Need help with a response

[Karyn]

Hello Friends,
As most of you know, I'm schedule for bilat TG surgery next month. I'm already nervous about the procedure, the risks involved and the long recovery time. However, after exhausting all "conservative treatments" and having the source of my debilitating pain confirmed by the 3T MRI, I believe this is my only chance of improvement. As time goes on, I don't find myself improving. Quite the contrary; I'm deteriorating. Physically, I'm able to do less and less every day. My dear Mom, who I know is genuinely concerned for me doesn't seem to understand the logistics of this condition. Below is a transmittal from her that I just don't know how to respond to, without saying things or providing explanations that I've already said:

I am going to say this one last time…I would like you to reconsider having your surgery at this time. I have deep reservations. It is not a proven procedure, very few (medically) of them done….the side effects can be dire, possible leaving you numb, unable to move your own bowels….I’m not even going into the others. It does not have a 75-100% rate of efficacy and, as you said, you have a secondary medical issue that won’t even be address with this procedure. This doctor will be making 2, 4 inch incision and manipulating nerves. I am not negating your pain but you could address this with other methods until the procedure becomes more reliable. I’m fairly certain what your response will be but I need to say this.

Does anyone have any kind words to suggest how I may respond?
Warm regards,
Karyn

[HerMajesty]

Dear Mom,
I am glad you feel that you said what you needed to say.
As I have lived this daily for a very long time now, researching the best solution has been the preoccupation of my life. While you have been on the fringes of the situation and are concerned as any good mother would be, I have been in the thick of it. I have spent hours reading, consulting with professionals, and discussing the issue with very knowledgeable patients including many who have had the surgery.
I could write you a book instead of a note, and not do justice to all I have learned. You raised a smart girl and now I am going to ask you to trust the decision I have made as a smart woman. I did not make this decision lightly and wish there was a different solution; but my research points to this being the RIGHT thing.
I would not even consider surgery if I had any kind of quality of life right now. You also raised a tough girl so nobody knows the hell I go through every day. I understand the risks and accept them as being worth the probable benefit.
I am sorry to put you through worry, but you will have to trust me on this Mom. You did not raise me to be naive or impulsive. I do know what I am doing and I hope you can believe this and take comfort in it.

[Karyn]

Thank you, Hermajesty!
The points you made are very valid and kindly said. I've tried every which way to explain to her that "waiting for the procedure to become more reliable" isn't coming any time soon.
I also don't understand:

I am not negating your pain but you could address this with other methods until the procedure becomes more reliable.

She's fully aware of my history with the med trials, PT, nerve blocks, infusions, acupuncture, chiropractor, etc ... Not to mention the slew of doctors I've seen over the last few years. I have asked her to share what methods she has in mind, but I have yet to receive a response.
Love,
Karyn

[HerMajesty]

Yeah that was kind of my overriding point was to tell her "trust me I am living this and you are not", and to stop trying to justify it by giving her data. People who don't have to live this it seems, are never satisfied no matter how much data you give them. They just keep on with the unsolicited advice. (and I happen to know your mom and my family share the same ethnic background; there is a definite cultural element!)
I was trying to frame a nice way to say "kiss off, it's my business not yours and I have made the decision"...if you read it again with that in mind, you will see that is exactly what it says, very kindly. I try to put major boundaries between my extended family and my medical decisions; I have never received any HELPFUL unsolicited advice.

[Celeste]

Honestly, I wouldn't reply past saying, "Thanks for your note.". That way she knows you saw it, and most importantly, you don't engage. She already knows you're going forward, she just wanted to have her say.

The truth is, if it was happening to her, she'd take the chance to get relief. She has no idea what a luxury it is for her not to be in this pain, so of course it's easy for her to have all the answers. She can still do whatever she wants to do.

I wouldn't use any more energy trying to convince her or get her to understand. Best wishes to you!

[nyt]

Karyn, I appreciate your situation and feel the struggle. On one hand you are very fortunate to have a mother that cares for you very deeply. On the other hand sometimes mother's, which I am one, find it hard to keep their opinions to themselves and trust their adult children's decisions. I love Hermajesty's response and that is what I would write my mother. However, Celeste makes a good point that you may not want to open the door for further discussion so keeping it short might be the best option but I would be uncomfortable sending that short of a note to my mom without a little further explanation. How you respond is dependent on the relationship with your mom. But, if this continues you may have to be sweet, loving and respectful of you mom and just out right tell her this topic is no longer up for discussion. Only you can tell when and if it ever gets to that point. I hope it doesn't come to that because there are many very loving mom's out there who mean well but in the long run their overbearing behavior damages the relationship with their adult children.

[vickinmn]

This discussion is interesting to me in that I've been just dealing with the fact that I have something called PN, that makes it very hard for me to sit. I am not in agonizing pain like you are, Karyn or many others and I'm thinking "I" want to have surgery, I can't begin to picture how much you must want to have surgery! But this does help me to understand why Dr. Antolak isn't urging and recommending surgery. I truly did not understand the gravity of the decision to have surgery and the possible risks.
I come out of my appts. with him very frustrated, that he's encouraging me to continue the possibility that I will get better with the drugs and the injections or that I consider living with this and managing it with "self care" unless I am in debilitating pain 24/7 and can't get off the couch. We're just not used to hearing that there is a condition that can't be easily fixed, living in our country and that there is a real risk in trying to fix it. Not many people hesitate to have back surgery now a days, but not long ago, MANY wouldn't even considerate it, because of the poor success rate,and the possibility you might not walk again; no matter how much pain they were in. It's a hard thing for any of us to understand how it is that they can give someone a total face implant and yet they can't fix a nerve in the derriere. I know I am surprised that I have a illness that can't easily be fixed. It is enlightening to me that your mom isn't saying "Go for it!" She's obviously a bit more informed about the risks than I am. But it is so hard to see your adult children make decisions that give you great fear will be something regretful for them. Like someone else said, she says it because she loves you and sometimes people maybe want to be free of guilt if it doesn't turn out as well as you'd hope. I'd say, "Thank you, Mom. I'm glad I have a mother and I'm glad I have one who cares about my welfare." And then do what you need to do, listening to her concerns and getting answers for anything that might be a "red flag" to you, as well. Parents can be very frustrating, I know, I am one! But my mom has been gone for a number of years now and I still think, oh how I wish I could tell her about this pickle I find myself in! You never appreciate parents more than when they are gone.

Love,
Vicki

[Karyn]

Thank you ladies, for your comments and support. I do know she comes from a place of love, concern and not fully understanding this condition. I have something deficient within myself that desperately wants my Moms unconditional approval, love, comfort and support and that's what this is really about. I don't want to exclude her from anything. Nor do I want to censor how we communicate with each other. My mom is my very best friend and I do feel that she's been exceedingly supportive to the best of her ability. I know if she truly understood how much pain I'm in and how drastically the quality of my life has diminished that she wouldn't want me to continue this way. This condition is very hard to understand and relate to! Even for me, who's living it on a daily basis.
So, I AM going let go of trying to make her understand. Understanding this is a lot to ask from someone who's never experienced it. Not fair of me to have that kind of expectation of her or anyone else. I will put my big girl panties on and deal with it! She may not agree with my decision but the bottom line is that she loves me and I'm OK with her not agreeing.
Warmest regards,
Karyn

[vickinmn]

Oh, what a sweet, wise response, Karyn. You have gone through a lot in your young years, already. Blessings on you!

[Karyn]

Thank you, Vicki and I wish ooooodles of blessing for you, too!
Love,
Karyn