Hello, I am new here and I just got an MRI today. I was scheduled for a routine MS visit and the report came back with Chiari 1 malformation. My neurologist wasn't in and I seen the assistant so I will speak with him on Monday as this is just the radiologists report. I have been having terrible headaches in the back of my head, fatigue and tingling in my hand. I am shocked and scared at this point having never heard of this before today. I usually go to a chiroprator for my neck pain and read on here that that is not a good option. I am scheduled for acupuncture tomorrow and would like to know if this is OK and if anyone has tried it for the pain. Thanks so much for reading. I'm sure you'll be hearing more from me once this sinks in and I talk to my Neurologist.
That is exactly how I got my dx too, from an MS scan. I had a lot of gait problems and to the DR's there first thought was MS. MS had been ruled out in my case. Do you have MS as well as Chiari? It amazes me how similiar the symptoms of the two diseases can be.
I went to the Chiropracter too for the neck pain...I also realized too late that it probably wasn't good for me! I do got to PT which seems to be helping a little. In fact, at my next appt. I was going to ask her about acupuncture too!! I have heard some success stories from several people that it helps deal with the muscular pain.
Take heart, it took awhile for me to let it sink in! The good thing is that it was found before your symptoms progressed too far and now you can do something about it.
Thank you so much for your reply. I do have MS also. This is really freaking me out right now and I am terrified of the thought of surgery. Could you tell me what your symptoms are? Also, is PT the only way you are being treated right now?
That's a lot to cope with..I am really sorry to hear that you have both these conditions!
My symptoms are unfortunately a very long list so I'll just hit on the major ones :)
- ustable gait (was very spastic preop but I still have a limp), with foot drop or heavy legs at times
-chronic muscle and joint pain
-Headaches (back of the head and top of the head with facial pain)
- vision disturbances (floaters, sparkles, double vision etc)
- constant involuntary muscle twitches and spasms
- permanent pins and needles and numbness in feet, comes and goes in hands
- severe neck and shoulder pain, travels down arms (mainly left)
- vertigo- moderate to severe
- brain fog (memory loss, out of it feeling, slow word recall)
- muscle weakness-all limbs, shoulders, neck
Like I said that was the short list..at one time I had 40+ symptoms!
As for treatment, I had the surgery at the end of December to halt the progression, which it did and I did see some improvements. I am just doing PT right now but I am considering looking at other options b/c it is not helping enough. Mainly the Pt is really good to help me build muscle strenght up but it is not helping as much with the pain. I am still looking for more answers and am waiting to see a batch of specialists so I am trying to hang on until then! I do not respond well to meds at all so I am really trying to find alternate routes to deal with the pain. I do take Tylenol Arthritis but it is barely taking the edge off these days. I would really appreciate you letting me know how the acupuncture goes!
I think many of us are given the MS scans to rule it out as symptoms are similar....and I know there r several that have both.Either alone is bad enuff and I am so sorry u have to deal with all this...it can be confusing and frustrating as it is diff to find drs that r well educated on the condition.
I know several that have had acupuncture and had success....like ne dr u may need to try a few to find the one that is right for u.
Carolyn gave u alot of info and know that we r a good source of info and support.....
We r happy to have u join our little family here, so sorry the reason u had to seek us out.
Thank you both for writing. It is comforting to have support. Carolyn, I went to see the acupuncture dr. today, although I can't tell you if it helped because he is also a chiropractor and does kinesiology. After I told him my main problem and the possible findings on the MRI, that of which I don't think he was knowledgeable about. We talked about my other problems like acid reflux and allergies. He did some kinesiology testing and chiropractic adjustments and never did the acupuncture. He told me they were wrong in the findings and wants me to stop taking my acid reflux meds and gave me a supplement for that and B1. That once I have my digestion under control that will help my headaches and allergies also. When I left there I felt just a confused as I did yesterday leaving the neurologist. I guess I have to wait and see what I hear back on Monday from the doctor and take all of this one step at a time, as hard as that is. Since I know nothing about this condition, could you both tell me if surgery is always needed or are there other ways of treating it? Will I always be in this pain or does it change? Is this something that usually gets worse? Thanks so much!
First of all, if this acupuncture doesn't have experience in Chiari I wouldn't really put too much stock in what he is saying. I would try and get a good NS who has a good backgroung in dealing with ACM.
Surgery is not always recommended...usually they look at your symptoms, how they are affecting your quality of life and how much CSF blockage there is or if the herniation is pushing on your brainstem. Many people do choose to wait it out and try different meds but you have to realize that there is a chance of progression.
For a long time I went through cycles and there were periods of time where I did feel better. However, once it progressed I pretty much just kept getting worse. Again, that was just me, many people find a good balance b/w pain meds and being careful not to do certain things that trigger their symptoms.
Honestly, the only hope I have found to help ease the symptoms is the surgery but you have to remember that isn't a cure either but it can stop the progression. I think that there is always hope that we can find a way to live without pain :)
I have to say ditto to what Carolyn said...not everyone with chiari is a surgical candidate....that doesn't mean at some point u won't need some type of intervention......
Getting to a true chiari specialist for assessment and to all other drs with chiari knowledge for treatment as well....ur PCP, chiropractor, acupuncturist.and.GI dr all need to be well informed on chiari.
Once u see a chiari NS, they should be able to tell u if u have a CSF blockage and overcrowding.....
i was diagnosed about 8 months ago at age 56. got tired of all the idiot doctors making stuff up, so i set out to find out what makes me feel better.
i see a private pilates instructor twice a week who helps unkink and elongate me. it helps a lot.
i get trigger point acupuncture twice a week. she concentrates on the tight muscles in my neck and shoulders and i know it is working because when i don't go i'm a mess and i've been having plenty of days lately when i say to myself, "i almost feel normal" trigger point is a smudge uncomfortable, but my annoying brain is not able to tighten the neck muscles as fast as the trigger point loosens them. my neck pain has stopped. i have had few headachy days. and i'm able to walk again--i'd stopped because it was giving me horrible headaches.
i'm also getting cranio sacral therapy which is kinda out there, but they've done scientific studies which prove it is the only external therapy that actually can move csf. not sure if it helps, but i keep going because i 'm feeling better and i'm not sure which of my therapies is the one i can't afford to drop.
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