Now What?! & In The MeanTime... NW Ohio/ SE Michigan

[LoLa1454]

Hi everybody so I just found out that Im 6mm herniated. About 4 years ago I was having severe migraines and had the docs do several tests for CM and all came back negative now all of a sudden it's here. I started seeing a chiropractor to treat my migraines on a biweekly basis for almost a year now and I believe this is what caused it. I have a family history of CM: type 1's decompression surgery went very bad!!, type 2's decompression surgery went very good (2 is obviously much younger then 1) and then we have a type 0 in the fam who is being monitored. I'm not eager to rush into surgery and neither is my doctor so for now I would like to treat my symptoms the best I can because I know my pain could be so much worse.

SO WHATS MY NEXT STEP?
I do however want to stay ontop of this because I know how severe it can get. I haven't been in yet to the docs office the finding is less then a week old and I have a CT scan scheduled for next Tuesday for something else so she wants to wait to see me until we have all of the other testing done before we meet. (My presenting complaint was pulsatile tinnitus They found a vascular loop that's within close proximity to my 8th cranial nerve) what questions do I need to ask? And who should I go see as far as a specialist because I want a second opinion. This is all so overwhelming and I've already read (and witnessed first hand) horror stories. I live in NW Ohio and am on Medicaid

IN THE MEANTIME
Has anybody found any relief through diet restrictions or maybe different yoga positions or stretches to help with the CSF flow? How about any at home devices like specialty pillows, TENS machines etc? It's just that I have found so much relief from chiropractic adjustments and now I'm being told no more so I know my pain will soon be on its way back and with vengence!!

Thank you for your input I'm aware everything must be discussed with my doctor first and no direct medical advice can be given but I'm just looking for input from other people who are dealing with this.

[selmaS]

  Hi and welcome to the Chiari forum

I agree with the above poster you will need more testing to see what else is going on...it is possible the bad results of decompression were not due to the type but knowing what else was going on for that person...and having the right Dr is KEY ! there are many Drs willing to do the surgery as that is how they make a living....HOWEVER, you would not take a foreign sports car to the local mechanic to fix the transmission, you find one that works primarily on foreign cars transmissions....do the same with yourself!

Have more testing to see if you have an obstruction of CSF fluid and other related conditions....

Most of ALL listen to your body as to what you can or can not do, we do have a list of activities to avoid...but some of us need to restrict even more depending on what all is going on with us...we all will be affected a little differently then someone else...so what works for one may not work for someone else...same with Drs...this is why we do not refer  Drs only supply a list for you to research.
We also have a list of questions for the NS...use the search this community feature to locate that info. Or ask for help if you have trouble locating it.
Know you are not alone...

[Lottida]

Hi & sorry about your new Chiari diagnosis:-(  I know that this is scary to deal with, but sounds like you will definitely need more testing (MRIs).  The surgery is usually done to restore CSF flow.....so do you know if yours if blocked??   CINE MRI can determine if CSF flow is blocked.  Surgery doesn't always relieve the migraines, but in my case it did decrease drastically once the CSF flow was restored.  You will also need to have MRIs of the entire spine to rule out Syrinx & other problems (Syrinx usually requires surgery to prevent further damage to the spine).  I would suggest also to review the "activities to avoid list" on this forum.  Some activities will trigger the symptom cycle or enhance them.

Another bit of advice that I can give you is to find a Chiari specialist!!!  With the knowledge of a specialist, you will feel much more comfortable in your decisions for treatment.  I am 7 weeks post op & actually had a little set back due to a CSF leak (surgery again on June 2nd)-------BUT I still feel way better than I did b4 & I would do it all over again!!!!!!  I will ALSO say that I had a lot more symptoms than just headaches b4 I agreed to surgery (I was dizzy for 7 weeks, could barely walk & lost hearing in my right ear).  You need to be your own advocate since you know your body the best.  Do not do the surgery if you don't feel its the right choice.  Wishing you the best!!!