Chiari Online Support Group

Scared, mom of 3, two weeks from surgery


#1

Hello fellow chiarians. I am scared beyond words about my upcoming decompression surgery with duraplasty. I am in excellent hands with a highly respected neurosurgery team, but my anxiety is causing negative thoughts to creep in all the time. My symptoms are accumulating, but not severe at this point, but with 1.7 cm herniation and presence of a small syrinx my neurosurgeon highly recommends surgery now rather than later, while I am young and healthy. However, I have the worst feeling about surgery and not being here for my 3 young children. Anyone else have these thoughts and how did you work through them?


#2

I too had my surgery when I had two small children and was stressed about not being there as well. I handled my stress through practical things. I updated my will and made sure that our finances were in order as I am the main finance person in my family. I did practical things within my energy levels to insure meals, cleaning, and laundry was organized for post surgery. I would suggest that other people be in place to do those things for the household for at least 3 months. I had people live-in for 3 weeks post-surgery to run the household. This is a major surgery and sacrificing your recovery for a clean toilet is not worth it.

I tried not to be silly about things but I still labelled the kitchen cupboard contents to make things easy for others.

You will need stable child-care in place during the surgery, hospital stay, and immediately on your return. Other people will not do things exactly how you do them. Encourage sufficient sleep, but otherwise let it go. If your children are not in school, you may need childcare. Again, major surgery… recovery is not instantaneous. Your emotions may be difficult to control post surgery and caring for small children is challenging.

Two weeks is not a lot of time to plan for cash flow if your family depends on any money that you earn. The goal during your recovery is to not incur debt or at least not too much. Start slashing unnecessary expenses immediately and avoid any want-based purchases. Do not make guilt purchases for your children or others during your recovery.

Remember that the surgery itself is not complicated. Discuss complications and what to do about them before hand. Best of luck with planning for the big day!


#3

Thank you Gabby! This information is all so helpful. I too am the main financal person in our house. Good thing tax season is not until March/April or my husband would be lost. :wink:

I have my parents coming to stay with us for at least two weeks, maybe longer, depending on recovery and they often help with the boys now, so they will be great supports as my husband travels a lot for work!

Did you have any complications post-op? What did you bring to the hospital and how did you sleep when you got back home?


#4

I did not have any complications post-surgery other than needing scar management for the incision.

I brought a toothbrush and paste, deodorant, and easy clothes to put on - button up shirt and my comfiest bra. i might have brought a comb but did not use it! I just used my regular pillow.

I was released from the hospital after one day (short on beds!) but was two hours away. We stayed in a hotel for a few days until I was ready for the trip home. It was also nice to recover in quiet as my kids and parents were at the house. Pricey but we had planned for it.


#5

I had surgery almost two years ago when my kids were 3 and 6. I was really anxious about the surgery and how I would feel. My husband and I share parenting duties equally, and my parents and sister were there to help too, so I knew the kids would be fine. Still I was really anxious leading up to surgery.

I saw a therapist for a couple of weeks before surgery and she led me in a number of guided meditations. I don’t know if that’s your thing, but it was really helpful for me. There are many great guided meditations available on youtube.

I was in the hospital for four days. My kids did not come see me during that time. The first couple of days were rough in terms of getting my pain under control. By the time I went home, I was managing pretty well. My kids would come hang out with me in bed and watch tv or a movie or color. They handled it really well. My husband and parents helped keep their routine very consistent, which was great. I let both of their teachers know what was happening ahead of time and asked that they let me know if the kids seemed upset or struggling during that time, which didn’t happen.

It sounds like you have a great plan in place for recovery with your parents coming to stay. I hope you can distract yourself for the week and a half.

I put off surgery for almost two years and honestly wish I had not let my symptoms get as severe as they did. The surgery helped me immensely. Best of luck to you!


#6

Thank you Tricia, so so much for your comment and sharing your journey!

I am finally decided it was important to meet with a psychologist and meet with her tomorrow. My primary anxiety is surrounding the surgery itself, and afraid about not waking up. Did you have these fears?

Like you my parents will be coming to help us out and I let the boys teachers know already so that they could help them and be aware if their behavior was off.

My bedroom is on the second floor of our home, so I rented a lift recliner chair with remote control so I could stay on the first floor. Wasn’t sure how it would be with steps. Did you stay on the first floor? I guess all the unknowns are building up at this point.

I am definitely going to try the guided meditation. Right now I am having trouble eating and sleeping and know I need to be getting both going into surgery. Thanks for the advice!


#7

Hi again @tricia_e! Any suggestion on meditations that worked for you?


#8

I actually am less familiar with the ones on youtube and more so with an app called Headspace. Some content is free and some paid. It’s all really good though. They have meditation for specific purposes like anxiety or proscrastination. The anxiety ones would be good for you. I’m glad you’re seeing a psychologist today. For me, just talking things through helped as well as the meditations.


#9

I was very anxious about the procedure itself and how I would react to the anesthesia and pain meds. I just didn’t know how I was going to feel when I woke up. It definitely affected eating and sleeping. I got some medication from my PCP to help with sleep in the last few weeks before surgery. I was able to take it the night before and get a good night’s sleep. I agree you need rest that beforehand. Also, the team at the hospital was amazing. They tailored pain meds according to my past experiences and family history. They listened and talked to me about my concerns. And I had no trouble with the anesthesia. While it did take some time to figure out my pain management afterward, they kept trying and listening.

I felt very unstable walking around the day after surgery in the hospital. The occupational therapist encouraged me to get up and walk as much as possible. Soon I was doing laps around the floor (with my husband or a nurse with me, just in case). It improved dramatically in a few days.

I was able to manage stairs just fine when I got home. My bedroom is upstairs. I didn’t venture out into the house all that much in the first few days, but was up and downstairs by a week or week and a half out. Ten days after surgery was Christmas. I attended a get together (in my pajamas) at my sister’s. I was still pretty tired, but very functional by then. Oh, and that was the last day I took any prescription pain meds. I believe I’d made a trip to Target with my mom a couple of days before that.

As for sleeping, I slept in my bed using a regular pillow. I am a side sleeper anyway and that worked well. I had bought a wedge pillow to sleep elevated, but I didn’t use it much. I was more comfortable laying flat. One neurosurgeon I saw for a second opinoin said that he keeps patients upright. Mine did not, so I didn’t worry about it.

I got my stitches out 16 days after surgery and drove that day so I could run an errand. I certainly wasn’t fully back to my regular duties, but I was in pretty good shape.

I hope hearing this helps! Your fears are completely rational before surgery. You are doing a great job trying to address them and take care of yourself. Research shows that managing anxiety before surgery helps immensely with recovery. You got this!


#10

I can confidently tell you, you will need help with the children. (constant help, not sure if you have this). If you do not have help, I would prolong the surgery. There is textbook recovery and real life recovery. When you come home, you will be bedridden for a while.

Also, you will need a muture, steady hand to change your dressings. Infections come in when they are ignored and not changed according to doctors directions. Also, you (if you live in the US) will probably come home with the bland, hardly any smell shampoo. Use it, or use warm water, but keep wounds clean.
—Normal shampoo will be tempting because of it’s wonderful smell, but has too much alcohol and bad ingredients what will dry out our wound even more. This causes more bleeding, infection, etc.—
If your gut is telling you to wait, then you probably should. I was forty when I was diagnosed (46 now). You will not die if you wait awhile (sorry for frankness) If you wait until them summer time when they are out of school, possibly they can stay with a relative then. Then you could have a good 3-4 months to heal. After surgery though, there is no way you will able to tend to them. Just my opionion.


#11

I had my decompression surgery 3 1/2 years ago. I am now 59 and wish I had it done in my 20s or 30s. I was misdiagnosed as to my symptoms back then even though they knew about my Chiari problem. I recommend you have it done now because I have a lot of neurological permanent damage because of not having the surgery for so long. I am definitely better than before surgery but if I was to have it done years ago, I would be in much better health. The surgeries are pretty routine now and the Drs. know so much more about Chiari so I would not be so scared. Just know it will take time to heal and you have to allow time for the and not overdo it. The most important thing is to have help with the children and rest. People told me I would not be totally recovered for a year although I would be able to do my activities after a couple of months and they were right. Maybe because you are much younger you will heal quicker. I hope so. But do NOT put it off for too long or you will end up disabled as I am due to the neurological issues Chiari presents over time. Good luck.


#12

Hello, I understand exactly what you are going through. I had my surgery in 2013 and am a mom of 3. Choosing to do the surgery was one of the hardest decisions I have ever made. Before surgery I was experiencing horrible neck and head pain. My surgeon wanted to treat the pain with meds. He did not want to do the surgery. After 4 more months of horror. I told my doctor that I was done I wanted the surgery. I felt very guilty about my choice. All of the what if’s kept popping through my head. My husband supported my decision and he tried to help me not worry so much. I came very close to canceling. I am so glad that I didn’t cancel the surgery. I am not going to say everything went perfect, because it didn’t. There were a lot of mistakes made on the hospital staffs end. I some how broke my collar bone on the operating table. After surgery I struggled with my breathing as I woke up from anesthesia. So my doctor ordered an xray of my chest. While receiving the xray in my hospital bed in the ICU the technision hit me in the back of the headdirectly where I had my incision. Thankfully I was heavily medicated. I am not telling you all of this to worry you more. I just want you to know that accidents do happen and I would still have the surgery again. Because it literally saved my life. About 3 days after surgery my doctor had ordered an MRI of my neck and brain. He later came to my hospital room and told me that he is so glad I had the surgery. Because in the MRI it showed that I had a very large Cyst in my spinal cord. He told me that large of a cyst is death. He said with something that large is is shocked I was able to walk. I was so relieved afterwards. Because I made the right choice. My doctor made me feel like I was making the wrong decision and now look. If I Haden had the surgery I would have died. You need to make the best decision for you. I strongly recommend surgery. I am not going to say it makes all the symptoms go away but if greatly helps.


#13

Thank you all! I am now 4 days out from my surgery and trying to get everything in order and manage my anxiety. All of your feedback and sharing of experiences has been so helpful!


#14

Wanted to check and let you all know my surgery went well! Now almost 4 weeks post-op and doing pretty well with good days and bad days, but the good days are mounting up. Thank you all for your support and helping me get through this surgery. Your shared experiences really helped me!


#15

I just wanted to say thank you for keeping us posted. I’ve been following this because I am scheduled for decompression in January and it has really really helped to calm my nerves as well!
Thanks for creating the post and thanks to everyone for telling your stories! :slight_smile:


#16

When’s your surgery, Sparkles? It must be coming up.

Keep in touch!

Seenie from Moderator Support


#17

Hi Seenie!

My surgery is Jan 25th. fingers crossed!!! I go to my pre-op on the 14th.

My family had a bout of stomach “flu” over New Year’s and after 24 hours of straight vomiting, my symptoms have changed and now I have constant pain/discomfort in my neck and shoulders. I’m so ready for this surgery now! I’ll post my experience/results once it’s done. :smile: