Heartburn and Chestpain and Magnetic throat rings...these are a few of my least favorite things

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Emanne
New Member


Date Joined Jul 2010
Total Posts : 7
   Posted 7/9/2010 5:28 PM (GMT -6)   
Greetings fellow Gerdies,

I'm new to the forum, but not new to GERD. I've been around the block, was a long time Nexium addict but got off of it 2 years ago when I qualified for the Torax Linx magnetic LES ring. I had the surgery, had a few issues with it being too tight, but overall it was fine. Except for, oh yeah, it didn't get rid of my heartburn (or more appropriately....THROAT burn, in my case). My doctor is a robot who doesn't care about my symptoms and only goes by the test results, which he says prove that my heartburn is much improved.

It's not. And in the past year, I've experienced 5 or 6 episodes of extremely bad chestpain and a strange....well, it's almost like having a migraine in your esophagus. These episodes force me to lie in the fetal position and breathe very shallowly until the spasm stops. My doc says it's probably caused by 'Nutcracker' Esophageal spasms and that I've probably had that condition my whole life. Right...and it just happened to show up ONLY after I had the ring placed.

I'm sorry, but I'm very cynical now, about any and all medical advice from doctors. I don't want any more drugs, I don't care if I get throat cancer, I will not go on another PPI. Nor will I take NITROGLYCERIN....which is what my doc prescribed for my chestpain. Yet, it's not cardiac related, and I have very low blood-pressure anyways, so it seems borderline nuts to take Nitroglycerin. Anyone else? I'm probably just being paranoid.


I guess I'd just like to know about others' experiences with the Torax/Linx Ring; if anyone else is having painful spasms that last 4 to 5 hours at a stretch....I'm considering getting this thing removed because it's not doing anything for me anyways...there is fire in my throat no matter what I eat or drink.


Sincerely,

Sad and Seared in Minnesota

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/9/2010 7:44 PM (GMT -6)   
I've heard some people having issues with spasms with the linx system. Some have had to have them removed.

Joy

lilitiger2
Regular Member


Date Joined Mar 2010
Total Posts : 89
   Posted 7/10/2010 12:09 AM (GMT -6)   
Hi sad and seared
don't have the ring but think my doc took notes from yours
I have had the chest pains...my doc doens't even call me back on those
one doc did tho say I should start a cardiac med (cardizem) although he doesn't htink its a heart problem, it was to relax the esophagus. But it supposedly really lowers blood pressure and mine is low already, so I decided to pass..

very cynical about docs at the moment (particularly after the we-gave-you-a-$hit-load-of-versed-but-no-pain-killer-in-spite-of-what-we-told-you deal with my most recent endoscopy..

good luck withyour ring and if you do find something that works with the pains..
lila

lilitiger2
Regular Member


Date Joined Mar 2010
Total Posts : 89
   Posted 7/10/2010 12:09 AM (GMT -6)   
Hi sad and seared
don't have the ring but think my doc took notes from yours
I have had the chest pains...my doc doens't even call me back on those
one doc did tho say I should start a cardiac med (cardizem) although he doesn't htink its a heart problem, it was to relax the esophagus. But it supposedly really lowers blood pressure and mine is low already, so I decided to pass..

very cynical about docs at the moment (particularly after the we-gave-you-a-$hit-load-of-versed-but-no-pain-killer-in-spite-of-what-we-told-you deal with my most recent endoscopy..

good luck withyour ring and if you do find something that works with the pains..
lila

speden
Regular Member


Date Joined Oct 2009
Total Posts : 175
   Posted 7/11/2010 7:53 AM (GMT -6)   
Hi Emanne,

There was another linx user that reported a similar problem here:

www.healingwell.com/community/default.aspx?f=45&m=1797492

He was considering having the linx removed due to the pain. So it sounds like esophageal spasms are a potential side effect of the linx device. That seems like maybe it happens when the linx is too tight. Since it's a mechanical device, it is unyielding and will never stretch the way a conventional wrap would. So it seems crucial that it be exactly the right tension when it is first implanted, otherwise there will be problems. I think they need to invent a way to adjust the linx tension post-op to fine tune the fit. I suspect a slight loosening of the linx might eliminate your spasms.

Could you give a little more information about what your tests show and what medication you are currently taking? Does ph testing show no significant reflux, but you still feel throat pain you know from experience to be from acid exposure? Once you got the linx, did you stop all PPI medications and lifestyle changes, or did you continue those?

There was another linx user who also complained of throat problems after the linx and I thought maybe it was because they didn't elevate the head of their bed. The linx seems like it can greatly reduce reflux, but not seal the esophagus 100 percent, so some lifestyle changes are still needed. That thread is here:

www.healingwell.com/community/default.aspx?f=45&m=1646140&g=1825985#m1825985

Do you think you will have the linx removed to see if the esophageal spasms go away?

Emanne
New Member


Date Joined Jul 2010
Total Posts : 7
   Posted 7/11/2010 8:14 AM (GMT -6)   
Hi Speden,

The motility tests showed 'nutcracker esophagus'. My last Bravo test showed reflux 1 day, no reflux day 2. But in general my doc says my Bravo tests show that my reflux has decreased significantly after placement of the ring. However...my throat is still burning and now I'm having these strange esophageal spasms/painful episodes :(

After placement of the ring I stopped Nexium...it was a painful time but I just did it. I had to have the ring stretched once at the very beginning as the ring was too tight (it literally wouldn't open for food to go down....), they captured the whole thing during my barium swallow test (and thank goodness....because my doc didn't believe me when I told him about it..)

I don't know what to do...I wrote an email to the research coordinator about these symptoms and I suggested that I want the ring removed. I'm quite the 'troublesome' clinical trial patient, but I don't give a crap. I'm 100% for myself now, and 100% dedicated to getting better. I have done the LEAP program food intolerance test and have drastically altered my diet and lifestyle since placement of the ring (confounding the whole darn thing....I guess).


I do think I'd like to have the ring removed...I know it's helped some people, but it's just not been worth it for me.
Thanks for your comments :) :)

Shooz
Regular Member


Date Joined Aug 2009
Total Posts : 92
   Posted 7/11/2010 12:25 PM (GMT -6)   
Hi Emanne,
I get the cold sweats every time I hear a fellow Linx user describe PROBLEMS. I just scheduled my 1 year follow up tests for the next 2 weeks and I'm optimistic about the results. To date I'm off the meds (long time Protonix user) and VERY happy about it given the side effects that I'm now reading about. Every now and then, and only when I eat I do get some burn that lasts only for a few minutes then goes away. This may happen once or twice a week or sometimes once or twice a month. I do have the sensation of something in my throat. I'm hoping that the tests next week rule out anything bad. It feels like a constant lump or a constriction of some sort. I have learned to eat more slowly, smaller amounts and chew better, just like your mother taught you. My biggest questions for my Doc is what happens after the study? What do I do if something happens and a problem pops up. What happens if I have to have it removed for some reason. Overall I extremely happy with my results to date. I no longer wake up in the middle of the night vomiting acid and stop breathing. The occurrences of chocking were becoming alarmingly closer together and were quite unnerving. I know I'm still over weight and constantly fight to keep my weight down. I'm back to eating pretty much anything I want (hence the problem!!) I'm sorry that some of us are having problems and there doesn't seem to be a good reason or fix. My surgeon has been easy to talk to and takes the time to answer any questions or concerns that I have. Best of luck to all the Linx students and I'll report back after my tests are done. Keep smiling. Shooz

Emanne
New Member


Date Joined Jul 2010
Total Posts : 7
   Posted 7/11/2010 4:31 PM (GMT -6)   
Hi Shooz, it's WONDERFUL to hear about your success, and my doc has told me that the majority of patients who have had the LINX ring placed so far have had much improvement with their symptoms. Hopefully your issue will go away too; let us know how your follow-up tests go. My 2 year follow-up tests are next week! Endoscopies are so much fun! (actually, I don't mind those...I do mind the manometry tests, though! horrible..)

:)

Emanne

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 7/12/2010 12:32 AM (GMT -6)   
Emanne-
Welcome to the GERD forum. I see you have already met some of our great members. I am truly sorry the surgery didn't work for you. I had to have mu Nissen done twice to get good results.
take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09


HHernia27
New Member


Date Joined Nov 2010
Total Posts : 1
   Posted 11/11/2010 9:58 PM (GMT -6)   
Hello everybody. This is my first post.

I have been trying to find as much info on
this linx system and possible.

I think this linx magnet thing is a nice idea, but
our own sphincter does not work this way.

The LES does not tighten the esophageus, but
the linx does. As far as I know the LES works , by
closing the gap between the stomach and the esophageus.
So I think this would explain why some experience a constant
´´ĺump´´ feeling with the linx magnet.

I don´t think it is a good thing when something
is constantly pressing on tissue. What happens
with blood flow in the esophageus because of this?

Another thing I was thinking about is that in healthy people
the LES is the barriere between the stomachs acids and
the esophageus. With the linx magnet it is still your
own esophageus(the lowest part of it)
which stops the acid from coming up.

Hope to learn from you guys.

Regards,

HHernia27

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 11/12/2010 9:32 AM (GMT -6)   
Hi Emanne,
I'm so glad you've joined us! I didn't have the Lynx, but had a Nissen instead. I'm sorry to hear you're having so many problems, and have such an unresponsive doctor.

If you're in Minnesota, have you considered getting a second opinion at the Mayo Clinic? I'm sure they're very well-versed in dealing with difficult cases.

If things don't improve soon, and your doctor continues to provide you with unacceptable answers, a second opinion from another GI doc/surgeon would be a good next step.

Good luck!
Denise
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