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Part 1 Day 4 post Nissen Revision

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Posted 2/28/2009 2:58 AM (GMT 0)
Bill & Teala, hi. Sorry, I haven't been on; between work and back issues, forget it. I called Cleveland last week and they hadn't seen the report on the barium swallow, so I faxed a new one to them on Friday morning and they called at noon on Friday.

While the report says that the wrap looks okay, they're quite concerned that I'm so symptomatic, and getting more so as time has gone on, so until they know better they're thinking it's one thing or another or a combo of the two. There was a sign of some dysmotility prior to the surgery, but now it looks quite bad, so I'm heading back to Cleveland in April to meet with their motility expert; I'm having a liquid gastric emptying study and an esophageal impedance test. This second one is a 24 hour motility test that has electrodes in your esophagus; it measures gas, liquid and nerve conduction and it can also determine if the wrap is too tight.

So, I may be looking at motility issues, both esophageal and gastric, perhaps intestinal too. I'm looking at possible vagus nerve issues and maybe a wrap that is too tight, so who knows!!

There are days when I feel okay and other days where I'm absolutely miserable; my good days are definitely in the minority.

Bill, I'm very happy to hear that your Dr. hasn't given up...we'll just all have to stick together on this!!

Janice
Posted 2/28/2009 3:01 AM (GMT 0)
Bill - Hopefully they will be able to find out what is wrong and do something to help you feel better. That's got to be really ruff dealing with the problems you have. I feel bad for you.

As for my recovery, I'm getting along slowly but surely. I try different foods and while I can manage some, others don't go so well. I'm able to drink normally now which is nice. Things do still get stuck and some times they come up but it is a tad better each week.

My rib and shoulder pain are still hanging in there but they are also not as bad. I do think the shots in my ribs worked some for me.

The other evening I was in the kitchen talking with my oldest daughter and an intense pain came over me in my left rib area bringing me to tears. I had to immediately go lay down and after an hour or so it subsided. I don't have a clue what that was but man did it hurt badly and scared the heck outta me. Have you ever had anything like that happen ?

Over all I think things are healing up pretty good from the surgery. If I'm still having the problems swallowing next month they are going to dilate me again to see if that will help. I think getting dilated is a breeze for me and I only have a bit of a sore throat after it's done which I can deal with. Does it hurt you to get dilated ?

I wish you the best. Take care, Teala

Posted 2/28/2009 3:27 AM (GMT 0)
Teala, I'm worried about this rib pain you're having!! This does not seem right at all; do you think they cut some nerves? or could it be that a rib is dislocated? Have you thought about lidoderm patches?, they're wonderful inventions! I live with them for my back pain and the relief is amazing!

I've been dilated once and I don't remember it being painful, I was just so relieved to be able to swallow something!

Janice
Posted 2/28/2009 3:55 AM (GMT 0)

Janice - The doctor just said nerve damage when I was in for my check up. So now I'm wondering if it couldn't be something more and maybe that had something to do with that horrid pain.... HUmmm I guess I will see if there is something she will do to check it out future next month if the pain is still there. I have never heard of the Lidoderm patch. I did get one patch the day I left the hospital but it wasn't that. I have still been taking the dilaudid every now and then when the pain gets to where I can't stand it.

I'm really the kind of person that ums and aws about things. So, like since I have been home from the hospital I have been having symptoms of a bladder infection off and on and I just try to deal with it or make it better myself but a couple days ago it got so painful I had to go in to my regular doc and sure enough I have an infection most likely from the catheter being in place for 3 days.... If it's not one thing it's another it seems.

Dislocated rib huh ? That doesn't sound fun.

Teala

Posted 2/28/2009 5:21 AM (GMT 0)
Janice,
I've heard really good things about Cleveland. I'm sure they will find out what is going on and I hope they can make it better you. I haven't had a 24 hr motility study, I hope it's not as uncomfortable as the wired ph study. I decided I'm not doing another one of those ever again. They thought I might have had a nerve problem also, but said the manometry was completely normal. If it is just too tight maybe they can get it loosened up with dilation.

Teala,
I remember having a lot of issues with the incision by my left ribs for a long time. Also, the nerve damage I have in my right ribs does do what you experienced quite often. I would just be standing, sitting, or whatever and it would hit me and put me to my knees. Sometimes it would last a couple hours and sometimes only a few minutes. Since I have gotten the shots though it has been less intense and less frequent. Is that the side they put the chest tube in? If it is Janice may be right about a dislocated rib also. The surgeon told me that anytime they go between your ribs they basically are dislocated and take about 6 months for the cartilage to fully heal and can be quite painful

As far as dilation goes... It didn't bother me until they went over 54 fr. dilators. When they used a 57 it was sore for about 3 days. After this last one at 60 it has been burning a lot just below the middle of my ribs. Even the foods I can usually eat cause it to hurt. Kinda feels like something tearing, which is what they actually do when they dilate it I guess.
My doctor emailed me tonight and he canceled my barium swallow for Monday because he will be in surgery and he says he must be present when they do the test. He is supposed to call me Monday afternoon to reschedule it for a day and time that works for me and he can watch the test as they do it. I guess after they didn't show him what he wanted to see the last time he is gonna make sure he sees it this time.
I am glad my doctor started emailing me instead of calling. He is from Italy and talks too fast for me if I can't see his lips. I don't know what that has to do with anything, but thought I'd just add it.
I hope everyone has a good weekend!

Bill
Posted 2/28/2009 7:02 AM (GMT 0)

Bill - Well you and Janice definitely have given me something to think about that's for sure. I will make sure I ask my Doctor about it. Do you know if they do some sort of test or x ray to see if it's a dislocated rib ? Those pain episodes are awful and now I'm sort of at ease since you get the same pain I can probably figure mine has something to do with the nerve problem as well. Yes it happened at the left side, that is the side the chest tube was in.

So if it ends up it is a dislocated rib that is causing the pain there is nothing they will do for it ?

I'm pleased to hear that your doctor is so hands on with you. That's fabulous that he is making a point of being there for your tests. I cracked up about your having the doctor email. tongue   My youngest daughter's doctor talks way fast to and I don't understand half of what he says on the phone so I'm constantly asking him to repeat himself so your mentioning that about your doc just made me laugh.

Take care, Teala

Posted 2/28/2009 9:21 PM (GMT 0)
Oh, Teala, I forgot to tell you too..I did have a urinary tract infection after my hospital stay; since I drink so much water I wasn't quite sure so I didn't do anything about it for quite awhile (I didn't have a catheter!!). Eventually I went in and yes I had one. They cultured it (as a just in case, because I had been in the hospital), and sure enough, they called me a few days later and had to change the antibiotic. So, yes, please, go in and get checked!!!!
Janice
Posted 2/28/2009 10:24 PM (GMT 0)
Teala,
They didn't do anything for my ribs. Said it just takes time for the cartilage to tighten up again. I do remember a feeling like a rib was moving once in a while when I took a deep breath or while I was laying down. It felt really strange, like something grinding. I am so sorry about the chest tube. I don't wish anyone to have to go through that. Every time I hear someone mention that I cringe.

Bill
Posted 3/1/2009 12:30 AM (GMT 0)

LdyJane & Bill - Thank you both so much. I get such a warm fuzzy feeling just knowing there is other ppl that care. Brings me a big smile to my face. Your both awesome!

I'm on antibiotics now Janice. They gave me these horribly big pills and said crush them and put them in water. Sooooo the first night I got them I did just that and it made me gag for what seemed for ever. I have so much troubles with crushing pills and putting them into things cause the taste is awful. I'm now cutting them into like 6-7 pieces and taking my dear sweet time swallowing them. I'm managing to get them down and that's all that counts. I can't wait to have this infection gone cause it is really painful in my back.

Well I'm off to make some fettuccine noodles with shrimp in Alfredo sauce... sure hope I can eat some or I might cry... LOL j/k

Hugs to you both, Teala

Posted 3/1/2009 1:27 AM (GMT 0)
My chiropractor helped me with my ribs, so if you have one you can trust, you may want to try that too. Feel better!!!
Janice
Posted 3/1/2009 6:19 AM (GMT 0)
HEHE!! I found a way to eat a really greasy pepperoni pizza. Drown it with ranch dressing! I managed to get 2 and a half pieces down before it got stuck. New record. Of course now my stomach burns very bad, but I ate PIZZA! Sorry, I just had to share that.
Good Night all,

Bill
Posted 3/2/2009 10:54 PM (GMT 0)
I get to try the barium swallow test again this Friday, At 8 am. Sounds like this is the last thing they want to check before they decide whether or not to poke me full of holes again. On a good note...I all ready have the holes marked for them, they just have to follow the dots so to speak!

Bill
Posted 3/4/2009 3:44 AM (GMT 0)
Hey Bill, you could draw lines from one to another and really mess them up!!!! I'm not sure whether to congratulate you on the pizza or whop you upside the head!!!

On another note; Cleveland called; I'm scheduled for a 4 hour gastric emptying study, a consult with a motility expert, a 24 hour motility impedance study and then I see my surgeon when that is all done; I'm scheduled for April 9th and 10th.
Janice
Posted 3/4/2009 5:03 AM (GMT 0)
Janice.
It's good to hear you finally have a gate to find out what's going on. I felt like whopping myself upside the head after the pizza bit. I don't think I'll try that again.
I like your idea of connecting the the dots. I think my doctor would actually get a kick out of that and I bet that would be a first for his students!

Bill
Posted 3/6/2009 6:56 PM (GMT 0)
Just got home from the great barium swallow study. Oh how I love that test. They finally saw what the problem area is, but aren't sure what they are going to do about it. It seems what the problem is with the wrap should be fixed with dilation. Well that hasn't worked, so my doctor is going to consult another specialist to see if he knows of any other way besides surgery to fix it. He told me he will call on Monday or Tuesday and let me know what they have decided should be done.

BIll
Posted 3/7/2009 12:55 AM (GMT 0)
Bill - Thank God they were finally able to see what the problem is ! With any luck they will be able to fix you right up, even if it intales surgery it would be worth it to feel good again don't you think ? I still think my surgery redo is well worth it to not have all those horrid issues I was experiencing before. I'll be praying for you and you will let us know on Monday or Tuesday then what is going to be happening right?

Wishing you the best, Teala

Posted 3/7/2009 2:43 AM (GMT 0)
Teala,
Thank you, I will let you all know what they decide. It sure would be nice to eat without waiting after every bite to see if it gets stuck or not.
How's the shoulder and rib pain doing?

Bill
Posted 3/7/2009 7:24 AM (GMT 0)

Bill - After I got the shots in my ribs it gradually started feeling a bit better day by day until about 4-5 days ago. That pain in my shoulder is creeping back slowly but surely getting worse and worse. So I'm thinking those shots did help me some and I'm going to ask if I can get another series when I go back in on the 19th of this month.

The pain in my ribs comes and goes for no apparent reason. I can't say there is a certain thing that triggers it or makes it stop. I'm guessing the two pains are still both the nerve problem and will take time to heal. At least I'm hoping it will heal.

Teala

Posted 3/7/2009 6:48 PM (GMT 0)
I was told it could take up to a year or more for the nerves to either grow back or realize they aren't acyually hurt anymore. Sounded weird to me, but it seems to holding true in my case. I am getting the shots at longer intervals now and the pain seems to be getting duller over time.
I know about the pain just hitting you for no known reason. I've been sitting all comfy on the couch and "BANG" have some nerve pain for a while. Doesn't make sense to me.
It should get better with time.

Bill
Posted 3/9/2009 10:20 PM (GMT 0)
Hello all,
I hope everyone's doing good. I got my phone call and they want to do an endoscope ultrasound and balloon dilation.

Bill
Posted 3/9/2009 11:25 PM (GMT 0)
I've never hear of that one Bill, but then I hadn't heard of 24 hr esophageal impedance testing either! When are you scheduled?
Janice
Posted 3/10/2009 4:35 AM (GMT 0)
Janice,
The GI's office is supposed to call and set it up. I think they will call tomorrow sometime. I had the ultrasound done once before when my gall bladder quit working. That part is about the same as any other EGD. The balloon dilation I also have had a few times in the past. My normal GI doctor used it a few times when I had strictures from the reflux. He said it is gentler than the fixed dilators. The surgeon says he is willing to do the surgery now if I really wanted him to, but would prefer to try this first and know he exhausted all other means to correct the problem. HE told me the success rate drops about 10 percent or so every time you have to redo the wrap.
I hope they can schedule it like the last one, the next day! I am sure you know the feeling of frustration and being tired of waiting to get results. I sure do feel sorry you have to wait so long to get in to the specialist.

My doc told me something I thought was funny... it seems I have been the talk of the hospital up there for a few days. He said about everyone up there in the gastro and surgical depts. know of my case and all the students have been studying it. That is just weird.

Take care,
Bill
Posted 3/11/2009 11:17 PM (GMT 0)
Hi Bill, When I called Cleveland and talked to my Dr.'s assistant; told her who I was and she said yes, she remembers me...a little disconcerting; he's the head a thoracic surgery for pete's sake and she remembers a nissen patient from last summer? It ended up all good, but that is a weird feeling, you're right. It brings up all kinds of paranoid thoughts doesn't it!!!

I sure hope you get some answers soon; I've actually felt a little better this week and I don't go to Cleveland until April for a new work-up...maybe this was just a 3 month recovery from the stomach bug? Or is it just wishful thinking???

Teala...how are you????

Janice
Posted 3/12/2009 1:09 AM (GMT 0)
I go tomorrow to have another EGD with dilation. I talked with the GI doctor who is going to do it. He told me they are basically trying the treatment they use for achalasia. Said there is a chance the wrap could break or perforation of the esophagus. I have heard that way too often lately. This is the one last chance to avoid a redo. It is funny how fast they can get you in when a surgeon calls them as says it needs done now.

Janice.. you could be onto something about the recovery time from the stomach bug. I have been hearing a lot of people say it has been taking a couple months to feel better. Either way, I am glad you are feeling a little better.

Take care,
Bill
Posted 3/13/2009 4:09 AM (GMT 0)
Just got back from yet another EGD with dilation. They didn't mess around this time. If I drink anything that is warmer or colder than room temp is hurts bad.I am stuck on liquids for 2 days and then try soft foods. Sure hope this works. They put me out good for this one. I don't remember a thing until I woke up in recovery. I usually can remember quite a lot of the whole procedure.
I'm having a hard time focusing so I think I'll go to bed. Even though I slept most of the 3 hour drive home.

Hope everyone is doing well,

Bill
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