Yesterday we had our first appointment with a NS about my chiari. I have to say it was a horrible experience. We drove 5 hours to what we thought was a chiari specialist, and after waiting 3 hours past our appointment time we finally seen him. He was so rushed to see us, and very dismissive of my symptoms. They did a cine mri earlier that day which showed no spinal fluid blockage and my herniation is only at 7mm. But these are my symptoms. I have had intestinal issues for years, but the more recent symptoms are: I have terrible pain in my neck and shoulders, and when I say terrible I mean really bad. I have can hardly move my neck without excrutiating pain. I have always had soreness but the last couple weeks have been almost unbearable. I also have headaches, that start at the back of my head, feels like there are bricks in the back of my head and they go around to the front of my eyes in a band pattern. I have horrible pressure in my head, and a high pitch ringing on and off in my left ear. I also have hand and legs tremors, and I have had brain wave testing done that shows I am having seizure activity. I have numbness in the middle of my back, and have had this for a long time. I have also had numbness off and on in my hands and feet, but I now have developed raynaud's disease. This is a circulatory problem, but basically my hands and feet turn white and purple, all the color drains out of my fingers and toes and they are as white as can be..what isn't white is purple and very numb and tingly. It is very hard to get the circulation in them again. The more I walk the number I get. I also have enlarged lymphnodes seen on my mri of my neck. All these things and the NS had no answers for me. He said he doesn't think that it is related to Chiari at all, since there is no spinal fluid blockage and my desention in only at 7mm. He said Chiari progresses so slowly that even if he scanned me in 10 years from now my desection might only be at 8mm. I can understand if Chiari is not the cause of these, but what frustrates me the most is he offered no help to finding out what is. He said he is a spine and neck specialist and I would have to see a cardio vascular specialist and rumatologist. My main problems are with my neck and spine, and he did not pay attention to that. He kind of rushed us out, as I followed him into the hall way trying to get some more of my questions answered. We left there with nothing, no further testing from him, just told to follow up with my PCP and tell her to order a flexation xray of my neck and back to see if possibly my bones were rubbing together. My husband and are so frustrated, I think I cried all the way home, and I am normally pretty tough. I just feel like giving up. I tried running around the yard last week with my girls to play hide and seek, and if I ran my head hurt so bad, and I wasn't able to. This week has been the worse with the neck pain, I can only stand for a little while before I hurt so bad. If any of you have any ideas of what I should do I would appreciate it. Has anyone ever had symptoms like this related to chiari without a spinal fluid blockage? Is it even possible? Thank you
Thank you Emmaline, My husband wants me to get a 2nd opinion, but I'm not sure what to do. Especially since he said my spinal cord fluid is not blocked. Do you know if there is a possibility that while laying flat on my back for the cine mri would show a good flow opposed to bending and moving? It seems to be that I get worse headaches when I bend over and the pain in my neck increases with bending, and moving. I get very light headed if I even try to touch my toes, wandered if possible that the fluid could be blocked only while in these positions?
Emmaline said:
Jojo, that must have been frustrating for you! I'm not sure why a 7mm herniation would be dismissed as the cause of symptoms. I don't know why that should surprise me, mine was 18mm and it was dismissed by a NL...
Get another opinion, I know it's overwhelming to do so, but unfortunately it a necessity with our illness. If more physicians had more knowledge about Chiari, we wouldn't have to go from dr to dr wasting time. If the NS thought that this could be controlled with medications, and he would have you on a wait and see type of thing that would be different. But it does seem like he was dismissing the Chiari. The cine was clear according to him, but he should still be accepting of your symptoms...hang in there...
Thank you I will
Emmaline said:
I do know that position has a lot to do with it. Some places have a stand up MRI, check to see if one is in your area. If not keep that in mind for your 2nd opinion. Good luck!
Hi Jojo
you have mentioned "blocked". I had no blockage, but 2 areas of "restriction", which warranted consideration into the whole picture for me. Be sure and get ALL of your images on CDs from the facilities that you had them done at, as well as the radiology reports. I would then also get his notes from that visit...make yourself a notebook, and keep on plowing through this.
Of course, for any of us, there is the "chance" that our worst sysmptoms arent chiari related, but a bigger chance that they are, so do not give up. I had decompression surgery 18 days ago, and what Dr. Oro found when he opened me up was MUCH more extensive than he imagined he'd find. He even did some skull reconstruction. So, a good doc needs to look at the whole picture.
If the doc you saw acted like that, you def. don't want him working on you anyway! :-)
Start compiling your info, ask lots of questions on here, try not to get overly discouraged, and go to the next step.
Hang in there! you'll get there!
Kelly
Hi Kelly,
I actually have been following your posts, I am so glad to hear you are doing so well, and recovering well from your surgery. What mm was your Chiari? They just said that mine was not blocked and that I had a good amount of room for spinal fluid flow. My dr. was very quick, and said chiari doesn't progress that quick and mine was very minimum, and would not cause symptoms. Who knows? Thank you though for the encouragement.
gunna2gtthr12 said:
Hi Jojo
you have mentioned "blocked". I had no blockage, but 2 areas of "restriction", which warranted consideration into the whole picture for me. Be sure and get ALL of your images on CDs from the facilities that you had them done at, as well as the radiology reports. I would then also get his notes from that visit...make yourself a notebook, and keep on plowing through this.
Of course, for any of us, there is the "chance" that our worst sysmptoms arent chiari related, but a bigger chance that they are, so do not give up. I had decompression surgery 18 days ago, and what Dr. Oro found when he opened me up was MUCH more extensive than he imagined he'd find. He even did some skull reconstruction. So, a good doc needs to look at the whole picture.
If the doc you saw acted like that, you def. don't want him working on you anyway! :-)
Start compiling your info, ask lots of questions on here, try not to get overly discouraged, and go to the next step.
Hang in there! you'll get there!
Kelly
So sorry to hear about your appt. I to have 7mm's. I have severe neck and head pain. The pain is always at the back of my head but will make a band around the front. I have been to the rhumetologist, ear doctor, physical therepy, multiple nerologist, neuro surgeon, caridiologist, orthodontist,and many more. Everyone has a different idea but the answer is always...sorry, can't help. This does cause depression so don't be afraid to seek professional help. I was a runner before the headaches began. Today I am unable to run down the driveway without causing me to cry in pain.
I use a c-collar almost daily. This helps a little.
I was interested to know if you are sensitive to the touch on your head? The slightest touch is extremely painful for me.
I have diminished flow both on brain stem side and skull side. I have horrible pain in my neck. I wasn't able to drive because I couldn't turn it to see the crossing roads to see the oncoming traffic. I finally went to a pain institute. A cervical spine MRI was ordered. It showed a lot of damage in my neck; the cervical was riddled with problems.. starting of degenerative disc disease, protrusion of my discs - not ruptured yet. I have facet pain and they started giving me facet injections. It felt better and I was able to turn my head now, but it quickly faded and my pain was back. I went one more time three weeks later - same thing, it wore off within a couple of days. This coming Monday, I am going in at 8:15 to have a Facet Radiofrequency Neurotomy, which really is a radiofrequency that touches where the facet meets a longer thicker main nerve and heats it until the muscle doesn't twitch. In all hopes it will give relief for 6 months to a year. I could handle that.
Just saying that maybe your PCP can hook you up with a pain clinic or institute so they can check up for nerve and all sorts of other pains. I'm not saying that it fixes everything, but what I can do now just with two visits of injections makes me look forward to getting this procedure.
My CM1 was diagnosed Sept of 2011, for about six months before that I was having horrible pain, headaches that radiated just like yours. I am ENORMOUSLY sensitive to bright lights, the sun shining off things - like snow, which is likely to start at anytime here where I live. I have to use polarized sunglasses all year long. I found that the bigger full faced ones work best. I bought mine at a fish and gun store. You can see down in the water, deep to where you can make out fish. They are the best! When my eyes start getting effected, I get nauseous. My story is on my page, minus the past year so maybe should I update it.
Anyway, the pain thing and possible cervical damage in your neck being causing your pain, it's a thought for you to bring up to your PCP.
A Chiari Sister~Lori D.
Hi Hope,
Thank you for responding. My head is sometimes sore to touch but not as painful as my neck and shoulder are. I do get the same kind of headaches and running is also impossible for me. I used to jog every night and then it went down where I just walked every night for the last year, and now I can't walk more then a block without being in so much pain and my back, feet, and hands going numb. I am so sorry you haven't gotten any answers either. Did you have a cine mri? Did any of the doctors believe your symptoms were Chiari related? I do know that it feels like it hurts more sometimes to hold my head up, feels better when I put a towel under the base of my skull to relieve pressure off of my neck. I am so sorry you hurt so much, and I hope you are able to get answers. Somehow we will get through this. I am interested to hear more of your story if you don't mind.
Hope said:
So sorry to hear about your appt. I to have 7mm's. I have severe neck and head pain. The pain is always at the back of my head but will make a band around the front. I have been to the rhumetologist, ear doctor, physical therepy, multiple nerologist, neuro surgeon, caridiologist, orthodontist,and many more. Everyone has a different idea but the answer is always...sorry, can't help. This does cause depression so don't be afraid to seek professional help. I was a runner before the headaches began. Today I am unable to run down the driveway without causing me to cry in pain.
I use a c-collar almost daily. This helps a little.
I was interested to know if you are sensitive to the touch on your head? The slightest touch is extremely painful for me.
Hi Jojo,
I am a mom of to young boys. They are the reason why I get up on my days off. I have not been able to find anyone locally that has been able to help me. My doctor sent my info to Wisconsin Chari Inst. in August. After a couple of returned emails things just stopped. On return calls or return emails. very upsetting.
Recently I have been having problems with pain and tingling in my legs and hand. Not sure if this is related but it sure does not help.
Have you had a hard time explaining my condition to others. I feel like there is no good way to say something is wrong with the position of my brain. My husband trys to help but I don't know how to help even myself. This condition is stressful on my family and my social (lack there of) life.
Where have u tried for help?
I am so sorry you were dismissed. My spinal flow was not at a complete blockage but it was abnormal and impeded. Basically the NS described it as hitting the herniation and it's blocked, blocked, and then a sudden high velocity gush of fluid. He said even though there was flow the abnormality of the flow was causing my symptoms. I asked him why some days I would feel almost normal and others I would be dizzy, off balance, and feel like my head may explode and he admitted he didn't know for sure but said that it is possible various internal and external things could cause inflammation in the body making the flow worse than usual on some days than others.
I'm not sure what specialist you saw but I see above a recommendation for Dr. Tew at the Mayfield Chiari Center. I had surgery almost 3 weeks ago with Dr. Ringer at Mayfield and I second her recommendation. So far they have proved to be a great group of doctors and they really take the time to listen to your concerns. Dr. Ringer didn't immediately recommend surgery. He met with the rest of the group to make sure they agreed the benefits outweighed the risks where I did not have a total blockage of CSF. While waiting to hear back was nerve wracking this actually made me feel more comfortable with them and made me feel that they weren't just doing surgery for the money!
My herniation was read as 8mm on my initial MRI and 10mm on my CINE so it's close to yours and definitely was causing issues. I suffered so much neck and shoulder pain and just 3 weeks out of surgery it's improved.