Aa
Anyone not had surgery?
Hi
I've had chiari symptoms for over 13 years...I have been formally diagnosed yet told by 2 specialists that surgery is not an option for me. I am coming to grips with the fact that I may never be a surgical canidate. Now don't get me wrong, I am not excited about going under the knife :) but it seems to be the best treatment option. I still keep a very rigorous work schedule but face arsenal of issues win chiari.
So my question is if you haven't had surgery what is your reasoning for not (I.e. doc said no, personal opinion).
And my second question is what do you do to cope?
I actually work out quite vigorously and have been told by my chiari expert surgeon to do whatever helps me feel better as there is no data for Not exercising and chiari. He said most of that is anecdotal. He said symptoms can intensify but they will go away when work out is compete. And in the end I feel better after I work out. Endorphins probably
Thx all for your time in responding
I've had chiari symptoms for over 13 years...I have been formally diagnosed yet told by 2 specialists that surgery is not an option for me. I am coming to grips with the fact that I may never be a surgical canidate. Now don't get me wrong, I am not excited about going under the knife :) but it seems to be the best treatment option. I still keep a very rigorous work schedule but face arsenal of issues win chiari.
So my question is if you haven't had surgery what is your reasoning for not (I.e. doc said no, personal opinion).
And my second question is what do you do to cope?
I actually work out quite vigorously and have been told by my chiari expert surgeon to do whatever helps me feel better as there is no data for Not exercising and chiari. He said most of that is anecdotal. He said symptoms can intensify but they will go away when work out is compete. And in the end I feel better after I work out. Endorphins probably
Thx all for your time in responding
Diamox is known to help some Chiari patients, which I am on. Topamax I hear can help as well. There's a fair amount of side effects but it is worth it for me. You could also ask your dr for something specifically for the dizziness...I had success with a few meds, I imagine that's easier to treat than the headaches.
My symptoms are (when medicated)...positional headache (sometimes daily, sometimes not), ice pick headaches, some dizziness, motion sickness, ibs, vision problems, neck pain, tingly feelings when I turn my head, occasional drunk feeling. Mostly there is just a ton of things that trigger my symptoms..that is what is debilitating, trying to not do so many things. Without the meds, everything was constant and awful...I would strongly consider surgery if it were still like that.
Hope that helps!
My symptoms are (when medicated)...positional headache (sometimes daily, sometimes not), ice pick headaches, some dizziness, motion sickness, ibs, vision problems, neck pain, tingly feelings when I turn my head, occasional drunk feeling. Mostly there is just a ton of things that trigger my symptoms..that is what is debilitating, trying to not do so many things. Without the meds, everything was constant and awful...I would strongly consider surgery if it were still like that.
Hope that helps!
I know how flustrating it is to go to the doctor's and they tell you that you don't need surgery. I acturally went to U of M of Michigan and they told me that I wasn't a canidate for surgery. Well I know that they are very good doctor's, but when I know how my life is and what it had become I had no choice but to have surgery and it is one thing I don't regret. I would do it all again, but as you said once you have chairi we alway's have chairi and dealing with that and excepting it is I think the most important issue. My doctor also put me on Lyrica and it wasn't covered under our insurance neither, but I just started going to a pain clinic and they switched me over to Keppra 250 mg a day. Adjusting to it was hard but now since it is in my symstem it does seem to help as good as Lyrica did and it is covered my insurance, so you might want to ask for this instead. It's hard some time to depend on the samples from the doc because they run out. Just wanted to suggest this because I know how flustrating it is. Good luck with your journey and your decision with the surgery, but you do what is best for you and be persistant with the doctor's because only you know what you are going through. It is so easy to be blown off.
He sounds great! My experience with doctors thus far hasn't been too great. I pray you get better soon as well!! I will keep everyone updated for sure! I find myself on here A LOT! :)
Dr ellenbogen is an amazing man! Not only is he one of the foremost experts on chiari, but he possesses an empathy and compassion for patients few doctors have...keep us updated!
I pray you get better soon
I pray you get better soon
COMMUNITY LEADER
Krystal - here is a copy and paste from our Drs list in the Health Pages...
WASHINGTON
Dr. Buchwald
Dr. Maravilla
Dr. Ellenbogen
Ninth & Jefferson Bldg
908 Jefferson St 5th floor
Seattle, WA 98104
(206)744-9300
Dr. Gregory Foltz
Swedish Hospital
Seattle, WA
206-320-2800
It's funny you should mention Dr. Ellenbogen. I have been conversing with a NS from Oklahoma city. He said that I should try to see Dr Ellenbogen. I just don't know where he works. I know he is in Seattle and it would definitely be worth the 2 hour trip up there to see what he thinks. I have had minor headaches, vertigo, and minor things like that since I was a teenager. And back in 2007 my then PCP thought I had Fibromyalgia. I never had a brain MRI or CT scans until about 2 years ago when my symptoms got out of hand. I was admitted as an in-patient at Southwest Washington Medical Center due to the results of a LP. My fluid was very cloudy and bloody. I was having symptoms similar to meningitis. (had a severe headache come out of no where, and it was in the back of my head) I couldn't move my head because of how stiff my neck was (before I forget, my fluid pressure was HIGH) and I was very nauseated. I had a brain MRI the following morning. The very first one of my life. I was nervous as I am claustrophobic. I was given Ativan for anxiety and that helped a lot. I remember how loud it was despite the ear plugs. I was in there for a good 1.5 hours. Later that evening the physician and radiologist came into my room (I thought it was weird the radiologist came to my room with the physician) and told me that my MRI was abnormal, but never elaborated despite the fact that I was insisting he tell me what was abnormal about it. I was in the hospital for 3 days and no one ever told me. Even after I went home I tried to contact the physician and radiologist and never got a reply. I kept getting bizarre severe pains the the back of my head and neck. My muscles were getting more weak, my thumb and forefinger were tingling and going numb, and the sensation in my feet (mainly the bottom part) and toes would go away, like I couldn't feel them at all!!! I also noticed my vision was getting blurry (I never had a problem with my eyes in fact I have always had perfect vision) I would wake up with stiffness in my neck and back (the pain is always located in my spine, but mostly my cervical spine) I went back to the ER in September because the pain was unbearable. They did a repeat LP that showed similar results as in 2010. I was admitted as an in-patient again. The doctor ordered a repeat MRI that night. As I was waiting for the MRI, the doctor came in to talk to me about the MRI findings back in 2010. This is when I discovered I had Chiari. The doctor admitted she knew nothing about Chiari and had to look it up on google. I stayed in the hospital for a few days then I was instructed to follow up with a NS. As I mentioned before he wanted to do surgery based on my symptoms and MRI. I didn't find out about having Chiari for almost 2 years. I requested all of my MRI slides and radiologists reports just because I wanted to see exactly what the findings were in 2010, because my NS said that chiari is so blatant on MRI, and there is no reason why a radiologist would be able to inform you of this especially because he told you your MRI was abnormal. The NS was appalled that no one has followed up on the chiari. Well I obtained all of my CT scans and MRI's. Well, surely enough back in 2010 the radiologist report said that I had chiari malformation and that the herniation was about 9 mm below the foramen magnum and there is effacement of the subarachnoid space at the foramen magnum.
Since the findings I have developed MSK (medullary sponge kidney) diverticulitis, a tumor which is about 1 cm in size on my thyroid, a tumor on my pituitary gland, a dilated fallopian tube, multilevel degenerative disc disease of the cervical spine and reversal of normal lordosis of cervical spine. I don't know if these conditions have any relation to chiari, but it is very strange that I developed all of these problems soon after my chiari diagnosis.
If you don't mind, can you give me a little more info about Dr. Ellenbogen? If all else fails here in Vancouver, I would definitely be willing to make the trip up north to see what he thinks! Any info or input would be appreciated!
Respectfully,
Krystal
Since the findings I have developed MSK (medullary sponge kidney) diverticulitis, a tumor which is about 1 cm in size on my thyroid, a tumor on my pituitary gland, a dilated fallopian tube, multilevel degenerative disc disease of the cervical spine and reversal of normal lordosis of cervical spine. I don't know if these conditions have any relation to chiari, but it is very strange that I developed all of these problems soon after my chiari diagnosis.
If you don't mind, can you give me a little more info about Dr. Ellenbogen? If all else fails here in Vancouver, I would definitely be willing to make the trip up north to see what he thinks! Any info or input would be appreciated!
Respectfully,
Krystal
Thank you for the response. May I ask what your symptoms are? And what meds have been successful for you?
Headache is only occasional for me... My worse symptoms are dizziness, disequilibrium, nausea, ibs and tingling in extremities
Headache is only occasional for me... My worse symptoms are dizziness, disequilibrium, nausea, ibs and tingling in extremities
If I may ask, what was his reason for saying no to the surgery?
I haven't had surgery. The risks are high - there can be complications, and it's not a cure. Having surgery doesn't magically make your pain go away, though it may significantly help some people. You have to decide what's best for you - when your quality of life is so terrible, it's worth the risk. For me, my thought is that I will only consider surgery if I have a life threatening symptom or if I am unable to work and support myself. My doctor said I can have the surgery or wait.
I am on meds that help a lot..doesn't work for everyone. I still have problematic symptoms so I cope by avoiding "triggers." It took a while to figure out what they were for me, and they may be different for you. For me it's things like bending over, lifting, turning my head a lot (driving), most methods of exercise, walking distances, etc. The pain is there daily, but it can be made tolerable with some lifestyle changes.
Interesting that you feel better after working out. Pay attention to your pain the next day though...and compare it to days when you did not exercise the prior day. If you're able to exercise, wonderful! Keeping your body healthy can only help. But like I say, pay close attention. Sometimes the effects are not immediate. Do you lift weights? That is usually at the top of the list of things that cause pain.
I haven't had surgery. The risks are high - there can be complications, and it's not a cure. Having surgery doesn't magically make your pain go away, though it may significantly help some people. You have to decide what's best for you - when your quality of life is so terrible, it's worth the risk. For me, my thought is that I will only consider surgery if I have a life threatening symptom or if I am unable to work and support myself. My doctor said I can have the surgery or wait.
I am on meds that help a lot..doesn't work for everyone. I still have problematic symptoms so I cope by avoiding "triggers." It took a while to figure out what they were for me, and they may be different for you. For me it's things like bending over, lifting, turning my head a lot (driving), most methods of exercise, walking distances, etc. The pain is there daily, but it can be made tolerable with some lifestyle changes.
Interesting that you feel better after working out. Pay attention to your pain the next day though...and compare it to days when you did not exercise the prior day. If you're able to exercise, wonderful! Keeping your body healthy can only help. But like I say, pay close attention. Sometimes the effects are not immediate. Do you lift weights? That is usually at the top of the list of things that cause pain.
I live in Washinton state! Wow - have you tried dr. Ellenbogen at UW? He's one of th foremost experts on chiari in th country. He is the one who saw me and said he is not comfortable doing surgery but it may be a different story for you.
How long have you had symptoms? I'm going on 13 years
How long have you had symptoms? I'm going on 13 years
Hello there!
I am in the same exact boat as you! I was recently informed that I have chiari malformation in September. The first findings were in January of 2010, but I am just now finding out about it (that doesn't seem right!!!!) I was referred to a NS who at first wanted to precede with PFD. However after a "conference" with other doctors who practice NS, he changed his opinion. He says that he wants further diagnostic testing (CINE MRI and some kind of sensory test) Although my symptoms have been worsening, my NS has dismissed me until surgery (if I do become a candidate) I have been referred to a Neurologist who is very kind and has impressive credentials. However, she isn't as aggressive as I would like in the sense that it seems like she takes her time making referrals for these special diagnostic testing. She prescribed Lyrica for me, but unfortunately, my insurance doesn't cover it. I will be able to pick up samples on Monday though. I am waiting for my PCP to refer me to a pain clinic to help cope with the pain until its decided whether or not I can have surgery. I have been contacting Chiari centers in Wisconsin and Colorado and New York. They emailed me back almost immediately saying that they would like a copy of MRI and radiologist's reports and if I remember correctly they don't charge you to look at such things. I live in Washington State and I have realized that there aren't any Chiari specialists anywhere near me. I know that many people needlessly deal with the symptoms of chiari because of the lack of knowledge from NS's. Perhaps you can contact one of the Chiari centers. If all else fails, you can always see if these specialists can help. After they review everything they determine if you are an eligible candidate to come out to their facility where they do 1.5 days of extensive diagnostic testing that isn't really offered by neurologists/neurosurgeons. In terms of working out, in my experience, I used to exercise religiously until it just intensified my symptoms to the point that there wasn't any relief. I guess everyone is different. How I miss exercising!!! It is hard enough to take care of my 1 year old daughter. With my recent falls and difficulty holding on to things it has caused substantial anxiety. As of right now I don't have a Syrinx but I do have degenerative discs in my cervical spine. I am sure that is contributing to the neck stiffness and pain. On top of that fun stuff there is reversal of normal cervical lordosis at the c3/4 level. Unsure if there is an obstruction of normal CSF flow (CINE MRI) will determine if this is a possibility as to why it feels like there is so much pressure in the back of my head. The herniation (in respect to the chiari malformation) is 1 cm. I know size doesn't matter, just thought i would throw that out there.
With that all said, and I got to babbling and I apologize for all that.. Why are you being denied surgery? Keep pushing for answers!!! I know I need surgery. I know that being a Chiarian means that we will have this for the rest of our lives and surgery is not a fixer! But if I could have some of my symptoms relieved, I would be so much more happier!!!!! I believe that if someone with chiari is having symptoms that are getting progressively worse they should have the option to have surgery!!! Ok, I am done babbling!! LOL!!!
I hope we can get some relief soon!!!
Krystal :)
I am in the same exact boat as you! I was recently informed that I have chiari malformation in September. The first findings were in January of 2010, but I am just now finding out about it (that doesn't seem right!!!!) I was referred to a NS who at first wanted to precede with PFD. However after a "conference" with other doctors who practice NS, he changed his opinion. He says that he wants further diagnostic testing (CINE MRI and some kind of sensory test) Although my symptoms have been worsening, my NS has dismissed me until surgery (if I do become a candidate) I have been referred to a Neurologist who is very kind and has impressive credentials. However, she isn't as aggressive as I would like in the sense that it seems like she takes her time making referrals for these special diagnostic testing. She prescribed Lyrica for me, but unfortunately, my insurance doesn't cover it. I will be able to pick up samples on Monday though. I am waiting for my PCP to refer me to a pain clinic to help cope with the pain until its decided whether or not I can have surgery. I have been contacting Chiari centers in Wisconsin and Colorado and New York. They emailed me back almost immediately saying that they would like a copy of MRI and radiologist's reports and if I remember correctly they don't charge you to look at such things. I live in Washington State and I have realized that there aren't any Chiari specialists anywhere near me. I know that many people needlessly deal with the symptoms of chiari because of the lack of knowledge from NS's. Perhaps you can contact one of the Chiari centers. If all else fails, you can always see if these specialists can help. After they review everything they determine if you are an eligible candidate to come out to their facility where they do 1.5 days of extensive diagnostic testing that isn't really offered by neurologists/neurosurgeons. In terms of working out, in my experience, I used to exercise religiously until it just intensified my symptoms to the point that there wasn't any relief. I guess everyone is different. How I miss exercising!!! It is hard enough to take care of my 1 year old daughter. With my recent falls and difficulty holding on to things it has caused substantial anxiety. As of right now I don't have a Syrinx but I do have degenerative discs in my cervical spine. I am sure that is contributing to the neck stiffness and pain. On top of that fun stuff there is reversal of normal cervical lordosis at the c3/4 level. Unsure if there is an obstruction of normal CSF flow (CINE MRI) will determine if this is a possibility as to why it feels like there is so much pressure in the back of my head. The herniation (in respect to the chiari malformation) is 1 cm. I know size doesn't matter, just thought i would throw that out there.
With that all said, and I got to babbling and I apologize for all that.. Why are you being denied surgery? Keep pushing for answers!!! I know I need surgery. I know that being a Chiarian means that we will have this for the rest of our lives and surgery is not a fixer! But if I could have some of my symptoms relieved, I would be so much more happier!!!!! I believe that if someone with chiari is having symptoms that are getting progressively worse they should have the option to have surgery!!! Ok, I am done babbling!! LOL!!!
I hope we can get some relief soon!!!
Krystal :)
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