No one will help me.

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zeldagoblin
Regular Member


Date Joined Mar 2010
Total Posts : 204
   Posted 8/23/2011 2:33 PM (GMT -6)   
Hi there guys, I'm back after a long break, I've been steadily getting worse. As many of you know, I've had the usual tests done, upper GI, barium swallow, GI under anaeasthetic, manometry and PH testing. All that came out of it was I have decreased pressure in the lower oesophageal sphincter, and a slight hernia.

The painful throat symptoms are worse. Sore sore throat and ears most of the time, the pain is so bad I want to cry. My stomach hurts a lot when I eat, and I am now experiencing a blood taste in my mouth of an evening, with a wheezy feeling in my chest. I get pains in my chest too, and the most terrible belching. I belch explosively all the time.

My ENT recommended I have the wrap, but said he can't refer me directly, so referred me to the GI. The GI told me my throat symptoms were purely from work (teaching) and tried constantly to put it down to stress. He accused me of "looking on Google for symptoms" and frightening myself. He thought I was only there because I thought I was going to get cancer. He also tried me on amitryptiline, which did nothing.

All this has been ongoing now for about 3-4 years. I was put on rabeprazol, which quells my acid but not the belching and none of my throat or wheezy symptoms have been helped.

So, I went to my ENT in Feb, who discharged me. He said he could see changes in the larynx that could be attributed to reflux, bu the had referred me to the GI and that was as far as he could go with me. So the next visit with the GI came up, and he also discharged me. He said he can't recommend me for surgery, because some people still have symptoms afterward and there would be no point, and because I am young he doesn't want to cut me open. This was in March.

I have since deteriorated. My reflux meds gave me severe anaemia, and so I was told to try not to take so many, and have breaks from them. My throat is raw and red all the time, I have no energy, and I just cry a lot. My children don't have a mother, my husband doesn't have a wife. I am limping through life and just don't know where to turn. I feel I have been robbed of a life. I am only 36 and I feel twice that. My face looked drawn and weary, and my hair is falling out, I am greying very very quickly too. I wonder now who is right? Was the ENT wrong, and my throat problems are something else that he has missed? Or is the GI wrong, and it IS acid?

How can I make these people help me? I am not sure I can get a 2nd opinion, because the GI was the top man in the gastro unit. Who else can I turn to? I just cannot believe I have to live like this!

Thanks for listening

Liz x

aeshleyrose
Veteran Member


Date Joined Jul 2011
Total Posts : 656
   Posted 8/23/2011 2:57 PM (GMT -6)   
I, personally, would beat down doors. You spelled 'anaemia', are you in the UK? If so, I believe that there is a patient ombudsman that you can contact particularly for situations like this. Find out FOR SURE if a second opinion is possible.

I'm so sorry for your suffering. I wasn't there, so I can't speak authoritatively, but if a doctor accused me of "Googling symptoms", that's not only vert serious but also very dismissive. Perhaps you should remind him of his Hippocratic oath. Or possibly just go back tell him that you are suffering and need his help. I know that sounds very humbling, but sometimes it can open doors.

Also, I don't quite know what 'discharged' means. Do you have to start back at square one? If so, maybe it's your ticket to another doctor. Or perhaps call the ENT back and ask for another referral (I have personally taken this course of action before and it worked).

I'm so sorry, love! I hope one of these suggestions helps you. I will keep my fingers crossed that you get some much needed relief.

Best wishes,
Ashley

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 8/23/2011 4:20 PM (GMT -6)   
Am so sorry to hear of your troubles. If you are in the uk you are entitled to a second opinion. Go back to your GP and say you're not in a liveable situation and still need help. Double check that Helicobacter has been excluded. Double check that they have tested your thyroid.

My gastritis makes me anaemic, but I get a higher haemoglobin on ppis. They seem to help not hinder the anaemia. Are you sure you are not losing blood from lower down the GI tract?? The anaemia should not be dismissed as just due to the drugs; push for a clear cause on that too. A haematologist or possibly your GP can tell from your blood results if it looks like you have iron deficiency or chronic blood loss. Look into it. Also, speaking from personal experience, the anaemia makes you feel very cold, very tired and very low mood.

Anaemia and thyroid problems can interrelate; make sure your thyroid function is ok.

Your whole body can be affected by the anaemia; try to treat that too. Don't ignore it as a "side effect" of GERD and meds.

If you are in the UK, I can give you more tips on how to work your way through the system. Please keep knocking on your GP or PCP's door, have a clear agenda when you go or have an advocate with you if you don't feel strong enough. But keep knocking on their door, and ours too!

MMM
New stuff: GERD. Interstitial Cystitis
Lifelong stuff: Food allergies, eczema, asthma

daddypig
Regular Member


Date Joined Aug 2011
Total Posts : 90
   Posted 8/23/2011 5:51 PM (GMT -6)   
I am also in UK, and really sorry to hear of your troubles. Can I suggest you write to the GI spelling out your concerns as you have here, your symptoms, and specifically ask.if he is refusing the wrap and if so on what clinical grounds as you have been advised by another professional, ie not Google, to consider it and copy that letter to both gp and ent and invite them to.comment and liaise. Mark each letter so they all.know who each other is and ask for response within 14 days. You really need some progress and or answers and it sounds like your relationship with GI is shot anyway. As has been said bang the doors!!

For my sins I am a litigation partner in a solicitors firm. You tend to find an old fashioned letter of complaint can shake things up. I had the wrap last week.

Not sure if this is kind of advice you were looking for or if it is appropriate for you so sorry if it isnt. However you tackle it please dont give up, and good luck.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/23/2011 5:55 PM (GMT -6)   
Zelda, You remember me telling you long ago, "the squeaky wheel gets the oil". So squeak loudly! :)
Joy

sk55
Regular Member


Date Joined Jun 2011
Total Posts : 225
   Posted 8/23/2011 10:01 PM (GMT -6)   
you should get a second opinion.


I had the exact same thing happen to me, had to see 2 Gastro and 3 Ent to point me in the right directions.

It sounds like you have silent reflux or LPR.

LPR is advanced form of reflux, i dont think many GI understand it, thus they dont know how to treat it.

You need a Good GI to give you meds and proper diet tips to reduce reflux or Surgery if needed.


I am sure you if u search LPR on these forums, you will find a lot of good TIPS from the members.

you also need to relax, stress will make it worse.


When visiting a new GI, don't mention the internet/ forums when talking about your symptoms. They tend to think its all in your head when you talk about searching the internet for symptomps.


Jesse

zeldagoblin
Regular Member


Date Joined Mar 2010
Total Posts : 204
   Posted 8/24/2011 1:59 PM (GMT -6)   
Thanks for your responses guys.

Ashley, yes I am in the UK. I think you are right I am in definite need of a second opinion, that will have to be my next move.

MMM, Yes, I had the Helicobacter test and thyroid checked, both came up normal. I am just feeling so confused and lost! The problem I am having is that I went to the GP initially 4 years ago because I couldn't sing anymore, and I had a croaky throat. It went from there to a globus, which got the ENT involved, who thought acid might be the issue. The trouble is, once I was sent to the GI, the throat things got ignored, and all the acid tests came back normal, leaving me to wonder if the throat problems have been properly diagnosed. It is the throat problems I wanted fixing, but everyone has forgotten that. So I am worried that an operation won't fix it. I think a clear agenda is what is missing here.



daddypig, the reason my GI gave for not recommending the wrap was that he said there was insufficient data from the tests to warrant it, and that he felt the side effects would outweigh the benefits. I don't know how I will feel afterwards, but I am certainly suffering horribly now!

Hi Joy, yes, I do remember you saying that, and I have since been making a lot of noise, but sadly my GI thinks I am just a psycho stress head, and a "cyberchondriac". I can't live this way though, so I must make more noise :(


Hi Jesse. I agree with you, they do not understand the problem. I have heard that LPR sufferers often come up as normal in alot of tests, and the ENT seemed to understand this well, sadly the GI is a very condescending and arrogant man, who clearly doesn't appreciate another consultant telling him his job. He was constantly in touch with the GI, but the latter wasn't receptive. I never mentioned the internet to him, or even that I had heard of LPR, but he judged me nonetheless. He asked me about my family life, and when I said they were very supportive, he replied, "Oh come on! You have 2 sons don't tell me they don't stress you out!"

Anyway, thank you all so much for your replies. It has been very hard to keep up the fight, esp since I have to cycle miles to the hospital for my appointments, it is very wearing. I feel a renewed determination to get help, thanks for the encouragement.

Liz x

Post Edited (zeldagoblin) : 8/24/2011 1:16:14 PM (GMT-6)


mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 8/24/2011 6:03 PM (GMT -6)   
Liz,

Have you considered a private consultation with an ENT specialist? Going private was the only way I was able to move forward having had a "failed therapeutic relationship" with the GI surgeon I got sent to. Basically he had no input channel and wasn't interested in anything I had to say, didn't even take a proper history! Anyway, you are entitled to a second opinion, so it may be worth trying to find out who is recommended (or who has a big private practice!) and asking to be referred to them. Named consultant referral is no longer the "automatic" system but it is still possible. You will have to spend much time on the phone to the appointments office ("choose and book" - no choosing offered in my experience!!) and be prepared to wait. Or try paying for a one off consultation, as you may then be able to be transferred to his/her NHS list).

Do some digging around on who you want to see, then tell your GP you want a second opinion and who you want it from!

Keep calm and carry on!!

MMM
New stuff: GERD. Interstitial Cystitis
Lifelong stuff: Food allergies, eczema, asthma

zeldagoblin
Regular Member


Date Joined Mar 2010
Total Posts : 204
   Posted 8/25/2011 10:36 AM (GMT -6)   
Do you know how much that would cost MMM? I have thought about private but I am really in no position to pay and have no health insurance. Thanks for your input

Liz xx

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 8/25/2011 12:46 PM (GMT -6)   
I think a consultation can be around £100 to £150. If you've got a private hospital near you they can give you an idea of the fees. If you know who you would like to see, you could also ask their NHS hospital sec what the fees are. Sometimes just saying you want a second opinion is enough to shake the tree and get some action!

If you can't fund the private route, an alternative is to speak to the secretary of the consultant you did see (but didn't like) and say you'd like to chat to his staff grade or registrar; there's a chance that they might be more receptive.

Third option would be to tell your GP you want a second opinion and ask to be sent to a neighbouring hospital (not the place where you saw the other one). You could get referred to another consultant within the same hospital, but it may be bit awkward depending on their relationship with the one you saw, and even if they happen to hate each other they will still probably defend a colleague!

I was a medical secretary (just plotting my return to work now!) so I know my way round the system!

MMM x
New stuff: GERD. Interstitial Cystitis
Lifelong stuff: Food allergies, eczema, asthma

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 8/25/2011 12:47 PM (GMT -6)   
PS: Sorry, fees probably higher if you in London area!
New stuff: GERD. Interstitial Cystitis
Lifelong stuff: Food allergies, eczema, asthma

poovey
Regular Member


Date Joined Feb 2011
Total Posts : 31
   Posted 8/25/2011 12:56 PM (GMT -6)   
Hi Liz,
I also had anemia caused by many years of PPI usage. I had to have a few iron transfusions and I also developed vitamin deficiencies. I too had throat and voice issues as well as breathing difficulties. When I went through the normal tests the pH study showed that I did have reflux and was a candidate for surgery, but the surgeon said that it did not show acid up near my larnyx so he was reluctant to do the surgery. He then had me to a 24 hour impedance test which showed that I did indeed have reflux reaching that high. I had the surgery 5 weeks ago and have not been on any reflux drugs or asthma drugs and have no signs of reflux. My voice is back to being more normal and my cough has improved a great deal. I am with the others concerning a second opinion. Sometimes some of us have non textbook issues that need to be researched further. I was lucky enough to have a surgeon that worked with me. Please go for a second opinion. There is a surgeon out there somewhere that is waiting for you to come for help:)

zeldagoblin
Regular Member


Date Joined Mar 2010
Total Posts : 204
   Posted 8/25/2011 12:57 PM (GMT -6)   
I see, well I think I will start by going to the original guy and saying I can't live this way. He did say I could go back "whenever I like". I'm not sure how sincere that was but I intend to take him at his word.

I find it all so confusing, I need THEM to tell me that an operation is the right way to go. I don't know because I still ave no idea why my throat and ears are so sore and my chest is wheezy at night. If it IS caused by LPR, then I wish they would tell me that!

I am back in the doctors on Monday to ask for a re-referral. Wish me luck :o)

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 8/25/2011 1:42 PM (GMT -6)   
Liz, here in the UK some GI consultants seem to be surgeons only, whereas others seem to be both a physician and a surgeon. The one I saw was "Dr" (i.e. physician/surgeon) rather than "Mr" (purely surgeon). Surgeons are often not people people - short bedside manner etc, but are highly skilled in the theatre - they are more "techy" than "touchy feely" people. The consultant I saw was a physician as well as a surgeon and he was positively charming and very sympathetic - nothing like the grumpy purely surgeon surgeon that I saw first!

Go back with a clear idea of what questions you want to ask - possibly have someone with you who sits quietly with a checklist and can nudge you if you forget anything!

Good luck!

MMM
New stuff: GERD. Interstitial Cystitis
Lifelong stuff: Food allergies, eczema, asthma

zeldagoblin
Regular Member


Date Joined Mar 2010
Total Posts : 204
   Posted 8/25/2011 3:47 PM (GMT -6)   
Strangely, my case was the exact opposite. The "Mr" was the ENT consultant, who was lovely. Very personable, gentle, and extremely sympathetic. The GI guy is a "Dr", and is the most arrogant and condescending man I have ever met. He isn't the surgeon who performs the Nissen though, he is the one who can refer me. I am going to ask if I can at least talk to the surgeon himself, and see what he thinks.

elsiem
Regular Member


Date Joined Jul 2011
Total Posts : 131
   Posted 8/25/2011 5:26 PM (GMT -6)   
Hi Liz.

Im so sorry to hear you are having so many problems getting help from the medical professionals.

Are you able to get your GP to refer you directly to the surgeon who performs Nissens & bypass this arrogant GI guy.

Here in New Zealand all referrals go through the GP. My GP referred me to a GI Doc who did all the tests then reported back to the GP & the GP then referred me on to the surgeon.

I hope you get some satisfaction soon.

Take care

Lynda

mock turtle
Regular Member


Date Joined Mar 2011
Total Posts : 467
   Posted 8/25/2011 5:44 PM (GMT -6)   
im so sorry for your pain and fear...im there

what are your options for a procedure?... fundoplication...linx?
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