20mm extension with no syrinx

Hello to all my chiarians! Hope all is doing well...Just a question..I went to see a NS to discuss my newly diagnosed chiari malformation. It is 20mm extended but show no signs of a syrinx. He gave me steroids, valuim, and suggested physical therapy. Has anyone had any success with these types of treatments?? He seems to think that my memory problems and the fact that i can no longer carry on a normal conversation due to lack of words or saying the wrong thing, has nothing to do with the chiari. I beg to differ because I was perfectly capable of conversing with people a yr ago! So, does anyone have any comments about this?? He also did not think it was neccessary to perform a cine MRI.

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask what other symptoms u r having?....We do tend to get brain fog, and have our chiari moments, but with out a NS that is a true chiari specialist u may be going up stream in a canoe with out a paddle.

We have a list of drs compiled by the members of their own drs, the list is not a referral, u need to research all drs to find the right one for u....

Have u only been affected this past yr? If so, what even took place to cause this change?...were u in a MVA or have a fall?

   "selma"

[Sheri817]

Thanks for the welcome Selma. Still trying to fig all this out. I have had back problems, headaches, but always blamed it on mild herniations in my lower back. But during the thankgiving holidays i got a severe headache that started in the back of my neck and radiated to the top of my head, so i went to see my pcp and he told me it was a tension headache prob due to stress. I have had many of these before. But this one lasted almost 3 wks so I was at my witts end. He sent me for an mri to see how my lower back was doing and i insisted that he also do an upper mri to see if the discs were mabye causing the prob with my head and neck that is when he discovered the 20mm extension and ref to a NS to see if i was an eligible candidate for surgery. The memory problems and loss of words have been coming on for about a yr now. I knew there was something wrong when about 5wks ago i was coming home from walmart and got lost.  I make that trip about 2 or 3 times a wk and go the same direction every time. It's only about 2 miles from my house. Plus, the other day I called my daughter by my sisters name (my sister passed away 18yrs ago) so its not like i use her name very often. Plus, walking from the kitchen to the living room to sit down causes my heart to pound like ive been running or somthing. I think what hurts the most is that my husband thinks that what the NS said makes sense and that this will fix everything. He was so excited when we left and could not understand why i was totally disappointed. Not that I want surgery, I just want to have a normal life again!

[Sheri817]

Also selmaS, wanted to mention that I've always had 20/20 vision until I was 40. Just woke up one day with blurred vision when trying to read something. Finally went to eye doc..still have 20/20 only with astygmatism. Just needed reading glasses. But in the last 6 mo or so it has gotten so bad that even the glasses don't help. Some days it is ok and others i can't read anything. Also, the pressure at the top of my head is terrible, feels like i have a severe sinus infection, you know how your head always feels heavy when your sinuses are clogged up? Plus, sometimes i loose the hearing in my rt ear but only for a few seconds. And I stay dizzy most of the time.

[selmaS]

  The problem is Sheri, chiari is life altering, and u may not go back to where u were b4, and many times surgery has left a person worse off then b4.....u never know how u r going to respond.

If the chiari is not affecting ur overall health, and ur quality of life, then it should be the last resort as it is a risk as it is major surgery.

U may want to get a 2nd opinion from a chiari specialist...the length of ur herniation is not of concern, it is if it is causing an obstruction.....

U will also want to be checked for other related issues, and make sure u r not going to a Dr that claims surgery will "cure" u.....run away if they do.....

Many with Chiari also have reflux, thyroid, sleep apnea issues all these need to be looked at as a few could be the  reason for ur  pounding heart when u r walking.....

I used to hyperventilate talking.,...but, ur husband is most likely scared for u, and does not know how to help, so this sounds like a easier way for him to deal with this....and many chiari drs do try these methods first to see how ur chiari is affecting u....so I would suggest trying them, and getting another opinion and seeing how u do.....

  "selma"

[linnielou232]

I know how you are feeling.  I was on the same journey as yu are on right now.  I went to 2 other dr's before finding one who would listen and really explain to me what is goin on.  With the 1st two visit's I was like you.  I had a 3 hr right for 1 and I think I cried all the way home because I felt I didn't get the answer's I needed and felt so discouraged.  I agree with Selma. This is a life altering issue and I also suggest you ask your husband to do some research also so he can kind of understand what is going on with you.  I also experienced the heart racing.  My NS explained it to me.  At least in my case, it was due to not getting enough flow to the brain.  Selma said it the best.  It's the the length but the width.  I decided on surgery due to my head became feeling like it was in a vise and my husband also agreed we couldn't live life like this no more.  I'm thankful for the decision I made the pressure headaches are gone, but as Selma also stated for some of us there are other issues that you might have o accept which I never excepted and it hit me really hard.  It was hard for me to except not having my normal life back.  Once finding out yu have Chair having surgery doesn't make it go away.  Sad to say but true.  Once a Chairian alway's a Chairian.  I hope you get your answer's you are looking for.  I know what this is like for you.  Just hang in there.  We are here for you.  Take one day and Dr. at a time.  Everything will turn out for the best for you.

[dpulum]

Sheri,

I had many of the same issues that you listed.  When I was diagnosed, my herniation at 20+mm, the herniation was long, but the doc didn't think it necessarily had to be fixed because it didn't look like I had a blockage.  The steroids actually did help me, but only for short periods of time.  I would take the 10 day series and would feel better for a week or so, but then the pressure in my head kept coming back (and the side effects of the steroids were pretty awful).  

I ended up getting to a chiari specialist and had decompression surgery in 11/09, after my surgeon finished the surgery he told me that I had a lot more crowding than he expected and I also had malformed discs at C5 & C6, so I had those repaired the same day.  I am much better since those surgeries.

I also had issues with getting lost going to very familiar places, getting nauseous in stores, having tunnel vision, etc.  They ended up figuring out that I had nystagmus, which was impacting how I viewed things, I couldn't take in peripheral information, so I could see what road I was on, but couldn't take in information well enough to tell how far down the road I was, so I got confused.  I actually bought GPS to help keep me from getting lost during the worst of it.  Many of my most debilitating symptoms were visual and affected my motion and balance.  All of those symptoms improved after the surgery, I still have some pain/pressure in the back of my head and some tremors, but I'm a lot better.  

I'd make sure that the doc that you are seeing is an expert at Chiari's.  Because CM runs in my family, I knew to keep asking questions and looking for the right kind of doctor, but it was still a confusing journey at times.  

Tina