For starters, would I have done the surgery if I knew then what I know now? The answer is a resounding yes. Does that mean I am cured? No I still have good days and bad days. I still have nausea but nothing like I did before the surgery. When I have my worse days now they are about the same as my bad days before. You might be asking what does that mean? My worse days before were those when a drop of water or a little puree mad me deathly ill. Now my worse days are filled with nausea and bloating. Do I still have days when I can't eat? Yes, and I know as soon as I wake up if it is going to be one of those days because me and an my old friend have a morning conversation. (For those of you with DTP you know exactly who I am talking about, but the only thing that my friend can do is listen and flush the bad news away.)
Since I had already had the temporary we knew that I would more than likely respond to the permanent one. I am glad I went through with the temporary placement first. The permanent surgery is painful and I spent 5 days in the hospital. I came home on pain pills. I also had to be careful coming home when it came to lifting and bending. I don't feel like I am back to where I was before the surgery as far as strength and energy. But this might be my new norm which we all know changes over time with Gastroparesis and Menieres. (Menieres has decided to go into a 5 month flare up without a day of not spinning or being off balance. Sometimes I wonder if having 3 surgeries in two months was just too much for my body to handle.)
I also have pain on my right side where the pacer was placed. This is very annoying and uncomfortable for me. Yet, this is the way I usually handle surgery so it might only be me that would be hurting this long after surgery. For those of you that have read Harry Potter my scar and his act the same. But my It who should not be named is my hand. I have self diagnosed myself with a bad case of Twiddler's Syndrome. (Will have to do a whole blog on that.) If you haven't read the Potter series this example may be more for you. Three years ago I had a endolymphatic shunt placed for Menieres disease and over the last month and a half the stitches have decided to surface behind my ear. Which means my body doesn't like them. Because of the type of stitch I am pretty positive that it was used during this surgery. I wonder how many years it will take for them to start surfacing.
Dr. Thomas Abell is my motility specialists and did the programming and placement of the temporary pacer. He is handling all the motility issues. I also have another GI doctor Dr. Martin Mark, that works with my GERD issues. Dr Robert Cacchione was the actual general surgeon. During my procedure they not only placed the pacer but also did a biopsy of my stomach muscle to help determine the cause of my Gastroparesis. Lucky me, not really, I am one of the patients that is listed as having idiopathic Gastroparesis. The hope is that once the biopsy results come back we have a cause so that I can be treated for that which should help with the Gastroparesis.
Due to the pain medicines I also started having a major change in other areas of my digestive tract. I know now that even though my stomach empties slowly now my colon empties extremely fast. (Smart pills can detect things that other test might have missed.) So we are going to start looking into that and why it empties in less than a half an hour.
Make sure to read the patient manual if you aren't given one at the time of the surgery you can get the information from the website. http://www.medtronic.com/wcm/groups/mdtcom_sg/@mdt/@neuro/documents/documents/ges-ent3116-ptmanl.pdf . If you still have concerns talk to your doctor and they can answer your questions.
I did go back to work for a few days, but the Menieres and the surgery were just too much this time. Between my head spinning and recovering from the surgery I just could not pull it off. It is devastating to have to throw in the towel. But, I know I fought as long as I could. My ENT wanted me to stop working about this time last year, but i tried to keep going. So it isn't as much giving up. I actually fought the battle until my body said time to rest.
One of the other changes that has happened effects my stress reliever photography. I am one of those people that likes to take pictures as close as I can. My favorite setting is super micro because I get a thrill of catching the smallest of God's creatures and plants doing their daily chores. I know it is crazy but if they can do it so can I. Now that I have my stimulator bending down to get those shots is impossible. I wish I could do it, but there is no way. (Plus with the Menieres if I bend I am going to hit the ground.) Thank goodness for telescopic lenses and a very good camera...also thanks to a friend who scouts out places and drives me to the right spot so I do not even have to get out of the car.
I have had several visits so far adjusting the stimulator seems mine decided to turn itself off at one point. Which scared me when it was discovered during a visit. We are not sure how long it was off, but I do know for a few weeks I thought that I had done this crazy surgery and now it isn't working. I keep a sharp eye on it now. More than two or three days feeling bad and the Doctor will be hearing from me.
So I already know the question you are going to ask would I recommend the procedure for everyone? (I know why you are looking at this you want to know if it is your best option.) That recommendation is not mine to make. The physician will do test and will lead you on what options are best for your individual case. Remember some people respond absolutely wonderful to the stimulator. While others get a temporary reprieve only for it to wear off and they go searching for more answers. There are others that it did not help or they had to have it removed for various reasons. You and your doctor know you best and the decision to undergo this or any other surgery should come from them. It is still your decision after weighing all options.
Well, that is my take on my pacer. I am glad to have had a physician that guided me to something that would work. I am not cured. Yet, I am hoping to make it until that happens or at least enjoy what time I do have a little better than before the pacer. I keep praying that everyday it works and thank God for both good and bad days. I am tired, head spinning and tummy wants to start acting out so I am out of here.
Well, that is my take on my pacer. I am glad to have had a physician that guided me to something that would work. I am not cured. Yet, I am hoping to make it until that happens or at least enjoy what time I do have a little better than before the pacer. I keep praying that everyday it works and thank God for both good and bad days. I am tired, head spinning and tummy wants to start acting out so I am out of here.
For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won. Until then don't give up hope. It is okay to rest on bad days, but on the good days enjoy life to your fullest because you deserve it.
There is so much more and remember this is something that I live with and am writing from my perspective. Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve.
I see you have the same motility clinic. I see Dr Stocker and Dr Abell. I am going for my temp and nervous bc I do not like ng-tubes and know this is what it's going to be like. But excited at the same time. To feel a bit normal for once. Not stop Plans bc my stomach decided it's not going to play fair. I have an ileostomy and when it has nothing in it, and I am sick I know it's the Gastroparesis. I also have Crohns Disease and a neurogenic bladder. However, I do believe my bladder and Gastroparesis is caused from all of my countless abdominal surgeries. Thank you so much for sharing with us.
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