Cricopharngeal Myotomy post-op

Jan,

What can I expect from the Nissen Fundoplications surgery?  I don't think I will recover so quickly from that, I suspect. I had to promise my gastroenterologist that after they remove my present G-tube, if I lose too much weight, he wants to put in another G-tube in a different part of my stomach.  The one I have now is near the top of the stomach so they cannot wrap it around the DES of the esophagus.  I also didn't know the doctor who placed my g-tube stapled by stomach up high in my chest cavity so the surgeon will have to find the staples and remove them and move my stomach back into a more nature position.  Those will make the surgery more complicated.  I see my Head & Neck surgeon today for my first follow-up.  I think he will be pleased!  I hope my surgeon for the Nissen can perform that surgery ASAP.  I am feeling great and need to move along.  He also told me he wants to do it ASAP because the GERD is so severe in my case.  Aspiration into the airway is something they are very concerned plus my airway is not completely protected.  Bummer! 

How painful is the Nissen surgery?  How long without any food? How long on soft blended or semi-soft food.  I ask because I have many allergies and it will be a challenge to keep my weight from dropping too fast and to give me nutritionally what I need.

Thank you for posting, Jan.

Gloria

Hello Gloria,

The only experience I have with the Nissen Fundo is with my daughter. I did write some blogs for this site about the surgery, questions to ask and what to know after the surgery. Much of it would apply to an adult.

I must say that your surgery sounds more complex than the average case since the surgeon needs to take some extra steps. Abdominal surgery can lead to discomfort in the first few days so you will be glad to stay in your hospital bed and accept all offers of comfort (ie medication).

My daughter had some tubing to drain the stomach after the surgery so it was a day or two before she attempted any liquids by mouth. She was on a soft diet in a matter of days. Everyone needs to set their own pace. Be ready to stay on a soft diet for a few days to weeks. This will decrease choking and food getting stuck in the esophagus. After surgery, the esophagus is swollen and unless you chew very carefully, you will choke and it is a terrible feeling.

With your special dietary needs, it might be a good idea to ask the surgeon to have you talk with a dietician before discharge. My daughter was on a lactose free liquid nutrition drink (similar to Ensure). It provided complete nutrients, calories, protein, etc.

My daughter had terrible gas bloat, a common symptom after the surgery. We were both glad to have the G tube to vent the painful air and make room for food. Most children and adults have mild to moderate gas bloat that resolves in a few days or weeks. Again, you might need special measures with your complex history. Ask the surgeon and the GI doctor if you will be more susceptable to gas bloat than other patients. A common treatment for gas bloat is to eat slowly and chew well to avoid ingesting air.

You sound like you have a positive attitude about the surgery and recovery. Make sure you stock up on funny DVD's and soothing music as you rest and recover. Let us know about your experiences. I am sure others will benefit from your insights.

Oh, make sure you let us know when the surgery is scheduled.

Take care,

Jan Gambino

The Reflux Mom

Jan, I greatly appreciate you sharing your experience with your daughte's surgery.  I normally don't accept pain medication but I did with the Cricopharngeal Myotomy to prevent dyskinesia episodes post-op and I will do the same with the Nissen Fundo too.  I have a very bad bowel problem so I am always concerned about how medication will affect my bowel (the colo-rectal surgeon wants to remove it completely) so I will baby myself and do whatever is necessary to get through all of this without additional new problems or exacerbating my current medical problems. 

I huge concern is what happened at the hospital before and after my surgery: I arranged to come in early to be hydrated and wait until my it was time for me to go back into the Pre-Op area.  That didn't happen. As a result, I ended up with severe tremors which led to one of my worse dystonia-dyskinesia episodes ever.  Not a good thing when my neck had just been hyper-extended for the laproscopic surgery and I was contorted like Blair in The Exorcist.  My husband was there to there them what they needed to do to stop the episode but because the doctors I had told didn't write it down, no standing order was in my chart.  After 45 minutes of horrible pain, the valium at the proper dose was finally administer.  (Two strikes against the hospital there with no pre-hydration for an afternoon surgery & no order for Valium to stop the episode before it hurt me).  I ended up with a whiplash type injury that is much better now but didn't have to happen.  My neck had only been sore but not horribly painful.  The 7 or 8 nurses gathered in the room staring helplessly as Steve calmly gave instructions with him lying across the trunk of my body to keep me from hurting myself.  It took too long to contact the surgeon twice to finally get the right dose into my vein to stop the episode.  Something for me to work on BEFORE my next surgery.  I am doing that.  Nutrition after the surgery was another problem.  I made all my allergies to medications and food known during the pre-op appointment.  They wrote it all over the chart but still I didn't get a single thing I could get without a gastric problem.  This will be a bigger concern after the Nissen. I was given all the foods I am allergic to cow's milk, egg whites and soy.  No protein was in the diet so I asked for them to try to give me some protein.  They gave me whey powder which turned out I was allergic to.  I don't blame them for that since I didn't know about that allergy but I had hives on and off during the 3 days I was there and I had to self-treat with their permission.  They ignored it and I had asked for 3 consultations with the dietician during my stay.  Nothing changed and the same allergic foods appeared on my try. I am addressing all of these things with the Patient Relations manager and each department must comment and rectify the matter. I document everything that happens for every appointment and hospitalization so I have all the facts. For my sake and other patients, I cannot let this slip by and hope for better aftercare with the Nissen. I am a little afraid to have it until things are settled.  They know I'm coming back in a few weeks.  As a final frustration, I'm extremely hard-of-hearing.  I pre-arranged for them to have an ampliphied phone with speakphone capability.  After the fourth phone, I gave up. I desperately needed to communiticate by phone from my hospital bed due to a bad attitude nurse was neglecting me and giving me snide remarks, but I was unable to contact anyone by phone because I could not hear them.  My husband arrived and he took action for me. 

All of this is now being investigated.  I need to let patient know to make sure the hospital they are going to know ALL their special needs and get names and phone numbers for key people should they NOT be prepared to do so when you arrive.  I had names and numbers but was unable to help myself.  This will not ever happen again to me. Honestly, I had all good nurses and LVN's except for on the last day. The hospital system needs to change and I'm on a mission.  I have to be for my sake and those who come after me. 

Hello!

Oh my...what a story. I completely understand. A patient and her family need to be participants and advocates in the doctors office and the hospital. I wonder if your partner can stay with you in the hospital overnight. If not, perhaps someone else can help and take shifts. When my daughter is in the hospital, I am there 24/7 just for all of the reasons you mentioned.

When my daughter was 5, she spent the night in the hospital for a endo and probe before surgery. For breakfast, she was served a southwestern omlet drenched in onions and salsa. Now I can laugh about it but at the time, it wasn't the least bit funny! Obviously, the food service hadn't gotten the info about a special diet!

I have contacted the office of the patient advocate while in the hospital. It sounds like you are dealing with their office right now. In addition, it might be a good idea to contact the anesthesiologist and surgeon and get the orders discussed and written now.

It is a lot of work but it will ensure that things go smoother.

Regarding your diet, I wonder if a plan for your diet can be worked out now-before you enter the hospital. After the surgery, you will go from IV to clear liquids to all liquids to soft diet. Maybe there is a dietician outside of the hospital who could develop the plan or you can consult with the hospital staff now-not when you are in pain and medicated just after the surgery.

Sorry, more homework.

Take care,

Jan Gambino

The Reflux Mom

Dear Jan,

Your advise has been extremely helpful along with my Rehabiliatation Neuropsychologist input at the hospital.  Together, I have devised a plan of action to work with the Patient Relations representative. I wrote an email last night requesting a face-to-face person with the top Dietican at the hospital. The Patient Relations representative just wrote back that she is working on arranging that appointment.  Yay!  I cannot get an earlier appointment with the surgeon than January 8th (unless there is a cancellation).  Bummer!  The anestheiologist is not accessible or even selected until the day before the surgery.  That's how they do it at this big university based medical center. 

I will keep trying with the utmost tactfulness to get in as soon as possible to explain the importance of having some standing orders in my chart prior to the surgery.  I will also meet with my Primary Care Physician to enlist her help in making sure she is on the same page with me on my concerns. She is most sympathic since there is usually little she can do to help me besides referring me to specialists.  I will ask if she can write the orders and the surgery can re-write then if he wishes to his liking.  As long as I have the following, : prior IV hydration; order for Valium sedation to head stop my dystonia/dyskinesia episodes; hypoallergenic linens, gowns, towels/washcloths; a pre-set diet that the kitchen can easily follow which will avoid my food allergies and sensitivities; and an amplified telephone, .  Whew!  This is a lot to get done but very necessary in my situation. 

Since my husband is unemployed, we don't have any money to go and pay a Dietician on our own prior to my appointment with the hospital Dietician.  I think it is possible to pre-arrange everything with the hospital's cooperation.  

The real "acid test" will be when my surgery takes place and what happens afterwards.  My husband will stay as much as he can but not overnight as he tends to get very sick if he hangs around hospitals too much (weak immune system).  I don't need that to happen.  My brother offered to also help on the day of the surgery and on any day they visit afterwards to act on my behalf if my spouse is not present or assist my husband in any way. I'll get that in writing before the surgery takes place.  I guess, due to the strict HIPPA regulations, a legal Health Care directive or Power of Attorney is advisable.  I'm not sure about what forms I need but I'll find out from the Patient Relations person today. 

I hope those who read this post will get some valuable tips on how to avoid trouble before it happens.  It awful to be helpless at the hospital and not be able to get things done the way they should be. 

I had my Nissen Fundoplication surgery on January 16, 2009,  This time, every thing went very, very smooth.  My surgery had a number of technical difficulties the surgeon knew about beforehand so it took longer than usual (4 hours) but everything went perfectly.  What was a critical part of this turning out so well, was preparation and making all the right contacts before my surgery date.  I had the top hospital clinical dietician prepared for my arrival and she a discussion with my surgeon before I arrived for my final surgical consultation.  I came to my last surgical consultation appointment with a list of all my special medical needs.  After all, this was my 21st surgery so I should know what I need and what must be avoided.  I had typed up all my special medical needs into 3 categories: Pre-Op, Post-Op and Inpatient.  I had the surgeon, the hospital clinical dietician manager and the Patient Relations manager all on the same page and in agreement that they would include my requests from hypo-allengic linenes, towels and gowns to avoidance of my manty allergies and they even purchased 5 phones specially designed for people with severe hearing loss.  My surgery was not very painful, thankfully.   I still had to stay there 4 days to be sure I could handle the puree food on day 4.  Now I'm home making use of my Magic Bullet to puree my food for the next 3 weeks.  I even was able to go for a morning walk this morning.  I didn't get a lot of gas blot, thank goodness, and had to have a suppository to help my bowel move along but I rather expected that with all my GI problems. 

During the surgery, it was decided they could do the surgery and leave my GI tube in place.  If my swallowing continues to be very easy, I'm sure my gastroenterologist will agree to remove it soon as long as I don't lose too much weight.  I'm 5'7" and 128 pounds.  I love 6 pounds in 4 days.  

All together, I have absolutely no regrets about having both the Cricopharyngeal Myotomy then the Nissen Fundoplication surgeries.  I feel my life will now have a higher quality and possibly allow me to get off 2-3 medications.  BTW, all my contacts dropped by the room to make sure all the arrangements they made me me were being implemented. 

For all of you out there considering the surgery, my personal advise is to find a surgeon who is very experienced, one who is gives you time to ask all your questions and address your concerns.  If your surgeon won't do that, find another surgeon.  Take the "bull by the horns" before any surgeon cuts into to you. It's your body so treat it with care and expect the surgeon and caregivers to do the same.  Enlist the help of hospital personal who can help smooth the path before your surgery. That is so much easier than waiting until everything has gone wrong, you are very upset and it's too late to do prevention planning.  Plus, you are then seen as a possible "legal risk" who may try to sue them.  I keep a diary every time I'm hospitalized so I know what happened and all the people involved.  It can be difficult to lodge a complaint against that guy who refused to call the doctor for you if you don't know who it was.  I have never sued anyone but I believe in documenting all my medical events for myself and for my family should I not be able to speak for myself.

Oh, don't forget about having an Power of Attorney for Heathcare and Advance Directive (not notary needed in California) should you need someone to make healthcare decisions for you.  It's a great tool since one never knows what life may bring even if you are in good health.  Make it easy on your loved ones.  Take the time to prepare these documents.  I'm working on my Power of Attorey for Finances next and updating my Will.  I'm not being morbid.  Life is fagile.   

Much Relieved,

Gloria (hummerlady54)

I'm doing fairly well with my Nissen surgery I had in January 2009 but it only took 2 months for the Cricopharyngeal Myotomy to fail.  Apparently, the muscle fiber grew and reconnected very quickly. Daily, I struggle to get enough food down.  It gets stuck in the same part of the throat.  The same surgeon will cut more aggressively this time and criss-cross the incisions to try to make it much harder for those muscle fibers to reconnect.  Even when they do reconnect, the muscle bands will not be as strong. He hopes to give me 2-5 years in between repeated surgeries. I guess some patients only need the surgery once.  To be honest, no one told me I would need the surgery for the rest of my life.  I'm a little bummed to find out now.  When I have a really bad day trying to swallow, I usually just stop eating for the rest of the day. It seems to trigger, in my case, problems for my esophagus too.  At times, I have food stuck in both my throat and esophagus right at the Nissen site.  Boy, that is not fun at all.  It hurts, I can't talk, cough or make it go down.  I just have to wait it out or occasionally I can get it to come up.  Usually, I make a horrible gurgling sound then a burp-like sound as air is trying to get past the stuck food in my throat and/or esphagus. 

I know this all sounds pretty terrible but the CP Myotomy allowed me to have the Nissen Fundoplication surgery which did get rid of the horrible GERD.  No more GERD except in my stomach.  I can manage that pain easily with some Zantac now and then.  My case is so very complicated by my brain damage that wants to make everything spasm.  I don't believe my experience is typical at all.  Just please make sure you ask your surgeon if he/she feels it is likely you will need the surgery more than once. There are no guarantees on anything. 

I do did get a second opinion and have been reassured I still do have a good surgeon to do the surgery a second time.  Any other treatment options (Botox or Donnatal) would only buy me some time but it would still get progressively worse. I am ready and am at peace with accepting that I must have the surgery again.  I will be hospitalized to make sure I don't develop any complications. 

Gloria (aka Hummerlady)