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chiari w/ normal posterior fossa??
hey guys I've recently been diagnosed with borderline chiari 1 malformation 4-5mm. to keep this story short my symptoms are daily headaches that begin at the base of my skull and radiate to the front of my head till I swear my head is gonna pop. I have a feeling of being off balance like I'm typing, confusion or cognitive problems, I almost passed out while I was washing my client's hair, I always feel like I'm in a fog, muscle fatigue, general fatigue, there are actually so many other symptoms and I can't remember them. I also have hashimoto's hypothyroidism which is under control at the moment and isn't causing my symptoms. I don't have RA, lupus, or MS either. what are my treatment options if my posterior fossa is normal. my doctor seems to really not know what he's talking about and has put me on Topamax to help prevent headaches but it makes me feel worse and it makes me a mean angry person. I don't know what to do anymore. any help is greatly appreciated.
I wanted to let you know that I used to take Topamax also. I have heard people in the medical community call it StupidMax. It really makes your cognitive thinking slow for a lot of people. What you are describing is something I can relate to. I know you also have to drink a lot of water with the medication as well. My doctor ended up switching my meds to Gabbapentin. Topamax was switched due to a rare side effect of multiple UTI's (which I never get) My daughter is on Topamax and does just fine. I suffer from a lot of your same symptoms. I can really relate. Hang in there.
I wanted to let you know that I will join the other posters above in care, concern, and prayer for you. Keep current with any new questions that come up. Feel peace.
thanks guys! this helps... just as I was getting frustrated I found a place in Houston that specializes in Chiari and although it's far, I will have to make the trip and it's affordable for us! the other glimmer is they are in my insurance network!! pay for me that when I call to change the referral tomorrow that everything goes through smoothly. Omigosh this will be perfect if everything goes through ok.
COMMUNITY LEADER
Please check the Health Pages for links a thread with links to non-profits that will fly you to a Dr as well as surgery !
Many of us do have to travel as we do not have Drs close to home....so check your INS to see if that is possible or try one of the non profits to see if they can accommodate you.
I will keep you in my prayers and I'm sorry you feel so bad. I really know what you are going through. I am 34 years old, work full time, with 5 kids. My pay check doesn't go far now. I can't imagine after this surgery.
It might be worth it to spend the money to see the specialist though, in the long run, after spending so much money on different doctors, test, and meds without an answer.
I drove 8.5 hours in New York, Long Island to see Dr. B. I'll have to fly home after surgery. I may be paying off a credit card from just travel and lodging expenses for the rest of my life after this, but it's worth it. Lol
It might be worth it to spend the money to see the specialist though, in the long run, after spending so much money on different doctors, test, and meds without an answer.
I drove 8.5 hours in New York, Long Island to see Dr. B. I'll have to fly home after surgery. I may be paying off a credit card from just travel and lodging expenses for the rest of my life after this, but it's worth it. Lol
unfortunately the specialist on this site aren't near enough to me and it's not an option for me to go to them. I'm very frustrated. I made an appointment with ENT and I'm just going to wait and see what they have to say now. I'm so tired of playing the waiting game in the meantime feeling like garbage all the time. it's very frustrating. thank you for the response.
I believe many of them you can make your own referral.
Sorry if I repeated someone else. I just scanned through this post as I'm at work.
Sorry if I repeated someone else. I just scanned through this post as I'm at work.
Hi. I have a very small herniation. 4 to 5mm. But I also have other factors that my neurologist and first neurosurgeon said were completely normal. After seeing an actual Chiari specialist, he identified instability along with Chiari and I am recommended for surgery.
I guess my herniations are acting like a cork. They are fat, and not simply slipping through. I would recommend seeing a doctor you hear about more commonly on these web sites. Its very refreshing and encouraging to talk to a doctor who has up to date information.
I guess my herniations are acting like a cork. They are fat, and not simply slipping through. I would recommend seeing a doctor you hear about more commonly on these web sites. Its very refreshing and encouraging to talk to a doctor who has up to date information.
well, I'm a lil ticked to say the least. that specialist I was waiting on authorization to see came through and he referred me to ENT based on my referral packet without even speaking to me or me even seeing foot in his office. I'm thoroughly blown away and disgusted and sad and angry all at the same time and I don't know what to do now. any suggestions anyone??
COMMUNITY LEADER
Oh ok.....glad you found someone that is well experienced as it can make all the difference in recovery......glad you found the list as well.
Nevermind... found it. no he's not on the list but I did research him. he has much experience but no longer does decompression surgeries because he does less invasive surgeries now but he does still deal with syringomyelia and many other things related to chiari plus if I need decompression surgery he would be the person I want to give me the referral to the surgeon that will do it.
COMMUNITY LEADER
Wow...well sleep apnea is a related condition to Chiari and if you had it already it may still be part of your issue.....deff get it checked....
I also had my tonsils and adenoids out when I was 7...mouth breather...it did not help me...I also snore, but never woke gasping for breathe...Drs did oxigenation test and said I was fine...
Oh...fantastic....is your Dr on our list?....
No, and I also did not think I fit the criteria, but I do...so do get it ruled out medically as those are only a few ways to get a DX, not all with EDS are hypermobile....
it's while I'm awake. I had bad sleep apnea as a child. I would snore so loud then completely stop breathing for long periods then start breathing and snoring again. I had my tonsils removed and they said that was the problem and it was corrected. I was 3.... that was 35 years ago and medicine has changed so I suppose I should get checked. my doctor referred me to a neurosurgeon today that has much experience with Chiari and related conditions so I'm just waiting on insurance to approve it now so I can hurry up and see him and get this show on the road already. I looked up that eds and the only symptom I really have is the joint pain. does that matter?
COMMUNITY LEADER
EDS= Ehlers-danlos Syndrome....it is a connective tissue disorder related to Chiari....it seems many with Chiari tend to have this, and if not found b4 surgery it can affect the recovery process.....
Is the gasping when you are awake or do you awake from sleep gasping?
Sleep apnea is another possible condition that should be ruled out......
oh... and I have this strange gasping for air situation. it's almost like a need to yawn but I can't complete the yawn or like I can't get enough air. I cannot stand it!
no never been tested for eds. what's that? at the beginning of this I was experiencing near passing out episodes. I got that feeling like I was going to pass out but I had to stop and take slow breaths and hope and pray I didn't pass out. I actually did pass out about 8 years ago and when I came to my hands curl and I couldn't open them
COMMUNITY LEADER
A drop attack from the outside can appear to be the person passed out....but if you have ever passed out, you can feel the onset....but with a drop attack you do not....my Dr explained this way....
It is like a light switch being flipped off and right back on.....but even tho it is so fast you do not feel your self go out for those few seconds, you still fall...but you are aware you are falling but can not react or respond to call for help or stop the fall....when our CSF gets blocked it is the switch off....this is why knowing if you have an obstruction is important, all the electric pulses and autonomic responses can stop....which is our heart beating, breathing etc.....
Not everyone will have drop attacks or severe ones that affect breathing....but it is possible....
Have you been tested for EDS?....with EDS we can develop CCI cerviocranial instability....bobble heads...and yeah they can be much too heavy to hold up on our weakened necks....do ask for testing for this,.
what's a drop attack? I have bad balance issues too. I also have moments where my head feels heavy where I just don't wanna hold it up anymore or it feels like neck strain to hold it up.
COMMUNITY LEADER
I know, it is very frustrating....No EMG...the Drs had a "new" way of testing for it....sigh....it was not fallible as I now know....
With Hashi's your TSH levels can change reflect normal levels or go from being hyper to hypo....so something that needs constant monitoring,,. and to get regular ultra sounds to check for nodules and growth of them.
Well I was having drop attacks,,.,and that has stopped.....I also do not have the extreme balance issues...I was falling a lot too....HA's are also cut back.....
and that is really strange that they told you that you had something that they later said you didn't. were you tested with emg before the release surgery or only after? I swear these doctors have God complexes sometimes. btw...what relief did you get from decompression surgery
this is the single most frustrating thing I've ever had to deal with outside of the onset of hashimoto's. when I was diagnosed with that my TSH was 122 so I was at the bottom of the barrel. when these chiari symptoms began I thought my TSH was somewhere in the 100's again. but it was totally normal. hopefully my primary doctor doesn't give me any grief today. wish me luck.
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