What the BEEP do I do now?

[PrimitiveGuy]

Ok...I go to my regular Dr and tell her I have been having mild daily headaches for about a year now and that they seem to be getting a little worse and they tend to be just on the left side of my head starting at the base of my skull and shooting to the back of my eye. She ends up ordering an MRI and they say I have 5-6mm Chiari Malformation. Soooo, I am sent to the local Nuro Dr. who does not know a thing about CM. He sends a referral to the Mayo Clinic. Mayo writes me back and says sorry but we are not going to see you because we are full and you do not seem that bad. (I agree my symptoms are not that bad but I know nothing about this CM and would love some answers) Well, I got some advice from this forum that the Mayo is not that great with CM anyway so I figure that is fine and I send my MRI and info to the Chiari Clinic in WI with Dr. Heffez. Now he writes and says "You may have a mild cervical stenosis, minimal if any Chiari I malformation and very minimal symptoms." After his review, he states that he does not believe it would be beneficial for me to visit their Center. Ok...so now what? I looked at cervical stenosis on the internet and that does not sound like what I have at all. Do I just live with whatever this is until things get worse and then maybe someone will want to see me? Is there any real danger if I do nothing about CM and just go about my business? Should I push trying to find a Dr that will see me or should I just sit back and wait? Any suggestions, advice, help or anything would be really appreciated! Thanks!

[selmaS]

HI...I totally understand ur frustration and having chiari does not mean u need surgery....hence why the NS did not want to see u....the NS looks at ur symptoms/quality of life....overcrowding...and if u have a CSF blockage....if not, they will suggest u be monitored by a NL....u may need pain meds ect.....

That said, u do need to keep checking the MRI's usually at 6 months and if ok at 1 yr intervals...UNLESS ur symptoms change.

May I ask beside the headaches u mention what other symptoms do u deal with daily?

Surgery is the last option when chiari is progressing to slow progression and hopefully prevent perm damage......

What MRI's did u have...Brain w/wo contrast.....cervical spine, thoracic and lumbar....

If not, mayb u can educate ur PCP on chiari and how to check for all the related conditions...syrinx, tethered cord, DDD, stinosis....EDS......ect.....

What u need  now is pain management, education for ur PCP/ NL......and a watchful eye on the chiari and ur symptoms.

"selma"

[cyberpyxi]

Some Chiarians that I've spoke to have little to no issues, other than headaches and occasional other problems. Perhaps you'll be just fine.
If I were in your shoes, I would talk it out with my doctor. Tell him/her that I am still worried, and would like to make sure that I'm going to be okay with letting things be. I would then ask for a CINE study (to see the fluid movement and any blockage in the brain), ask for a spinal or cervical spinal MRI to rule out Syringomyelia, and then find out what other Neurologists are in the area that may know about Chiari's (asking on these forums, searching online, etc).

If all you have is the headaches, and all of your other tests are coming back okay, even seeing a specialist at this point won't do you much good. Without presenting many symptoms, surgery is well out of the question, and medication isn't really necessary. I do recommend you talk to your PCP about medication like Midrin for the headaches (I only suggest Midrin because it works so well for me). I take my one midrin when the headache starts, and it takes care of about 99% of them... whereas otherwise, I was taking 6 to 8 Aleve during the bad ones. Not good for the liver, that's for sure.

For the time being, for the information, you can always peruse these forums, as well as various causes and foundations to keep abreast on what you may end up experiencing.  

One more thing I do want to say... I had these fluid headaches since I was fairly young. I was always told they were just migraines. The rest of the symptoms didn't show up for many many years. Knowing about the Chiari Malformation all those years ago wouldn't have changed the progression of my condition, perhaps just the meds I was given, and would surely have given me peace of mind as I got to the point I am at now. Maybe that's just where you are. You had headaches, and maybe in 5 years you'll start having other problems. The thing is, if you do, you'll know what it's from.

Best of luck, and don't be a stranger!
Ambyr

[*Stormy*]

Hello

Unfortunately, the attitude seems to be to wait until the symptoms become severe before they will do anything.

From what I hear, a lot of people do live with the symptoms successfully especially if they avoid certain triggers that can make things worse. I wouldn't say that there is a real danger, however, there is a chance of progression and sometimes it can be quite rapid. You could have years of mild headaches and then all of a sudden have numbness, weakness ect.

So... I would definitely find a doctor that will follow this with you so if there does start to be some progression you will have someone to go to. I wish I had been able to nip my in the bud way earlier as I feel I wouldn't have so many complications now (and I'm post-op).

Good luck to you!

Carolyn