Shooz and Linx

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

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

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

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?

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

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

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?

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)

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 ..

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

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

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.

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)