Hiatal hernia + 3 fractured vertebrae = pain/fear for life

[sailorjon]

I will try to explain my situation. I've gotten some great info here but still I don't know what to do.  I am 60 years old.

 

Over 3 months ago I fell on my butt, hard. I began having sharp pains in my back soon after.  When bending, twisting, getting up.  These increased in intensity over the next couple of weeks until I went to hospital for x-ray.  Compressed fracture of 3 vertebrae.

 

I was given some pain pills and told there was nothing to do but wait for the body to heal.

 

About 3 weeks later, I started experiencing a bloating feeling in abdomen, it was hard all the time like a basketball, even if I hadn't eaten.  Then, pain started in the upper left abdomen near the ribcage and gradually increased until it became unbearable and an emergency and I rushed to the emergency room of nearest hospital. [thainakarin - this is another story for those intersted I would write it about the predatory practices I have encountered]

 

Trying to be brief:  Many unecessary tests later and with my near empty bank account blinking red, the surgeon I saw next said everyone is guessing until you get a ctscan we won't know the cause.  [I later found out a barium xray for about 1000bt could have discovered it].  I had to borrow money, etc, etc.  The price kept going up and then got it: 21000+ for ctscan and the hiatal hernia was discovered.  So about 30000+bt later I was diagnosed but no treatment yet and unless I came up with the cash, evidently I could suffer and die.  [before you ask - going back to usa is not an option, financially or in any other way.  Nobody there.  I've lived here 3 years.]

 

I was told by the surgeon I needed an operation to pull the stomach down and that it was very expensive. I couldn't get a firm price, one person said 2-300,000 bt. Clearly, out of line with the real costs.

 

 At this point my daily life has been stopped dead in its tracks, I can't do much at all, I fatigue very quickly, any activity starts to trigger the pains.  I can't lie down to sleep but must sit up. 

 

I was referred to Ramathibody Hospital as a more economic alternative with quality care. 

 

I think the young doctor has been trying to help me but he has so many patients to see.  He didn't really do a physical exam, or ask about medications I have been taking or much about medical history. 

 

 He said this is not life threatening and he has had many patients with hiatal hernia like this live with it for years.

 

Obviously, conditions are different for different people.  I can't imagine living with this hernia.  Even if most of the great pain comes from the back injuries the hernia is a big detriment to living for me.  I look pregnant! My abdomen is hard and big like a basketball even with nothing eaten. Very uncomfortable.  I am severely constipated, takes days for bm.  And again, pains are strange.  Sometimes come for no reason, but they are definitely triggered by movement and position.

 

Now, here's where it gets more confusing.

The doctor at Ramathibodhi then said that the pains I describe are atypical for hiatal hernia and that they are probably from the back injury radiating along the nerves.  I had been thinking only the pains directly on the back were from vertebrae.

 

If I walk now, after about five minutes I'm short of breath and have to rest.  Same happens getting up from bed or chair, sometimes takes 5 minutes to get my breath back.  Sharp, shooting pains accompany this.  Often on my side upper, or the back of shoulder blade, or middle of back, sometimes even lower left abdomen. 

I am very confused.  Reading this thread: https://patient.info/forums/discuss/bloated-swollen-in-pain-from-stomach-hernia-271484  there are many people with only a hiatal hernia problem and not the back injury with some of the same pain and bloating symptoms I have!

 

I was about to try to just get the money for the hernia operation thinking I would be relieved of daily and nighly pain and be able to recover when I received this information.  The doctor said would I blame him if did the operation and then the pain was still there because its from the back.      I asked is there a way to confirm?  And so he wants me to consult with a neurologist.  Does anyone know if a neurologist can do that?  He does not know he said.

 

Then, he wants to do an endoscopy to see if there is something else that is the problem.  Like a gastric ulcer.  Ok, endoscopy could be a good test but it seems the pains and abdominal discomfort must be from the recently fractured vertebrae and the herniated stomach.  And.. Even though it's a public / teaching hospital, Ramathibodhi they keep charging me double or more.  Endoscopy, they said maybe 10-12000.  I'm told Thais pay 3-5000bt.  Hernia operation maybe 120000 or more.  Even the blood tests they wanted were double so I went to Bria labs myself for them and saved 1300 bt.

 

This has really scared me. I am checking out insurance plans now so I am better prepared for situations in the future but am in a bind right now.  [Pacific Coast plan is the way I'm leaning now but… it seems neither of these injuries will be covered because they will be pre existing conditions.  Anybody know a solution to that, I would be interested]

 

If there are any ideas about this situation or advice I would appreciate it very much.   I continue to live with this painful condition day and night as my body gets weaker and I hope the situation doesn't get worse.  With all the conflicting stories, I don't know if maybe this could become life threatening or not but I do know it is getting harder to bear.  It's harder to get pain pills and have to pay doctor and hospital fees.  Doctor admits may take more months for back to heal but gives 10 days of pills.

 

 

… oh, I have many students in Taiwan and they have a very good health care system there, so I searched online and found a clinic that just does hernia operations.  About the same price as what Ramathibodhi quoted $4000 u.s.,  must stay 3 days in hospital.  I told them about the endoscope suggestion the woman on phone said doesn't think necessary.  I am going to speak with her by Skype tonight and will mention the theory of pain from the back not the hernia.  Sorry for the long post.  Thanks.

 

[Sheryl]

Do not rush into surgery for the hiatal hernia. Hiatal hernias can cause a sense of bloating but do not usually cause severe pain other than the pain due to reflux (heartburn). The severity of abdominal pain you describe does not sound likely to be attributable to the hiatal hernia alone.

 

Also, your back condition may not have been properly managed. It is unlikely that the compression fractures were due solely to falling in your rear - there was most likely some significant osteoporisis present to begin with.  That as well as the status of your fractures needs to be carefully evaluated by a spinal specialist. If osteoporosis is present then specific medications for that are indicated, not just pain meds.  And if severe pain persists more than a few weeks, surgery may be indicated.  Pain from the spine can radiate to the abdomen.

 

Not to frighten you, but unless you are a woman and/or smoker and/or very obese,   the presence of severe osteoporosis may indicate bone metastasis from a tumor elsewhere in the body so that also needs to be  considered. It would be very unusual for a non-smoking male age 60 to have severe osteoporosis.  If on the other hand you are a woman and heavy smoker, significant osteoporosis would not be unusual.

 

Since you are running out of money I suggest you go to Chulalongkhorn hospital and make use of their after hours clinic (13th floor of the main OPD building; "clinic nawk wela"). Try to get an appointment with:

 

1. One of the following spinal specialists (in order of preference)

 

Assoc. Prof.Dr. Tawechai Tejapongvorachai

 

ASSOC. PROF. WICHARN YINGSAKMONGKOL

 

Assoc.Prof. Dr. WORAWAT LIMTHONGKUL

 

2. One of the following GI specialists:

 

Assoc. Prof.  Rungsen Rerknimitr

 

Dr. RAPAT PITTAYANON

 

Dr. Piyapan Prueksapanich

 

 

You will have to go in person to make these appointments. When you do, go around 3 PM and first register and get a patient card on the ground floor, then go up to the 13th and talk to the nurse about booking. There may be a bit of a wait list.

 

Gather ALL records to bring with you to the appointment, including actual films of the CT (usually on CD) and all spinal films.

 

While waiting for the appointment, if you are male I suggest to get a PSA level done unless you have had one in past year. If you are female, then a CEA25 and mammogram, and in either case a Chest Xray (again, only if not done in past year). These can be done at the checkup dept of any hospital - and will cost less at Chula. You could do it on the morning of the same day you go to make the specialist appointment. These are suggested to help rule out possible tumors of breast, lung, prostate or ovaries.   Do not freak out if results come back elevated as there are non-malignant causes of elevated levels as well, but the information will be helpful in sorting out what accounts for your osteoporosis and your abdominal pain.

 

While all this is being dealt with do not try to do anything about the hiatus hernia other than take the medications you have presumably been given, avoid lying down for 2 hours after eating, elevating the head of your bed, and eating frequent small amounts rather than full meals.

 

 

 

 

 

 

[Sheryl]

P.S. Forgot to mention:

 

1 - when you see the spine specialist ask if a back brace would be helpful

 

2- If it is any comfort, from your symptoms, a CT was indeed indicated. They did not do it looking for a hiatal hernia, that was just apparently the only thing they found on it. No one would be thinking hiatal hernia based on your symptoms, They did it the CT to rule out an abdominal mass. Even if they had already known you had a hiatal hernia, with abdominal symptoms that severe they would have still had to do a scan. A barium swallow would not have done as it only shows the stomach and upper intestines. They needed to look for possible masses anywhere in the abdomen.

 

A good idea to get that CT film read by another doctor, though, just in case it shows something they missed - as can sometimes happen.

[Flustered]

Stop worrying, if it's an hiatal hernia it is common as muck and millions of people live with it. It is where the diaphram is stretched and cannot stop stomach juices etc from regurgitating. yes it's uncomfortable but easily controlled. There are not any guarantees from operating on an hiatal hernia.

 

An endoscopy will tell you exactly what is wrong. I had exactly the same symptoms as you and it turned out to be an hiatal hernia together with an inflamed stomach lining due to aspirin that I was taking as a blood thinner for a heart issue.

 

I now take Lansoprazole first thing in the morning and have never had any issue since.

[sailorjon]

Thank you Sheila very much for the great advice.  Its' been a difficult few days. 

 

'h.h. can cause a sense of bloating' 

ok, but what I'm experiencing is not a sense of bloating but an abdomen that is distended and hard 24 hours a day.  Firm, taut like a basketball.   maybe that's the h.h. though...yes?

 

I think you are right about my back condition not being properly managed and as soon as I can I am going to the night clinics to find the experienced orthopedic doctor from your list.

 

They gave no meds for osteoporosis.   The osteoporosis may have come from long term prednisone use for a skin condition that also was not diagnosed or treated properly.  I'm not sure.

 

I am male, btw. re: avoid lying down for 2 hours after eating:  I cannot lie down, I get severe abdominal pain if I do.  I have been sitting up in bed for over 2 months.  Not much sleep, and probably not great for the injured vertebrae as I sometimes slip into a position that puts stress on them.

 

I did have a skype call with the surgeon in Taiwan from the hernia clinic.  He also says the h.h. can wait it’s not dangerous and to get orthopedic help for the spine.  Amazingly nice man who took 20 minutes to talk to me about this.

 

 Thanks, Sheila. I will continue trying to get treatment.

Edited April 8, 2017 by sailorjon

[sailorjon]

Thanks Flustered.  It is helpful to know that with the hospital pushing for an operation [the private one] the best information is from other people who have experienced this.   It's strange , though,...  Did your abdomen become hard and big like basketball 24 hours a day?  And severe constipation.  I will take your advice and have other doctors look at the ctscan and try to get an endoscopy asap.

[Flustered]

1 hour ago, sailorjon said:

Thanks Flustered.  It is helpful to know that with the hospital pushing for an operation [the private one] the best information is from other people who have experienced this.   It's strange , though,...  Did your abdomen become hard and big like basketball 24 hours a day?  And severe constipation.  I will take your advice and have other doctors look at the ctscan and try to get an endoscopy asap.

If I had not had my appendix out when young, I would have thought it was appendicitis. I can't honestly remember my stomach being bloated but that could be a gastric disorder that an endoscopy will see. The endoscopy is much quicker and gives a clear view of what going on in the stomach.

 

Good luck and keep us informed.

[Sheryl]

The constipation would explain the hard abdomen. The question is, why the constipation? It has nothing to do with hiatal hernia, they do not cause constipation. Bear in mind that hiatal hernias are often an incidental finding, many people with them are asyptomatic or just mildly symptomatic (heartburn being the most common). The fact that you have a h.h  does not necessarily mean it is the cause of your various symptoms. If you have been taking any sort of opiate (codeine, morphine etc) for the back pain, these are very constipating and it is not unusual for it to reach the stage of fecal impaction in someone taking these regularly (which will definitely make the abdomen hard and very uncomfortable).

 

You may need to use suppositories or a self enema initially just to get the backed up hard material out. The longer the constipation goes on, the more difficult to resolve it becomes and in severe cases it may require a  manual disimpaction by a doctor.  You can get glycerine suppositories and small pre-filled bulk enemas at any pharmacy. There are also medicated suppositories (bisacodyl etc) but start with just glycerine as the medicated ones will cause cramping which will add to your misery in the short term. Start eating prunes and oatmeal or all bran cereal daily, can also take pysillium but prunes and oatmeal/all-bran cereals are easier to find. If you are taking opiates now, try to stop or reduce as they will otherwise continue to aggravate the constipation.

 

In terms of endoscopy - at your age a  routine colonoscopy should be done every 5-10 years, and definitely when there are abdominal symptoms and change in bowel pattern.  If you want to be thorough could do both ends, and this can be done at the same time while under the same sedation. once. The first GI doctor I listed is a specialist in endoscopy. Let him look over the CT films first then discuss with him in detail your symptoms (the pain, bloating, constipation etc) and ask him whether he thinks both upper & lower endoscopy is indicated.

 

However in the meantime try to resolve the constipation as you may find that you feel vastly better once you have.

 

This  could all be as simple as pain and bloating from severe constipation (or even fecal impaction)  plus some referred pain from the spine, but there could also be an as yet undiagnosed issue and that needs to be ruled out.

 

Prednisone indeed can case osteoporosis so that may explain it.. Discuss with the spinal doctor how advanced it is and treatment options.

 

 

[Bundaberg Baxter]

Unison enema can be bought a 7/11 for 9 baht, and they work a treat

[sailorjon]

Thanks Sheryl and everyone.  Good advice.  I know what I have to do. Night clinic doctor appointment first priority.  Try to solve the constipation problem.

Ha.  Perhaps its good I'm in BKK because, honestly I couldn't do the enema myself, reaching and bending trigger the vertebrae pain the most... but perhaps i could take it to the prostate massage places I've seen advertised and make a deal.  .. I have to find some humor in this situation...

 

oh, i read on one of the forums for patients that magnesium citrate is used b/ surgery to clean out intestines etc.  I wonder if this would work, I will research it..

[sailorjon]

If anyone knows how to view the ctscan files without the cd please let me know.  I copied the cd to a doctor and he said he couldn't find the ct scan.  Perhaps he needs his own viewer, I'm not sure...

[Sheryl]

If you have the actual films, that is OK. Need either the CD or the films. (But with the films, the doctor has to physically have them in order to view).

[sailorjon]

Ok. I went to the Chulalongkorn night clinic yesterday.  Long day.  Nearest appointment with the orthopedic surgeon, Dr. Tawechai would have been May 29 but I was able to wait and get a walk in appointment that night after the others. I feel lucky about that.

 

Disappointingly, he didn't even want to look at the CT scan but said I need to get an MRI and a Bone density test.  I thought the CT scan would cover everything but I guess not.  MRI 10000, Bone density: 3000.

 

He seems like competent doctor.  xray and doctor fees here higher than other hospitals I have been to though, strange.  

 

I have hope that if he can, he will have some idea of a treatment next.  Whether I wait for healing or some surgical intervention is necessary.  

Does anyone know that MRI is needed if you have a CT scan?  Granted the CTscan was abdominal and only tangentially picked up the backbones.

 

He also prescribed some useful drugs which the other places did not:

for osteoporosis:  KAL - SEE fizzy tablets with Vit C, Calcium Carbonate, vit d, citric acid and vit b6

 

for pain:  tramadol with paracetamol - weak but something

for constipation:  some kind of laxative pills

 

I have to take another trip there tomorrow to book the appointments for tests, even though I don't have the money yet for them.  They don't book appts. over the phone.

 

drugs: 525, dr. fee: 400  hospital fee: 400

 

 

 

[Flustered]

Good luck Jon.

 

You have exactly the right attitude...laugh at it. Many people do not understand what pain is and when you have it you can cry or laugh. Laughing is best.

 

I had a friend in the army many years ago who was constipated for 26 weeks (that's arrny food for you). His stomach was like a basketball and his back hurt like hell due to the pressure of the compaction on various organs and bones.

 

In the end, they operated by way of heavy laxatives, sedation and a manual evacuation. He said afterwards that he now knew how women giving birth felt.

 

Bottom line, tough it out, keep your sense of humour and do what you think is best.

 

Good luck.

 

[Sheryl]

Abdominal CT scan will not be of any use for looking at the spine, and MRI is better for spine than CT

 

10,000 for a spinal MRI is a very good price in Thailand and less than you would pay in a stand-alone imaging center. . 3000 for bone density is just a little below  average.

 

There are stronger medications ghat can be used for oseteoporosis, he may decide once he sees the results of the bone density scans

[sailorjon]

Thanks for the comments.    Flustered, maybe that's what's happening with me.  Sounds right.  I'll try to communicate this to the doctor I see about the hernia because it hasn't been mentioned.   That procedure will be a wonderful challenge for laughter.  

 

Sheryl, thanks for the info.  I have the MRI appointment first week of May but may have to change it to get more money for it.  The nurse told me to call the night clinic number when I had it but can't get anywhere with it, I might have to go in person to get another appointment.   Hernia action is on hold for now, I have to do one or the other first.     Meanwhile, I am dealing with it, life slowed to a crawl.   And trying to choose health insurance plan for the future.  I will post about that next in the other forum.

[sailorjon]

Hi all.  I have an update and any feedback would be appreciated.  Tx.

 

Yesterday, I had an appointment with Dr.  Piyapan the gastroenterologist recommended by Shiela at Chulalongkorn hospital.   I was impressed with his level of English and ability to recognize some subtle aspects of this confusing condition that the other doctors ignored.   My intention was to explain the history of my 3 fractured vertebrae and hiatal hernia that I have been suffering from more than 3 months without noticable improvement To report the other doctors recommendation to get an endoscopy to see if there were other conditions contributing to my pain such as gastric ulcer Get an answer to why my abdomen is bloated, hard, and uncomfortable 24/7 Especially, get answer to shortness of breath problem which continues.   If I get up and do anything for even 5 minutes often I am gasping for air. To try to get some treatment plan and proper medications   The Dr.'s advice Endoscopy not needed, won't show more Thinks the h.h has been with me for ages perhaps, but the fall made it worse Mentioned a thick abdominal wall… and there being lots of  air in the abdomen after thumping it and that is the cause of hardness. When asked where from and why, had no firm answer Advised this is not the time to deal with h.h. but the plan should be: Clear the back problem, get the mri [I have appt for mri may 7 already] Lose weight Take medicines he prescribes for coping with h.h.   Next appointment, one month.   So, I continue to go to doctors, pay to hear my conditions, and be told to wait more months…  My daily life is reduced so much by these conditions I just wish I could take some action.   Also, regarding eating just a little and full [actually full , bloated feeling always] and constipated and days to go toilet…  he suggested dealing with that now too through the meds he prescribed.   He noticed I am stuck in the middle between these conditions in many ways,, ie.  Back injury requires lie flat, but hiatal hernia pain when lying flat prevents it When the pain is great I need the pain pills but the pain pills increase the constipation I need to lose weight but am unable to exercise, bend, exert myself   Re: shortness of breath.. He suggests it’s the pressure from thick abdominal wall on the lung   The medications he prescribed: Forlax for constipation - which is a Macrogols or polyethylene glycol, an osmotic laxative and bowel cleaning solution   Molax - for constipation - which is Domperidone maleate…  an anti nausea, vomiting medicine which I have not had a problem with.  However, it speeds food through the intestine which may be the reason for it.   And I continue with omnaprozole, prednisone, hypertension med, and pain pills     BTW, the side effects of most of these medicines also include the symptoms I have, the list seems useless…   The source of pains are confusing, recently the pain has stopped moving around as much and there is one consistent sharp pain when reaching is centered under right shoulder.. Also, pains in the center of the back where the fractured vertebrae are unless I stay completely still… Aching under upper left abdomen often.. I'm told back injury can radiate pain to front and h.h. can radiate pain to rear.. So..   If I must do nothing regarding the hiatal hernia until the back condition is cleared and I have lost weight.. That could be 6 months or more, if I can lose weight without activity..  If the laxative treatment doesn't solve the bloating and air in abdomen problem then that condition will remain during that time ie  daily nightly discomfort.   And, I am experiencing swelling, or pitted edema on my legs and feet everyday usually in evening…   I go to get the MRI on may 7 and then I will hear what the Orthopedic surgeon says about an action plan and treatment for the back injuries.   Thanks for all your comments.

[Sheryl]

4 hours ago, sailorjon said:

BTW, the side effects of most of these medicines also include the symptoms I have, the list seems useless…

 

 

 That is exactly correct and it is going to be difficult if not impossible to get out of this mess unless you can get off some of these medications.

 

As mentioned before the constipation is direct result of the pain meds and also the likely cause of your abdominal discomfort. You need to get the constipation dealt with  and that will be difficult  without at least reducing  the pain meds.   See if you can get by on just paracetemol or NSAIDs during the day and keep it to one dose of stronger med at night - if you don't, the abdominal pain and bloating will likely continue. (I realize you have bad back pain, and I am not minimizing . But you have to weigh that against the pain and discomfort caused by the constipation, as the lessening of one worsens the other).

 

Why are you on prednisone? You had mentioned being in it in the past, I had no idea you were still taking it. It is a very serious drug with serious side effects  and likely contributed to the back injury. It may also be the cause of both the shortness of breath and the edema (swelling of your legs). Who has prescribed it, and for what exactly?

 

If you can get off the prenisolone you may be able to get off the omeprazole as well as that may hve been prrewx ribed to protect from gastric ulcers which are also a side effect of prednisilone (the fact that you have a h.h. in  itself does not  require omeprazole, only  if you are experiencing painful acid reflux). However, t do not stop the prednisolone abruptly on your own,  it needs to be tapered off.

 

I doubt the domperidone  will do much and if I were you I would hold off on it and concentrate on resolving the constipation first. As you are already suffering from the ill effects of various drugs you really do not want to add to the mix unless you absolutely have to.

 

Have you started to eat prunes daily as suggested?

 

Because until you have resolved the constipation -- which is almost certainly due to the opiates - there is no reason to think your abdominal symptoms are due to anything else. The fact that you have a h.h. does not mean it accounts for these symptoms, from what I understand of your history it all started after the fall and going on the pain meds and getting severely constipated. The h.h., you have probably had for years without even knowing it.

 

While the edema in your legs/feet coupled with the shortness of breath could both be due to the prednisilone,  these can also be signs of a cardiac problem. Have you had a recent check-up with a cardiologist?

 

In summary:

 

1.  TREAT the constipation:

 - laxatives as prescribed initially but these are not things to take daily, so it is essential you do the other things as well (see below):

 - prunes and bran cereal daily

- glycerine suppositiories and/or enema if necessary.

-minimize the pain meds (other than paracetemol). I can't emphasize enough how interlinked they are to the constipation which in turn is likely the cause of all or most of your abdominal complaints.

 

2. Get off the Prednisiolone in consultation with appropriate specialist - I can't suggest more than that not knowing who put you on it and why.

 

3. Either consult a cardiologist re the leg swelling and shortness of breath now, or wait and see if it improves once off the prednisilone and if not, consult one then (your call, but if it were me I would likely try getting off the meds first, especially if I had had recent check ups that indicated no cardiac problem.... The more doctors you see, the more different meds you will likely be given and you need to be reducing the meds you are on, not adding to them.

 

This will happen even if no meds are needed, Thai doctors believe it is "rude" to not give medications and the more you emphasize feeling bad / the more unhappy you see with what they have said and done, the more medications they will give, just to "pacify" you, it is how things go here. (And likely why you got a script for dromperidone). At some point you have to take responsibility for making it clear you do not want anymore medication than  necessary and question every new prescription closely: "is this absoluteley necessary? Can I possibly avoid taking this?"  (The answer will usually be you don't really have to take it, thoguh they will be surprised you asked this as they will have thought more medicine is what you wanted).

 

If you tell me more about why you are on prednisilone, I may be able to suggest whom to see about hopefully getting off it. Possibly the same doctor  could help with that and assess you for possible cardiac issue but it depends on what the prednisilone was for.

 

[sailorjon]

Oh, I don't know how to reply neatly to your comments..  so I copied your text and answered in a different font... oh, formatting is wiped,, I will bold my replies... hope that makes sense... Thanks for the great advice Sheila..

 

That is exactly correct and it is going to be difficult if not impossible to get out of this mess unless you can get off some of these medications.

 

As mentioned before the constipation is direct result of the pain meds and also the likely cause of your abdominal discomfort.

 

[that sounds right except the bloated, hard abdomen presented before the pain meds were a part of my daily life, in other words the first week or two of the crisis]

 

You need to get the constipation dealt with  and that will be difficult  without at least reducing  the pain meds.  

 

 See if you can get by on just paracetemol or NSAIDs during the day and keep it to one dose of stronger med at night - if you don't, the abdominal pain and bloating will likely continue. (I realize you have bad back pain, and I am not minimizing . But you have to weigh that against the pain and discomfort caused by the constipation, as the lessening of one worsens the other).

 

[Ok, I think I can.  The pain has lessened somewhat and I have learned to be still and find the place it doesn't hurt.]

 

Why are you on prednisone? You had mentioned being in it in the past, I had no idea you were still taking it. It is a very serious drug with serious side effects  and likely contributed to the back injury. It may also be the cause of both the shortness of breath and the edema (swelling of your legs). Who has prescribed it, and for what exactly?

 

[This is an important issue. Before these latest developments my number one goal was to find out how to get off prednisone.  Here is the history:  I have have always had some allergic sensitivities that resulted in rashy, hivey, itchy skin usually triggered by heat, sweat first. Since childhood with many gap years, depending on where I was located with little problem.  Over ten years ago, while living in China, this condition returned with a vengeance and when it came it was dehabilitating.  Serious rashes covered different parts of my body, my face included, the itching was terrible and nothing helped very much creams, powders, lotions.  Chinese traditional medicine worked for about a month.  Finally, I heard about prednisone and got it prescribed and had relief.  It's been many years of taking It and I take it still.  Recognizing the risk, I asked what can I do to doctors here, they suggested getting blood tests, etc to see if the root condition was something systemic that could be treated.  That was my plan.  It still is.  There's obviously something wrong, some inflammatory problem, or fungus or I don't know what but without the prednisone, in a short time I cannot function.  Sorry for the long explanation.]

 

 

If you can get off the prenisolone you may be able to get off the omeprazole as well as that may hve been prrewx ribed to protect from gastric ulcers which are also a side effect of prednisilone (the fact that you have a h.h. in  itself does not  require omeprazole, only  if you are experiencing painful acid reflux). However, t do not stop the prednisolone abruptly on your own,  it needs to be tapered off.

 

[Yes, and I have told every doctor that insists I am suffering from dyspepsia and gerd that I have not been feeling any acid reflux during this whole experience.  I know what it is like because I have suffered from acid reflux in the past.  They don't seem to listen to what I say I am experiencing and adjust their diagnosis accordingly.]

 

 

I doubt the domperidone  will do much and if I were you I would hold off on it and concentrate on resolving the constipation first. As you are already suffering from the ill effects of various drugs you really do not want to add to the mix unless you absolutely have to.

 

[that sounds right]

 

Have you started to eat prunes daily as suggested?

 

[Yes! Expensive but welcome.  I have had some good movements but I think my body is confused with the different kinds of laxitives and side effects from pills and don't know what results come from what.  I will continue with the prunes.]

 

Because until you have resolved the constipation -- which is almost certainly due to the opiates - there is no reason to think your abdominal symptoms are due to anything else. The fact that you have a h.h. does not mean it accounts for these symptoms, from what I understand of your history it all started after the fall and going on the pain meds and getting severely constipated. The h.h., you have probably had for years without even knowing it.

 

[Ok.  Perhaps true.. But, after the fall and then the rush to the emergency room because of the pain from the h.h. it was clear something new was happening.  i.e. pain and constriction in the upper left abdomen, a feeling like under the rib and pressure on the lung, change in breathing and the bloating etc which was not there for the years previously… so, if I had h.h. for years then something changed…]

 

While the edema in your legs/feet coupled with the shortness of breath could both be due to the prednisilone,  these can also be signs of a cardiac problem. Have you had a recent check-up with a cardiologist?

 

[I haven't but in that emergency room visit they did an ekg that they said was ok.]

[Sheryl]

An EKG cannot rule out underlying heart disease. It can only show whether you are having a heart attack at that time, or had one in the past.

 

Shortness of breath on exertion and swelling of the feet and legs can be an indication of congestive heart failure.   You need to be evaluated for that, sooner rather than later.

 

At Chula, I recommend Prof. Taworn Suithichaiyakul. He can also be seen at Sukhumvit Hospital on  Saturdays  (name on their website spelled Thaworn) http://www.sukumvithospital.com/en_doctorprofile.php?id=32

 

Meanwhile I am not clear if the bloating and abdominal discomfort is improving now that the constipation is easing?

[sailorjon]

1. Ok, then I will ask for an appointment to be evaluated for congestive heart failure asap.  Thanks.
2. No, the bloating and abdominal discomfort remains unchanged no matter the constipation easing or not...  , confusing, i wonder if it is gas or air ...

[Sheryl]

It could still be the codeine - either that or it is the h,h, or a bit of both.

 

But first priority is to have your heart checked out and second is to resolve the spine issue. Among other things until these have been settled you are not in any shape to consider surgery and you seem already to be availing of all non-surgical options for h.h.

[sailorjon]

I agree with you.  In fact, there has not been much movement in the intestines but more than before.

 

I tried to make an appointment today with the heart specialist you recommended, Sheila, but at they said they don't know what days he is there.  I would have to show up early morning everyday and ask 'is he here today'.  No phone calls.  So, that is unworkable.  I will try the Sukhumvit hospital on Saturday or  else get another doctor for the test.  As soon as I have the nrg.

 

I just got back from the hospital.  Today was the MRI appointment.  What an ordeal just getting there, had to rest many times walking to far building because of breath.  Then, I couldn't do the MRI, as I suspected I wouldn't be able to because as soon as I lie down on my back, the fractured vertebrae are screaming at me with intense pain and the hiatal hernia, I assume, is giving me strong pain in the upper left abdomen.   They said the mri would need one hour to one hour and a half. Impossible.

 

So, he said I could reschedule it and get help from an anesthesiologist to bear it.   That's the plan.  One day at a time.

[sailorjon]

If it is just easier to go to a local hospital near me and pay for testing, what am I asking for exactly?  A 'heart test' to determine if I have any heart problems currently that may be causing the shortness of breath condition, right?

[Sheryl]

You want to ask to see a cardiologist. When you do, tell him about all the shortness of breath and leg feet/swelling.

It is not wise to delay. In fact if it gets bad should go to an emergency room.

[Sheryl]

P.S. I have the impression you are in Bang Na area. If so, and you want to go somewhere local suggest Sikarin Hosp - very pleasant community hospital which at least at last feedback did not overcharge.  http://www.sikarin.com/en/contact

 

That is re the shortness of breath/leg swelling issue. Any competent cardiologist  would be able to tell if this was a cardiac issue or not. For the spine and h.h. suggets you stay with the Dr at Chula.

[sailorjon]

Went to hospital May 9 for heart check re: shortness of breath and leg and feet swelling.  

 

Went to International, expensive one for a change thinking my new insurance would cover it [they didn't].  Vejthani hospital.  Had consult with cardiologist and full heart testing including x ray, echo recording and blood tests.  

 

Good news:  Heart is ok.  No heart failure.

Bad news:  I have diabetes

 

Ok, I suspected the latter anyways.  But,  end of the day, I walk out of the hospital and nothing has changed.   He said I should see a 'diabetes doctor' that day.   [endocrinologist].  I did.  [In fact, the hospital staff tried to get me into appointments with four other doctors also yesterday until I confirmed that these would all be considered OPD appointments and my policy is limited to 2500/bt / daily for OPD.  I'm confused about this.  Is everything OPD except when I am admitted and sleep there?   I came to the hospital to find the answer to conditions I have and am recommended to specialists who then advise tests, etc... won't this be covered by my insurance outside OPD if not excluded?.. ayaa]   

 

Very nice hospital. Expensive though.  Doctor seemed competent, great english.  We did a heart check package on promotion that included:  xray, echocardiogram, and comprehensive blood testing.  Took most of the day.  I don't know if the echocardiogram was necessary.  I had chosen the 4500/bt package without it.  Dr. advised getting it, which meant 7200/bt package with just that added test.

 

Anyways.  He said heart is good, not the cause of the breathing problem.  Then, referred me to a lung specialist to see if it is the lung.   Ayahh.  In fact, after 13500/bt spent and all day testing, there is no idea from them about the shortness of breath and swelling.  Not one.  I left the hospital same as I came in. 

 

The hospital nurse staff tried to rush me into consultations with about 3 other doctors but I said no, if it is opd then 2500 bt per day limit and I want to reconsider this strategy of going from specialist to specialist when no action is taken to relieve my condition.     However, the cardiologist said I should see 'diabetes' doctor that day, serious.  [endocrinologist ]  ok, I did.  I thought the insurance I have now would pay for that consult [they didn't].   

 

The consult with him made me want to cry.  Ha.  First, he went over the blood tests that led the cardio dr to say 'diabetes' and suggested lifestyle changes ,,, i.e. weight loss, change eating, drinking, exercise habits… THESE .. THINGS.. I .. ALREADY…KNOW…   and he brought out some flipcharts like from jr high school to explain the food groups and which foods I need to not eat, etc.   I tried to explain that information is easy to get and I have it thanks. 

 

I had to steer us to some productive area and brought up prednisone as probable contributing factor for diabetes etc. and did he have some idea or plan how to taper off and treat the condition that will come up again?   That's when I was referred to a skin doctor to begin the process of finding what is what systemically that I began taking prednisone for.   

 

Anyways,  this needs to be done but, FIRST I NEED TO SOLVE THE HERNIA AND BACK CONDITIONS SO THE PAIN IS DEALT WITH AND I HAVE BREATH AND ENERGY TO WORK AND CONTINUE WITH LONG TERM HEALTHT CARE.   They don't seem to get it or couldn't care less.

 

 

This isn't working.  The fall that injured the back was in December last year! And the hernia appeared in February.  they just keep sending me from one narrow specialist to the other,, don't seem to care about reading the history or viewing the information, or even giving a proper physical exam and im running out of money ,, they put off any real action or treatment.

 

 For example at this point, I don't care about a bone density check.  I imagine I have osteoporosis and weak bones from years of prednisone.  What I care about, now, is treatment to stop the daily, nightly pain and difficulty of living a normal life.  They don't get it. Or they just have marching orders to rack up as many consultations and tests as possible and I am getting really pissed.

 

I've just about decided to try to get the money for an operation, probably outside Thailand, for the Hernia.  This won't solve everything but perhaps my daily life will be be improved, abdomen relaxed and then I can continue on with the further plan.   The pain changes week to week and day to day.  Recently, the back pain has diminished.

 

Importantly, I'm coming to believe there are other problems, conditions that still need to be discovered that are responsible for h.h. and other symptoms.  For example, I've had  digesive/gut problems a long time.  Food sitting in stomach long time.  Buy why? I think something is awry in the intestinal track .   

 

The cardiologist suggested the lung doctor because he could see I am not able to take full breaths and on the xray he couldn't see the bottom part of my lungs….  I said, perhaps that's because the herniated stomach is blocking it.. Perhaps it's putting pressure on the lungs.   He said maybe maybe .. But..

 

Ayahh.   I will try to find hiatal hernia operation in Malaysia or India at a cost I can afford.  I know Taiwan would be best but it's $4000 us + travel.  Don't have it.

I will get an Endoscopy.  I think this is valuable and called for and am shocked the G.I. doc at chula didn't want it but said come back after I've lost weight.

I will get the MRI when I can and follow up with ortho. Doc.

 

I am glad I went and got the heart check.  Thanks Sheila.  It is valuable to know my heart is ok, and can be ruled out for those problems.  My journey to health continues.

 

Oh, I will check out the bangna hospital, that's where I live. yes

[Sheryl]

1. Yes, everything except being admitted to the hospital is "OPD". Though many policies will cover expensive tests like MRI, CT scan and also day surgeries and endoscopies i.e. things where you have to be admitted to a room or ward and observed for several hours but do not stay overnight. No policy covers doctor's visits and lab tests etc doen unless done while you are admitted to the hospital.

 

2. From the symptoms you had - -which are strongly suggestive of a heart problem - echocardiogram was indeed indicated.

 

3. It is indeed frustrating that the cause of the breathing difficulties and leg swelling were not found but there was no way to know this without the diagnostic work-up. Any docttors. anywhere, confronted with those symptoms would start by ruling out a heart problem and if none found, rule out a pulmonary problem.

 

4. Re the diabetes: what were the actual lab values? As it sounds like you were not put on medication I am wondering if it is more "pre-diabetes" which could indeed be the prednisone.  Be aware that if you have actual diabetes it is a risk factor for any type of surgery and important for the surgeon to know.

 

5. Bone density check is relevant to treatment of your spinal problem. Operating on very brittle bones can do more harm than good. But leave that to the ortho at Chula.

 

6. The problems with lack of continuity of care and lack of attention to your history will just multiply the more you switch doctors and hospitals.  Unless an emergency, now that you have ruled out heart and lung problems, I suggest you continue with the GI and ortho docs at Chula.  Or if you are unhappy with the GI doc, try another one but then stay with that person, don't keep bouncing from place to place.

 

7. I do not understand why you are so insistant about wanting endoscopy. If you persist with it you will sooner or later find a doctor willing to do it, and it will be costly. An endsocopy only visualizes the inside of the esopahgus, stomach and duodenum. What is it you expect this to accomplish? It is useful when an ulcer or inflammation of the lining of the stomach is suspected, for example. I have trouble understanding what it is in the context of your problems that you think an endoscopy would  show.??

[sailorjon]

1. Yes, everything except being admitted to the hospital is "OPD". Though many policies will cover expensive tests like MRI, CT scan and also day surgeries and endoscopies i.e. things where you have to be admitted to a room or ward and observed for several hours but do not stay overnight. No policy covers doctor's visits and lab tests etc doen unless done while you are admitted to the hospital.

 

OK.

 

2. From the symptoms you had - -which are strongly suggestive of a heart problem - echocardiogram was indeed indicated.

 

OK 

 

3. It is indeed frustrating that the cause of the breathing difficulties and leg swelling were not found but there was no way to know this without the diagnostic work-up. Any docttors. anywhere, confronted with those symptoms would start by ruling out a heart problem and if none found, rule out a pulmonary problem.

 

OK

 

4. Re the diabetes: what were the actual lab values? As it sounds like you were not put on medication I am wondering if it is more "pre-diabetes" which could indeed be the prednisone.  Be aware that if you have actual diabetes it is a risk factor for any type of surgery and important for the surgeon to know.

 

That might be true.  The endocrinologist was suggesting maybe it's not quite diabetes yet.  Said work on lifestyle changes, monitor blood and check back and maybe I don't need meds yet

 

https://docs.google.com/document/d/1N5zpbLxmsidt_fDWg-TnWxj0dF_fNoGED0Yxva0FQ2E/edit?usp=sharing  

I can't seem to paste an image in so here is a link...  blood values..

 

 

5. Bone density check is relevant to treatment of your spinal problem. Operating on very brittle bones can do more harm than good. But leave that to the ortho at Chula.

 

OK

 

6. The problems with lack of continuity of care and lack of attention to your history will just multiply the more you switch doctors and hospitals.  Unless an emergency, now that you have ruled out heart and lung problems, I suggest you continue with the GI and ortho docs at Chula.  Or if you are unhappy with the GI doc, try another one but then stay with that person, don't keep bouncing from place to place.

 

Yes, but I really wasn't getting any treatment advice, and didn't feel comfortable with the quality of care and of the doctors I was seeing.  The GI at chula doesn't care a wit my daily pains, I'm not waiting 6 months to lose weight before doing something.   I'm getting the stomach hernia operation.  Even if it is a partial fix something will have been done and maybe it will affect my daily life positively.  I fell and got the fractured vertebrae in December of 2016.  In all the time since, nothing is done.  Just bear it.  Many months.  The h.h.  February, it will be June soon.   The price quoted for Hiatal Hernia operation at Ramathibodhi is the same as Taiwan which has world class healthcare in more than boob jobs.  $4000 u.s. about 140,000bt.  After a lot of research I found a hospital with experienced surgeons that will do the operation for about 68,000bt or $1950 u.s.  I can do it, and still just about pay my rent when I return.  I booked the flight for tomorrow and guesthouse.  I consult with surgeon on Wednesday.  I hope I'm not being misled or given the runaround again.

 

7. I do not understand why you are so insistant about wanting endoscopy. If you persist with it you will sooner or later find a doctor willing to do it, and it will be costly. An endsocopy only visualizes the inside of the esopahgus, stomach and duodenum. What is it you expect this to accomplish? It is useful when an ulcer or inflammation of the lining of the stomach is suspected, for example. I have trouble understanding what it is in the context of your problems that you think an endoscopy would  show.??

 

It was the GI at ramathibodhi that wanted an endoscopy before considering surgery.  He is convinced there might be a gastric ulcer or he will find something, I don't know what.  Perhaps because the pains I had moving all around were atypical of h.h. and he didn't realize they could have radiated from the spine injuries.  But, it seemed like doing something that might be constructive.  It still feels like there is some underlying problems that led to he h.h. , I mean some block in digesting or moving food, some intestinal problem, etc.  Maybe seeing inside the stomach would be useful.  Chula doctor said no.  In any event, for me the first priority is some actions that will relieve the pains and limitations giving me back some strengh and lessoning the pain so I can deal with the rest. 

 

Thank you again for the great feedback It's very valuable to me and I appreciate it very much.   Wish me luck this week!

 

 

 

[sailorjon]

UPDATE:  

I will add to this little by little, I'm exhausted.  I went to Penang, Malaysia hoping to get SOMETHING done that would improve my situation as almost six months later and lots of my little money spent on tests, doctors, hospitals and medication and no treatment!  No improvement.  Still day and night pain and discomfort.   Now, however, in addition to 3 fractured vertebrae and a hiatal hernia I can add Heart disease.  Let me explain.

 

The gastro doctor in Penang said it was a bad idea to operate on hernia now because a: i am so weak with breathing problems that it would be dangerous to go under anesthetic.   b:  he didn't think the hernia had anything to do with the breathing problem, but thinks its the heart.

 

I explained that two weeks ago, I had gone to thai hospital and done a complete heart check and they said heart is ok.  He said still, get another opinion.

I saw cardiologist there.  He said did the thai hosp do the most important test?  blood flow to test for blockage, ie angiogram.    no, they didn't.  he said I should.  ok.  but at that hospital it is $1300 u.s.

 

I find another hosp with a machine like a ctscanner just for angiogram and go there.  It is also about $400.  They do a pre-test which is a calcium in the blood check with the machine and it reveals i have a lot of C.  so the machine cannot be used because it wouldn't show the images correctly.  I would need a normal angiogram.  However, the doctor, who was the best doctor I've seen yet, suggested that the calcium pretty much indicated a heart blood vessel blockage which was probably the reason for the shortness of breath.  He said I should get the angiogram later to confirm.

 

However, he could begin prescribing medications that he would prescribe if it is true.  So, while this is not a happy result, I now am aware that I PROBABLY have heart disease problems, there does seem to be progress in getting an actual fing diagnosis from the med community.  And some medication that represents a possible treatment that might have a positive impact.