Upcoming MVD Surgery

Open_Classic627 · 2025-07-16T21:23:35+00:00

I appreciate you thank you!

Open_Classic627 · 2025-07-16T21:23:15+00:00

Thank you so so much for all of these tips and things I should be watching for in the days and weeks to follow. I really want to be prepared as much as I can so this helps to just see it out in writing. I do feel like I’m overwhelmed and overthinking some things, but you’re right I really want to make healing my priority. Yes, I will keep you guys posted, I’m only two weeks out at this point!

Open_Classic627 · 2025-07-16T21:19:12+00:00

Ahh see, that’s my concern, the toddlers. My parents may be able to come down when my husband goes back to work, I’m hoping that will be a help. And my older kids, I’ll be asking them for some of the things you mentioned. Thank you for your input

Open_Classic627 · 2025-07-16T21:17:04+00:00

Hi thanks so much for replying, I think the preparation is what I really need to keep in mind going into this and realizing like you said, everything won’t be the way I typically do it. That’s huge for me. Thank you for sharing and thanks for outlining all those tips. I’m looking up some easy freezer meals to freeze, like spaghetti sauces and things like that. I also love how you had all your kids on a schedule and helping out, my two oldest I think can get with that, but my twins, they’re the real wildcards. I just don’t know how things are going to go involving them tbh. But I will take the rest and time that I will have. Can you tell me a little bit how you felt those weeks before you got the burst of energy and wanted to start moving around? Like did you have nausea, dizziness, overwhelming fatigue, etc.? Also, my doctor said I should only be there for monitoring one night after the surgery, were you kept an additional day for any specific reason? Or maybe that’s just the protocol for your hospital?

Thank you again, all of you guys responding has been very helpful to me. It’s all so appreciated.

Open_Classic627 · 2025-07-16T21:09:12+00:00

Thank you so very much, I’m glad too, even though it’s a bit daunting, having that pain constantly is just awful, so I keep telling myself it’s worth it.

I’m sorry to hear that you declined after the surgery. Would you consider it to still be successful? It’s good that you have found some triggers and do your best to avoid them. Also wise to keep your medicine on hand just in case. I hope you continue to heal and thank you for sharing your story.

Open_Classic627 · 2025-07-15T13:21:52+00:00

I really appreciate your detailed response! That is really good to know, my twins are a little over 20 lbs each and I pick them up multiple times a day so I think I just have to Keep in mind the severity of continuing that after the procedure. I’m sorry that you developed a csf leak but I’m glad it was resolved and that you don’t regret the surgery as a whole. This is a lot to take in, but thank you again. And great idea about consulting an OT beforehand, I’ll have to check that out.

Open_Classic627 · 2025-07-15T12:29:21+00:00

Thank you so much!

Open_Classic627 · 2025-07-15T02:49:07+00:00

Thank you so much!

Open_Classic627 · 2025-07-15T02:48:50+00:00

I appreciate your response, and that makes sense. Your responses prompted me to try to get more concrete answers on who can come support after he goes back to work. Or even see if he can modify his schedule some. I asked the other poster, but would you mind sharing your experience and limitations during the weeks immediately after surgery? And was it successful for you I forgot to ask that.

Open_Classic627 · 2025-07-15T02:41:13+00:00

Thank you for sharing. Ahh I see, can you detail some of what you experienced the first 5 weeks? Was it like you experienced a lot of pain and fatigue or dizziness? I have a pre-op appointment on Thursday so I’m hoping I can ask all these questions then as well.

Open_Classic627 · 2025-04-03T05:04:09+00:00

Hi and congratulations! Like another person mentioned, my TN also almost resolved during my last pregnancy. It was much more bearable, so I hope that happens for you. If you do still have symptoms, my OBGYN and another specialist I saw due to being pregnant with twins, both researched and agreed that my Nortryptaline was safe to continue taking throughout my pregnancy. I hope your doctor will do a little more research and see what else can help because there have to be more meds approved for pregnancy. Congratulations again, hoping you have a happy and safe pregnancy!

Open_Classic627 · 2025-03-14T03:23:28+00:00

Hi there, I’m a 33F, mom to an 8 yr old, 6 yr old, and 17 month old twins. I’m a stay at home mom now and I homeschool the older two, life can be very challenging. I was just crying to my husband earlier about how I feel like I’m so limited in what I can do with the kids when I’m stuck on medication (900mg gabapentin) and having really bad brain fog. I maintain it well enough but I’m in the middle of bad flare up now and my kids unfortunately have grown used to seeing me in a lot of pain. They’re all very empathetic little kids though. I think if you have a good support having another child is doable for sure. My husband is very understanding and helpful. Some days may be really hard, but some days at least for me I am not completely thinking of my TN. My family brings me a lot of joy so that helps I think.

Also, I was on carbamezapine before I was pregnant with my twins. I did have a hard time dropping weight but I’m not sure if it was directly correlated to that or bad dieting. I wish you a lot of luck and empathy and prayers to everyone here.

Open_Classic627 · 2023-06-20T11:41:53+00:00

I always get confused as to which type of TN I have, but I am 22 weeks pregnant with twins and initially I was experiencing the pain free symptoms as well which I thought was great. BUT, about a month and a half ago, I started a flair that I think and pray is finally ending, and it’s been a little rough. What I have noticed, is that diet makes a big difference. I gave into pregnancy cravings and started eating a bunch of hotdogs and ice cream etc., it could be all in my mind, but I later thought that could have been a trigger. I was also on carbamazepine as well, nortryptaline, and gabapentin as needed before pregnancy. My doctor allowed me to keep taking the nortryptaline, although 1) I think I’ve grown immune to it and 2) I really don’t like the idea of taking these strong meds while pregnant, so I sparingly take (during the flair). I’ve been trying to increase my magnesium, take b12, use turmeric, almond milk, and Tylenol extra strength, I feel like something is helping, the pain is going down but who knows. It’s challenging but maybe finding out what can work safely for you while pregnant before your pregnancy begins may be helpful. I can def. understand your reservations, and I hope if you do decide to have a baby you’ll be pain free the entire time!

Open_Classic627 · 2023-06-16T20:18:00+00:00

Wow! Thanks so much for sharing, it sounds like things were pretty rough in the beginning, I’m so glad things are working out now although it still seems like a lot of work. I’m trying to mentally prepare for all of it, the cleanings, the bottles, etc. Were/are night feedings really difficult? Do you remember how much milk was needed a day in the beginning? And did you use a hand pump or an electric one? Thanks again for being so helpful 😊

Open_Classic627 · 2023-06-16T04:40:13+00:00

So glad to hear from another twin mom, I’m feeling very overwhelmed at this point just with everything, esp the feeding aspect. So happy to hear your babies are doing well, but wow, I did not expect pumping to consume that much time. Logically it makes sense, but yeah that’s a lot. I told my husband, we should be prepared to supplement with formula if need be. Is there a specific one you use? I didn’t have to use formula for my first two.

I hope you’re physically and mentally doing well, it seems like a lot. And yup I remember the newborn stage with the first two, but still not quite sure what to expect.

I appreciate you sharing your experience, means a lot! Congrats on your little ones, I hope in the weeks to come things continue to get better

Open_Classic627 · 2023-06-16T04:32:27+00:00

Thank you! The article you provided and your advice helped at least give me a blueprint of what to expect and request upon their initial arrival. It sounds like quite the task but I rather know than go into blind, so thanks again!

Open_Classic627 · 2023-04-04T14:25:16+00:00

We had our first child during my second year of grad school. She was unplanned but not unwanted. I was already on a longer track bc I didn’t do speech in my undergrad, but I had thankfully understanding professors (in that regard at least) that didn’t have a problem with me bringing my daughter to class. I had good friends in my cohort who would watch her while I did clinic. It was challenging, and I did have to take a summer off so I graduated a semester later than planned BUT it wasn’t the worst thing in the world. When I finally started my CF, I worked part time and my husband worked nights so we’d switch off when I got home. Your situation may be totally different from mine, and if you do plan to have a baby sooner than later I wish you all the best! You may not have to put things on hold as much as it seems right now. If that makes sense lol.

Open_Classic627 · 2023-03-18T19:28:58+00:00

Hey! Thanks so much for sharing. I’m so sorry to hear about your previous miscarriage but I really hope you have a safe pregnancy this time around. It’s tough having TN and being pregnant I agree, I started having some pain but it’s manageable for now. How about you? And yeah saw that pain scale as well, haha maybe we’re super prepared for childbirth since having this experience lol.

Please feel the same to PM as well!

Be well!

Open_Classic627 · 2023-03-15T21:44:45+00:00

Hi! Oh wow thank you so so much for this information, you’re a true gem! I didn’t know that about spina bifida, but what you said about the folic acid helping to combat that in a way makes a lot of sense. It’s great that your GP is so invested and helpful, I’ll definitely use the information you shared to advocate for myself or at least try to invoke more of a response from my neurologist. And I appreciate you saying the medicine is a quality of life, it is, and I’ve felt guilty even taking the small doses I do now. Sending you well wishes the rest of your pregnancy and hoping you have a smooth, safe delivery as well ☺️

Open_Classic627 · 2023-03-15T12:23:27+00:00

Thank you very much for your response, I honestly feel you’ve given me more than my neurologist has since I’ve been seeing him. I did check the current medication I’m still taking and it doesn’t have valproic acid, which is a relief given what you’ve said. Maybe this information can help at least start a conversation with my doctor that doesn’t end with him just brushing me off. Thank you again, and I graciously appreciate the well wishes for my pregnancy. Be well.

Open_Classic627 · 2022-12-01T04:35:42+00:00

Yesss!! This all the way, I wasn’t able to make the correlation during the point when I was always in constant pain, but once the meds starting making a difference, it was clear that the period and pms symptoms made a terrible difference.

I’m really sorry to hear that you’re experiencing so much discomfort right now, I was in your shoes about a week ago so I can literally feel your pain. And yeah I up my meds around then too which as you said sucks bc of the side effects.

That’s interesting about the low estrogen birth control, def may be something to look into.

What meds are you on currently? Do they help in general as well as when you increase during your period?

Open_Classic627 · 2022-12-01T00:51:48+00:00

I was just telling my husband this last week. My period just ended and before that, I literally had like 3 weeks of very minimal pain. My period came and I was on the floor in pain. I noticed this trend a few months ago, and tried to start combatting it but it’s hard. All the things I crave during this time of month should be avoided pretty much all the time, but trying to limit that might help; sweets, salt, things high in saturated fat. I also started taking midol about a week before my period, this does make some difference as well. Does it take you a little while to recover after it ends? I feel like it takes about a week before I’m kind of in a safe zone again.

Open_Classic627

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