I'm having trouble deciding whether to have surgery or not. I am mostly symptom free. I do experience headaches and numbness occasionally, sometimes worse than others.
I've read that without surgery, numbness may become permanent. If that's the case, I may opt for the surgery, although the thought of the actual surgery freaks me out.
Thoughts?
Depends on where you are reading....... The internet is strongly skewed towards pro surgery. There was huge "fad, " if you will, of "Chiari centers" offering all kinds of promises. One of the biggest names recently sneaked out of the country closed, after federal indictments came down, others have had their centers closed restaffed or brought under state medical society oversite consequently the amount of chiari surgery is on the decline. That doesn't mean the advocacy groups backed by these guys have gone away or the flood of skewed information hitting the internet is on the decline (yet). I'm not sure quite where you fit in to the "real" criteria for surgery. but I would certainly check it out with a second opinion. GENERALLY a person should be consistently symptomatic and have reduced flow with a chiari in excess of 5mm or with a syrinx. There are of course other circumstances. Surgery is a really big deal with a very high complication rate and a fairly low long term success rate UNLESS the surgery is a serious need...........
I'm at 9mm., I've had 2 opinions from two doctors at 2 of the best named hospitals in the area. The 1st was ready to cut, the second basically left it in my hands but did say that he believes I will definitely need the surgery in my lifetime.
Like I said, the thought of surgery at the base of my brain freaks me out and I would like to avoid it all costs, but by avoiding it, I don't want to cause any permanent damage....there's where I'm torn.
Thanks for your help.
Hospital based docs are generally reliable as opposed to associated practices as they are under more oversite. Sounds like you need a tie breaker opinion. But as you say its not easy........ Were it me would track it for a while to see if it changes size shape etc. and if my symptoms change with it.
Thank you, you've given me something to think about.
It’s almost a year after my first post and I’ve still not had the surgery. Like I said, I feel fine most of the time.
I started having weird symptoms in March, not sure if it even has anything to do with my condition, but blood work shows nothing else. Has anyone every had a weird tingling feeling that just moves through the entire torso? I also get chills with it. It just comes out of no where, but makes me feel lousy. It happened a lot in March so I had blood work and then saw my neurologist, a repeat Mri was done and showed no change. Symptoms have gotten better, but had another episode a few days ago. I have also been experiencing more dizziness for the past few weeks.
Thanks for any help you can give
Dear LRT,
I know it's been almost a year since you posted, but i just saw it. I'm in my 50s, was diagnosed 1999. i have NOT had the surgery and don't plan on it unless something major changes. I'm at 9 mm displacement, Type II, with menningenoma brain tumors and bulging disc at C3 and T5, with collapsed disc at L7.
Like you i've weighed the good/bad consequences. I've found that making alot of changes (not all of them easy choices) to my lifestyle, eating right, getting rest, staying "fit", I've reduced my symptoms to headaches, tingling and yes occasionally chills, and some other weird symptoms i can't explain.
I've always been a naturalist and follower of Eastern tradition, where Western medicine pushes surgical intervention and medicines, Eastern tradition follows knowing my body. I meditate, eat right, etc.. I have found some herbal treatments that have helped significantly. No, i can't "run and play" as i did before, but i can walk the treadmill, swim, do some light weight training.
Everyone has to make their own decision. I went to 3 different neurosurgeons, all reputable and reliable. All say same thing, i'm not a good candidate for surgery as it would cause other more serious complications.
I wish you the best in your process, but there is a way to live with it.
Best,
Alicia
Thank you for your response Alicia. It actually makes me feel better that someone else out there is also experiencing chills and other weird unexplainable symptoms (not that I wish this on you). I tried to explain this to the neurologist and he wasn't sure that these were even symptoms of Chiari nor do I see it as any of the symptoms on any Chiari website.
I am also in my early 50's and feel like I'm in good physical shape. I work out in a gym 3-4 times per week, cardio and weights. I also walk a few miles per week.
I'm still not sure what to do, on the days that the symptoms are worse, I feel like I should get the surgery, but most days I feel ok and I think I should just "wait and see". I wish I had someone to talk to, to tell me if this in deed will get worse, stay the same, etc. I am having more "symptoms" then a year ago though.
Thank you for your input, it has given me more to think about.
Good luck to you.
So many people, doctors included, don't understand all we go through. Ultimately it is our choice. I don't plan on having the surgery at all unless it's just completely unavoidable. I keep tabs (daily journal) of symptoms, and a tab on good days vs. bad days. Right now i still get more good days than bad so i'm not willing to risk losing that for the "might help" surgery.
Yes, the symptoms are progressing, while others have disappeared. It is a journey. I wish you all the best.
If you'd like, i'd be more than happy to give you my personal email addresses so we could talk directly. It is rare to find someone in the same age range, at apprx, the same level i'm at.
Best,
Alicia
Hi as I do my research on chiari it will get worst. It can stop you from walking and the headaches will get more intense. I have really bad systoms like numbness migraines vertigo and other symptoms. I’ just went to my entire doctor and he also told me that I need to have the surgery. I go see my Nero surgeon on the 16.We will be talking about surgery. I hope I have been helpful. Thanks
Thanks for getting back to me. I also have more good days then bad, but I have more symptoms then before, which makes me consider the surgery more then ever before. But the thought of surgery when most days are good, is hard to comprehend. I’m just afraid symptoms will continue to worsen and I’ll end up with surgery anyway, and I’m only getting older. The older I get, the more risky surgery gets. I just wish there were a cut and dry answer. Like “yes your symptoms will get worse so you should have the surgery done now”. The doctors just aren’t sure and nothing I’ve read has told me if symptoms do in deed get worse. I just think the medical field just doesn’t know enough about it. I had to 2 opinions about 4 years ago, 1 doctor was ready to schedule surgery and the other told me that he believed I would need to have the surgery within my lifetime.
So where do I turn to now, do I get a few more opinions from neurosurgeons? Or do I see another neurologist? Thanks
If you would like to give me your email, that would be fine.
Thanks you
Alicia said:
So many people, doctors included, don’t understand all we go through. Ultimately it is our choice. I don’t plan on having the surgery at all unless it’s just completely unavoidable. I keep tabs (daily journal) of symptoms, and a tab on good days vs. bad days. Right now i still get more good days than bad so i’m not willing to risk losing that for the “might help” surgery.
Yes, the symptoms are progressing, while others have disappeared. It is a journey. I wish you all the best.
If you’d like, i’d be more than happy to give you my personal email addresses so we could talk directly. It is rare to find someone in the same age range, at apprx, the same level i’m at.
Best,
Alicia
Thanks for responding. I’ve never read that symptoms will get worse, can you tell what site you read that, I’d like to check it out. I do believe its true though, since my symptoms have definitely gotten worse and there is more of them. I’m at 9mm, how about you?
Good luck with your doctor appointment, and surgery if you decide on it, keep me posted.
kenya Mossman said:
Hi as I do my research on chiari it will get worst. It can stop you from walking and the headaches will get more intense. I have really bad systoms like numbness migraines vertigo and other symptoms. I’ just went to my entire doctor and he also told me that I need to have the surgery. I go see my Nero surgeon on the 16.We will be talking about surgery. I hope I have been helpful. Thanks
Hi LRT how are you. I’m heading to my Nero surgeon on the 16. My. ENT doctor said I need to have the surgery. We will see what my doctor say. I have read that on many different sites. My is 7 to 8 mm. I have vertogo bad and migraines I will keep you posted. You do the same. Thanks
You mention an ENT doctor, how do they help with this condition?
Good luck at your doctor appointment.
kenya Mossman said:
Hi LRT how are you. I’m heading to my Nero surgeon on the 16. My. ENT doctor said I need to have the surgery. We will see what my doctor say. I have read that on many different sites. My is 7 to 8 mm. I have vertogo bad and migraines I will keep you posted. You do the same. Thanks