Frustrated with my doctors? Can anyone help?

[Jay1970]

About four years ago I was experiencing chest pains (age 29 at the time) and went to an ER for care.  They found no cardiac related issue and said I was having an anxiety attack. I began a series of GI tests and the end result was a diagnosis of GERD with esophageal spasms.I took Prevacid for about 6 months ,lost 20 pounds and discontinued the meds for 2 years with only occasional complications,usually after periods of bad eating habits or drinking too much alcohol.

Eight months ago I was experiencing the sypmtoms again, but much stronger this time including heartburn,chest pain, slight numbness in left arm, erratic heartbeat at times, inablity to sleep without "jolting" or "jerking" myself awake.  I went to a gastro specialist and had an endoscopy which indicated I have a hiatal hernia and began taking Aciphex. My Doctor indicated that I should try to manage the issue with meds and change of lifestyle. When I mentioned the erratic heartbeat and "jolting" episodes he did not think it was related to my GERD and said other patients have not complained of this.

Four months into my Aciphex treatment the episodes of sleeplessness continued and I began to have difficulty swallowing at times, a feeling of "paralysis" in my throat that would temporarily keep me from swallowing.  I believed that I might have a sleep disorder and made an appointment with a neurologist to look into it, hoping to find some answers as my quality of life was diminishing as a result of chronic sleep deprivation.  The doctor took a look at my records and the aforementioned "anxiety" attack and suggested that I take Paxil and Buspar as he believed my sleeplessness and jolting episodes were anxiety or depression induced. I did not want to do this, but he asked me to try it for 4 months to see how I feel.

Well, it has been four months now I have gained 20+pounds as most people do on antidepressants and my GERD symptoms are at their worst ever.  My neurologist has performed CT Scans, MRI and EEG testing with all normal results.  Two weeks ago I began to spit up bloody sputum and he has now referred me to a pulmonary specialist to make sure their are no lung disorders present as he does not believe blood could be a result of GERD.

My voice is always very hoarse in the mornings, I have a sore, red throat a lot and none of my symptoms have been helped by any of the treatments and now I have learned via another medical forum that Paxil could be difficult for me to get off of easily.

I have scheduled another appointment with my gastro specialist later this month and plan to ask for funduplication, as that seems to be a better answer than the life-long treatment and the continued discomfort I am feeling.

My questions are - 1.)Can GERD patients suffer from the same types of symptoms mentioned above?
2.)Will funduplication the best solution to this problem
3.) What does bloody sputum indicate in a GERD patient?

Thank You in advance!

[sandy7252]

A related discussion, I am having the same problem with bloody spital was started.

[MrsPooh1]

Tessa  Saw your comments about lifestyle contributing to disease and suffering - think everyone at some time has wondered what they have "done" to be sick.  I have attempted to live very healthy but out of nowhere 30 years ago I became sick with Crohn's and have struggled to keep my head above water for most of those years. I don't do things to be unhealthy and I am still sick. I know a lot of people living very unhealthy lifestyles and they are well. Don't be too hard on yourself.

[Katenyc]

Yoshi,

Lately, I feel like I am my own doctor.  When you have something that's a bit confusing or not a clear diagnosis and treatment, then you have to push for tests, or see different doctors.  It can really be exhausting, and stressful.  And it takes time -- and in the meantime, you're still suffering with whatever it is that is going on that no one can really figure out -- at least not right away, anyway.

Kate

[Kevin Pho, MD]

Erin, GI PA has kindly addressed your questions in her comments below and I agree with her assessment.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.

[tessa0825]

Thanks for saying these things....I am taking compazine to help with the side effects but Im scared to death (because of the surgery 9 weeks ago) of vomitting and tearing things loose in there...I do spend alot of time trying to figure out all these bad things I have done that has caused this and I have never drank (could count on one hand the number of mixed drinks I have consumed in my whole life) but coffee, thats the one that got me I think....I lived on it for yrs. No breakfast or lunch only about 25 cups of coffee everyday and nothing else until dinner time, then we would have a big dinner very late in the evening, because my husband worked long hrs. and didn't get home until 7:30 or 8:00...Not knowing all this heartburn meant anything, so not complaining about it for yrs. didn't help matterrs. I never gave it a second thought and assumed the whole world had daily heartburn....But, we already know what happens when you assume things.... Thanks for your advise...Tessa

[yoshi]

the problem is that we often bounce from one specialist to another .i went to a cardiologist and he said i dont have a problem with my heart,then i went to a GI doc and he said some of the symptoms you tell me are not gerd related.
it seems that we have to be the one who know better,sure,how many years have we spent in the medical field??
a 58 years old lady told me she was diagnosed with gastro problem ten years ago but she is not convinced this is her only problem,so she went to a cardiologist and found 3 clotted arteries and underwent bypass.
todate,she just have her gall bladder removed .
so it is possible to have both heart and stomach problems.
we could be shuttling between specialists,so we go back to our family doctor and what can we expect him to say-he could say he is just a GP,not a specialist,would he second guess what these specialists have diagnosed??
think of the time and agony the individual has to go thru and think of the bills the insurance company is paying ,and lord helps those who dont have insurance coverage!!

[tessa0825]

Your right, It is the forum Dr. he is paying to hear from. However, I find your advise and surgeons AND EVERYONE ELSE'S  advise very knowledgable and helpful in this forum....Two yrs ago I thought I was totally healthy and you could not believe what has happened since....I've had 4 surgeries in the last yr. and two weeks ago began oral prednisone and weekly injections of methotrexate, and right now still fighing the side effects...When its all said and done its all mostly my own fault this has happened...Yrs of bad lifestyle habits...So I come here and tell people in similar situations, to where I have been, what may be in store for them if they don't heed the warnings, from another Pts. viewpoint...I do it in a way that they absolutely know it is just pt to pt support. I have never portrayed myself as anything other than that...Noone told me ( including my Drs.) 30 yrs ago about barrett's esophagus or adenocarcinoma being a possible complication of reflux....I do have hang ups over the GERD/HEART scenario in the ERs...I had a family member with a hiatal hernia and terrible chest pains...Many trips to ER got him no where, always told "its your hernia" Well, he died of coronary rupture following an MI, not of a hiatal hernia....Thanks, tessa

[TJV]

   I feel strongly that a motility study is necessary to evaluate for spasm-- a partial fundo may be a better choice in this case.

He already indicated he had a heart evaluation --however additional tests may be needed -- pulmonary and ENT evaluation would be the next step

  Yes anxiety can cause swallowing problems and a racing heart -- as can numerous other conditions--and medications for that matter-- however anxiety cannot cause bloody sputum

All metabolic causes should be ruled out-- before anxiety is entertained as a primary cause at least.

  One should not choose an anti anxiety-or anti depressant drug based on the fact that it causes weight loss.

  As i said before, choosing the right surgeon is imperative--as is getting a proper evaluation.

[tessa0825]

He doesn't state he had a cariology work-up, He only says he went to the ER and heart problems were ruled out..Unless his ER was very different from the one I have been to then he did not have a cardiology evaluation...The one I have visited performed an EKG and a baby aspirin...When they were confident I wasn't having a heart attacke at the moment I was sent home...I wasn't given a stress test, echo, 24 hr monitor, or event recorder...I was not having a heart attack so it was all ruled reflux related......I wonder how many people go to the ER and find that they are not having a heart attack and perceive that as meaning they dont have any heart disease or coronary problems?....I have a very hard time even wanting to admit to having esophageal problems if I go to the ER for fear it will be "assumed" all reflux related..

[GI.PA]

Yes the tricyclics have problems but without documented GERD (on 24 hour pH) or a response to BID PPI's treating this as "atypical chest pain" from a chonic pain standpoint has been clinically helpful in many patients.  Since this particular patient has tried SSRI's and anti-anxiety agents as well as standard PPI's, and with the associated sleep disturbances a low dose TCA may prove more help than harm and certainly a trial for 2 months has little risk.

[TJV]

  Yes Tessa i just read your post  --  . He does state that he was diagnosed with esophageal spasms through diagnostic testing which causes chest pain -- as well as diagnosed with gerd-- another cause of chest pain- also diagnosed with panic attack--  yet another cause

And at that VERY moment he was having chest pain and other symptoms --his heart was evaluated by doctors- the testing did not indicate a problem with his heart at the moment he had this pain.-- his heart was deemed perfectly normal--and factor all of the above in with his age ---in his 20s --and other indications--   -- it's highly unlikely this person has a heart problem--

  However before surgery - he should be further evaluated of course  He didn't mention to what extent he was evaluated in the first place -- it depends on his location-- some ERS do pretty extensive evaluation.-- i know

And none of his doctors have felt a need to explore this heart avenue further.-- and they know his entire history.  He also didn't mention what tests he's had -We have no clue as to what tests he has had-- as a persons entire medical history is difficult  to fit into a couple of paragraphs.

He could have a sputum culture done to check for bacteria-- he should have a complete blood count-- chest x ray. Esophagitis can cause bleeding from inflamation -- don't know if this is gross Hemoptysis, or streaked sputum- etc. It makes a difference.  Have also heard reports of paxil causing bloody sputum.

  Trying to give him ideas is all-- he may or may not choose to take them into consideration -- in reality- it is the forum doctor he is paying to hear from.

[tessa0825]

Everything surgeon has said is what I just experienced as a reflux pt. preparing to have surgery...My Surgeon wouldn't operate until he sent me for a cardiac eval. I had that performed at CCF by Dr. Rimmerman and it included a stress and echo...As a result I was started on toprol XL that very day....It doesn't matter how much reflux or how bad the symptoms if you are having chest pains you need a heart evaluation...I had chest pains that would take my breathe away, make me break out in a sweat, doubled me over, and make my heart race. My local PCP was having me mix my own GI cocktail (lidocaine, bentyl, mylanta) for them, certain they were esophageal spasms...I have no idea what they were except that since surgery they are gone, but I also started the toprol in the same time frame as the surgery...No more palps either....

[TJV]

  Hi Tessa  I agree A heart evaluation is extremely important with any chest pain  

It doesn't sound like you were having a picnic the way you describe the pain you were enduring.--hope you are much better now.

[tessa0825]

May I ask, are you a Dr.?

[surgeon]

You are getting a lot of very specific medical advice from non-physicians. Here's a couple of points from a physician (even so, not the "official" physician consultant for this site). It sounds as if reflux explains much, if not all, of your symptoms. (The heart racing, the trouble swallowing could indeed be related to anxiety -- however if I were considering operating on you, I'd probably want a heart evaluation as well). The hoarse voice, redness, etc, in the morning suggests aspiration, and that can occasionally cause bloody sputum -- although it would be important to confirm that as the cause one way or the other. When pH and motility studies are necessary is a matter of some controversy; less useful when reflux, with or without aspiration, is clear on other grounds. It's common to have worse symptoms when the weight goes up. If you were able to control symptoms with medications and weight control (some antidepressants typically cause weight LOSS), then you wouldn't need surgery. Antireflux surgery is very effective, however, when done in the right circumstances and by an experienced surgeon.

[TJV]

   1 Tricyclic antidepressants are not generally thought as the ideal treatment for regulating gastric motility --more like pain perception-- as a matter of fact they cause constipation and are contradicted in gerd  as they also weaken LES pressure. They are used more in cases of functional diseases ie viseral hypersensitivity.They can help stimulate the brain to increase the signals which block pain transmission from the abdomen to the brain. .They are used as pain killers in numerous ailments.

2  Most people with gerd have more of a problem with transient LES relaxations than weak LES.pressure  Chest pain is also indicative of esophageal spasm-- a motility disorder- the manometry could show this as well.. If you have a ph test- request a double probe.

  If you have a motility disorder- for example- diffuse esophageal spasms--( you mentioned you were diagnosed with esophageal spasm) a fundo will not fix this-- you will still have pain-- and a partial fundo is better. There are treatments for these spasms- long acting nitrates, calcium channel blockers, botox etc-- depending on the type of spasm-- gerd meds will  help little- if at all.-- nor a fundo.

  You could also evaluate chest pain as caused by gerd with a Bernstein Test (acid perfusion test )

3  You have some symptoms indicative of LPR laryngopharngeal reflux ( sore throat hoarse voice etc) .  This requires more acid suppression -- 50 percent of people with LPR need at least 2 ppis a day to releive symptoms -- and symptoms take much much longer to disapate  

4 You need to be evaluated by an ENT --for sinus problems- for a possible cause of bleeding-- as well as LPR-- a flexible laryngoscopy would be a good idea- this is done right in the ENTs office.  


5 There are strongly suspected  links between gerd and sleep apnea-- have read studies

6  Over Ninety percent of gerd can be controlled by the right med combination-- the right meds are key. Gerd is episodic, comes and goes-- in some cases can go away completely -- or go into remission for years. Not everyone with gerd needs meds for a lifetime. Don't jump into surgery-- it doesn't always work out-- if you do decide --take your time-- research the topic-research other treatments and options- and make sure you extensively research your surgeon.--

Eratic heartbeats-- very common complaint with gerd/ hiatal hernia. Many theories on this involving the structural aspect of the hernia- as well as acid possibly irritating the vagus nerve.

[TJV]

  Tessa  Excellent points. Have read your posts in this forum- and really you shouldn't be too hard on yourself concerning health problems-- many people have led a much worse lifestyle and not had to pay any price at all--- many can get away with it-- much has to do with genetics and such.  

The same things could of happened regardless-- it's not even scientifically clear if acid supression,etc can even prevent Barretts. People using PPIS for years have still developed it.  However knowledge is always valuable armour.

Your story isn't typical-- but you are certainly getting your message across- which i'm sure has benefited many people. Can understand your special passion in the importance of  getting the heart checked out. I feel the same way very strongly about colon cancer-- had a  close relative only in their 30s misdiagnosed with IBS who died of colon cancer. There are exceptions to every rule and that shouldn't be forgotten either.

  You may need a change of dosage to eliminate or alleviate side effects in those drugs you are taking-- even a slight change can make a huge difference..You may want to speak to your doctor about that if problems continue.


  

  

[GI.PA]

Ok..first things first.
You describe a history of chest pains responding to Prevacid in the past which is very diagnostic of an acid related condition.  This is supported by your normal cardiac work-up and young age making cardiac stuff unlikely.  You more recently had you symtoms re-occur and increase in intentsity.  Aciphex has been started and you state that "none" of your symtoms are improved.  If this included the "heartburn/chest pain" senerio, then the possibility that this is non-acid related must be looked into, especially before anti-reflux surgery is considered.

Right off the bat, perhaps getting back on the Prevacid (which worked before) and perhaps even increasing the dose (to twice a day) for two weeks may be an option to be tried.  For reasons which are unclear, some PPI's (like Prevacid and Aciphex) work better for some than others.  If twice a day Prevacid for two weeks makes no difference in your heartburn/chest pain symtoms, then is it very likely that GERD is not the culprit and very unlikely that antireflux surgery will work for you.

If you fail double dose Prevacid, a 24 hour pH probe to monitor acid in your esophogus with careful computer analysis of when you feel your symtoms and the acid level in the esophagus can confirm an acid condition playing a role in your symtoms.  If normal (which it usually is if Prevacid twice daily doesn't help) causes of chest pain not related to acid need to be explored.  This alone is not an indication for acid reflux surgery.  In fact, the ideal patient for surgery is one who get excellent control of their symtoms on meds but doesnt want to take a pill forever.  The farther away you are from this, the less likely reflux is the cause, and less likely the surgery will help you.

An esophogeal motility study can study the contractions of your esophagus to see if there is a spasm componet to your pain.  Acid can be dripped into the esophagus (simulating acid reflux) to see if it brings on an attach of the chest pain (they will test this with water as a control).  They can even give you a med to induce esophagus spasm to see if this reproduces your pain.  If you esohagus has certain abnormal contractions or is already too tight at the lower esophogeal sphinter, you would not be a canidate for acid reflux sugery.

Spitting up blood is always a concern and a pulmonary consult to exclude a pulmonary component of your chest pain syndrome may be helpful but will most likely be normal.

Most patients are able to be tapered off the Paxil within a few weeks of a reducing dose.  As your doctor how to do this if you feel the Paxil is not helping and you want to look into other ways to treat this.  I applaud you on at least giving this approach a try.

A trial of very low dose tricyclic antidepresants (amitriptyline 25 mg)may be helpful with both your sleep complaints and the chest pain.  It is NOT because "this is all in your head".  The same hormones that regulate such thing as mood, anxiety, depression, etc regulate, to an even greater degree, the "motility" (or muscle movement) of the entire GI tract.  At this dose it is unlikey to affect your mood/depression but may have a significant effect on your symtoms.  It is something which must build up a level in your blood, so you must try it for at least 4 weeks, best up to 2 months before writting it off.  Most patients see the optimal effect by week 4.  


Question #1:  Yes...some of these.  I would be very hesitant to say your GERD is attached to the sleep issues, especially the "jerking" or "jolting".  The horseness may or may not be related.

Question #2:  IF your 24 hour pH probe shows that acid is causing your symtoms, and IF your esphogeal motiltiy test is relatively normal (except the finding you typically see with a weak valve), and IF you experience at least 50% symtoms relief with a PPI, then a fundo might be a good option.  Patients who meet the above criteria are much more likely to benifit from a fundo than patients who meet none of these criteria.   I would be VERY HESITANT to suggest this sugery if I didnt have CLEAR evidence it may help your symtoms.  I would make sure all other options were fully investigated first.

Question #3:  Bloody sputum would rarely be associated with GERD or the GI tract.  It is much more likely to be sinus/nose in origin or even pulmonary.

Hope this helps.  I am sure Dr. Kevin and Surg will have some thoughts on this.

GI.PA
Erin