Hello fellow Chiarians!
I am looking for experiences/advice! Anything would be appreciated! Here is a super quick overview of where I'm at.....
I was dx'd 2 yrs ago with chiari (10mm). The NL that dx'd me sent me straight to a NS who explained surgery, but gave me no direction & wasnt well versed in chiari. I took a break from doctors after that to re-group and calm down and learn about it all. I dont have a lot for typical chiari headaches. I have a lot of dizzness- this spacey out of it - drunk kind of feeling. I also get very dizzy if I look up and cannot lay on my back due to insane dizziness. I have a variety of other chiari symptoms, but those are the most troublesome/annoying. ( I can list the rest if it would be helpful) Recently, I got referred to a new NL in hopes of getting some answers regarding my troubling symptoms and to find out "how bad my chiari is". The first NS didnt really tell me that. I used to be very active, but have since limited my activities drastically as I do not understand what exactly makes chiari worse and could put me closer to surgery. I dont want to over-limit myself, but I dont understand what activities are safe for chiarians. The NL I saw last week did a brain & cervical MRI, EEG, nd some autonomic tests. She said the brain mri showed no change in the chiari, cervical mri was unremarkable, EEG showed some irritated sharp waves in one area, and the autonomic tests were fine. When I asked specific questions about my chiari she was less than helpful and said chiarians have no limitations and I can do everythign I want including working out, running, etc. This leads me to think she isnt the dr to be trusting! I have tossed around the idea of seeing a specialist since I found out about my chiari. I just didnt know where to go, who to see, and no one around me really supported the idea. Ive researched and Dr. Menezes in IA is 6 hrs from me and Dr. Oro in CO is 10 hrs from me. Looking for experience or recommendations for who i should see in my case? I dont believe I need surgery and i dont want surgery! I just want more sure answers on my troubling sypmtoms and to know how 'bad' my chiari is and to learn better what i need to do and not to to live with chiari as best and as fullest as I can without surgery and how to keep myself from needing it! Thanks to anyone with any help!
you can send copies of your mris to both places if youd like. i sent mine to dr oro free of charge and he called me back within 2 weeks to set up an appt. note i live 20 hrs away, so he must have had reason to see me. wonderful dr he is. i am having my second surgery ther in colorado with dr oro on aug 20th. i saw him in april after my surgery with reg ns last aug, there was no change. dr oro calls it recurring chiari. my first surgery was a crainiotomy and laminectomy with no opening of dura and left me with muscle damage. dr oro is going to open my dura, use a patch of my own tissue and put in a plate to adhere my muscles to and repair them. did you have cine mri and if so is there any blockage? do you have a syrinx? i did not nor do i now that i know of. good luck and keep us updated........Dana
Thanks for the reply! In answer to your questions.... I did not have a cine mri. I asked the 1st NS I saw about doing one & he explained that their hospital doesnt do them & that there is no need for one because all chiarians have changed/obstructed flow because of the tonsils being too low. When I saw my new NL last week I asked her how much fluid flow I had and she didnt pull up my mri or anything... just said I have fluid flow. I think she was just saying that to get me to stop asking. Lol I dont know if she has access to Cine at their hospital bc after she gave me some false/really stupid chiari answers I stopped asking her questions. Lol I have had a lumbar mri for other reasons and no one mentioned a syrinx there and I had an upright cervical mri with my new NL but there was too much motion on it for them to really read it. So.... no one has really checked me for a syrinx. The 1st NS said that he didnt see one forming at the bottom of my brain mri so that meant there wasnt one when I asked. As far as my understanding goes... one can form anywhere in the spine... but I guess thats me trying to be 'smarter than my doctor' again! Lol
As Dana suggested a CINE MRI would be a good next step to see if u have a CSF obstruction, and overcrowding....more MRIs of the thoracic and Lumbar to see if u have disk issues, syrinx, tethered cord, ICP, POTS< ehlers-danlos etc....should be ruled out as well as sleep apnea.
This is how u see how the chiari is affecting u and ur overall health....too many look at the herniation only and that is not the only concern.
There is a list of activities to avoid with Chiari and Syringomyelia...this is listed in the Health Pages....http://www.medhelp.org/health_pages/list?cid=186 just look thru the titles for one Activities to avoid with Chiari and Syringomyelia....there is other helpful info posted in the Health Pages .
Know u r not alone and either of these Drs would be a good one to go to.
That makes total sense Selma! That is exactly what I want to know is if I have any of the relating conditions and how it is affecting me overall and in the long run. Will one or both of those doctors do the necessary tests and rule out those conditions? I looked at both of their websites and made quick inquiry calls to both clinics. Dr. Oro has you come for 3 days and does a variety of tests by the sounds of it.... Dr. Menezes sounds like the initial visit is more of a consultation. Does this mean Dr. Oro would be more thorough and I'd get more answers? Dr.. M. doesnt practice at an actual 'chiari center' so I havent been able to find much about how they go about things, but I have heard some good reviews from people that have seen him and he seems to be an award winning physician according to many dr rating sites......
I went to Dr Menezes to have my surgery done and the initial visit was a consultation. I went to that first visit in march,then went back in may for MRIs, CTs, bloodwork and all then finally got my surgery done on July 2nd. He is a great surgeon but sometimes you dont know when hes being serious or joking.
I looked through some of your journal posts... sounds like you had excellent care while you were there! There isn't anything very recent.. how are you doing now?? I noticed in one that at first Dr. Oro had you doing some lifestyle changes before opting for surgery... can you tell me more about what he says/how he handles things prior to needing surgery? At this point, i do not want surgery or think I am in desperate need of it... so I am definitely going to be looking for some advice from whichever specialist I see as to how they handle life with chiari without surgery....
Shawn.... I have heard that from others about Dr. M that his personality can be hard to figure out at first. As long as he's a great dr... I am okay with that! Lol
Was his consultation/testing pretty thorough? At this point, i dont think I need/want surgery so I am definitely going to be wanting to find out how my chiari is affecting me overall, and limit out any related conditions. I am 6 hrs from him, since the 1st visit would only be a consult... I want to make sure it would be worth it! Does he give non surgical lifestyle options on how to live with it without surgery or did you Need surgery asap?
He is very thorough. At my consult he was asking about all the different pains and related conditions and he took it very seriously. I had bladder problems so I had to see a urologist before and I will again in september to see if the decompression helped my urine flow problem. Im not sure about the lifestyle options I had just been living with it for so long I wanted surgery. Im sure he can point you in the right direction though because he knows alot about chiari.
Sorry about the delay in answering. I am back to work full time (went back 2 mos post op) and I have chiari lol so I'm not on a whole lot. I had to see a lot of specialists because of related conditions. (rheumatologist, endocrinologist, pulminologist, cardiologist to name a few) he is very thourough I am blessed! He also asked me to go gluten free and lose weight due to psedotumor. I am doing much better post op. I will always have issues due to chiari and EDS yet I am functioning and on no meds:) 1 day at a time!
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