I had surgery in December on 2011 to repair my hiatal hernia in which the majority of my stomach has vacationed up into my chest cavity! Well, let me tell you!!! That is the most torturous surgery on the face of this earth!!! If you do not have to have that done...DON'T!! I spent 6 days in ICU with 2 chest tubes, a very LARGE NG tube and unable to do for my self for the majority of that time. Now, the entire left side of my chest is numb and I cannot swallow hardly any food without it getting stuck around my vocal cords!
I am just curious if anyone else has this issue or if it is actually due to my surgery or possibly due to the SJS. Any input would be greatly appreciated.
Just a note, I did have a scope done about a month or so ago and according to the GI doc, "everything is normal"... imagine that!!
I'm not sure if this helps or not, you probably already do this, but I HAVE to take a sip of some kind of liquid with each bite if eating dry food or it gets stuck at about my vocal cords. If I don't it stays stuck and can be very uncomfortable. I've never been scoped, like I said I don't know that it is helpful to you. Sorry your having these troubles.
Nancy
I do do this already and it doesn't help. :( But thanks for the suggestion!
I have a friend who used to be a speech pathologist and worked with people who had strokes or other problems that caused issues with swallowing. She said to take a bite and turn your head to the right before you swallow. It worked for me after I head surgery on my neck. Hope it helps you.
Karen R
Thanks for the suggestion! I will have to try this! Nothing else has helped...so, why not, huh?? It can't hurt!! Thanks!!
My husband had the surgery. He had to give up bread unless it was "wet" from gravy or French toast. He had to have smaller bites and he wets his throat in between bites.
Mommedic,
I am sorry to hear that you are having trouble. Haven't had surgery for my hiatial hernia. But I do have trouble swallowing sometimes. Sometimes after surgery it takes awhile for the numbness to go away. I have had several surgeries and some of them took about 6 months to feel normal and not feel numb.
I hope the swallowing gets better for you. I will keep you in my thoughts and send positive energy your way.
Jules
Well, I somehow do not believe the numbness is going away this time. It will be 2 years this December. And the numbness has not gotten any better. The swallowing has not gotten better with all the suggestions everyone has given to me. Now, today, as well as many other days, the nausea has been nearly unbearable! I don't know what I will do if they don't figure out what is causing all this GI upset! This is almost worse than the migraines I was having every day! (well, at least as bad!) I see my cardio doc tomorrow. Hoping he has some answers of some kind for me. I am also hoping to get in to see my primary doc tomorrow! I would really like to go to John Hopkins! Maybe they could figure this mystery out!?!?
I do not know if this pertains to you but my mom had an awful time swallowing and they found out she had temporary peralisis of her esophagus. She could only eat/ drink liquids forabout 4 months. It was due to autoimmune issues that she is being diagnosed for now. She can eat solids again but like me must chew thoroughly and sip with each bite. She has a hiatal hernia but no surgery (that had to be awful!)
My mom also found that even though she doesn't have celiac (I do) that going gluten free has really helped all of her GI issues. She said ginger ale helped her swallowing some too.
Good luck, the longer it goes unanswered the more upsetting it gets, don't let yourself get malnourished- ensure drinks help.
Wow, not the end result you had hoped for after such extensive surgery. I'm so sorry you're fighting this battle.
I had major abdominal surgery Nov. 2010 which has left me with a lot of numbness - I was told that nerves can grow back within 12-18 months but after that the numbness left is probably permanent. I also sometimes have random times when the surgical areas swell up like heck- don't know why but when those area swell they can be uncomfortable to downright painful... and then for whatever reason the swelling goes away and I feel normal. I'm in a swelling stage right now. Do you find that you're having swelling that comes and goes - and when it's there makes your swallowing worse? That might explain why your Doctor found everything normal when he scoped you.
I presume you are drinking lots of blended soups and pureed foods which are easier to swallow? Wish I had a magic pill you could swallow that fixed it.
Wow! This sounds eerily similar to what I am experiencing. I will have to see if I can get the docs to check it out tomorrow! Keeping my fingers (and whatever I can) crossed and saying lots of prayers that the nausea goes away!! Thanks for your input! I sooo appreciate it!
Skylar, No, I don't have intermittent swelling. I have permanent numbness to the entire left anterior half of my chest area. It is very irritating. The doc that did my surgery didn't even tell me that this was a possibility prior to the surgery. didn't tell me there could be swallowing issues, didn't tell me any of the "could be/would be's. I am so angry with this doc I cannot see straight! If I could do it over again, I would NOT have this surgery again!
I am wondering if you have been seeing some different docs. I would also recommend speech pathologist and maybe they could steer you in the direction of someone who deals with the more complicated swallowing issues. I am also wondering if you are having some strictures or scar tissue that could be putting pressure on nerves causing the increase in symptoms.
I guess I would seek out different docs and have more scoping, etc. I am sure you are really getting sick of this by now. It is possible that you are experiencing some neurological issues that are affecting this swallowing and it is possible that the doc did something that was not appropriate when he did the surgery. This type of surgery can really be a wicked one and is slow to recover from. Two years seems like enough time to recover some feeling though.
I am also trying to understand just how large your NG tube was. I have done a ton and a half of tube feedings and meds per tube during my nursing career and I know that tubes can be quite large, but they only need to be large enough to do the tube feedings and meds---not pass a watermelon, if you get my drift. I am hoping they didn't put one in that was really, really big. These tubes can also put pressure on different areas internally but I would hope that it was moved or changed routinely. Just inserting the air would move things around inside the stomach relieving pressure or doing a certain amount of repositioning of the tube.
I hope that you can find an answer to this. You may end up having a temporary tube to give you a chance to get good nourishment and hydration which in turn might help also. Hopefully there is some type of doc who can determine what is precipitating all these miserable issues. Good luck and please keep us updated. Irish
Oh, Irish... the tube was never changed nor was it moved or anything during the entire time it was in! I was in the ICU for 6 days with 2 chest tubes and one honking NG tube that stayed in past the 6 days. If I remember correctly, all 3 tubes were in for 8 or 9 days?? Both chest tubes were placed on the left side (which I find strange in itself). The doc reassured me that the feeling would come back. I asked him several times just after my surgery and at my follow up visits in his office. I also asked him about this issue with the swallowing issue. I have had to give up soda, caffeine, most meats, most breads, I have done my best at doing the gluten free diet (hoping that would help), I have given up milk and I can't even eat chocolate now!....I am just about at my wits end! I don't know where else to turn! Now, I feel like all I can eat is gluten free cereal with the Almond milk. My neuro blew me off like I was crazy. I am beginning to feel that way!
After my abdominal hysterectomy, I began having awful time swallowing. Then, the gastroparesis kicked in big time. I only can drink extremely warm-almost hot water to get things down, and cant live without my diet pop. The carbonation and all the other junk in it break down my food somewhat..my rheumy agree's..even though pop-soda is bad for you..i have to drink it, especially after taking some medications too..
I cant hold much in my stomach-intestines either...feels like the food comes up and just sits in my chest? very painful. I have to go back
to my GI doc soon. Im losing more weight and feel that malabsorbtion is becoming a big issue.
Hope in time you will feel better..thanks for the insight on this type of surgery. I hope I never need it!
Gursie
If it were in my power to go back in time... I would deff not allow a thoracotomy to be done! They would do it through the abdomen! They would never be allowed to crack my chest open again! Ladies! never allow this to be done to you! It is very animalistic! (And Gents...sorry!) This is a very horrible surgery and should never be allowed to be done. It can be achieved through an abdominal laparoscopy surgery as I have found after I had mine done... go figure, huh? Just venting... sorry. Just, please do all the research prior to any type of surgery you are planning on having and make sure the surgeon you are allowing to cut on you is top notch! I have done this with the surgeon who is to do my neck surgery and he is the chair for the neurosurgeons for the state/area. He is the "top dog" in his field! I actually feel pretty comfortable with this surgeon, as where I didn't with the other one. Gotta love those gut instincts!
I guess I am of the opinion that having a NG tube in for 6 days is not unusual. I was not saying that they would reposition the tube manually, but that just by your own turning and the air inserted to test for tube placement there would be some slight movement.
I can only tell you that I am sorry that you are so miserable. I can also agree that this surgery is invasive and very stressful on the body. It may well be that you have developed some bad neuropathy that may need some intense treatment. Have you seen a neurologist or an immunologist who might be able to give you another opinion. It might be that some IVIG therapy would help. They use this often for treatment of urgent neuropathy. There are neuros who also do high dose steroids for neuropathy that needs to be calmed down ASAP. I would actively search out someone at a teaching institution/university where the doctors are generally more apt to use the latest in techniques. Good luck and keep us updated.Irish
OH! I see, I am so sorry! I misunderstood what you were saying. However, the tube that was placed, in my humble opinion, was a large one. Nonetheless, I do have some sort of issue that needs some attention, indeed. I did see my cardio doc today and he ordered a barium swallow study to see if it would show anything unusual since I have such issues with air trapping and food sticking. He also diagnosed me as having "too much epinephrine in my system". As it turns out, I looked this up and what I found, it is a fairly rare condition. He has placed me on some medication hoping to calm it down. Fingers crossed that this works!
Hi Litliwlowa, I did see that on the web about the tumor and the 24 hour urine collection. I may have to ask my primary for a referral to an endo to check that out. I am hoping the swallow study I am having this morning will show something as far as to why I am still having so much difficulty with that after my surgery, esp this far out. The surgeon's PA didn't seem to think the surgery had anything to do with my issue... go figure. But, I didn't really expect any other response from them. I am just keeping my fingers crossed that I get some sort of an answer from this test. If not, I am stumped. Guess it will be on to an endo from here?? Not really sure where else to turn from here....
Well, as I figured...nearly everything is fine... only marginal narrowing at the bottom of the stomach which the doc says may be causing some of my issues. So, now I guess I wait...again. :( :-\
I am about at my wits end and am about to give in... don't really know what else to do... I am very sad.... sorry... don't mean to whine... just sad...
It is true that the swallowing issues may not be directly related to the surgery. The fact is that any stressor can cause an increase in symptoms and I am still wondering about the possiblity of neuropathy caused by sjogrens or some other autoimmune disease.
I have forgotten just what all your AI issues are, but swallowing is something that can be affected by so many other issues, ie., scleroderma(which can cause esophageal problems) multiple sclerosis, etc., Don't mean to scare you, but it may just be that the surgery was a success but in this time the stress of the surgery kicked in some other issues. Neuropathy demands significant neuro testing and if you have a doc who isn't co-operative you may need to find one who is.
I would suggest that you have someone who can help you advocate for help and take them with you to the doctors if possible. I know, it is so hard to face all the doctors, but sometimes we just have to keep on at this nightmare until we find someone who can look in the right direction and help us. Good luck. Keep us posted.We are rooting for you. Irish