Don't get me wrong, I know Dr Tew knows what he is doing. I have read enough positive things about him. But I am leaving the appointment a little irritated. We went over my symptoms and he tells me I scored 10 out of 10 on their list.. Meaning I have symptoms in every category.
He tells me and shows me that my chiari is 12mm and that my flow is blocked dorsally severely. I have no gag reflex, I couldn't feel his pin pricks on my hands legs back or even my face. He says surgery would be the option. But then mentions my lack of sleep and asks my husband to keep a diary. I offered to do a sleep study if he wanted me to.
He then tells me that since I weigh 180, if I could lose 50 pounds my symptoms a MIGHT improve a little or might not at all. But that losing weight would be a good idea. I explained to him that I used to weigh 270 which and in 2009 I got down to 160 after lap band surgery and maintaining at 180 with my symptoms getting worse every day, week, month whatever. I told him that I can show on my medical records I have never weighed and maintained less then 180 pounds since high school and that a plant based diet is out of the question for me. I can't eat lettuce, it doesn't go well with the lapband. Then that was it... The nurse nancy came in and went over the diary and I lost it.
I cried and I bitched about what he said with the weight. It did not hurt my feelings, I am proud that I have kept off 90 pounds in 6 years! 180
Is me and always has been. And exercising on a daily basis and having two kids with special needs and tutoring and therapy and their appointments well I don't have the time to exercise. Not to mention most people with lapband don't even keep the weight off. Sure I could lose 10 pounds if I went to get a fill but I am not doing that. My PCP and lapband surgeon are more then pleased with the progress I have made and kept it off.
Nancy of course explained that it has just been helpful to other people with chiari and losing weight prevented them from needing or wanting surgery. I said I understand that but I'd like to know how many patients have been here that have had some kind of weight loss surgery, and also how many people lose their 20-50 pounds and still needed surgery then gained it all back in 6 months?
I told her I am just shocked and disappointed that he tells me how "bad" I am and how severe my symptoms are but he wants to wait for surgery. In 6 months my life has drastically changed. I don't want to be the person on the wait and see list that needs a cane in 3 months because I can't walk any more. I understand surgery isn't a fix all by any means but don't tell me how bad my chiari and symptoms are and then ask me to lose 50 pounds to see if it helps. I don't want to lose weight I am happy where I am. And I am actually healthy besides the chiari!
So he wants me back in a month and I asked her what for? I won't be able to even lose 10 pounds in a month but he wants me to drive two hours to weigh me and see how I am doing? My doctor can do that locally.
I also told nancy that if I do get worse in 3 months if everything continues at the rate it's going then I'd have to wait another 3 months for surgery because I will not have it in the summer, ALL my kids apts and testings are during the summer and I don't have time to be "down" when they are out of school.
So as we were making my apt Nancy came back out and said she talked to dr Tew and he said he would do the surgery, she said she explained what all I told her (which most of it I told him too) and that he understands that after may I wouldn't be able to do surgery until school starts again. And for me to think about it and let her know.
I told her I don't want surgery if he doesn't think it will help me or he doesn't want to do it, that's stupid.. He is the "expert" not me. I just wanted to make it clear of what my thoughts are and that I just don't understand why with all he said he wouldn't want to do it any ways. And she said that he said surgery would probably be beneficial but he was simply trying to give me options to try before choosing surgery. Ok I understand that.. I get it. But I don't want to take the chance of getting worse.
And now I am just conflicted... No one *wants* to have surgery but no one wants to be in pain every day either or have it get worse! I really think I want the surgery and the sooner the better with everything I have going on and coming up, my husband and family thinks I need the surgery, but I don't know if I want to call them back in a week and say yes I want surgery... I don't know if I want to go back at all. I know I am just upset and confused and I know he is a great doctor and there isn't another one outside of this clinic that would be better then them. But honestly what are your thoughts and opinions?!
I’m not sure his reasoning. Maybe the wait period he seems to have everyone do is so the person has time to be sure. I do know that there are some who prefer to put up with the suffering instead of having surgery. And I know that a diet can help with symptoms. Not just weight loss but eating healthy. I did the diet thing several years ago and it helped but didn’t realize what I had yet and kind of drifted back to a more careless diet. Well my sympyoms got worse again. And I’ve struggled to get back to eating better and not all that successful.
So all of my rambling aside, if you want the surgery and he is willing why would you not go back?
I honestly do not eat that bad any way. Sure I don’t eat all the veggies and fruits I should be, but I don’t eat junk or over eat either. Hell I can’t over eat with the lapband lol
As for him being willing to do it but not going back… Well I guess I was kind of hoping to hear a doctor say “yes you need surgery” then make such a big decision on my own ya know? And yes he did say surgery would benefit me, but might benefit me more if I lost some weight beforehand. And he did say eventually I would need surgery because I am already at the “moderate to severe” side of it.
Guess it is more of the questioning myself on the decision. I really thought I would be all for it but I think him wanting to wait… Only a month… Makes me wonder. My husband says call next week and say you’d like to go ahead with surgery. His mom who is a nurse at Methodist and worked on the neuro unit for years also says yes call and schedule the surgery. So why am I hesitant now?!
He told me that my chiari situation would not get better without surgery but that with a plant based diet my symptoms may improve some. The 2 months between visits helped me decide about the surgery. I think I had to work it out with myself.
When I went back we talked about my diet change. He told me then I believe you need the surgery. And I myself know I will only get worse without it. So now it was a no brainer(pun intended).
It’s a big decision and takes some thinking about it. But bottom line is it won’t reverse itself. It can get worse. Is it worth it to try to get relief? Just because he was gonna have you come back in a month does not mean he thinks you don’t need the surgery.
Thanks Donna, I really appreciate your replies. And you are right about him not thinking surgery is necessary because he did say at the beginning that surgery would be an option and beneficial.
After talking to my mom and everyone else lol they all think surgery is the best option at this point and with my situation with my kids and everything, waiting 6 months might not be the best idea for me either. I don’t want to get worse… But I also don’t want to regret the surgery either.
But going with my gut and everything I know and read and my own sons experience with it, I think I will be giving them a call to schedule it.
Wow Beeba… Ok so at first I thought you were gonna lecture me about weight haha
Yes I agree with everything you said… And didnt think that hey he probably didnt completely listen to everything else I said about my weigh lots journey but that makes sense! Lol
And yes you are right, I shouldn’t worry about what they think about me lol and yes I am going with my gut and my husbands and everyone else that has to put up with me on a daily basis and I am goin to call tomorrow.
Thank you for this… Really… I think this is just what I needed. 
Beeba said:
Lets face it - his is an opinion most take pretty serious. He did state from the beginning that surgery is probably necessary and beneficial. I would have to say any surgeon worth their salt will discuss weight as it can impact many areas of the body - including pain. In a way I find it somewhat commendable when a surgeon suggests trying all other options first. I don't think he thought it would cure you, but perhaps lessen symptoms, and make you a healthier candidate in general for any type of surgery. In general they don't listen once they have their mind made up - so he probably didn't listen when you talked about your wonderful accomplishments after your previous surgery. This is a tough surgery and a rough recovery - my guess is he thought let me operate on her at her best - well you are there - it has been clarified with him and he agreed to schedule. In this case - if you truly feel he is the best - then suck up the pride and get calling. They don't have to be our friend they just have to know what they are doing. It would be great if we liked them as a person you would like to hang with at a party - but few of them are actually that person. You have obviously come so far - please don't let THIS be what breaks you. I am sure you had your feelings hurt as you felt like you were doing well and according to the drs in THAT field you are.... Just let it roll off. Come here to complain go there for surgery. Regardless of it all - I am sorry that this upset you in anyway. BTW - just think how well you may do once you can get off the sofa again... You may just wither away!!! Lol
Best wishes go with your instinct it usually knows best.
Thanks Beeba, I really appreciate everything you have said, and you are right. I am sure every doctor would love to have a healthy perfect weight, no other health conditions person for surgery lol But how likely is that? Even before my lapband I wasn't asked to lose any weight because to them I wasn't THAT much over weight to begin with... granted that is a completely different surgery. But I did have to quit smoking one month before surgery and the "tested" some how to make sure I had quit. And I did, cold turkey the day they said it. And I will quit before this surgery too because I know it can complicate things and is better for me any way.
So this morning I called Nurse Nancy, and first I apologized to her for being rude and taking it out on her. She was so sweet and said she completely understands that I was upset and all around confused, and assured me that Dr. Tew does believe surgery will help me, but he was just giving me another option to try first. She said she understands and so does Dr. tew that with my situation with my boys and their medical needs that I can't just have surgery whenever, it has to be planned and arrangements have to be made for all their appointments. My kids come first ya know. And during school is the best time for me to have down time for my own medical issues. She also said please don't worry about it, I didn't hurt her feelings, and to promise her that I don't feel bad or guilty for being upset, then she says, we start fresh, I didn't think anything of it yesterday and you didn't hurt my feelings.. I have had worse lol So I feel better now.
So I should get a call in a few days with some dates to choose from as I told her that I do have to plan but my ex husband will help me with the boys and so will my family, and I won't miss many of their appointments except tutoring and therapy for a week or two. So it will be ok. I am hoping it is before March 15th, to give me a few weeks before their spring break. If it is after that, then I will have to wait until after spring break is over, which would be fine too. So I feel a little better after talking to you, and talking to her this morning. I think it is the right decision for me, and all I can do is hope for the best.
Beeba said:
Not at all!! More just a "don't throw the baby out with the bath water" , "don't cut off your nose despite your face" type input. most (not all) see us as a mechanical thing - not a person. So for their ultimate success they want the ultimate - for lack of a better word - the "perfect specimen". There is reason drs don't operate on their own children - that is a person then. You sound healthy and you seemed to have mastered the struggles that can come with lap band surgery - the easy way out!! My aunt fanny!! That is tough one with long term life changes. If the drs who are the best in that area say you are at your ideal(not longer life endangering) then you are the best you can be. You may see many drs in this process - know what you know - and don't question yourself - flat out sometimes they are wrong - and few take a look at your whole picture. Medical care has become very myopic as I have found. Not my area - then nothing is wrong. Well I don't have all the degrees I have seen over these last few years - but that sure ain't true!!
I'm glad you got everything straightened out. I know a lot of people are terrified of having brain surgery so I think they like to give you options in case you want to hold off on scheduling. Plus doctors get so caught up with that ridiculous BMI chart that they don't take your overall health into consideration. Dr. Ringer didn't ask me to lose weight but it could be because in our first meeting I told him I'd tried various diets to see if it would help, was gluten free due to celiac, and that one of my major issues was fatigue. My husband was telling him how I used to go to the gym every single day for 2 hours and now I couldn't walk around the block without being sick for 2 weeks! Maybe he picked up that suggesting diet and exercise wouldn't work.
Dr. Ringer did leave the entire decision up to me. He told me I would not see symptom improvement without surgery and that I would need monitored because symptoms could progress and would probably get worse but that I was unlikely to die or become paralyzed if I opted not to go for it. I went ahead and scheduled because things were bad enough, I didn't see a reason to sit around and wait for things to get worse.
BTW: Nancy is so nice! I'm allergic to all types of glue or tape so my incision got so inflamed. I was scheduled to go and have it checked again but we got a freak blizzard and the drive was 5 hours. Nancy had me take pictures and email them so she could keep progress on the allergic reaction and I could stay home!
I agree, I mean I am not thrilled with having the surgery but if it will help me feel a little better even just with my head I will consider it a success! Just like everyone else I am a nervous wreck but.. hoping for a good outcome.
The whole BMI chart seems to be crazy to me. I really couldn't imagine weighing 130 pounds. Even at 160 I wear a 9/10 it all depends on body build too. Overall health is important and for the most part I am healthy besides the Chiari and of course I need to quit smoking which I will before surgery.
I also used to be a gym rat... after my surgery for over a year I was there every morning when I was a stay at home mom... then a divorce happened and back to work and feeling like crap sooo haven't been in two years now. But at least I have maintained my weight and a weight that I am mostly satisfied with, I have put on my 10 winter pounds as I usually do but always lose it again in Spring and summer. And being even less active last summer didn't help. But everything just wears me out any more.
Thank you for your reply, I should hear from the surgery scheduler today or Monday. I am anxiously waiting so I can start planning for work and kids and all that fun stuff, then I will go into anxiety and freak out mode lol And that is awesome about Nancy, she was really sweet, I am glad you had such a good experience too. Random question I keep forgetting to ask those that went to Mayfield.. after surgery were you in ICU at all or is it like a floor for all neuro patients any way? Did you have a private room?
Anglyn said:
I'm glad you got everything straightened out. I know a lot of people are terrified of having brain surgery so I think they like to give you options in case you want to hold off on scheduling. Plus doctors get so caught up with that ridiculous BMI chart that they don't take your overall health into consideration. Dr. Ringer didn't ask me to lose weight but it could be because in our first meeting I told him I'd tried various diets to see if it would help, was gluten free due to celiac, and that one of my major issues was fatigue. My husband was telling him how I used to go to the gym every single day for 2 hours and now I couldn't walk around the block without being sick for 2 weeks! Maybe he picked up that suggesting diet and exercise wouldn't work.
Dr. Ringer did leave the entire decision up to me. He told me I would not see symptom improvement without surgery and that I would need monitored because symptoms could progress and would probably get worse but that I was unlikely to die or become paralyzed if I opted not to go for it. I went ahead and scheduled because things were bad enough, I didn't see a reason to sit around and wait for things to get worse.
BTW: Nancy is so nice! I'm allergic to all types of glue or tape so my incision got so inflamed. I was scheduled to go and have it checked again but we got a freak blizzard and the drive was 5 hours. Nancy had me take pictures and email them so she could keep progress on the allergic reaction and I could stay home!
They did my surgery at Good Samaritan Hospital. After the recovery room I was moved to a special neuro floor there. I did have a roommate, but luckily she was quiet, no bother. I have no real complaints about the hospital. There was an issue in which the nurse forgot a dose of my pain meds (lady beside me had some bleeding and she was getting that under control, then another lady on the floor went kind of crazy and was trying to check herself out) but it's not all her fault because I didn't speak up. I know that if I had called and reminded them someone would have came asap because anytime someone hit the call button they were attended to promptly. I wasn't really in a lot of pain so I just waited for the next dose.
They asked if I wanted University or Good Samaritan however being out of state I was clueless. I told them either was fine. I've heard that University hospital has a new neuro ward with all private rooms that is subject to availability. A couple of people have given it really good reviews on this site.
They didn’t ask me. I will be at university hospital. And they told me they would put me in a room after recovery not icu. And that they’d put in for a room that someone could stay with me. That is subject to availability.
I had Dr. Zucarello at Mayfield. I had a private room, but wasn't in ICU, at The University Hospital. I was on the neuro floor and they were constantly doing neuro checks. Name, date and place . . . squeeze this and move that, etc. They were very good and knew what they were doing.