UPDATE AFTER MEETING WITH GI DR & SURGEON

First, I'd like to apolgoize to Judy, Char, Charlotte & Katherne for not responding to any of you after I posted a discussion regarding "3 Months after my First Botox Injection." Somehow, I've become lazy in reading through all the postings or responding to any of them. I hope all of you are doing okay.

I had an appointment with GI doctor a little over two weeks ago to discuss the possibility of another botox injection. He said that the injection he gave me was supposed to last at least 6 months (and mine only lasted a couple of months). He was afraid that if he gave me another injection, he'll have to increase the dosage for it to last longer than the two months. He explored the possibility of having pyloroplasty done, which Katherine brought up in my last posting.

My husband and I did meet with the surgeon two days ago where he explained how it's done. He was kinda excited by the fact that he hasn't come across anyone who has GP caused by vagal nerve damage during atrial ablation. He apparently has done this pyloroplasty procedure on ulcer patients. He also explained that he doesn't think that the damaged vagal nerve is causing the severe pain, and he wanted me to explore this issue with my cardiologist, who I'm meeting for a follow-up appointment this Monday. Before meeting with the surgeon, I actually planned on cancelling my cardiologist appointment because I just didn't feel like it, but after our meeting with him, I decided to keep my appointment.

I'm not sure if you guys know that with this procedure, the possible long-term effect is rapid dumping and/or long-term diarrhea. I'm not sure if I would want that. I think it's better to have slow emptying and having to go once a week. Can you imagine being in a public place and you end up going in your pants? So I haven't decided what to do yet.

Another update is I finally received my denial from Social Security. Their letter stated that although I have a serious heart condition, it's being regulated by the medications; although I suffer from migraine, it's not that severe anyway; although I suffer from depression, I can still talk about my condition, remember dates, etc., etc.,; and although I have gastroparesis, I have not lost a significant amount of weight." My husband and I went ahead and saw the lawyer that I was in touch with last December and hired him to handle the appeal. Before I got my denial, I also wrote my two senators, who actually responded. I think I will ask for their assistance in getting the hearing scheduled sooner. In our state, we were told it takes 12-16 months to schedule a hearing, can you believe it?

Will it be useful for my appeal to have my doctors write something about how disabling GP is. My GI doctor does not have any other patient with GP so I'm pretty sure he doesn't have any idea on the kind of suffering we all go through.

Someone posted a question regarding hair loss recently. I just want to confirm that I've had the same problem for several months now. I noticed it myself but I didn't say a word, not even to my husband, until I saw that posting. He did notice it, too, but he never dared to ask me.

Also, lately I noticed that after I wash my hands, they're both tingling. Has anyone experenced that lately?

I think I should turn in now. It'll probably take me an hour to fall asleep.

Good night, all!

Love,
Lillian

P.S. To Charlotte - thanks for asking about the pups -- my babies are fine. Aspen, the white husky, has been unusually clingy towards me. During the day when I'm laying in bed, I have 5 big pups in bed with me. It's good the other 3 are quite independent. I still miss Kota, though.

By Kate1
Posted May 31, 2008 at 10:06 am

Hi, Lillian. I just thought I would respond because I have also been dealing with a Social Security denial. Similar to what they said to you, they told me that my GP isn't that bad because my weight has improved. They had similar comments about my other conditions. I think it's going to be a long road... I was also told that it would take over a year to schedule a hearing, and I still have to have one more rejection before it goes to that level (and I was told to expect to receive a rejection). Ugh... I think it would be very helpful for you to have a letter from your doctor stating how disabling GP is, and (from what I have been told) he should make a statement to the effect that you are not expected to improve enough within the next 12 months to be able to return to work.

Anyway, good luck with your application, and with the treatment you are considering. I know very little at this point about botox and pyloroplasty, so I have nothing to offer as far as that goes (I've just been learning about these options from reading other people's posts on this site). I wish you the best and hope that you get some relief.

Take care,
Kate

By chewy1
Posted May 31, 2008 at 1:07 pm

Lillian,
It's good to see you back with us. I think that everyone goes through the times of just not being in the right mood to post comments.
I had already talked to Kate about the Social Security. I absolutely think getting statements from your doctor makes a big difference. My lawyer actually had a very simple form for my doctor to fill out and send to SS. I don't remember what all was on it but I do know that it had a place to list all my conditions, medications (side effects such as sleepiness) and a place to comment on whether it was expected that I would be able to return to work in the future.
I know that SS will also send your doctor things to fill out. I know that my doctor did everything he could to help. He was one the people who kept pushing me to appeal when I was just going to give up.
By all means...don't just quit fighting. It is a long battle but it is worth it, just to relieve financial stress in your life. My back benefits helped me to pay off some large credit card bills and that has been a big help.
I went through the standard denials too. I think they do it with the hope that you will just give up. My lawyer though was right on top of it because he had me fill out and sign different forms that would be needed during the process..that way when it came to the appeal each time we didn't waste time. He was able to immediately send it to SS.
I was told all the junk that you and Kate talked about too with the problems not being severe enough. However, my lawyer pointed out to me that even if one problem wasn't considered severe in SS eyes, that the big picture that needed to be looked at was the combination of so many problems.
So, no matter how insignicant you might think a symptom is make sure it is listed, along with the need for frequent restroom breaks or time to lay down during the day to rest.
The lawyer kept asking about things like that when we talked but I hadn't ever considered that as being important. But, at my hearing, the judge commented on the same things, and the occupational expert said that not only was the job I was trained for (teaching) was no longer something I could handle with the conditons and special needs but that there really isn't any job that was available for people with these issues. She said very few employers would hired someone who might have to make frequent runs for the restroom and allow the employee to take frequent or extended rest periods.
I'm sure if your lawyer has handled SS cases he will be up on all these things . I was fotunate that the lawyer that I used handled 99% ss disabilty cases.
He told me fromt he beginning that my case was absolutely going to win because of the number of the problems.
So, hang in there and keep fighting. It is frustrating but it can be done.
Glad to see you back.
Judy

By twin
Posted June 1, 2008 at 11:57 pm

Hi Lillian,
I feel for you in your decision making process. We are so at the mercy of these doctors who really don't know what will help us. I had the pyloriplasty surgery done it will be 2 years ago June. I also did have the pacer implanted in June of last year, I now have dumping, and delayed emptying, it rotates, which is very annoying.. I truly feel for me that the pyloriplasty surgery was useless, it was just the next step that the doctor needed to take before getting the pacer approved, which took alot of work,!!! but I'd have four fewer holes in my stomach, without that surgery. I'm thinking about you, take care, Karry

By msmac
Posted June 2, 2008 at 10:24 am

Hi, I am relatively new on this site, I belong to yahoos gastroparesis postings, but I wanted to say that I had a pyloroplasty in April and am still recovering from it. I will be happy to answer any questions you have about it in detail. Just email me seperately and I will get back to you.
I can say that each doctor is different. If you give botox to close together you can permanently damage the valve, but some doctors feel that you should repeat the shot within 4 months of the first one to give it a longer time to last.

Best wishes and I look forward to your email.

By stekcsf
Posted June 2, 2008 at 5:00 pm

interesting.....this is exactly what the Dr. want to do with my daughter(11 yr old gper) first the botox then the ploroplasty. thoses that hd the ploroplasty did it help with nausesness?

thanks tricia

By Kerri-ann
Posted June 2, 2008 at 11:47 pm

LILLIAN IS IT? HI I'M KERRI I AM INTERESTEDINTHIS PYROPLASTY PROCEDURE WHAT IT IS AND WHAT IT HELPS WITH? CAN YOU HELP ME I GO TO GASTRO NEXT WEEK, DO I NEED BOTOX 1ST BEFORE THIS SURGERY? HANKS KERRI

By Char
Posted June 3, 2008 at 7:36 pm

It's good to see a post for you. I hope your cardiology appointment goes well. I'm glad you were able to get in to see the surgeon soon after your GI appointment. That way you maybe something can be done sooner then if you had to wait for the surgical appointment. I wish the botox would have lasted longer for you, but I know there are others who have said that theirs didn't last 6 months so they had it done again sooner then that.
Well, keep me posted.
It really is good to hear from you,
Char

By docandkate
Posted June 3, 2008 at 8:05 pm

The pyloroplasty did help me with nausea. I did not develope dumping syndrome after the surgery. Sounds like each dr. has a different view, and each patient has a different journey.

Puppies on your bed- what a delight! We need to indulge in whatever makes us smile. Not only is it good for us, but when we are happy, our loved ones are happier. I just had my 2 month old granddauaghter visiting. She just makes me smile, smile, smile! Katherine

By huskylover
Posted June 4, 2008 at 1:54 am

Hi Kerri-ann,

From what I understand from the surgeon, pyloroplasty is where they stretch or extend the opening of the stomach, that is why patients who get this done experience rapid dumping. However, based on what I've read from people on this site so far, they all experienced different end-result after the procedure. So still I'm not sure if I will go through with it. What I really want to get rid of is the pain that comes with having GP and I think the botox injection did help, even for a couple of months. I think I will try doing that route again, and maybe this time, it will help for a longer period. I think you should try the botox injection first, and hopefully, it will work for you as well. I will be posting very shortly another update with regards to my cardio visit.

Let me know what you decide to do and I hope everything goes well.

Love,
Lillian

By Kerri-ann
Posted June 4, 2008 at 1:27 pm

Dear lillian
thank you so much for getting back to me. I am going to speak w/ my dr.s re: botox within the next 2 wks so hopefully that will help. I get so backed up if i do solid easily digestable foods that i end up on liquids or obstruct but some days i am starving i can eat anything not nailed down, then, pay a big consequence. Again thanks and i will keep you posted. oh, ss disability always denies 3 times before they approve, so keep fighting them.

By docandkate
Posted June 5, 2008 at 11:07 pm

Perhaps anyone considering pyloroplasty should talk to their dr. further. My surgeon cut the muscle, then sewed it back together at a 45 degree angle so it can't respasm. I had a good result, but it did not help with pain. I did not have a stretching or extending of the pylorus as mentioned by Lillian. Prior to this proceedure, the pylorus would spasm shut, and food would remain in the stomach or I would vomit. No more vomitting.
Katherine

By huskylover
Posted June 6, 2008 at 3:15 am

Hello everyone! I tried posting another update two nights ago after I replief to Kerri-Ann's posting. I typed a long, detailed update after my cardiology appointment but I made the mistake of checking the profile of another member even before posting my discussion, so naturally I lost the whole thing. So here I try again.

I had my 2-month follow-up with my cardiologist last Monday and she wasn't very thrilled with me. My blood pressure was 176/120. I told her in my last visit that I had stopped taking all my HBP medications, including my coumadin for the simple reason that I could feel them just sitting in my stomach -- which actually made me feel sicker. She did ask me then to go to this pharmacy to get all my prescription compounded. Do you think I went? -- no, I just went for my retail therapy. Most of my doctors are south of where I live and they have TJ Maxx and Ross stores, and those two are my favorite places to shop. I had to get some new tops because I had lost some weight and the ones from last year are too big. She gave me new prescription and she also wanted me to try a patch to put on my arm in the morning and to be taken off before going to bed. Even though my skin has been very sensitive lately, I thought I'd give it a try since it's better than oral medication. I also discussed with her the pain that comes with having GP, which the surgeon from last week's visit said I should mention to the cardiologist. She thought I might be having esophageal spasms and she's hoping the patch would help. And do you think this time I went to the pharmacy? -- NO. As you can tell, I've been very stubborn when it comes to medication. I feel like I've wasted so much money on medications that don't work. Why can't doctors give samples -- isn't that the reason why sales representatives from pharmaceutical companies visit these doctors' offices -- to give them samples for patients to try and if it works for the patients, they can then give them prescriptions. I know all these because I used to work for a pharmaceutical company.

Now I can't recall what else I typed in the other night. I'm pretty sure it didn't include the ranting that I just did.

Oh, I think I wrote something to Char -- I hope you're feeling better these days.

And to Katherne -- even though I don't have any grandkids yet (my daughter who's turning 25 this year said she's not planning on getting married & having babies until she's 30), I'm having fun with my sister's almost 2-year old grandson. They live in So. Cal. Whenever my sister's babysitting him, I make it a point to call and talk and sing to him so that he'll recognize my voice. I've actually visited him 3 times since he was born and I'm planning on going to CA for the holidays. My husband will stay home with the pups. We've stopped going out of town together since we rescued a total of 6 between July 2005 and August 2006. Of course that doesn't include the original 3. Now we're down to 8 since we lost the first husky I ever loved last April 12, 2007.

When I see my GI doctor and neurologist next week, I'll see if I can get a letter from them to be included with my appeal with Social Security.

I also have an appointment with a dermatologist next Friday. I'm not sure if I've mentioned that when I was on antibiotic and cough syrup back in early May, I developed some rashes around my stomach and even my belly button got swollen. It took that long to get an appointment -- it's good the rashes are still there. Who knows what else is going on with my body.

Will give you guys an update if I find out something interesting, or if it's even connected to GP.

Love you all,
Lillian

By michdey
Posted June 9, 2008 at 6:26 pm

Lillian,

First of all, wrap your arms around yourself and squeeze--thats a big hug from me! Now, Social Security is trained to deny everyone--they just learn different ways to say it so go ahead with those lawyers--in the end they are worth every penny. And definitely do mention the GP--it is a disabling disease and deserves to be mentioned right up there with depression, heart disease and arthritis. I used my senator to get my hearing moved up--it was moved up by almost a full year! It takes about a year for a hearing to be held here too and I was facing foreclosure on my house so he had the trial moved right up--I couldn't believe it. Use every "tool" at your disposal!
Also, I believe it was me that mentioned losing your hair. Mine is falling out in clumps. I really need a haircut but I am embarrassed to go to the hairdresser--what if a whole bunch falls out in his hand--do I say something before hand? I don't know what to do. I need to get my hair cut eventually because even though it is falling out, it is still growing lengthwise. It is so upsetting! Hey keep your chin up about your SSD--just when I was ready to give up, mine came through and with much more than I expected!! I just got the good news today that my gastric pacer surgery insurance denial was overturned. Good things still can happen. Chin up my friend.

Michelle

By Char
Posted June 10, 2008 at 1:30 pm

Lillian,
I hope you can try the botox again before you try the surgery. That seems like it would be best since the botox is something that is temporary, but you know you have gotten some relief from it in the past, as opposed to the surgery that wouldn't be temporary so once it's done it is done.
I hope you'll go get this patch and see if it can help you feel better.
I hope things are looking up for me. I only have a few more days of antibitotics, that I've been on for forever. I was started on antibitotics before I got out of the hospital this last time, because I got a port infection and then when I was almost done with them I got bronchitis and they added another 10 days. Antibiotics aren't the easiest things for me to tolerate. Then I had a few rough days last week, went and saw my surgeon and found out my pacer had turned off. Since it is back on now the nausea has gotten a bit better. Friday was my birthday, but I spent most of the day in the bed with a migraine. Saturday we had to put my dog to sleep, he developed cancer and it progressed very quickly, to fast for anything to be done about it. That was a hard day. I'm leaving now to go get another nerve block for my migraines so hopefully I'll have a few weeks without them. My best friend is also coming into town tomorrow night so that gives me something to look forward to.
Well, I need to get going. I hope you are having a good week so far.
Char

By Charlotte1
Posted June 11, 2008 at 2:54 am

Michelle,

Congradulations on getting your disability. You definately need it to get better from GP. If you are worrying about money for the bare essentials it definately makes the GP worse.

Hope you are dong well.

Charlotte

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