Quick update cause I haven't been on in eons. Met with a NS at end of July after finally getting diagnosed in June (Chiari 1, 6-7mm herniation depending on where you read it, 2 syrinxs taking up my entire thoracic spine at 3cm and 15cm but only 2mm wide). He told me the only symptom he thought would be relieved by surgery is headaches but was willing to operate - he also thinks my syrinxs are not related to Chiari, which still confuses me cause why else would I have syrinxs?! Either way, he's no where near a Chiari specialist but he is a fantastic neurosurgeon and he's been really good to me. Only problem was that I am morbidly obese and surgery was not possible in my condition (he was worried about swelling and being able to access the surgical area). I have to lose a 100lbs to have surgery. He petitioned the local bariatric clinic to prioritize gastric bypass for medical reasons but I have decided to lose the weight on my own - I'm just shy of 50lbs lost since August 1.
Anyways, I've gone from nearly debilitating symptoms daily to having some pretty good weeks. I still feel like crap, but the worst of the lightheadness, dizziness, vision problems and major pain has been better for the last month. It's been manageable. The only reason I can think of for the change is that I quit my other job after Christmas to focus on weight loss for surgery and now I'm only working 10-15 hours a week, max, from 25 hours a week before. I do minimal activities in the evenings, having slowly withdrawn from friends/family/hobbies because of being sick all the time. I'd say it was healthy eating, but it isn't - this last month that I've felt great I have been eating terribly, gaining/losing the same 5lbs since Christmas. I was having daily near black outs while eating clean and now I'm better while eating crappy!?
But now I'm doubting my decision to go ahead with surgery (I still have 30-50lbs to go before then, I keep in touch with my NS by email). I know 3 good weeks doesn't make up for 3 increasingly bad years, surgery is scary and I can kinda live with this manageable life of symptoms. But then again, I'm 21, live at home, and am only able to work 10-15 hours a week - that's not a way to spend the rest of my life!
I'm just really confused. Has anyone else experienced a period of decent symptom free time? Or do you guys think it's just the fact that I'm doing much less that has caused my lesser symptoms? They're still there...just not as bad. Do I go through with surgery even if I stay like this? Is the fact that I have 2 long but skinny syrinxs enough to go through with surgery? Any advice or thoughts would be appreciated.
These easy weeks have been both a blessing and a curse. :(
First of all, congratulations on your weight loss! That is awesome!
Secondly, I’m not sure I understand your question? Is surgery already scheduled or something? Surgery shouldn’t be a now or never thing so why not just wait and see how you feel?
I wouldn’t get the surgery unless I was suffering with significant symptoms. That said, it’s very possible that this is a temporary reprieve. If the symptoms come back, you can still get the surgery.
I hope you remain symptom free, that would be great.
I have better days when less active. Which I dont do enough cause Daddy has to keep up with the boys. Anyway I'm on med leave and just do light house work and some things with kids as long as I dont push to hard I'm managable. But like you said its not the way to spend your life.
I know many people and Members that often wonder if they made the right decision pre surgical. If your NS and you came to this decision as the best treatment for you and your situation I would trust that decision. Often before major events in our lives we second guess our decisions. I know I do & have and will. Pre surgical I had minor symptoms. I didn't even know I had CM and had to have emergency CM surgery & it was that serious.
Having surgery vs not having surgery is a hard decision. I would never unless an emergency situation tell anyone to have surgery.I have only told someone to have surgery one time and that was for a specific reason. This is something you and your NS and family have to decide. I will be praying for you. You are doing incredible with your weight loss. That could be making you feel better just by relieving stress on your body.
I also know Members that live at home and work part time and are not happy, so there is not an easy answer to your questions.
Please just know we are here for you no matter what & talk to your NS & explain to them what you have to us. I am sure they can help you with your final decision.
Please keep us posted and don't stay away so long,
Glad you've checked in! I was wondering how you were doing! :)
Such a hard decision as to whether or not to have surgery. I decided to go through with it because I was so exhausted and could barely get through the day at work. My job's insurance plan is so much more affordable than the one my husband's office offers (his has a 10K deductible!!!) so I knew quitting or scaling back to part-time wasn't an option for me. I would continue with the weight loss (congrats btw, great job!!!) and see how you feel closer to time. I would say that chiari is the cause of your syrinx so hopefully surgery would help that and prevent worse symptoms down the line!
Hey Wendy! Thanks for the congrats. No, my surgery is not scheduled yet - it kinda is, where my surgeon is willing to turn around and perform the surgery whenever I am and once I hit the weight loss goal. He's very kind, says we Chiari-ans suffer enough and shouldn't have to wait too long for relief.
I'm not symptom free - as my body kindly reminded me with a massive headache/neckache/backache last night - it's just that some of my worse symptoms seem to have disappeared. I haven't blacked out in weeks, and my double vision is gone! My latest theory is that perhaps I have POTS (I've thought so for a long time, but have never been tested) and I know they recommend exercise and regulating your schedule as part of treatment for POTS. I'm wondering if that is what's going on?
You're right, surgery shouldn't be a now or never thing. I've got lots to think about! Thanks for your thoughts, Wendy! Wishing you the best.
Wendy said:
First of all, congratulations on your weight loss! That is awesome!
Secondly, I'm not sure I understand your question? Is surgery already scheduled or something? Surgery shouldn't be a now or never thing so why not just wait and see how you feel?
I wouldn't get the surgery unless I was suffering with significant symptoms. That said, it's very possible that this is a temporary reprieve. If the symptoms come back, you can still get the surgery.
I hope you remain symptom free, that would be great.
I have better days when less active. Which I dont do enough cause Daddy has to keep up with the boys. Anyway I'm on med leave and just do light house work and some things with kids as long as I dont push to hard I'm managable. But like you said its not the way to spend your life.
Hey Tracy, I won't stay away this time. I've missed the sense of community and the fact that I'm not alone. Plus, you guys are all sweethearts. Thank you for your prayers, congratulations and kind words. I've got lots to consider!
TracyZ said:
Lissa,
I know many people and Members that often wonder if they made the right decision pre surgical. If your NS and you came to this decision as the best treatment for you and your situation I would trust that decision. Often before major events in our lives we second guess our decisions. I know I do & have and will. Pre surgical I had minor symptoms. I didn't even know I had CM and had to have emergency CM surgery & it was that serious.
Having surgery vs not having surgery is a hard decision. I would never unless an emergency situation tell anyone to have surgery.I have only told someone to have surgery one time and that was for a specific reason. This is something you and your NS and family have to decide. I will be praying for you. You are doing incredible with your weight loss. That could be making you feel better just by relieving stress on your body.
I also know Members that live at home and work part time and are not happy, so there is not an easy answer to your questions.
Please just know we are here for you no matter what & talk to your NS & explain to them what you have to us. I am sure they can help you with your final decision.
Please keep us posted and don't stay away so long,
Awe, Anglyn, I also wondered how you've been - I know we shared alot of the same struggles. I hope you've been alright and the surgery was a success for you. You're right, that syrinx always throws me off - and I can definitely feel a progression of symptoms with the syrinx (bladder issues, gradual tingling getting worse that started in my feet 2 years ago and has worked it's way up to my hands, problems in my legs, etc), so I may end up going through with surgery to stop that. Hope you're doing okay!!!
Anglyn said:
Glad you've checked in! I was wondering how you were doing! :)
Such a hard decision as to whether or not to have surgery. I decided to go through with it because I was so exhausted and could barely get through the day at work. My job's insurance plan is so much more affordable than the one my husband's office offers (his has a 10K deductible!!!) so I knew quitting or scaling back to part-time wasn't an option for me. I would continue with the weight loss (congrats btw, great job!!!) and see how you feel closer to time. I would say that chiari is the cause of your syrinx so hopefully surgery would help that and prevent worse symptoms down the line!
Thanks Emmaline! I sat down for a bit after reading your question and after some thinking, the answer was simple - my quality of life is pretty crappy. I get by, but I don't live. And there is no where for me to progress unless I up my work hours and therefore get sicker again. I've lost friends and hobbies and a lot of time while sleeping away my pain, exhaustion, etc. My memory and cognitive problems are worse then ever, I can only read on a backlit ereader with giant font, a recent endoscopy revealed that my stomach is inflamed from advil usage...and I only take advil when I'm desperate, which is at least daily. This all stemmed from the fact that my best friend was recently hospitalized in the ICU step down, which is right beside the neurosurgery unit in our hospital. I think it just all became too real for me and I'm terrified now and looking for an out. But really...I think surgery is the way I have to go.
Emmaline said:
Congrats on your weight loss! Good for you!
I think our symptoms wax and wane generally anyway, but certainly your weight loss could be a contributing factor. It's the day to day symptom list that you have to take into consideration for opting for surgery. What the average quality of life for you?
Odd that you posted this. Even more odd that your showing a change of symptoms after 'less stress' such as weight or job functions. It is actually one of my considerations when it comes to the surgery decision. I keep asking myself "what if i lost weight to take off some of the strain on my back?" ... If 'my' symptoms were to lessons after some weight loss I will chose 'not' to have the surgery at this time. I'm actually starting a diet to consider it. I am front heavy and i'm sure it is pulling just the same as if we were to try to move something heavy. or lifting. good luck!
Hey Shadow! I am definitely very front heavy and have wondered the same thing. Unfortunately, all my symptoms have returned... I think my body just adjusted to the less work schedule and then went back to normal. But I can honestly say the healthier eating has made me feel better, even if it hasn't fixed my Chiari - and I'm a HUGE advocate of fat activism and health at every size, so saying that is a big deal for me. If you ever want a healthy eating/weight loss buddy, I'm always available!
Shadow said:
Odd that you posted this. Even more odd that your showing a change of symptoms after 'less stress' such as weight or job functions. It is actually one of my considerations when it comes to the surgery decision. I keep asking myself "what if i lost weight to take off some of the strain on my back?" ... If 'my' symptoms were to lessons after some weight loss I will chose 'not' to have the surgery at this time. I'm actually starting a diet to consider it. I am front heavy and i'm sure it is pulling just the same as if we were to try to move something heavy. or lifting. good luck!
Thanks for all the advice Beeba! I've got lots to think about - but my symptoms have returned, and right now just the pain is making me consider my own homebrand decompression surgery with a kitchen knife. Surgery is terrifying but I'm back to thinking that living the rest of my life like this is more terrifying. I will take all your advice to heart and really evaluate things. Thanks again, hope you're doing well!
Beeba said:
I would certainly do everything possible first. But if and when you get to the point of surgery then you will just know it. I can't even describe it. And lets face it there is no time limit - if you feel there are things you can do to improve - I say 100% do it. Get in the best shape and diet you can and then evaluate. Surgery is not a now or never option. Once you have surgery there is definitely no going back. The best advice my father ever gave me is when you really don't know what to do - do nothing. If you have any substantial doubts or reservations than hold out. I had none both times - so I was ready. The only thing worse than having surgery would be to regret it. And congratulations on your significant weight loss - that is a huge accomplishment that you should bee very proud of. Best wishes no matter what the decision is. I have told many people it is never to late not to have surgery,even when you are being rolled into the room. But once it is done there is no goi g back. I am glad I had my surgery although you wouldn't think it from my stance on it. Both times if anyone had just given me a drawing I would have done it myself - I was ready.