAnn. The "taping" was one of the things that I did when my nieces and nephew were upset that I had to move out of the area to return to school. I used to send them one tape each week and they apparently loved it. My sister even told me about how the littlest one (who didn't quite get the concept of a taped voice) used to talk back to it. I then made a point of asking him questions on the tape and leaving airtime on it to give him time to respond. She said it was a real sketch to watch him listen to it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 hello. i took hbo theraphy when i had smoke inalation. it was doing better. but after a couple of treatment it was doing dame to my eyes . they told me if i went into chamber again i would come out blind. my eyes were like a premeies eyes. no epson salt bath. i am a diabetic. massage. nope. do not thinkabout touching that foot. thanks for the help. i just wish it would all go away. love ya cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 , so, so sorry, just wish there was something i could do or say to help. Know I am thinking of you and you are in my prayers - what a rotten spot to be in girlfriend!! beth Re: beth > hello. i took hbo theraphy when i had smoke inalation. it was doing > better. but after a couple of treatment it was doing dame to my eyes . > they told me if i went into chamber again i would come out blind. my > eyes were like a premeies eyes. no epson salt bath. i am a diabetic. > massage. nope. do not thinkabout touching that foot. thanks for the > help. i just wish it would all go away. love ya cathy > > > > Quote Link to comment Share on other sites More sharing options...
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