When I did my MRI for my spine, the NS only ordered a scan of my cervical spine. I am having trouble with tingling in my middle - low back now that increases day after day. It's really odd that it is connected to my breathing. When I feel my chest tightening and my back starts to hurt where my lungs are, the tingling in my back increases a hundredfold. I called and left a msg for my NS about maybe looking into my lumbar spine and lower for any other abnormalities that might cause this. Strangely, the only time I get any relief is when I am on prednisone for my asthma...which I guess they also use to treat spinal injuries. I hate to sound like a hypochondriac (which I feel like these days!) but I am worried that we missed something. I know I've asked a lot about asthma and breathing problems with Chiari, but as my breathing becomes more difficult to manage I feel like there is something more.None of my asthma meds are working! I am sick and weak all the time and can't focus. Ugh!
We'll see what he says when he calls me back...let me know what you all think! Anyone with lumbar/thoracic spinal problems (syrinx) let me know about your breathing :)
I have a Syrinx extending from C5 > T2. From time to time I get a cramp like pain from my shoulder blade down my back and under my arms, This leaves me fighting to get my breath and is very frightening. The NS said that numbness and twitching I have in my lower legs is caused by the Syrinx as well. I also have bladder problems due to this...
My MRI didn't show any syrinx in my cervical spine, but I'm wondering if I need to ask for a scan of my thoracic spine to rule out any abnormalities lower down. Just curious about how low syrinxs are that cause breathing problems. I have a similar pain in my back, arms that is associated with my breathing issues. I don't know! Maybe my breathing stuff is just my asthma getting out of control...My only leg issues are sciatic pain, achy joints and restless leg. Weakness only when I have a chiari headache or asthma attack. No bladder problems.
Hi Rosemarie, I think that anyone with CM should have a full spine MRI as there can often be associated problems lower down the spine. I don't know if this is the policy in some hospitals but my own feeling is that it should be part of the Chiari Investigation
I have asthma and recently took predisone because my inhaler wasn't helping. I have been dealing with a lot of symptoms (fatigue, dizziness, headache, neck pain, wierd sensations in head, 'swimmy" head feeling) and I have found my breathing to be more of an issue when I am experiencing these other symptoms. I am working on finding a specialist to see if chiara is what could be causing my symptoms because a recent CT showed that I have low lying cerebellar tonsils and that "this could be further assessed witha follow-up MRI of the brain". I am exhausted with feeling bad all of the time and know something isn't right but don't know anything yet. I also have mild scoliosis and an issue with my lower back, chronic pain due to compression of the thecal sac at the S1- L5, L3-4, L4-5 w/desiccation & degeneration w/diffuse & annular bulge & disc protrusion. I am going to continue to do research and hope once I get insurance again I can see a specialist. I just want to avoid the "pre-existing condition" issue.
That sounds exactly like my problem with breathing and prednisone and the swimmy feeling. My NS said that there isn't any connection that he can gauge between chiari and asthma. That's why I want to look into my lower spine -- to see if there is some nerve issue that makes it tough to breathe.
Good luck to you and avoiding that pre-existing condition issue! Thanks so much for sharing. I'm exhausted too!!!!!!!!!! Often all I want to do is sit and cry, without the energy to really focus and work or take care of my kids. I do it, because I want to and have to, but it doesn't bring the same joy because I feel so cruddy all the time. I feel for you, I really do. I'll let you know what my dr says today when I see her to ask about ALL 1,000 of my symptoms. I don't think she will help much but what else can I do?
What I just read all your posts and find them interesting, I just got diagnosed with a CM three months ago but have been having some of your symptoms for months now, since about March, saw an allergist who put me on Claratin but I don't see much improvement, I have been stuffed up for ages, hard time breathing with exertion, and I'm told my snoring is out of control, I now wonder if it's related, I'm having a SCF flow MRI with contrast in a few hours in Boston, I wonder just how much of the spine is looked at. I've also had chronic back pain for 4 years since a fall, am told surgery not needed just 3 bulging discs and arthritis, but I wonder again if all is somehow related.
thanks for sharing. Have you been to the doctor yet? I am still having issues with my asthma while also continuing to experience the head symptoms.I struggle each day with the same symptoms I think is associated with Chiari and had another PCP tell me I just needed prozac or it was just my allergies....very frustrating. Let me know if you got any answers......take care
It turns out that the prednisone was the root of MOST of my problems. Between the prednisone and Advair and xopenex -- all steroids - I was having severe acid reflux symptoms that were overlooked. The docs just kept putting me back on prednisone. I figured out on my own that it was reflux, after doing research online about Advair and other asthma meds and the effects they have on asthmatics.
My doc gave me prilosec, which I am not taking any longer and am doing ok. Now that I know I am NOT going to die from the tightness in my chest, I don't panic and just breathe through it. I forsee it being gone as soon as the prednisone is out of my system. She gave me a taper, but I cut it three days short. Today was a VERY bad day, but now that i know the prednisone was causing most of it, I am willing to push through until I am past it. I gained 10 pounds on the prednisone over the last 6 weeks and am miserable about it!
I quit taking my Advair and xopenex too. I am focusing on my breathing -- through the nose steadily, and not panting through my mouth. All of these things are online if you do a search. I am taking this new approach now. The pulmonologist I saw found fluid behind my eardrum and had the nerve to tell me that maybe my symptoms weren't form that chiari thing at all. Really? I didn't have that fluid bubble two weeks ago. It amazes me how little they know about chiari. She also says that sinc there are no nerve endings in the lungs, it can't be a neuro problem. If you look up MANY neuro diseases online, you will find that most of them include difficulty breathing. SHE IS CLUELESS so I really haven't made any headway. Other than to come to the conclusion that I need to see a naturopath, work on focusing my breathing, and stay healthy. The h1n1 really knocked me off my feet.
I do have a post-nasal drip that causes me to cough a lot (dry) which is how I found the chiari in the first place (headaches). She said to flush sinuses with saline solution and maybe use flonase (but I won't use anything steroidal again). I just use saline drops and blow my nose. I take sudafed sinus headache and it helps a bit. Mostly I just live with it now,and since I understand how to deal with it better, it's not as scary. I think only a Chiari specialist will ever understand what we are going through completely.
I too have a snoring problem, but so does most of america, says my doctor. Having allergies causes enough inflammation to swell sinus pathways and cause snoring....yadda yadda. I'm tired of doctor talk! Basically they all end up thinking we are hypochondriacs. She actually tried to blame me for how much prednisone they prescribed me because I called on a friday and they couldn't see me. Then send me to the er instead of giving me meds! Sheesh. Always my fault! My kids all have asthma so we've been using humidifiers at night and it helps a great deal. Airways get really dry, especially in winter with heat on.
Hope this helps you! Let me know if YOU find out anything. Allergies and reflux are the enemy of the asthmatic, for sure. Don't underestimate how horrible your asthma will get if you do have either of those seemingly minor problems. I associate my symptoms with chiari too -- but either way, there isn't much we can do but guess and check and hope the next idea helps the symptoms. We are, after all, just big huge bundles of symptoms either connected or not...no one knows! Best of luck. Wait til you get off of the prednisone -- all the side effects that you could possibly get with taking that med, you will have because you have chiari and have most of those symptoms anyway. I know this is a lot of writing. I feel bad I didn't get on sooner! Take care...
i just had decompression surgery on 11/23, so i am 3 weeks post op tomorrow. i was to the point that i would get winded just carrying on a conversation, so i can relate to what you are all saying. i no longer have that problem!! what they found when the dr. went in, was 3 arteries were completely closed off and the 4th was partially closed due to overcrowding in my brain. the dr. could only see ONE artery that was closed off on the mri.....so, dear friends, i shudder to think where i would have been 6 months down the road. if i were so lucky to have made it another 6 months! i'm not saying this is the same problem all of you are having, just want you to be aware that the possibility does exist for it to be directly related to your chiari malformation/over crowding!
good luck and God bless
Oh my gosh! Thank you so much for sharing that! Might explain why prednisone and other asthma meds don't help us. I will FOR SURE check in with my NS and have a look at that scan again. He didn't mention anything, and neither did the report, but maybe it isn't visible? Or maybe it is a completely different problem, but so good to know that we are not crazy and that you are well :) So glad that you did the surgery and it made you feel better. That's enough for me to consider surgery sooner rather than later!
katarina333 -- something I forgot to mention about the prednisone is how DEPRESSED it made me. I didn't even want to TRY to do anything. It makes you feel like not even pushing through, but rather like giving up. I felt more motivated today than I have in over a month...maybe there is hope for us chiari asthmatics after all :)
glad to give you hope! on my mri, my dr. could only see 1 artery that was "partially closed". the others could only be seen once he got inside my head. like i said earlier, i'm very thankfull that something inside told me not to wait. if i had, well....
and to be perfectly honest with you, the surgery, for me anyway, was really not that bad! it's easy to be scared when you think of all the things that can go wrong. when i finally set a date, all i could think or say was....wow. that's it. just wow! i was second guessing my decision right up until i got off the plane. but i was lucky. i had a friend going in right behind me for the same surgery, so we kind of fed off of each other for courage. i was more scared of the other stuff they do to you than i was the actual surgery itself! lol! but seriously, instead of filling your mind with all that can go wrong, fill it with all the good that can come from it instead! we all know it's a gamble and we all know the risks. i just know that i wouldn't have been here much longer had i not had the surgery. go with whatever your gut tells you and to heck with everyone and everything else. this is something that you and only you, will know if it's the right choice and when it is time. i also have a firm belief that all the folks here praying for me and all my family and friends praying for me had a tremendous affect on my outcome. i never once felt alone. and while i always had my parents support in whatever i decided to do, it wasn't until they saw....and were told...what i was going thru, did they truely understand the magnitude of what i was, and had been going thru and dealing with on a daily basis. they no longer look at me like i'm making things up or am just being lazy. they push me....HARD...to follow what the dr. told me to do! the turn around in support has been astounding! not to mention refreshing! even my son has stepped up to the plate and really changed 100% ! considering he's bipolar amongst other things, this is truely amazing.
so, you are not crazy! and as for hope....as long as you have breath left in you, faith in your soul, and the will to choose, there is always hope for a better life. just follow your gut. i did, and i believe it saved my life.
You have given me more courage today than I have had in awhile. Making that apt today was a first step to realizing that I may actually have to do this. How big was your herniation? Mine is 5.2 mm but I have complete compression, with very little space for CSF to move. It's minor by surgical/diagnostic standards, except for the magnitude of the compression. He didn't say anything about compressed artery, but if you had three hidden ones, there is no telling. I am a mom and a teacher, my voice is everything to me! I can't project or talk for any length of time without feeling winded. I've never really suffered with asthma until recently -- maybe it isn't asthma at all???
In the meantime I will try to treat my symptoms as they come and I'll try to keep a journal of what is working and what isn't. I will take that with me on january 8 when I see my NS again.
Thank you so much for that piece of information that may have saved MY life! :)
i'm no dr., but i am a betting woman and would be willing to bet you would notice a signifigant improvement in your breathing after you have had the decompression surgery! but again, i am not a dr. and this is just my own personal experience. my herniation was 9.5 on the right and "notably smaller on the left" according to my reports from the surgery. i have not a clue as to the size of the left one, but would guess maybe somewhere between 4-6mm. and i had "minimal posterior restriction at the foreamen mag." dr. h is the only one that addressed the overcrowding, which for me, was the most important issue! sure there are bumps in the road with healing, that's the norm. i can only tell you that for the first time in so very long, i have hope that most of my former life will be restored and that i honestly feel like i will be my "old self" once again!!
wow! this is very enlightening! we actually have 11 arteries in our brain. if you look at the placement, it explains so very many of our symptoms in relation to overcrowding. i plan to ask my dr. when i go back for my 6 wk check up which ones of mine were blocked off, but have a good idea after googling circle of willis amazing, folks, simply amazing!!!!!
Thanks for sharing all this Elizabeth, I've been second guessing my decision to have the surgery, but after what you just wrote I feel better about it and am going to look at the positive and not what could go wrong.
I also have overcrowding and a slight obstruction, am always tired dizzy in pain no energy etc. I know this surgery does not perform miracles, but I am so hoping for a much better quality of life.
Besides two little ones I also have two older children. I keep forgettting to ask, could this be genetic? My oldest daughter has a 25 degree curve scoliosis, she has awful headaches (not all the time), and constant back pain, she also recently told me when she gets a massage her toes tingle or go numb. She has seen so many doctors and no one finds anything wrong with her, she has never had a brain mri and now I'm begging her to go for one.
Hi...there r studies going on now to pinpoint more data, but it does look like that is a very big possibility.
There r some families that the mom and several of the children have this condition.......it is more likely to be on the mom's side of the family tree, but, my father has more of the symptoms than my mom, and of course in his 70's and would never consider being tested bcuz he can not stand the thought he passed this on...regardless if it might help him.
I have a cousin on my dad's side with spina bifida....so I do think it can be either side....not being a dr eh...who knows.....but deff have ur DD checked.
I believe that everything happens for a reason -- you all are giving me the courage to move forward and have the surgery before this condition takes over more of my life. If we wait for medical confirmation of all of our symptoms in relation to Chiari, we may NEVER get it. I am trusting my gut on this one...with a little help from my friends :) On Jan. 8th when I see my NS I am scheduling the surgery. I will take a 6 week leave of absence from school (just like a maternity leave, I tell myself, only no diapers to buy :)) and go from there. I will not wait until I get worse, to allow myself to get better.
God bless you all! I did google circle of willis and I found just the information I was looking for all of these months. I truly believe that we all suffer from the symptoms of severe overcrowding and how that affects our MAJOR vessels! Take care all :) I now have the courage to do it!!!
I know exactly how you are feeling, when I called last week and had them schedule the surgery I almost called back so many times, but you're right, can't live like this. Not fair to us and I also feel not fair to my little ones, when a headache hits I have to keep telling them to play more quietly, or I just can't even enjoy them because it's to much of an effort. I also feel confortable with my decision and hope to God all goes well.
I just found even more evidence I needed to confirm at least in MY mind that my breathing problems are not asthma: From a Neuroscience book on amazon.I read the excerpt after finding it by googling "arnold chiari and circle of willis"
"In a tonsillar herniation, the tonsils of the cerebellum herniates inferiorly toward the foramen magnum and compresses the medulla which may result in respiratory compromise and death."
Wow. I think that I am going to schedule mine for as soon as I can arrange everything. I may be out of work for awhile, but we owe it to ourselves, our families, our KIDS to be ourselves again. I feel better just making the decision. Taking control of my own life feels good :)
In the meantime, I will continue to do as promised: no asthma meds (they don't work anyway), focused breathing, and taking care of myself in general. I'm steering clear of my doc because she just makes me feel bad. Only my NS gets it...and he's the only one that matters now! Alex, when is your surgery scheduled for? I will pray for you and your family! God bless you all for the encouragement you have given me in the past two months since my diagnosis. I can't say enough how blessed I have been to find you all :)
rosemarie...i'm so glad you took that information a step further. i had hopes that you would! congrats. on making a decision and know that thru every step from here on out, you will never be alone. all of us here will be praying for and thinking of you and when you are too weak or scared to walk on your own, you know that someone very special will be there to carry you. God bless you, my friend and i hope you now have a new level of peace within yourself. i know i did!
Ahhh! Now that I've made the decision and know that my husband is with me, I feel like a million bucks! Ok, a million bucks that got put through the laundry and then set on fire and then put in the freezer, but hey...at least I know that I'm on my way to getting better!! it makes a huge difference to take control and move forward :)
I also asked about that MRI of my lumbar/thoracic spine and he said he'd be glad to order it just to see what my symptoms were all about. Dr. Gore is awesome :) He didn't scoff at me when I told him about the research that I've done...he just sat and listened and AGREED with me! No guarantees, or course, because CM is so vague symptom-wise, but he AGREED with me. He didn't say it was a bubble behind my eardrum, or brush me off as an internet loon looking for symptoms to justify surgery -- he actually told me that he knew which studies I was talking about and had read them and felt I had reason enough to think that my symptoms could be helped. I feel like a million washed out broken up bucks because my doctor listened and believed in what I had to say. After my insurance authorizes the surgery, i will set the date and let you all know.
Glad to be moving forward! Thank you for all of your support and advice:)
So happy to hear u found a dr u r comfortable with and can move forward....please post ur surgery date and who will post updates while u r in the hosp on the thread for surgery dates....and afterward u get to add ur name to the zipperhead thread : )
My surgery is scheduled for January 26th, like you I feel in my gut I made the right decision, I need a better quality of life. I won't lie though, I am so scared, I asked my doctor the statistics and he said 2/400 get the leak from the brain ( I looked this up and know that permanent damage can occur with it and death). I just have to stay positive that it's under god's hands how I come out of it.
Glad your doctor listened to you, when I mention some of my symptoms to my PCP and even NS, they tell me not from chiari, breathing sometimes, difficulty swallowing, ringing and full feeling in my ear too, also I have had nose/sinus congestion for 10 months, I know in my heart it has to be from chiari, never had that problem before.
I know what you mean! I am terrified, but only my NS understands and will listen. My other docs put me on prednisone and inhalers that DON'T HELP! I too have had nose/sinus congestion and ifficulty swallowing off and on for a REALLY long time. My voice comes and goes at will. Those other docs just give meds you don't need because they don't understand. I am confident that for both of us, we will be better soon! I am hoping my surgery will be around the same time...just waiting on the insurance now. I'm so excited by the prospect of being WELL :)
A lot of the problems I have now, I've had all of my life, but progressively got worse with each child I had (I have 3 now) and they quadrupled in intensity after my last child and a cough I had 8 months ago or so. I believe that because we are otherwise completely healthy, we will pull through just fine! My NS is extremely confident that I will too. When I laughed at a joke yesterday and got a HA as a result, I was reminded again why this surgery is so important! How can you go through life afraid that laughter will cause you pain? Especially with children who are so darn cute and funny!
Wish you all the best! Continue to trust your instincts...we were made to "know" things in our hearts so that we could take care of ourselves :)
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