All Journal Entries Journals

what's next?  Bravo pH monitor and Interstim Therapy....

Nov 26, 2008 - 4 comments

This is a follow-up for those of you interested in how my doctor appts. went today -I didn't post this length detail as a discussion on the board because I really don't have questions.  First, I really don't like early morning appts. and seeing the GI doctor at 7:30 AM was painful enough.  At the end of the appt. I gave him a copy of my esophageal spasm/heart attack quote I found last night - he read it twice - the second time outloud and said the operative word was "may" . He did give it to his PA to put in my chart.  

We had already spent time reviewing my lump/knot in the throat issue.  He wants to do  a pH monitoring test to check my acid levels.  Fascinating procedure from what I read - during an upper GI a monitoring capsule is attached via suction to the esophagus.  It will transmit data to a recorder unit for 48 hours.  I will wear the recorder on my belt like a pager.  The capsule itself will detach from my esophagus in 5-7 days and exit my body via my digestive system.  The unit is made by Medtronics, the same group that makes a popular brand of pacemakers and other medical devices.  

This procedure is scheduled for next Thursday afternoon. In the meantime he has restarted me on Prevacid and wants me to continue the acid reflux diet I have been following since March (no coffee, no caffeine, no chocolate, no juices, etc.).


I then stopped through my cardiologists office near the GI doc to pick up my brand new magazine on holiday baking that I left there last week. I had called them and told them to read it and I would be in today to get it back.  When I stopped I also dropped off to the cardio doc a copy of the esophageal spasm/cardiac spasm information along with a quick note from me.  That will make his day to see me trying to play doctor still - I just can't seem to let this connection thing rest until I can get a reasonable scenario worked out in my head about what happened to my body.

Stop #3 this morning was the urogynecologist.  I was surprised that I have another UTI - I again had not a clue that germs were breeding in my bladder. She doesn't want to put me on antibiotics again because of the concern of developing resistence to antibiotics if I use them too much and she thinks the infection may be an ongoing problem now for me because of the self-catherization. The self-cath is a clean but not sterile procedure and each time I am introducing new bacteria into my bladder. I am to call her immediately if I have pain or start running a fever.  

Unfortunately I am still retaining urine, despite being on FloMax, about 375ml this morning right after I had voided. So I am stopping the FloMax since it obviously did not work for me.  She wants me to increase the self-cath routine to multiple times a day to see if that helps keep me out of the bathroom more than 45 minutes at a stretch.  

And this part I will post on the forum as well - she gave me literature on Interstim Therapy.  Another fascinating procedure to read about - and this is also made by Medtronic, the pacemaker and pH monitor manufacturer.  I think I should buy stock in their company!  It is an electronic neurostimulator device much like a pacemaker that is implanted near the tailbone under the skin.  the unit then is fine tuned to provide the appropriate electrical stimulation to the sacral nerves that control the bladder.  She recommended that I consider it seriously and do the two week trial with it to see  if that helps.  She also suggested we talk about it after the holidays - she could see that I was at the exhaustion point this morning and not processing all this stuff particularly well.  But, and here comes the giant problem with this procedure,  she did point out that if I go ahead with the permanent Interstim implant, I would not longer be able to have MRI's done. She did say she had a patient that overlooked that conflict and had an MRI and it did no serious harm but the unit had to be reset  by the factory, which could be done remotely.

She will be sending another note to my MS neuro with her findings and recommendation.  I asked her if she was sure my problem was neurological and she said she has no doubt it is associated with my MS and not a physical cause.  According to the doctor, there is no need to pursue other testing, such as urodynamics, to prove that my bladder is not working correctly.  

I will see her again in early January.  

Doesn't this all just sound like more fun for me?  


Comments
Post a Comment
Avatar universal
by essdipity, Nov 26, 2008
Hi again. It seems to me you should work on the regular cath stuff more. My uro-gyn gave me the following plan:

More than 400 cc cathed     Cath 4 times a day
More than 300, less than 400,    Cath 3 times a day
More than 200, less than 300,     Cath twice
More than 100, less than 200,     Cath once
Less than the above,                   Cath every other day

ess          

559187 tn?1330786456
by Sarahsmom46, Nov 26, 2008
Laura,

I had the BRAVO study about 2 years ago.  I did not have a good outcome.  For some people this is not a big deal.  They go in and attach the transmitter to your esophagus through enodscopy and after wards you are supposed to go about you life eating normally.  In my case however, I started seriously choking with my first meal.  Also, every bite of food was so painful as it put caused sever esophageal spasms, which in turn cause chest pain big time.  I called the endoscopy nurse and she begged me to try to finish the study and that they would schedule me for another endoscopy after I finished the 48 hour study to remove it. This pain would not have gone away until the transmitter dislodged itself 5-7 days later.  Needless to say, I refused to eat anything that required chewing because of the pan and lived on milkshakes and pudding until they removed it.  

They removed it exactly 48 hours later and the doctor who was the chief of GI at this university hospital, made comments that no one has problems with it and it kind of made me feel like a pain weenie, until the nurse assisting him waited until he walked away and said "don't let anyone make you feel like you are making a big deal out of the pain because many people have had to come in and have it removed too".  I appreciated hearing that and even later read studies of this severe symptom being more common than these doctors want to tell you.

Once I woke up from the endoscopy to remove it, the nurse was right there telling me that I had some bleeding but that everything was under control now.  They had me lying on my side and when I opened my eyes the towel under my face was full of blood I kid you not.  I was so scared and sick.  I had  the worse nausea and heartburn feeling in my life.  The doc came and asked if the bleeding was subsiding and all and then asked how I was feeling.  I was so sick Laura I couldn't open my eyes even.  Anyway, long story short, I ended up getting admitted to the hospital.  They gave me an urgent CT scan and barium swallow which showed a hole in my esophagus.  That meant no food or fluids for 2 days while it healed.  

The really sad thing here besides getting that painful spasms every time I swallowed, then experiencing severe bleeding when he removed it, then getting admitted into the hospital for 3 days because of the complications you might ask --- We didn't learn a gosh darn thing.  In fact, my ph levels were so low that it was hard to believe I had acid reflux problems.  Now we know that is because of my low B12 probably being caused by no intrinsic factor in my stomach.  NO intrinsic factor, no acid even though you acid reflux symptoms.  

Believe me when I say that each person should make this decision for the study on their own knowledge and trust for their doctor.  I only did it because my lung doctor wanted to get to the bottom of the acid reflux issue because I have aspiration problems that are affecting my lungs, but had I know what was involved with such an invasive procedure, I would caution anyone contemplating or agreeing to go through this and weigh the pros and cons.  There are less invasive tests for ph like the 24 hour test.  It is not heralded as the most comfortable, but at least you don't have anything attached to your GI tract surgically.  There are other tests like I said and depending on why exactly they are doing this, I would definitely think it over again.  Complications are not that uncommon. If you want to research it, good-luck because it is very hard to find derogatory information as it is really embedded in these reports.  Do you know what else, the doctor was so secretive about it like maybe there might be a lawsuit from me or something.  I never did get the whole story about how I ended up with a tear in my esophagus, just that it would heal and that they don't need to fix it surgically, thankfully for me.  

Sorry to post such a doom and gloom story.  I wondered if this BRAVO study would come up sometime with all the people going for GI stuff lately and sadly it has come up.  It seems to be one of those "hip" tests that they are actually still conduction clinical trials on.  Hmmm....Anyway, that is just my 2 cents worth.  You are a smart lady capable of doing what is right for you and its possible you won't have the same issues.  Hopefully.  

Hugs,

Julie

559187 tn?1330786456
by Sarahsmom46, Nov 26, 2008
Lu - me again.  I hope you will take my grave concerns with a grain of salt. I realized after wards that the odds of anything bad happening are really low and with all you have been through this past year with the heart attack, tests up the ying yang,  MS dx and all, this will probably be a walk in the park.  Please accept my apology for being so emotional about what happened to me.  I will blame it on the prednisone - he, he...Take good care and have a wonderful day tomorrow with your family.

Julie

611606 tn?1315521367
by ShadowsSister, Nov 27, 2008
Lulu, Happy Thanksgiving,
Hey I am no Doctor, BUT!!! I have a feeling this isn't reflux, It sounds a lot like spasms in the vocal cords and Trachea and is most likely connected to the MS. Of course I could be wrong...
You sure had a very rough day. I am so sorry you have to deal with all this STUFF!!, sometimes there is nothing fair about what we go through. But than we were never told "Life would be Fair" were we. I know you well enough that even when it gets you down a bit, you will some how make it through the yucky stuff and find some thing to smile about. You are one amazing Lady and a wonderful Blessing inmy life too!!
I hope you Thanksgiving is filled with  love an the sounds of Laughter.
Thanks for calling me the other day. I'll give you a call Saturday
know that you are always in my thoughts & prayers..
Here's a bunch of hugs{{{{~!~}}}}
I am doing my best to hang in there. Your medial suppliers are the same ones that make my Morphine pump. I think I know what your Cardio was telling you about, does it feed impulses to the spinal cord?
We'll talk Saturday...
Happy Turkey Day my Dear Friend

Post a Comment