Ok, so I’m EXTREMELY lucky that my symptoms aren’t that bad. I just sent an email to my neurosurgeon asking him the benefit of having surgery now as opposed to waiting until my symptoms get worse and his reply was
“None. You need to decide when you don’t want to live with your symptoms any more. The purpose of surgery is to make you feel better. That’s it. If you don’t feel that bad, there is no reason to do anything.”
-I have the classic Chiari headache with coughing, laughing and straining, like bending over or stretching. I have occasional migraine headaches maybe once a month or every two months. My hands and feet go slightly numb at times. I have pretty constant lower back pain but I’m not sure that’s Chiari related and it’s not severe. I’m tired all the time but again, I’m not sure if that’s Chiari related.
-I have a Chiari malformation 12 mm herniation that’s almost totally blocking the CFS into my brain. There’s no CFS on my MRI until probably half way into my head.
-I’ve met my out of pocket maximum for insurance this year already.
So I’ll ask you guys who have lived through this. Why or why not should I choose to do this surgery now?
Will I inevitably need it done in the future anyway?
Is it possible that I’m feeling worse than I think and surgery will have me feeling better?
Should I wait until symptoms worsen or try to be preemptive?
Rachel, these are my opinions here…and im very glad i had the surgery- I wish i could have had it sooner because i believe some of my symptoms are permanent from my brainstem being under duress for so long. I have a couple if neuromas, nerve tumors, from the crowding at the base if my skull. For me the blockage of CFS flow would be a concern. This is not something that will ever improve if left alone. Also, as a general rule existing symptoms tend to worsen over time. I get that this is a tough decision taking in to consideration the potential risks and benefits. Before surgery my NS said to me, “you probably won’t end up in a wheel chair if you don’t have the surgery, you have to decide if your life is being affected enough.” For me taking the risks far outweighed the alternative. You also have 3 months still before the end if the year, take a little more time to make your decision.
I think my next email to your NS would say "Can you guarantee me that surgery would in fact correct my symptoms without leaving additional ones or them coming back?" There is not a NS alive that can truthfully guarantee symptoms will be totally relieved.
Some symptoms become irriversible regardless of what anyone says. I know first hand! Do it while your body’s healthy and everythings still functioning normally because there’s no guarantee of symptom reversal one it starts effecting your vision, hearing, balance, memory etc.
I had surgery in February. My NS told me some ppl feel relief, some don’t. He said it is a serious surgery so I needed to evaluate where I was and where it could possibly take me. So far, I’ve been great. I have the occasional headache but nowhere near as bad as they were. Compared to where I was before surgery, I believe it helped. I wasn’t looking for a 100percent improvement but it was worth it because now I could participate in my children’s life. Weigh all your options.
This is a MAJOR surgery. It is not cosmetic, not minor. I had a lot of complications including aseptic meningitis and hydrocephalus post op which almost cost me my life. I decided to do the surgery because I couldn’t live with the severity of my symptoms. But now, I have new symptoms including debilitating lower back pain (I can’t put ANY pressure on my lower back) and still have more pain than pre surgery.
I don’t want to talk you out of it. I just feel our society thinks a quick cut and snip will fix everything without considering the risks. Doctors are still “practicing” and a whole lot can go wrong.
There are many on here with glowing success stories. Again, everyone is unique. But please do consider how big of a deal ANY surgery is before making a decision. Scar tissue is no joke, think about what your surgeon told you and really decide if you NEED this surgery to function right now. I’m becoming closer to the school of thought that if it’s life or death, let’s operate… If not, keep the knife away from me. Not just based on my experience but several very close to me (with different surgeries).
Another thought… my niece has had 2 decompressions and will be having tethered cord surgery next month. She is 6. Symptoms got better then worse. Explore all your options and weigh the worst case senerios as you never know which complications you may experience, if any.
I was feeling much as you are now before I went in to the OR for my surgery… However, I was SO tired of being tired, so tired of feeling awful or just “off” all the time, so tired of not being able to exercise-even yoga!-for so very long from the chiari headaches, that I had to do it. Depression was setting in. Plus I began to look a bit crazy rubbing my hands all the time to try to wake them up and wheeling off balance a bit when turning corners or going up stairs too fast… All that was lacking was a crazy cackle of a laugh and an imaginary friend or two! Let me be clear on something-I HATE going to the Dr. If I don’t think I’m in jeopardy of dying, I don’t go! I waited while my symptoms progressed slowly for YEARS. My family kept telling me, go! And I kept saying, I haven’t the time… My symptoms had become my norm. I had the surgery the end of April this year and I am so incredibly glad that I did! I feel ALIVE again. My now 5 year old spent the first few years of her life missing out because mommy had a headache or mommy was just too tired and dizzy. My turning on the tv to distract her while I rested had become an every day thing. Our tv is rarely on these days. For me, it was not just how I felt but also how my illness was affecting those around me. I did not want my daughter to look back at me 20 years from now, and remember me as sick all the time. I’d had enough.
When you get to that point, as I did, research every dr you can. Make sure they are the best you have the access too and just go for it! My dr was very aggressive with the surgery. I had a very large herniation and Dailey restricted CSF flow. I had a craniotomy (or ectomy, I’m not sure which… The skull piece was not replaced but my muscle wall is thick enough to do the job!) a double laminectomy-c1 and partial c2 and duraplasty. He did this much to ensure I would not be back later for another fix if the minimum job wasn’t enough. I’m 35. Hopefully with all the extra room back there now I won’t be back to be in zipped! I shouldn’t any way, according to my wonderful NS.
Another thing to consider is timing. The recovery can be difficult and as someone said above there might be complications. I was fortunate as many are but some are not, again, as many are not… So many variables come into play. Your block of CSF scares me a bit… I wouldn’t want the risk of paralyzation and the wheelchair-but that is just me.
Sorry for the long winded response. Im just feeling so great lately!
Please do what’s best for you. Take all our advice and stories and figure out how it can help you specifically. And please keep us posted on your progress whatever you decide! Good luck!
Thank you so much! I’m 30 and I have a 3 year old son. Until I read your post I didn’t realize that I’m that mom. There’s only so much energy I have for him. Once I’m out he’s used to entertaining himself and watching TV. He’s used to be telling him I’m done playing because I’m tired. I’m just always tired. I’m tired when I wake up in the morning. I’m not in a ton of daily pain, I’m just really worn down. Maybe I’m just so used to it that I didn’t realize…? I’m thinking its best for me to do this now. I’ll have to do it eventually. It’s not like it’s going to magically fix itself and will probably continue to progress. It needs to be done. I’m just terrified of surgery. As for the surgeon, he can recommended by another neurosurgon and a neurologist. He seems very knowledgeable. I trust his skill.
I’m so glad I could help. Man do I know about being completely worn out while my daughter entertains herself… She actually made me dinner one night a month or so before my surgery (before I’d decided to do it) and that thoughtful gesture coming from a 4 year old was what broke me down to committing to the surgery. It was just a bowl of cereal, my dinner, but she fed me. I couldn’t stand it. It broke my heart and filled me with love and shame and resolve to get better if not for me then for her. I didn’t want to have a kid who grew up caring for their mother. I grew up Army, I could do it!! My husband has a business that is spread out a bit so I was mostly alone in day to day family care. My mother, thankfully, came to help take care of our daughter so I could take care of me. I was up walking around 36hours after the surgery. Once they got the meds figured out (within a couple days) I was feeling so much better. You’d think after having surgery on your head you’d feel a bit worse than you did before… While that is true immediately upon waking from the procedure, it lasts so very briefly. Medicine today is remarkable.
Tired and run down was 100% my norm. I was never like that before even though I, as so many others, lived with chiari my entire life. It just got worse do gradually and the symptoms came and went, never NEEDING a dr and well, with a kid to care for… You know how much energy and time THAT takes! I still have days (few and very very far between now) where I feel like my body needs a break, but according to the surgeon that’s normal for up to 6 months or more. I just feel SO much better than the past 6-7 years. It’s truly amazing. And my god, to LAUGH and not have a headache!! To pick up my daughter and not scowl from the pain. Geez, I’m rambling again! Sorry!
I was terrified of surgery too. Honestly, once I’d found a NS I trusted I kind of just jumped off a cliff-so to speak… I stopped thinking about it (I’d been thinking about it and little else for a few months) and scheduled the surgery for as soon as I could and my mom could come help. We live in NYC so things are a bit more convenient by way of pharmacies and delivery so my recovery process went very smoothly. No one had to drive me anywhere except the taxi driver to my follow ups. My daughter was totally cool about it too. She knew the drs were going to “fix my brain” so that I could play with her more and maybe she could have a brother or sister one day… Now she tells random people that “the drs fixed mommy’s brain so she could give me a baby brother and sister” I can only imagine what they think of that. At least I’m not off balanced and wringing my hands anymore!
Good luck to you Rachel. Please keep us posted and feel free to PM me whenever. I’m not often on the threads anymore (obviously from the rambling I’m doing today!) but I always get email and would love to hear how you are doing!
Best,
Kat
Rachel said:
Thank you so much! I'm 30 and I have a 3 year old son. Until I read your post I didn't realize that I'm that mom. There's only so much energy I have for him. Once I'm out he's used to entertaining himself and watching TV. He's used to be telling him I'm done playing because I'm tired. I'm just always tired. I'm tired when I wake up in the morning. I'm not in a ton of daily pain, I'm just really worn down. Maybe I'm just so used to it that I didn't realize...? I'm thinking its best for me to do this now. I'll have to do it eventually. It's not like it's going to magically fix itself and will probably continue to progress. It needs to be done. I'm just terrified of surgery. As for the surgeon, he can recommended by another neurosurgon and a neurologist. He seems very knowledgeable. I trust his skill.
Not sure why my phone autocorrected to Daily… I had partial restricted CSF flow. Not Daily… Technology-Sigh-
Kat said:
I was feeling much as you are now before I went in to the OR for my surgery… However, I was SO tired of being tired, so tired of feeling awful or just “off” all the time, so tired of not being able to exercise-even yoga!-for so very long from the chiari headaches, that I had to do it. Depression was setting in. Plus I began to look a bit crazy rubbing my hands all the time to try to wake them up and wheeling off balance a bit when turning corners or going up stairs too fast… All that was lacking was a crazy cackle of a laugh and an imaginary friend or two! Let me be clear on something-I HATE going to the Dr. If I don’t think I’m in jeopardy of dying, I don’t go! I waited while my symptoms progressed slowly for YEARS. My family kept telling me, go! And I kept saying, I haven’t the time… My symptoms had become my norm. I had the surgery the end of April this year and I am so incredibly glad that I did! I feel ALIVE again. My now 5 year old spent the first few years of her life missing out because mommy had a headache or mommy was just too tired and dizzy. My turning on the tv to distract her while I rested had become an every day thing. Our tv is rarely on these days. For me, it was not just how I felt but also how my illness was affecting those around me. I did not want my daughter to look back at me 20 years from now, and remember me as sick all the time. I’d had enough. When you get to that point, as I did, research every dr you can. Make sure they are the best you have the access too and just go for it! My dr was very aggressive with the surgery. I had a very large herniation and Dailey restricted CSF flow. I had a craniotomy (or ectomy, I’m not sure which… The skull piece was not replaced but my muscle wall is thick enough to do the job!) a double laminectomy-c1 and partial c2 and duraplasty. He did this much to ensure I would not be back later for another fix if the minimum job wasn’t enough. I’m 35. Hopefully with all the extra room back there now I won’t be back to be in zipped! I shouldn’t any way, according to my wonderful NS.
Another thing to consider is timing. The recovery can be difficult and as someone said above there might be complications. I was fortunate as many are but some are not, again, as many are not… So many variables come into play. Your block of CSF scares me a bit… I wouldn’t want the risk of paralyzation and the wheelchair-but that is just me.
Sorry for the long winded response. Im just feeling so great lately!
Please do what’s best for you. Take all our advice and stories and figure out how it can help you specifically. And please keep us posted on your progress whatever you decide! Good luck!
Thanks so much! It’s great to hear all your thoughts. My thoughts on this are that I’m going to have to have surgery eventually. If not now then sometime in the future. I’m thinking I should just go ahead and have it done while my son is still young. My husband works crazy hours, anywhere between 4am to 11pm. And works sometimes 60 hours a week. I know I’ll need help. How bad were you guys directly after surgery? He’s arranged to take a week off work but will I be ok do you think, to be along when he goes back after a week?
To answer your question about being alone after one week: I think it depends on how independent your son is. How old is he? I think you should be ok to be alone as long as you don’t need to care for someone else.
You will need to plan to have help for at least a couple of weeks, or daycare, because you are going to be soooo tired. “Working” through it just won’t be an option, you need to rest in order to heal. Is your mom or MIL close by?
Let me be clear on something-I HATE going to the Dr. If I don’t think I’m in jeopardy of dying, I don’t go! I waited while my symptoms progressed slowly for YEARS. My family kept telling me, go! And I kept saying, I haven’t the time… My symptoms had become my norm. I had the surgery the end of April this year and I am so incredibly glad that I did! I feel ALIVE again. My now 5 year old spent the first few years of her life missing out because mommy had a headache or mommy was just too tired and dizzy. My turning on the tv to distract her while I rested had become an every day thing. Our tv is rarely on these days. For me, it was not just how I felt but also how my illness was affecting those around me. I did not want my daughter to look back at me 20 years from now, and remember me as sick all the time. I’d had enough.
Let me be clear on something-I HATE going to the Dr. If I don’t think I’m in jeopardy of dying, I don’t go! I waited while my symptoms progressed slowly for YEARS. My family kept telling me, go! And I kept saying, I haven’t the time… My symptoms had become my norm. I had the surgery the end of April this year and I am so incredibly glad that I did! I feel ALIVE again. My now 5 year old spent the first few years of her life missing out because mommy had a headache or mommy was just too tired and dizzy. My turning on the tv to distract her while I rested had become an every day thing. Our tv is rarely on these days. For me, it was not just how I felt but also how my illness was affecting those around me. I did not want my daughter to look back at me 20 years from now, and remember me as sick all the time. I’d had enough.