I am 30 and I have been recently diagnosed with a Chiari I Malformation with a 20mm herniation. My symptoms have been as follows: loss of perephrial vision in 1 eye, constant unbearable headaches with little to no relief from meds, occasional periods of hearing loss, severe vertigo, vomiting, feet/hands going numb, and periods where my hands just don't work correctly. I met with a neurologist today and ended up with a (what I consider) strange treatment plan. Keep in mind he is not a chairi expert (couldn't find one here) but he wants me to try taking 1-10 (up to 10) tablets of an old tyicyclic antidepressant with the hopes that I will suffer the side effect of drowsiness. He is hoping if I sleep more all the symptoms will stop. During this time he wants me taking no pain relievers (which granted, only worked sometimes to take the edge off the horrible headaches) and then he will meet with me in 3 weeks to consider a neurosurgeon consult. Has anyone else ever heard of something like this? This was not at all what I expected from my appt.
Is the med ELAVIL? If so, then yes....I have heard of this. My pain specialist ut me on this in desperate hopes that I would finally rest and have a little relief of HA's. Well, it worked. I mean I still suffer and this is not a long term treatment ...he just wanted to get me comfortable while awaiting surgery.The HA's are still bad and daily....but bearable ebough that I can take care of my family a little. It has been my saving grace while awaiting the right NS and surgery treatment. I really would not be able to get through a day without the help of that medicine. I have to warn you though that one of its side effects is weight gain...i put on about 15lbs...that will not come off until I am off of the medicine, but the pain was so unbearable that I would rather have the 15lbs and dull daily ha's with an occasional terrible one...than to be 15lbs lighter and have horroible HA everyday with absolutelyu no relief. I still require surgery for the other symptoms and to restore CSF flow ...but until the endof the month at least I can function. Do you know if your Csf is obstructed...alot of times once the herniation gets to that point it really starts to block up your flow. I mean there are plenty people with 20mm herniations that are symptom free, but there are many of us (mine is 28mm) that are symptomatic.i think mine is 28, it is somewhere between 26 and 29 i think...mine are not the same length on the right and left. Then there are some people that are 3mm and are in worse shape than us.....
Many Drs will try diff things like this as Rahe mentioned above.....
Where r u?....we do have a list of Drs for u to use to help u research and locate the right Dr for u.The list is not a referral and is just the list of the members own Drs, and not all may be true chiari specialists, but have successfully treated a member here for it.
Getting back to the treatment plan, some Chiari NS's may even try PT, meds and wait a bit and do more testing, this is what u want...u do not want to rush into this surgery as it is not a cure and it helps to know everything else that may be going on as it can affect how u feel and heal....U do not want something not found to affect ur recovery....so, take ur time and find the right Dr for u.
I am in Spokane, WA. The dr didn't even discuss CSF. He barely discussed my symptoms and only wanted to really discuss the headache and none of the vision or problem with my hands and feet. He briefly looked at my images but didn't really discuss them with me. I am a the point that I am throwing up from the pain constantly. I have to work....my family can't survive otherwise but it is taking everything I have to get out of bed somedays. Basically he told me that maybe it has just been one long (3 year long) migraine and with enough sleep it will go away. He said try this for 3 weeks and then we will see. Idk if I can make it 3 weeks like this.
Yeah not the best area for Chiari drs, there is one up that way....but check with our list and ur ins and see if u can travel...many of us do and it is well worth it.
I pushed myself for too many yrs, I went to Drs and they gave me meds just for migraines and it did not help....if u have chiari and u r having many of the chiari symptoms u will want to get the opinion of a true chiari specialist....many will give u an opinion from ur MRI's...so make copies....some Drs charge a minimal fee, while others do the review for free in hopes u bcome a patient.
Where do I find the list? I haven't navigated around much. I am guessing it is probably Dr Ellenbogen at UW. I have read about him/her all over the net. Thank you for the help. I am just so lost right now.
If I am correct....Imiprine is in the same classification of elavil. They are both older meds that drs dont prescribe often anymore...but to my knowledge they do work. For the most part. I had the same problem with my previous NS, all he wanted to talk about was my HA's....like nothing else matters. It is very frustrating. I started the elavil and 10 mg increments and slowly moved up to 100 mg a day. 50mg/2x a day. It may be worth a try to find a little relief until you find another dr. I am not agreeing with your NL by ANY means...just going off of personal knowledge and experience....I went through over 20 meds for my headaches.,...and nothing else worked. Best of luck to you, and as Selma mentioned....it is worth it to travel if that is what it takes...I cannot say enough that a TRUE chiari specialist makes all the world of difference. BEst wishes to you.
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