Shooz and Linx

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Shooz
Regular Member


Date Joined Aug 2009
Total Posts : 92
   Posted 7/28/2011 2:26 PM (GMT -6)   
Hi everyone,
First let me say that I'm sorry that it has been so long since I was here last!! I have been busy at work traveling etc. With that being said I'm back and still doing great. Since we last talked my Linx has been working very well. No reflux or burn since my operation 9/09. As some may remember I did get put back on the pantoprazole as there was some very minor leakage back into my esophagus. I did get a call from the study coordinator that they would like me to stay in the program for another couple of years which I agreed to. I hope everyone is doing well. all for now and I promise to stay in touch. Shooz tongue tongue tongue

Chuck T
Regular Member


Date Joined May 2011
Total Posts : 143
   Posted 7/28/2011 2:34 PM (GMT -6)   
Shooz, its great to hear from you. Im glad that you are doing well! Are you still on pantoprazole? Can you tell us anything about the clinical trials going on right now, or what they are saying about FDA approval? Thanks!
Chuck T

Shooz
Regular Member


Date Joined Aug 2009
Total Posts : 92
   Posted 7/28/2011 3:00 PM (GMT -6)   
I'm still on the pantoprazole and will probably stay on it. I was suppose to see my Dr. in October although now that I'm back in the program I should be getting a call soon to schedule an endoscopy and at that time I should get an update from him on the progress of the study. My guess its still a couple of years away from approval. At the one year mark he did say that the success rate was pretty high. My case is pretty severe and mentioned that the Linx will probably be best used in moderate cases. I still get reminded from time to time that I need to eat slowly and chew thoroughly as some thing still get stuck. I would be curious from other Linx patients if anyone has had a sudden onset of chest (non cardiac) pains. I had them frequently after surgery (Dr thought it may be spasms) and just recently had one after months of none. Given my experience so far I'm very happy with the results.

Again my apologies for being gone for so long. I will try to be better at posting.

To Kitt, I hope you are doing well and thanks for all of your support in the past.

Shooz

Shooz
Regular Member


Date Joined Aug 2009
Total Posts : 92
   Posted 8/11/2011 9:44 AM (GMT -6)   
Hi everyone, just a quick update as I don't have much to report. I got a call from my surgeons office and have scheduled a follow up endoscopy for the end of the month as part of the study. It's hard to believe it has been 2 years already. My Linx seems to be working as promised with no problems. I have been reading about PPI's lately and don't care much for what I have read. Some may remember that I developed a small ulcer near the junction as it appeared that the Linx was leaking slightly. At the one year mark my Doc put me back on pantoprazole and the ulcer cleared up within 3 monts when I went back for the follow up scope. We talked at that time about other types of meds that I may get moved to. We will see what he says now with all of this new data out there. I hope everyone is doing okay. Shooz

Raj2011
Regular Member


Date Joined Mar 2011
Total Posts : 64
   Posted 8/11/2011 10:07 AM (GMT -6)   
Hi Shooz,

Good to know that linx is working well for you. I am curious though, how could the linx leak, since its outside the esophagus ? Was it too tight that it caused an ulcer inside.
Raj

Shooz
Regular Member


Date Joined Aug 2009
Total Posts : 92
   Posted 8/11/2011 12:45 PM (GMT -6)   
Raj,
It appears that it is not closing entirely therefore letting a small amount of acid to come back into the esophagus. At one point I was having a very small amount of burn after eating. It did not last long and was sporadic. This is why my Doc said that the Linx will probably be used for less severe cases than I have. Since back on the pantoprazole I have had zero heart burn. I'm still pretty high on the device and hope for all the sufferers out there the FDA fast tracks the approval. Shooz

Jeronimo
Regular Member


Date Joined Apr 2011
Total Posts : 76
   Posted 8/11/2011 2:05 PM (GMT -6)   
Good to hear from you Shooz!!!

I might be getting the device by the end of the year so Im curious about some things...for example if you do some exercise or go to the gym, does the LINX bother you or give you any problems? Also, did they tell you anything about being able to get MRIs?

Raj2011
Regular Member


Date Joined Mar 2011
Total Posts : 64
   Posted 8/11/2011 2:20 PM (GMT -6)   

Shooz,

Thanks for your reply.  After u get the linx, are u 100% fine for GERD - i know that u are still taking pantaprazole?    Are there any side effects of the linx device...can u feel the device inside u.    Any restrictions on the physical activity, like running etc?  Any do's and don't.

Thanks for your time

Raj

 


Shooz
Regular Member


Date Joined Aug 2009
Total Posts : 92
   Posted 8/12/2011 6:59 AM (GMT -6)   
I don't have any restrictions since the Linx was put in. I do walk every day, several miles for exercise and I'm not a gym person. When it was first put in I was very aware of it and now I don't think about it any more. I do have to be careful when I eat and eat slowly and chew food completely. No more eating fast or gulping food!! I can feel it work sometimes when I eat or drink hot or cold things, I can feel it stop at the Linx and then it open and food or liquid go down. I have no restrictions other than I can't have an MRI. All of my Docs have it in my charts and I carry a card also starting no MRI. Last I heard Torax was working on the MRI issue. My best advise is to take with your Docs and look together at all options. This was best for me as it is reversible. Good luck to all. Shooz tongue

Jeronimo
Regular Member


Date Joined Apr 2011
Total Posts : 76
   Posted 8/12/2011 10:24 AM (GMT -6)   
Chewing everything well and all that might be hard at first, but I think I could manage it, this probably applies to anyone with a Nissen also.

They definetly have to look into MRIs. CAT scans are an alternative but for some diagnosis it might not be enough.

Thanks for the reply Shooz!

Shooz
Regular Member


Date Joined Aug 2009
Total Posts : 92
   Posted 8/12/2011 2:07 PM (GMT -6)   
Jeronimo,
I recently had to have a CAT scan for a problem I was having with my neck. Other than the "warm" feeling (those that have had a scan know what I'm talking about!!) I had no problems. My neck was fine but they found a small growth on my epiglottis and had me scared for 2 weeks until the ENT Doc said it was a harmless cyst. You WILL have to learn to eat properly, just like you mother taught you, chew you food and eat slowly. That's actually not a bad thing. My biggest problem now is weight gain. I can eat pretty much anything I want and it shows!! It is a constant battle to keep the weight off. The best advice I can give anyone on this forum is to talk to your Doc and do your research. Have a great weekend. Shooz turn

Jeronimo
Regular Member


Date Joined Apr 2011
Total Posts : 76
   Posted 8/13/2011 8:50 AM (GMT -6)   
Shooz said...
...just like you mother taught you, chew your food and eat slowly.


Hahaha, I guess so!

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 8/14/2011 2:02 PM (GMT -6)   
If and when Linx gets the nod from the FDA, can we guess which facilities in the US might begin to offer this procedure? I know surgeon's skill is not that critical in this case, however it'll still be important to choose the one with the most experience. The obvious choice would be to use the ones who participated in the clinical trials. Does someone have a list of these places? Unfortunately, I don't think any of these is in the Boston area .. right?

Shooz
Regular Member


Date Joined Aug 2009
Total Posts : 92
   Posted 8/25/2011 9:07 AM (GMT -6)   
I can't believe it's been almost 2 years (9/09) for my Linx!! I had my 2 year endoscopy yesterday and it appears that all is working well. I have to go back to meet with my Doc in the next week to confirm. The photos that I saw (was still a little out of it) yesterday looked the best of my esophagus that I have seen in a LONG time. Hope everyone is doing well. Shooz turn

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 8/25/2011 9:38 AM (GMT -6)   
That's great Shooz.

Tell us more about your well being ...
- Any reflux / LPR symptoms?
- Are you eating comfortably? Still any dysphagia?
- Are you able to eat everything now?
- Are you still taking the PPIs? If yes, why?

Any news on the FDA approval yet?

[Sorry .. I just realized you just covered all these questions just a couple of weeks back in this same thread .. so reply only if there are any new developments ... thanks]

Post Edited (PPI-LESS) : 8/25/2011 9:43:10 AM (GMT-6)


zeldagoblin
Regular Member


Date Joined Mar 2010
Total Posts : 204
   Posted 8/25/2011 9:53 AM (GMT -6)   
Shooz, are you able to tell us how much the procedure cost?

Liz x

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 8/25/2011 11:08 AM (GMT -6)   
Liz - Shooz was part of the clinical trials so he didn't have to pay anything.

This procedure is currently being offered only in UK, Germany and Italy and I think costs north of 5K-6K pounds or so ..

zeldagoblin
Regular Member


Date Joined Mar 2010
Total Posts : 204
   Posted 8/25/2011 11:38 AM (GMT -6)   
Thanks PPI, I emailed the company and they quoted me £8.9K, plus £150 consultation fee. Looks like I am going to have to keep asking for the Nissen :-(

Shooz
Regular Member


Date Joined Aug 2009
Total Posts : 92
   Posted 8/25/2011 2:03 PM (GMT -6)   
Liz,
I was one of the lucky ones that qualified for the study back in 2009. I had to pay for the initial tests, manometry, bravo study, endoscopy and a barium study. After these tests the study has picked up all costs, including the surgery. The study was to be for one year and I have now been asked to stay in the study for the full 5 years. I had my 2 year scope yesterday and will meet with my doc soon to see how I'm doing.

PPI, nothing new to report...status quo at this time.

Shooz

Raj2011
Regular Member


Date Joined Mar 2011
Total Posts : 64
   Posted 8/25/2011 2:14 PM (GMT -6)   

Hi Shooz,

1 more question for you - is there a minimum amount of food/drink needed to open the linx device ?   For example, i would think the saliva would naturally be doing down all the time - does that accumulate there or does it go down ?

Thanks

Raj


Shooz
Regular Member


Date Joined Aug 2009
Total Posts : 92
   Posted 8/26/2011 6:12 AM (GMT -6)   
Raj,
Everything will go down!! Saliva never seems to back up. Too much food especially sticky foods can and usually get stuck. I always have a glass of water with meals "just in case". Small amounts chewed well go down fine. If something does get stuck one of two things will happen, it will eventually go down or it comes back up. I'm not a big hit at parties if it does get stuck!! I have learned over the two years what I can and can't eat and pretty much I can eat anything. I've said many many times that I have to eat slowly and chew very well and I don't have any problems. My biggest problem now is to keep my weight down!! As many have said in this forum only you and your Dr. can decide whats best for your particular case. Once this gets approved (I believe it will be approved) this will be a great choice for many of us sufferers. Hang in there. Shooz smilewinkgrin

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 8/26/2011 9:27 AM (GMT -6)   
Shooz,

A couple of questions come to my mind:

When the food gets stuck:
- Does it hurt?
- Even water is not able to "wash" it down? If water can not wash it down, I guess the water will start to come back up .. which could be quite unpleasant - no?
- If water is not used to wash down, then does the food come back up by itself?

Thanks

4hn
Regular Member


Date Joined Jul 2011
Total Posts : 77
   Posted 8/27/2011 10:44 PM (GMT -6)   
Hi Shooz,

I'm currently live in Indonesia.. Do you think that Link will be available on Asia in the future? Could you ask your doc about this?

I really hope that it will be available on Asia someday...

Regards,

Ahn.

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 8/29/2011 2:24 PM (GMT -6)   
I sent an email to Torax and asked them - if they are working on making LINX available in countries other than in Europe and the US and their answer was:

Yes, they are working on submissions to other countries / markets - but that they can not divulge the submissions and the timelines publicly - and that they'll make this information available on their website when other markets get approved.

So, the short answer is - I guess they are working on making this available in other countries - but since they can not tell us which all and when etc., we can only hope that this gets more widely available.

I am hopeful that in the next year or two, we'll see more markets and more data (on its success/efficacy) emerge from these new markets/patients.

4hn
Regular Member


Date Joined Jul 2011
Total Posts : 77
   Posted 8/30/2011 5:01 AM (GMT -6)   
PPI-LESS

thx for your reply.
hope i can handle to wait for the device available in Asia. Especially my country.

Hope Linx will be the answer for most of us.. :)

Post Edited (4hn) : 8/30/2011 5:09:46 AM (GMT-6)

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