Aa
Need a doc near mi
Hey guys i was diagnosed a week ago suffering from episodic dizziness. First pcp said it was all in my head and to go home. That was in nov 2013. Well i refused to believe him....i know my body and this crap wasnt normal. So i pushed harder and ended up with an ent who ordered an mri to rule out tumor. Well tumor ruled out (yay) but i was told i have cm. at first it didnt seem to big of a deal. But the more i read the scarier this gets. And i thought my only symptom was dizziness but now not so sure. So i am looking for docs in michigan that know this disease. Can anyone get me in the right direction. Thanks....mel
Sorry it took me so long to comment back. I found out in either august or September of 2014 that I had chiari malformation. I am not decompressed as of yet. My surgery is actually scheduled for early in april. Dr. Gilmer felt that all of my symptoms were caused by the chiari
COMMUNITY LEADER
Lori well said...So much I too have said often, u need a true Chiari specialist....too many only want to hear the good points, such as a Dr saying after this u will be cured, or fixed....run as fast as u can away from promises like these....no one can say how u will respond to surgery b4 u have it just as they can not tell u how long it will take for u to recover,,,we are all different and a general guideline can not be held on to firmly when it comes to these issues....we have to wait and see how we do.
Finding the Dr that is right for u is always a must....no one can refer or suggest who u see....and u can not compare one patient to another as to how they did recover...we are all diff and have diff needs.
Thank you, thank you, thank you all!! Wow, I am amazed at the amount of good information you have all provided me. I am so grateful for each one of you and your input.
I have experienced life altering chronic pain, numbness, tingling & twitching in my arms and legs for months. It started in my feet, then hands, then both limbs, neck & shoulder pain and for years have had the pulsating headache in the back of my head worsened by strain. Weird thing is I also have a head tremor and body tremor with this. Dr. Gilmer, neurosurgeon, said most of my symptoms would be relieved by decompression surgery, removal of tonsils (18mm herniation, previously told by another neuro it was 5mm, with actual MRI report showing a 9mm herniation) to state it in simple terms. The problem is that she doesn't think ALL of my symptoms are caused by the Syrinx and CM. Namely the tremors. She wants me to see a Neuro. Specializing in tremors and movement disorders. She is an excellent doctor. Great credentials and reviews through Head & Spine Institute of MI, also Beaumont Hospital. Most recently, I went to the eye doctor today which revealed an optic nerve issue. I will be seeing a Nero-Opthalmic specialist next to determine the severity. This only adds to my pile of proof of a medical problem, yet I am still not completely diagnosed. See my symptoms are severe and I am almost to the point of becoming paralyzed in my legs. I can barely move around, walking is slow and very stiff, getting up from a seated position is aweful (I look like a robot forcing the movement) as well as bending over (same, it looks as though I am forcing the motion). I would like to keep contact with you Mel5056 ( I am a Christian too ) I just don't know how to do it on here. Please advise. Thanks a million!!! <3
I have experienced life altering chronic pain, numbness, tingling & twitching in my arms and legs for months. It started in my feet, then hands, then both limbs, neck & shoulder pain and for years have had the pulsating headache in the back of my head worsened by strain. Weird thing is I also have a head tremor and body tremor with this. Dr. Gilmer, neurosurgeon, said most of my symptoms would be relieved by decompression surgery, removal of tonsils (18mm herniation, previously told by another neuro it was 5mm, with actual MRI report showing a 9mm herniation) to state it in simple terms. The problem is that she doesn't think ALL of my symptoms are caused by the Syrinx and CM. Namely the tremors. She wants me to see a Neuro. Specializing in tremors and movement disorders. She is an excellent doctor. Great credentials and reviews through Head & Spine Institute of MI, also Beaumont Hospital. Most recently, I went to the eye doctor today which revealed an optic nerve issue. I will be seeing a Nero-Opthalmic specialist next to determine the severity. This only adds to my pile of proof of a medical problem, yet I am still not completely diagnosed. See my symptoms are severe and I am almost to the point of becoming paralyzed in my legs. I can barely move around, walking is slow and very stiff, getting up from a seated position is aweful (I look like a robot forcing the movement) as well as bending over (same, it looks as though I am forcing the motion). I would like to keep contact with you Mel5056 ( I am a Christian too ) I just don't know how to do it on here. Please advise. Thanks a million!!! <3
Selma makes a great point here! There are SO many factors for failures... one other factor that I would like to point out though, is that people have surgeries by NS who DO NOT specialize in Chiari and truly do not know enough. These surgeons have caused more harm than good to people... some in the worst way. I say this not to scare you, but to emphasize the importance of seeing Chiari SPECIALISTS. And you may wish to see more than one! There are some specialists though, who choose to treat the Chiari and not look any further. Well, if you have tethered cord, for example, decompression surgery is pretty much senseless unless they untether the cord, as this will just cause the brain to be pulled right back down.
I certainly do not know all of the surgeons and places, but I know there are a couple of "centers" specializing in Chiari and its related conditions, so I know through close acquaintances that they have been thoroughly checked out prior and even after surgery.
It is really worth asking questions of ppl who have seen various doctors/centers and hearing the process they went through. Now, please understand though, you can't judge each individual's "success/failure" rate... as there are SO many factors that contribute to that. (That is an entire conversation in and of itself, really.) Just know at least a pretty good list of what other diseases/disorders go along with Chiari and ask the docs you see about them (with the KNOWLEDGE that these are REAL and have been proven co-contributors to symptoms in way too many people for it to be a "coincidence", as you may hear docs say!) Arm yourself with knowledge, dear one! It is your most valuable tool!
While arming yourself, do not let yourself gt mired in the whole success/failure thing. I can't stress this enough! The acknowledgement, let alone treatment, of Chiari is still just coming into being! A lot of the failure has to do with that... just focus on what's attributable to CM, what the co-contributors are, and who the specialists are. From there, you start your OWN journey to find the right doc FOR YOU. After all, YOU have to be comfortable with your doc! Now that doesn't necessarily mean the best bedside manner! LOL! But honestly, if they answer your questions... patiently and thoroughly... and don't seem just simply anxious to "put another surgery under their belt", then they are worth "something". Some people DO need surgery more quickly than others though, please do realize that too. My personal experience was that my NS said that the time for me to have surgery would be determined by my "quality of life". That answered the question for me right away... along with all the other patiently answered questions I had.
Don't be afraid of the surgery as long as you have a well-respected specialist. There are worse surgeries... seriously! Also, keep foremost in your mind... there is NO CURE for CM! Surgery is only a treatment. If anyone tries to tell you any different, they are wrong! (NSs included!)
I wish you the best!
((HUGS)) and blessings!
I certainly do not know all of the surgeons and places, but I know there are a couple of "centers" specializing in Chiari and its related conditions, so I know through close acquaintances that they have been thoroughly checked out prior and even after surgery.
It is really worth asking questions of ppl who have seen various doctors/centers and hearing the process they went through. Now, please understand though, you can't judge each individual's "success/failure" rate... as there are SO many factors that contribute to that. (That is an entire conversation in and of itself, really.) Just know at least a pretty good list of what other diseases/disorders go along with Chiari and ask the docs you see about them (with the KNOWLEDGE that these are REAL and have been proven co-contributors to symptoms in way too many people for it to be a "coincidence", as you may hear docs say!) Arm yourself with knowledge, dear one! It is your most valuable tool!
While arming yourself, do not let yourself gt mired in the whole success/failure thing. I can't stress this enough! The acknowledgement, let alone treatment, of Chiari is still just coming into being! A lot of the failure has to do with that... just focus on what's attributable to CM, what the co-contributors are, and who the specialists are. From there, you start your OWN journey to find the right doc FOR YOU. After all, YOU have to be comfortable with your doc! Now that doesn't necessarily mean the best bedside manner! LOL! But honestly, if they answer your questions... patiently and thoroughly... and don't seem just simply anxious to "put another surgery under their belt", then they are worth "something". Some people DO need surgery more quickly than others though, please do realize that too. My personal experience was that my NS said that the time for me to have surgery would be determined by my "quality of life". That answered the question for me right away... along with all the other patiently answered questions I had.
Don't be afraid of the surgery as long as you have a well-respected specialist. There are worse surgeries... seriously! Also, keep foremost in your mind... there is NO CURE for CM! Surgery is only a treatment. If anyone tries to tell you any different, they are wrong! (NSs included!)
I wish you the best!
((HUGS)) and blessings!
I havent even seen dr gilmore yet and and just as scared as you. What i can say is stressing about this helps absolutely nothing. In fact i had not experienced a chirari headache until this weekend when i was crying and took my stress to an unhealthy level. I dont know your faith buti can tell you i a am turning this over to God. Thru Him i can get thru anything and figuring this stuff out is no different. I dont know where in mich you live but would like to stay in touch if possible. This is not aomething you want to do alone. Mental aupport is going to be key. I know i need it ;)
COMMUNITY LEADER
TinyRN makes a good point....just bcuz u have a DX of Chiari does not mean surgery is an option at this point....
And in MHO most failures with this surgery occur when related conditions were not looked for and found b4 surgery.
This is an important step.....as many of these conditions can cause many of the same symptoms as Chiari...and one can think surgery failed when in fact it is something else causing the symptoms....plus having these conditions can even slow the healing process....so get tested for ALL related and non related conditions .
Heather-
I know its scary looking at the sucess and failure of surgeries but one can not get caught up in those ties. IF your symptoms progress to need clicinial management with surgery try finding someone that may even be farther than MI that you find good ratings and believe you can trust. The recovery process and time is different for everyone. I went back to work (I am a nurse) after 2 weeks of surgery. I knew my limitations but I was going stir crazy sitting at home and feeling like a burden I wanted to help other people, I knew not to lift or bend over and I took it slow and I generally say it took me about 2 months to feel "normal again" to where I felt like I had some strength in me. But there are chiari specialists everywhere. I dont suggest surgery if you dont need it but if there are other precipitating factors such as a syrinx that is causing nerve damage, loss of gait, paralyzing factors, etc then I suggest finding a physician that has the best ratings instead of looking into the surgery itself. There is not just ONE surgery that people use to correct this. But if you are looking for a reputable one and are willing to travel Dr Levi in Miami is wonderful. His bedside manner could be a bit better but hey if your like dr. house (From TV) then who cares as long as he knows what he is doing and he does it right. I have only had problems with headaches and occasional numbness as my syrinx corrects itself because my ventricles were too small and it was too dangerous for a shunt. Trust me the whole ordeal is scary especially knowing the medical half of what it entails, the only reason why I agreed is because he told me in 2-5 years at my progression I would have been paralyzed in my arms and then my legs and I love nursing (I am going for my NP and I cant do much paralyzed) especially with a 6 month old at home at that time, I could never dream of not being able to hold your own baby. So the choice really lies within in you, but I would def. see if surgery is even NEEDED first. I hope this helps.
I know its scary looking at the sucess and failure of surgeries but one can not get caught up in those ties. IF your symptoms progress to need clicinial management with surgery try finding someone that may even be farther than MI that you find good ratings and believe you can trust. The recovery process and time is different for everyone. I went back to work (I am a nurse) after 2 weeks of surgery. I knew my limitations but I was going stir crazy sitting at home and feeling like a burden I wanted to help other people, I knew not to lift or bend over and I took it slow and I generally say it took me about 2 months to feel "normal again" to where I felt like I had some strength in me. But there are chiari specialists everywhere. I dont suggest surgery if you dont need it but if there are other precipitating factors such as a syrinx that is causing nerve damage, loss of gait, paralyzing factors, etc then I suggest finding a physician that has the best ratings instead of looking into the surgery itself. There is not just ONE surgery that people use to correct this. But if you are looking for a reputable one and are willing to travel Dr Levi in Miami is wonderful. His bedside manner could be a bit better but hey if your like dr. house (From TV) then who cares as long as he knows what he is doing and he does it right. I have only had problems with headaches and occasional numbness as my syrinx corrects itself because my ventricles were too small and it was too dangerous for a shunt. Trust me the whole ordeal is scary especially knowing the medical half of what it entails, the only reason why I agreed is because he told me in 2-5 years at my progression I would have been paralyzed in my arms and then my legs and I love nursing (I am going for my NP and I cant do much paralyzed) especially with a 6 month old at home at that time, I could never dream of not being able to hold your own baby. So the choice really lies within in you, but I would def. see if surgery is even NEEDED first. I hope this helps.
I saw Dr. Gilmer too. I'm from Mi. I am undecided about getting the decompression surgery. I am 43 and just discovered that the horrific symptoms I started getting in June of 2013 were mainly due to a CM that I never knew I had. It's scary, thinking about the percentage of success versus the failure of the surgery relieving symptoms. I'm not looking forward to the recovery process either, especially if it doesn't help my symptoms.
Hi aburns18...that is who i am waiting to get into see. Hard to get appt but i have one in may. I had another appt with someone else and but then found her.
This stuff ***** no matter which way i look at it. I am 42 and everyone says well you lived this long with it so you will be fine. I say no i lived this long not knowing and thinking symptom free. But now i have symptoms so obviously its progressing. How long have you known, have you had surgery? I am trying to find positives in all of this...just too new to see any
This stuff ***** no matter which way i look at it. I am 42 and everyone says well you lived this long with it so you will be fine. I say no i lived this long not knowing and thinking symptom free. But now i have symptoms so obviously its progressing. How long have you known, have you had surgery? I am trying to find positives in all of this...just too new to see any
Sorry that you are going through all of this. Know you are not alone. I myself am from Michigan. I use a doctor by the name of Holly Gilmer. She is from Beaumont in Royal Oak. She is wonderful and really listens to your concerns. She is very knowledgeable in chiari and I do know chiari is one of her specialties.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
May I first correct u on this is not a disease, but a condition....I know so many do refer to it as one, but it is not a disease....u can not catch it, as it is a malformation of the skull and most likely congenital....those that get a DX of Chiari which is not congenital is acquired Chiari and that is due to a trauma from a fall or MVA.....
As for a Dr we do have a list compiled by the members here of Drs they have been to , treated by and liked...so it is not a complete list and may contain Drs that are not true Chiari specialists....the list is NOT a referral nor an endorsement....but a means to help u get started in researching Drs.
Be advised u may have to travel to get to a true Chiari specialist and it is well worth it to do so, then to settle with a Dr just bcuz they are close to home....
Take a deep breathe and remember to exhale.
oh and know u r not alone.
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