Frustration setting in!

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LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 12/30/2010 8:14 PM (GMT -6)   
Hello friends. This is long, convoluted, circular references and frustration!!

You may know about these awful spasms that started 6 months after the nissen in 08 as well as the chronic diarrhea..ok, fast forward through many visits, tests, etc.

Last summer, my migraine guy put me on klonopin as a preventative and to help me sleep..not good for headache, but sleep has been wonderful. Side effect....the spasms got better...didn't go away, but got better.
Last Cleveland Clinic (CC) visit, new neuro wasn't crazy about the klonopin, addictive, will need more as time goes on, but the baclofen they suggested didn't work.

To today:
the spasms are back full force, painful, frequent and I have heartburn as badly as I did before the nissen...I mean, take a drink of water and boom, heartburn. The protonix is not helping. The manometry, last August showed massive, violent reactions when I had the spasms, most impressive they said, but they don't know what this is.

Complication:
I am now scheduled for the big breast reconstruction on February 7th; an 8 hour surgery, lower abdominal tissue from side to side removed (with hundreds of stitches inside and hundreds outside) and placed and creates the new breast; microsurgery, tons of pain, 2 to 3 month recovery and I am spasming like crazy. Fear factor has increased ten fold...can you imagine these incredible spasms while recovering from that surgery :( seriously scared.

So, I called the GI at CC who tells me this:
I deal with the heartburn and the diarrhea (another story, my family dr. finally helped there). He says, you have a movement disorder and the new neuro wasn't to happy about the klonopin. He says to increase the protonix to twice a day for a few weeks and add in pepcid ac in between doses; when it settles down, go back to the protonix once a day. Now, remember this...he is the one who said (after the last round of testing...the spasms are causing the reflux!, not the other way around! So how is increasing this for a few weeks going to help?

So, Monday, I have to call the new neuro at CC to talk to him..but what do I say?, except for what I've said here??. oh yeah, I'm not scheduled to see him again until April 11th..2 months after the new breast surgery.

My thoughts, help me figure this out.. I see my wonderful family gp next week and will fill him in; I'm calling the neuro at CC and ask for help; and I'm wondering if I need a new GI or do I go to Mayo? I am combing the literature to determine what these spasms could be; I'm at a loss..the tests have ruled out nutcracker, achalasia, and what not, but they are quite perfect either.

So frustrated tonight!

Janice

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 12/30/2010 11:13 PM (GMT -6)   
Janice-
Sorry I have no answers, but I have HUGE HUGS for you lady. I have heard good and bad about Mayo for GI. I know, like that helps you at all. I can recommend a good GI at Loyola.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/31/2010 9:46 AM (GMT -6)   
Goodness, Janice!
Why can't they put you back on the Koloprin until you're healed up from the surgery? That would make things so much simplier.
Joy

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7180
   Posted 12/31/2010 11:26 AM (GMT -6)   
Janice,
I am so sorry that you have to tolerate these challenges. I truly hope that you can find someone who can unlock what's causing your spasms. I had (compared to yours) little spasms with the PH monitor probe this time (had many extra biopsies because I participated in an esophageal study), and they drove me crazy. I can't even fathom what you're going through. You know that all of us here want to provide whatever help and support we can. At least we can be your sounding board, and "ventilator"!

My daughter in law works with are the finest microsurgeon/plastics guy in the area for the type of reconstruction you're having. If you'd like me to run your particular issues by them, let me know. She's off on maternity leave at the moment, so she has a bit more time on her hands, and if you have any specific issues or questions regarding meds, etc., just let me know, and I'll pass it on to her.

Hang in there, my friend. At least you'll have one less worry--work--so maybe you can focus on getting these things straightened around.

I definitely think you need another opinion. I'm afraid I can't guide you in the direction of where to go, but I do encourage you to search out the best option you can. I know you're willing to go wherever it takes, so hopefully someone here can offer a name/facility.

You know we're with you in spirit, and want the best for you.
Take care, Janice.
Denise

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 1/1/2011 2:07 PM (GMT -6)   
Oh Denise, the breathing is getting involved again..had a solid asthma attack last night; I have the cough variant type..so coughing, coughing, cough, and then the after effects of tightness, congested feeling. I felt like it was coming on for the last couple of weeks, but it was bad. Makes the idea that the acid is getting back in and up into my lungs more of a reality.

Btw, I am very comfortable with my surgeons, I know I'm in good hands with them; but I'm not comfortable with the hospital. I'm fairly aware of the recovery, but not being concerned about it would be nuts!!

Joy, I'm still on the klonopin, it's just not helping the spasms anymore..

Thanks for the hugs Bill, same to you my friend!

Hope you all has a wonderful New Years Eve!!

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7180
   Posted 1/2/2011 8:52 AM (GMT -6)   
Janice,
I'm so sorry you're having lung issues. cry I can certainly identify with your symptoms, as they are similar to the ones I get. Do you get a lot of mucous being produced as well? I hope you are straightened around by now. Do you have a good lung doc that you can see when you get into trouble? As I ask that question, I realize that there is little that a lung doc can do when the cause is likely to be reflux.

I'm glad you have great surgeons. According to my DIL, the procedure you're having is the very best one. A neighbor of mine who had my DIL's surgeon said that she is very happy she had the reconstruction. With it she's not constantly reminded of her health challenge.

I know hospitals can vary regarding care. My DIL and her surgeon used to work for the biggest hospital in the area. When he went into private practice, they opted to do their work at a smaller hospital that is still part of the system. She loves that hospital, and thinks the nursing care is much better there.

I have no doubt that you can be your own advocate in most situations while you're hospitalized. During the times when your down and out, be sure to assign that job to your husband!

Hang in there, my friend. Here's hoping the New Year will lead you to some answers and relief!
Hugs,
Denise

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 1/2/2011 5:48 PM (GMT -6)   
Janice, 
 
My friend,  I am so sorry to read of your issues and I am sure you are crying on the inside for many reasons.
 
I had a friend that had  a bilateral mastectomy prophylactically due to the high risk of breast cancer in her family.  She had reconstruction during the primary surgery and was very pleased with it.
 
I hate the thought of you lungs becoming involved again. 
As for concern about the hospital is there another one in Cleveland that your surgeon is affilated with ?
 
I'm a really good listener. I offer that because it's something I can do.  Please know I care, Janice and I will be saying lots of prayers to help you through yet another tough time.
 
Gentle Hugs,
 
Kitt
~~Kitt~~
Moderator: Anxiety/Panic, Osteoarthritis, GERD/Heartburn and Heart/Cardiovascular Disease.
www.healingwell.com

"If you can't change the world, change your world"

Post Edited (stkitt) : 1/3/2011 5:28:44 PM (GMT-7)


LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 1/3/2011 4:18 PM (GMT -6)   
Hello all; welcome back, dearest Kitt, we haven't talked for a while..I should say welcome back me!, I've been so wrapped up in work that I haven't really talked to anyone.

I called the neuro at CC today, I have yet to hear back...oh, let me back up. I called the GI at CC on Thursday; he called me back and told me that he's in charge of reflux and diarrhea; I have to talk to the neuro about my "movement disorder". I told him about the breathing difficulties, the surgery coming up, the concerns, etc., and he tells me to increase protonix to twice a day, take pepcid ac in between and call the neuro. He will call in a script for the increased protonix...which he didn't do.

Angry!, Frustrated..okay pssd off! My symptoms are exactly what I was having before the Nissen and he blows me off!

Today I called my asthma dr...she is wonderful and saw me this afternoon. I'm going to increase the inhaler, but she doesn't want to put me on anything else, we know what is causing it, the acid!; it's affecting my voice again, and sheez! She's going to talk to my family doc who I see in a few days, and she thinks...1. I need to go to Mayo, I'm not getting what I need at CC and 2. to call off the reconstruction in February; I'm coughing so hard that I will probably damage the work, the healing, etc.

I'm going to do what she says, except calling off the surgery...I'm going to give it time to see if it calms down; if it continues I'll cancel, but not just yet.

In the meantime, my lungs hurt; I may just call my surgeon though; Kitt, he is only at the Clinic; he's the Chief of Thoracic surgery there.

Another day, and so it goes.

Janice

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4978
   Posted 1/3/2011 5:45 PM (GMT -6)   
My GI says that PPIs will stop spasms. I'm not sure I believe it, but it's worth a try.

I agree with you that calling the surgeon is a good idea. A barium swallow will show what's going on with the stomach. Mine reherniated after I had a vomiting episode. Serious coughing can do the same thing.
Alcie
 
 

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 1/3/2011 6:43 PM (GMT -6)   
Janet,
 
I am sorry for all the run around you are getting.  I have presented to the Doctors on one occasion with a concern/complaint only to have the Dr.  ask me what I think he can do for me ------W H A T ???
 
You are so brave and you have been through so much as you look down the road and see other challenges coming your way.  I admire the way you handle each problem even though I know you are feeling so much emotional and physical pain.
 
I think you are wise to keep you scheduled surgery.  Remember it is your body and your decision. 
 
Try not to get to frustrated with the Doctors  as I know how hard it is when they know more then we do - the patient who is going through the pain.  You have my permission to toss paper plates when you get pi$$ed as they are easy to clean up. 
 
I will be watching for you next post.
 
Lotsa hugs and take care,
 
Kitt
~~Kitt~~
Moderator: Anxiety/Panic, Osteoarthritis, GERD/Heartburn and Heart/Cardiovascular Disease.
www.healingwell.com

"If you can't change the world, change your world"

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7180
   Posted 1/3/2011 7:03 PM (GMT -6)   
Janice,
I am glad you're here and can vent your feelings and frustration. It is annoying (more than annoying) when doctors tell you that you're not experiencing what you are experiencing--when they don't help you when you reach out for help--and have no sense of urgency.

I third the motion that you should call your surgeon at CC. He's the one who did your surgery, so should know best what you should do next. He'll probably want to see you again, don't you think?

As far as the surgery goes...I agree that you shouldn't cancel right now. Hey, your cough should be resolved by then. I coughed severely after my Nissen and hernia repair...wouldn't you think coughing would totally make that come undone? My husband was doing lung PT on me throughout the day, and I'm telling you, my cough was horrible. On top of that, I had fragile internal tissue due to steroids.
It seems to me that if my surgery repair could withstand that, yours might handle some coughing as well.

When you make that decision, it should be on the recommendation of the micro-surgeon who is doing your procedure. If he/she thinks it would be unwise to have the surgery if you're still coughing a lot, that that would be the decision to make.
Maybe your cough will have resolved by then.

Your asthma doc may have suggested canceling the surgery because she could see how stressed the anticipation of the surgery being complicated by coughing, was for you.

Throw those paper plates! Punch those pillows!
We're with you, my friend. We're with you.
Wish we could do more!
(((((Hugs))))),
Denise

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 1/3/2011 7:32 PM (GMT -6)   
boy, do I love you guys! you are .........amazing friends.....and I couldn't be more blessed.

I'm always better when I can get it out and you keep me in line; supportive, providing a different slant on a subject, wise; my friends...
wow.

I'll let you know what the Dr.'s say; the neuro never did call me back..who knows when that will happen, and I'm going to think about calling Dr. Rice; at least his assistant; she has always given me good advice.

hoo boy!

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7180
   Posted 1/3/2011 7:44 PM (GMT -6)   
Right back at you, Janice...right back at you.
Hang in there and stay with us!
Good luck with your doctor contacts...
hugs,
Denise

kylasgrammy
New Member


Date Joined Jan 2011
Total Posts : 3
   Posted 1/3/2011 8:10 PM (GMT -6)   
I'm new to the forum but am finding all this info so interesting. I had nissen wrap done in 1998. It stopped reflux, but I have never been able to stop the heartburn meds, which they originally told me I would. My wrap is still intact 12 years later. I started having what my dr called esophageal spasms a couple of years ago. I also have dry heaves with them because of course I can't throw up. Am taking Hyomax-SL 0.125 when I get the spasms. I never know what's going to trigger the spasms and nausea. They happen a lot in the middle of the night. Pain with them is horrible and it is right in area of my wrap. Had CT scan recently which didn't find anything out of ordinary. Now my dr is talking of sending me to surgeon and maybe having wrap undone. Don't think I want to do this cuz had Barretts and severe asthma from reflux before wrap. Also no guarantee this would fix problem. But seems like I keep getting more side effects from wrap as years go by. Thanks for listening. Eager to hear from people with same issues.

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 1/3/2011 9:08 PM (GMT -6)   
wow!, this sounds tough grammy; I've never heard of hyomax, so I can't say anything about it; I am getting heaves as well, not sure at all about the connection, but I'm glad to hear I'm not alone in that. So, they're saying that the wrap is the source of your spasms? and that by undoing it this should stop them? They're also saying that the spasms and the resulting damage is worse then development of barretts and pulmonary bad things? Is your Dr. a gastro guy, or something else?, have they done any other tests beyond a CT?

My spasms do not occur at night, but at all times of the day and evening and ingesting something will usually set it off..funny though, today, for example, almost no spasms, and those that I had were mild. My pain is in the wrap area but also in the middle of my chest and they do hurt.

I don't know what to tell you about undoing the wrap, especially with barretts but I'll tell you, with the acid coming back on me, the pulmonary issues started up immediately...it's awful and I can't imagine what would happen if this wrap were un-done, open the flood gates!

Boy, second opinion is screaming from my head on this one!

Janice

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 1/3/2011 9:13 PM (GMT -6)   
Alcie, I've been back on the PPI since last fall and now have doubled up and added pepcid...no impact on the spasms...at all!
The barium swallows show some abnormalities but no one seems to think that it's a problem. (except me, I guess!) Manometry show violent changes when I spasm and 24 hr ph shows some serious acid when I spasm; so they concluded that the spasms are the problem, they just don't know what is causing them, much less what to do with them.

kylasgrammy
New Member


Date Joined Jan 2011
Total Posts : 3
   Posted 1/4/2011 11:47 AM (GMT -6)   
Janice, my doc is a GI. Haven't had any other tests in years. No, I am defnintely not having the wrap undone. I coughed for over 2 years before had wrap done, from asthma. Couldn't eat anything except pudding and chamomille tea, which is great for the figure, but a lousy diet. Everything else made me gag.

Just wish they could figure out something to stop these spasms.

Did your wrap come undone? Are you redoing it? How long did you have it in place before it came undone? GI doc says it is very rare for someone to have wrap 12 years like mine. I wonder if anyone else on site has had wrap as long as me. Just curious I guess.

Hope you feel better and wish you well with your upcoming surgery.

Linda

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7180
   Posted 1/4/2011 1:23 PM (GMT -6)   
Hi Janice,
Hope you're having a good day. I emailed my DIL and asked her about the reconstruction and asthma/coughing. This was her reply:

"...no asthma wouldn't be a problem for the reconstruction but
may be an issue for anesthesia. The only issue would be some slight
increase in discomfort in her abdomen if she is continually coughing
and flexing her abdominal muscles. We often tighten these muscles when
closing the abdomen so that might be a little more sore."

My note...I had horribly infected and nasty lungs when I had general anesthesia with no problems. I called a good friend who is a nurse anesthetist, and he said that he could tell just by hearing me talk on the phone that my asthma wasn't as bad as many they anesthetize. He said that they have good meds to put into the anesthesia mask that help keep things open. Just let the anesthesia team know you're having trouble and they can accommodate it.

Just thought you might be interested in that info...
I'll get on later and tell you about my visit to my GP today.
Have a good one!
Denise

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 1/7/2011 5:38 PM (GMT -6)   
hello all. I saw my primary doc last night and also talked to the CC neuro's triage nurse; both suggested, and I did, call Dr. Rice, my surgeon.
So, this morning, I spoke with his assistant and his triage nurse manager; both are fairly concerned; not only about the problems I'm having, but the reaction from the GI. Dr. Rice is on vacation; so when he comes back they will review my records and they'll get back to me. Now I KNOW! what it's like when the Chief of Thoracic surgery is off for two weeks...I can only imagine the backlog and so I'm anticipating that it will be a while before I get contacted. I'm thinking that I'll wait until maybe a week from Wednesday?...well actually, we leave on a cruise next Thursday evening and won't be back until the 21st...

I guess we'll see!

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7180
   Posted 1/8/2011 9:46 AM (GMT -6)   
Hi Janice,
I'm glad to hear you've gotten the ball rolling. CC's rep is on the line here. They see themselves as a last line of defense, and I understand why Dr. Rice's triage nurse is upset about the GI response.

Did you see my post on this thread regarding my DIL's info that coughing is not a contraindication for the reconstruction surgery?

How wonderful that you'll be getting away for some R and R! A cruise! I've never been on one, but my kids love them. Have fun!

Since you're leaving on a cruise, I don't think it would be unreasonable to follow up with Dr. Rice's office a bit earlier. I'm sure you want to hear what he has to say.

Try to rest, relax, and get your strength back. Are you still coughing a lot? My lung issues come and go. It's obvious that I'm getting some silent GERD--enough to stir things up. I've got to keep my meals smaller. When I eat a lot, it gives me trouble--even when I stay up a decent amount of time. Pressure with a full stomach--not smart. Unfortunately food tastes so good!

Take care, and have a wonderful trip.
Hugs,
Denise

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 1/8/2011 10:07 AM (GMT -6)   
Good Morning Janice,
 
First of all take me along on that cruise...........how I would love some warm weather and sunshine.  Now don't tell me you are going to Alaska smhair .
 
I so agree with Denise,  I would call your Dr. back as leaving for 2 weeks I am sure you would like input from your surgeon to put your mind at rest. 
 
Please know I am thinking of you and will be watching for you next post.
 
Gentle hugs and prayers,
 
Kitt 
~~Kitt~~
Moderator: Anxiety/Panic, Osteoarthritis, GERD/Heartburn and Heart/Cardiovascular Disease.
www.healingwell.com

"If you can't change the world, change your world"

droper
Regular Member


Date Joined Mar 2010
Total Posts : 56
   Posted 1/10/2011 4:21 PM (GMT -6)   
Spasm are a strange issue that I'm not sure there is a cure for. You can attack the problem based on some simple increase in certain intakes like magnesium which helps relax muscles. Other than that meditation and yoga might help release certain natural chemicals in your body that relax as well and perhaps this will inhibit the effect more.

I'm no expert but neither of those things will hurt you if you try them but you will definitely get something beneficial from them though perhaps not a cure for your problem.


There are drugs out there though that help people with control involuntary muscle movement but not sure if they would work on your spasm.
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