[catra121]

now I am not really sure what to do about it. After months of problems and tests that showed practically nothing I now have a test result that may explain at least some of the symptoms I have been experiencing.

In May I had an EGD which showed a lot of inflammation in my esophagus and stomach. Since the vomitting, dizziness, and nausea was not getting better with me on the Nexium, they ordered a HIDA scan to test how well my gall bladder is functioning. Well...apparently it's not really functioning hardly at all. I got a call from my doctor last night (not the gastro doc because he is out of town until Thursday...but my primary care doc) and she gave me the name of a surgeon to see to discuss removing my gall bladder.

Obviously, this has me a little concerned. I think that a non functioning gall bladder could explain a lot of my symptoms (dizziness, nausea, vomitting, bloated stomach, abdominal pain, headaches) but I think that there is stuff that it wouldn't explain like the burning pain, the redness of my skin, sensitivity to touch, etc. I have suspect those things are caused by a spead of the CRPS after the block. So...would removing the gall bladder really be a good idea?

I guess that depends on what is actually wrong with it. The ultrasound of my gall bladder was normal (only thing they saw was a mass on my liver). If my gall bladder is infected...it's gotta go...I get that. If it's damaged (either from an infection that may or may not be in my system any longer or from the LSB procedure)...then I'm not sure. If it's gall stones...then maybe there's an option besides removing that would be worth a try such as changing my diet or something.

So I think before I see a surgeon, I should see the gastro doc to discuss what is causing the problems in my gall bladder and the results of the HIDA scan in depth. Does that make sense? I just don't want to jump into something and make matters worse for myself by just jumping into a procedure without knowing all the information and weighing all the benefits/risks of the thing. Been there...done that...want to be extra careful now.

Does anyone have any experience with something like this? Good, bad, am I worrying over nothing?

Thanks for any help or advice. I'm happy to finally have an idea of at least part of what may be wrong with me...but I really want to get more information on exactly what is wrong before I make any decisions.

[fmichael]

Dear Catra -

I agree that the two issues are probably unrelated, but surgery with CRPS is an altogether different question. There is a significant amount in the literature (or was before every paper co-authored by Scott Reuben, MD was withdrawn due to his acknowledged fabrication of data in the interest of drug manufactures: the alleged benefits of COX-2 anti-inflammatories prior to surgery in the general population) which have shown that surgeries on an extremity (arm/leg) in a patient with CRPS will greatly increase the chance of "spread" to the affected limb. And there, the usual treatment of choice is continuous regional anesthesia, during and after the surgery.

That said, I know that when I was considering surgery on a hernia, my PM doc wanted me to at least have an epidural - if the surgery could be performed in 2 hours or less - or the appropriate block.

The problem in many hospitals is that patient's don't have the opportunity to a pre-op consultation with the anesthesiologist, who is often assigned just the day before. I am informed that in Los Angeles, the only two hospitals offering pre-op anesthesiology consults - and hence the opportunity to do something a little different - are at UCLA and USC. As a result, all parties agreed that should surgery be necessary for my hernia - and so far it hasn't - it would be performed at USC, where my PM doc practices.

So, the need for surgery may be your ticket into Rush, at least for that first consult, and possibly jumping towards the head of the line while you are at it!

Mike

[kathy d]

Dear Catra121,
Hi and I am sorry you are having all this gall bladder problems. Unfortunately in my family, just about everyone has had theirs out (I am the exception). Seems like bad gall bladders run in my family. I don't understand how the doctor could tell you to have it out when the results were normal and tells you you have a mass on your liver? How can you have any surgery when you don't know what is causing the problem in the first place. OK if you have gall stones then fine BUT what about lasers to destroy the stones? It is much less invasive. I agree with Mike that surgery should be your last resort. Another idea I had is maybe the Nexium is causing all your side effects?? Read the brochure it comes with or go online to look at them. Have you ever tried to get off of it or try another brand. My neuro doc told me Nexium and acid reducers do just that..they reduce your acid but unfortunately they kill off the good acid we need in our bodies. You may have to change your diet for sure and I know some people get GERD (Gastro Esophagal Reflux Disease sp?) where they get indigestion, burning, etc. Look in to that too.

I think burning pain, skin redness, and sensitivity sounds like rsd rearing its ugly head to me. Definately see a good gastro doc to help you diagnose what is causing you all the problems. Even some type of scoping would be better than surgery. I don't think you should be your own best advocate when concerning your health. You need to do what is best for YOU not what is more convenient for the doctor.

Lastly, I could think of maybe you seeing a really good gentle chiropractor who may be able to do a few adjustments and maybe some work in your belly area. I love my chiro and would see her first before going to any other type of doctor. She is amazing. Best of luck to you and let us know how you make out.
Take care,
kathy d

[daniella]

I am sorry you have to face this. I encourage you to explain the rsd to both your gi and surgeon doctor. It is very key that they have knowledge of this condition. You would be surprised at how many doctors dont and want say that.
There are some procedures and conditions that one must do and some that there may be other alternatives. I am not familiar with this condition so I guess I would see if there is a choice even. You may want to get another opinion as well.

[Swatgen27]

Catara

I'm happy to hear that you are finally getting some answers. I personally don't have any experience with gall bladder issues but I wanted to tell you that I think all of your questions are great questions that the specialist should be able to answer. If you need medical intervention in relation to the gall bladder I would suggest exploring all treatment options. I hope once this issue is resolved you start to feel better soon. Good luck and keep me posted on how you are doing.
Sarah

[catra121]

Originally Posted by kathy d

Dear Catra121,
Hi and I am sorry you are having all this gall bladder problems. Unfortunately in my family, just about everyone has had theirs out (I am the exception). Seems like bad gall bladders run in my family. I don't understand how the doctor could tell you to have it out when the results were normal and tells you you have a mass on your liver? How can you have any surgery when you don't know what is causing the problem in the first place. OK if you have gall stones then fine BUT what about lasers to destroy the stones? It is much less invasive. I agree with Mike that surgery should be your last resort. Another idea I had is maybe the Nexium is causing all your side effects?? Read the brochure it comes with or go online to look at them. Have you ever tried to get off of it or try another brand. My neuro doc told me Nexium and acid reducers do just that..they reduce your acid but unfortunately they kill off the good acid we need in our bodies. You may have to change your diet for sure and I know some people get GERD (Gastro Esophagal Reflux Disease sp?) where they get indigestion, burning, etc. Look in to that too.

I think burning pain, skin redness, and sensitivity sounds like rsd rearing its ugly head to me. Definately see a good gastro doc to help you diagnose what is causing you all the problems. Even some type of scoping would be better than surgery. I don't think you should be your own best advocate when concerning your health. You need to do what is best for YOU not what is more convenient for the doctor.

Lastly, I could think of maybe you seeing a really good gentle chiropractor who may be able to do a few adjustments and maybe some work in your belly area. I love my chiro and would see her first before going to any other type of doctor. She is amazing. Best of luck to you and let us know how you make out.
Take care,
kathy d

The ultrasound was normal, but the HIDA scan showed that the gall bladder isn't hardly functioning at all...didn't react at all to the medication they put in me during the test that is supposed to make it contract and the radioactive tracer that went through me was VERY slow going through that area. I hope to get more specifics about the results when I see the doc. Since the ultrasound is clear, it is possible that it is not gall stones but rather that the gall bladder was damaged in some way (possibly from an infection).

It fits timing wise with when the symptoms started if an infection got introduced into my system when I got the block, and makes sense that the symptoms (at least some of them...the ones that may not be related to RSD) would have gotten worse over time.

It's definitely not the Nexium that is causing the problems since that was only started 3 months after the symptoms started to "protect me from getting an ulcer" or from damaging my stomach with the amount of vomitting. It didn't help, but that makes sense if the problem is my gall bladder, at least from what I read online.

Thanks everyone for all the advice and suggestions! I am definitely wary of any type of surgery and will have a decent list of things to go over with the gastro doc when I see him next week. I really just want to make sure that I'm not just making the decision to have my gall bladder removed because I am so desperate for an answer to what is wrong with me and that there is a good reason to go forward with that if it ends up being necessary. My mom seems to think that I am being over cautious...but when you deal with RSD I don't think there is any such thing. I want to be confident that any decision I make about my health care from this point on is something that I am 100% comfortable with and that I have weighed the risks and benefits to make sure it is the right thing for ME.

But I am so hoping that between this and the physical therapy that I have started that I am finally back on the path to a normal life (as normal as it can be anyway). Please, please, please...let this be the light at the end of the tunnel from this nightmare that has been my life for almost 6 months now...and back to the nightmare that has been my life for 2 years since getting RSD in my left ankle. At least that I can handle...

[daniella]

It sounds like you have a plan and I too hope for you better times are ahead. I think it is so important to be cautious and I hope you explain that to your mom. RSD is very confusing to people who don't face it on how it can spread or flare up. Maybe a book or some writen internet info can help her. Hang in there