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Depressed by doctor's comment

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GERD & Acid Reflux
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Posted 10/11/2013 4:06 PM (GMT 0)
I've been feeling a little hopeless and depressed for the last couple of days.
I saw a doctor earlier in the week (not the one I usually see for my reflux) regarding getting a prescription for some Carafate. Anyway I mentioned to her that one of the things the gastro consultant told me was that as I am not responding to medication that surgery may be an option. Her response staggered me and has preyed on my mind ever since. She said "keep away from hospitals and surgery! It's a major operation for something so small". She didn't say it in a nasty way, but it frightened me that this was the opinion of a doctor.

Now of course I don't want to have surgery ... I mean who does? But at least I was getting my head around the fact that if all else fails at least there may be light at the end of the tunnel and I might get relief from my symptoms through surgery.
Posted 10/11/2013 4:32 PM (GMT 0)
Noelle, I have nerve damage from a car accident.
I had a neurologist look at me and tell me that yoga and reading the bible would be my cure.
I walked out of there and into another neurologists office and he found the problem and fixed it.

Doctors are only human, and some humans are very opinionated and hate to be wrong and are very short sighted.

I always say, that you should have the opinion of more than one doctor and if you don't feel right about a comment or about your care, see what someone else thinks. You are always entitled to a second opinion, especially if you are not satisfied with how you feel now. Dont just sit back and take it.
Posted 10/11/2013 6:22 PM (GMT 0)
Noelle3

Hi, please don't listen to the doctor. I bet it was a GP that gave you that advice and not a specialist. GPs in the UK really aren't qualified to tell you anything about surgery. They are only good for handing out pills and if the pill can't cure it then they are stumped.

I was talking to a lady who had acid reflux due to a hernia and had the fundoplication operation and she said it was the best thing she had done and the surgeon should have a knighthood. I said to her that I'd heard horror stories about the surgery and she said not to listen to them as it was all nonsense and she was an ex surgery assistant so should know.

The lady gave me the name of the surgeon and I have an appointment to see him.

I'm due to have a barium swallow on the 22nd October to try and determine if I have a hernia and if I do then I'll be getting surgery asap. Like you I don't want surgery - who does but I know I can't keep living with this dreadful pain that I can't control with medication.


Maria
Posted 10/11/2013 6:53 PM (GMT 0)
Hi Noelle and Maria,

Surgery shouldn't be taken lightly, and should be a last resort...but sometimes it's the only answer!  Noelle, it's easy for your doc to say what you're dealing with is such a "small thing"...she's not living with it!

If your health and quality of life are affected and you've tried all the normal interventions to no avail, then surgery is an excellent option.  I was fearful of the surgery and though my PCP tried to get me to have the Nissen for many years, I dragged my feet with the help of my GI doc, who didn't think the reflux was the cause of my lung issues.

Finally, after 6 years of unhealthy lungs and constant coughing, my PCP sent me to a surgeon who did testing and was ready to go.  I went back to my GI doc and finally he took my PCP seriously.  (My PH testing was always very low...either in the normal range or just above.) 

I had the surgery in '09 and the rest is history.  My lungs cleared in about two and a half months, and have been healthy ever since.  (I have had asthma my whole life, and have allergies as well, so I get some lung reactions at times, but NOTHING like what was going on before surgery!)

Don't give up!  Get that second opinion!  I fired one GI doc, and should have advocated for my self better with my second one.  Those scary online posts about horrible outcomes kept me from pushing. (It's important to choose the right surgeon...I also think some of those posts are from people in the recovery stage and think they'll always have the problems they're having post-op.  Many surgeon's don't properly prepare their patients for recovery.)

Best wishes to you both!

Denise

 

Posted 10/11/2013 8:28 PM (GMT 0)
Noelle,

Did this Dr. make her comment simply on your sharing  what your gastro consultant told you and not on any test results ? If you are concerned re her comment versus the one by your gastro-doctor perhaps a second opinion with another gastro would help you.

Many people here have had the surgery and most of them are happy they went through with the procedure.

I wish you the best in making your decision.

Kindly,

Kitt

Posted 10/11/2013 10:35 PM (GMT 0)
I understand your feelings well, Noelle. I've been there often. We start to think the problems are in our head.

We have to keep pushing and advocating for ourselves. I saw my GP today, and left disappointed, instead of hopeful. He was more concerned with one problem, yet I wanted answers for another. I'll go back next week if I'm not better.

Does your insurance allow you to keep pushing with doctors and new doctors? If so, do it! You deserve to feel better.
Posted 10/12/2013 3:26 AM (GMT 0)
I agree with Denise. It's very clear she hasn't dealt with GERD.

Take care,
Bill
Posted 10/12/2013 7:51 AM (GMT 0)
Hi noelle

I suggest you have your ph manometry test before you make judgement and feel depressed. My gp and quite a few doctors I saw told me to consider it carefully and that it is quite a big operation even the surgeon I saw is reluctant to give me an operation . My gp recently has changed his mind and seems to support me now in having an operation as he has seen me suffering for one and a half years. I think as it is a life changing operation which has risks they want you to be at the end of your tether as a last resort. From the results of your deposit, you can see if you have high levels of reflux and how well your les works and from there you can make a judgement.
Posted 10/12/2013 11:10 AM (GMT 0)
Thank you all so much for your kind, considered and informative replies. I read them last night before I went to bed and they made me feel so much better and more hopeful.

I will reply more fully to your comments later on today when I have more time.
Posted 10/13/2013 1:56 AM (GMT 0)
In the last 5 years, I have seen almost 50 different specialists, and very few of them seem to understand how severe GERD can be. The only one who fully believed me when I explained how painful my heartburn is was my neurologist, who can't even help me with treatment for it. When a doctor calls GERD something small, it is clear that they have not experienced the pains we have, and there is nothing to do except move on. My symptoms are so bad that literally any motion from bending over to running to climbing stairs, or sometimes even walking, is enough to make acid shoot up my throat and get in my mouth. When I had my two pH probes, I made sure to give them a sample of me exercising and how much pain I got in a short amount of time and all of my doctors literally thought that the results were just coincidental. Every new doctor I see listens to my long history spanning 5 years now and wants to start me from square one all over again.

Now that I am finally signed up for my surgery, I can say the most important thing you need to do if you want to find treatment is to continue with tests and not appointments. Appointments with GI related doctors tended to be just about useless since the entire time would consist of me explaining my history and the last 2 minutes after the physical checkup being the doctor telling me they had nothing for me. You need to have a manometry, endoscopy, pH probe, and barium swallow done in order to be considered as a candidate for the surgery, so how about moving forward with at least one of those instead of asking to visit another doctor. If the results say you are not a candidate, then you already have your answer. If they say you are, then you can continue to move towards surgery without having to get second opinions on everything you want to know.
Posted 10/13/2013 12:23 PM (GMT 0)
Hi STEPHANIEJEAN,
Thank you for your comments. This particular doctor (GP) is not the one I have been seeing for my reflux. I am in the UK and attend an NHS practice which has about 7 doctors and it is not always possible to see the same one. It can be difficult, but not impossible to get continuity of care. However, the one who has been dealing with my reflux issues seems very thorough so far and compassionate, understanding that this is a very debilitating condition. So I will endeavour to have any future appointments with her and if she is not available for a week or so, I will wait to see her.

Hi MARIA,
It must feel very encouraging to actually talk to someone who has had such a positive outcome from this type of surgery.

Is that surgeon anywhere around SE England and is he private or NHS? I'd love to see someone who was recommended.

Let us know how the barium swallow goes on the 22nd. I'm due to have my PH and Manometry on that day! .. so I'll be thinking of you.

By the way, I tried to get my email to you via the moderators, but I don't think even they have access to people's withheld email addresses. Perhaps that's strictly admin. My current address has my full name in it, so I am reluctant to put it on my profile. I would find it so helpful to communicate with you, so maybe we can find a way around this?

Hi DENISE,
I agree with every sensible word you've written on this! Thank you for your encouraging words.
No-one wants to rush head first into surgery ... but it's so important when everything else is failing to control the miserable symptoms of this condition that there is at least some light at the end of the tunnel, even though that light may be major surgery.

Hi KIT,
I luckily enough see another doctor in the practice for this problem and she seems to have more of a handle on the problem. So I'll be avoiding the one who doesn't seem to 'get' it in future.

Hi LAURIE,
Thank you for your kind words! Yes, we do need to keep pushing and advocating for ourselves. It's tough when we feel so ill, but it has to be done.
I hope you have a less disappointing outcome to your next appointment. Take care now.

Hi BILL,
Yes agree, it's very clear that she herself has never dealt with GERD LOL!

JAMOSCA, having 24hr.PH & Manometry on the 22nd.

Post Edited (Noelle3) : 10/13/2013 6:28:56 AM (GMT-6)

Posted 10/13/2013 4:01 PM (GMT 0)
Hi Noelle

The surgeon that was recommended to me does both private and NHS. He works at Addenbrookes Hospital in Cambridgeshire which is NHS. There is another doctor also that works at Addenbrookes who is very well qualified too. They both do private work together.
The one who I'm seeing specialises in hernia operations and does about 100-200 operations a year.
I'm sure that you could see them at Addenbrookes as we are often told that we can choose our hospitals.
I'll give you their names if you decide you want to go down that path.
I'll be thinking of you also on the 22nd. I'm sure you'll be fine doing the tests - they really were no big deal and at least you'll get some answers when you get the results.
Let me know how you get on.
You can always get in touch with me on this forum as I check it most days.

Maria
Posted 10/13/2013 6:57 PM (GMT 0)
Noelle3

Good Afternoon and I am pleased to know you found some comfort here in the forum as that is what we hope that all the members can take away from being a member of the GERD/Heartburn Forum.

I will be watching for an update and you have received great comments and advice.  Be your own best advocate.

Although most experts agree that patients need to pursue some kind of basic advocacy, providers do have a big responsibility. They need to be transparent about costs, while doing their best to diagnose health conditions in a particular patient. They need to be open and hear what a patient is saying, in order to get necessary confirmation for a given treatment plan. Some providers are better at these things than others, but again, you can be vigilant about your care by researching a particular office to see whether doctors are likely to listen and respond, what their financial policies are, and how organized their staff is. It’s all part of taking more control over your health care needs and how you visit the doctor, and it’s something that will serve you and your family well in the long run.

Remember, patients have rights so educate yourself as well as you can and use this forum to learn from others who have been in your shoes or are still in your shoes.

Gentle Hugs,

Kitt

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