If I'm being truly honest, I am fearful of how fast my symptoms have changed. It almost makes me second guess myself - perhaps some of this is in my head. Here are my symptoms and timing...
Head pain - the last 4 years, frequency increasing 20x in the last 5-7 months
Fatigue & Fog- the last year, intensity increasing 10x in the last 3 months
Hand and Arm numbness, as well as feeling as though my breathe is not sufficient- the last 10 days, literally seems to increasing daily
I know these symptoms are very few in comparison to so many. From my one MRI it doesn't appear that I have a syrinx, and my tonsils measure at 15mm with significant CSF blockage. I've messaged my doctor about the newest symptoms and she said it doesn't change my "status."
My surgery is scheduled for 9/25 by my choice. They had a few dates earlier but that worked best for my family and my work schedule.
So I guess I'm wondering if the rapid changes are a terrible thing, should I move my surgery up, or I just a worried mess (well, yes I am) and these are in my head.
Abby - I hadn't thought about anxiety = effecting breathing. What I feel is similar to what I felt when I returned to work after my son was born and I dealt with some PPD/PPA. Thanks for your comments!
So sorry that you’re dealing with all those things. I don’t know if it’s typical for others to have an increasing amount of symptoms, however I can tell you that you are not alone. I had surgery 4 years ago and all of a sudden I’m having all these different symptoms as well. I went through the same feeling of “oh it may just be in my head” and I would even not tell my doctor some things just so I wouldn’t sound crazy. One thing I can suggest with the breathing issue is to rule out any kind of acid reflux issues. I saw a doctor for that same feeling of not getting adequate breath and even though I thought he was crazy for thinking acid reflux, I took some Over the counter medication for it and BAM, it worked! At least in my case it did. But anxiety could be a factor too. I didn’t know this until recently but it sounds like the reflux is common for Chiarians. Hope you get some relief!
My only symptom that has been increasing rapidly it seems is my breathing too. I have a 7mm herniation, well as of 6 years ago, and I have a new MRI appt. next week to see if there has been any changes. I always had symptoms that would come and go but this one wont go away. It is definitely not anxiety,even though docs always tell me it is. It is a full breath that I am having the issues with. I never know what to do cause it's not lung related. When you have these breathing issues is it more prominent when you lay down? I am just curious, cause for me it happens in day sometimes, even after I might walk or exercise, but more prominent when I am sleeping. Just curious cause I only found a couple of people who are having this symptom. I do have fatigue and fog too. Those come and go, never a constant one. I was always told by dr's I did not need surgery and to just monitor. I have no clue what is going on but hate that my breathing is compromised. Going to bed is a nightmare instead of relaxing at the end of a stressful day.
I guess I would ask your doctor to see if he feels that moving your date up is really a better idea. He would probably monitor to see if that would be necessary. That's how it usually ran for me. Just keep your doctor posted. Hopefully they do not increase any more than they have. I don't even know why or how that would happen. I was always told that I would live with what I have and I would be fine. Now, I beg to differ. lol
Please keep us posted on how you are coming along. Hope you are having a better day today and Good luck through all the days ahead. We are always here for you :)
I feel like I’m in the same boat. Less than a week since my first MRI, but it seems like things are progressing unbelievably rapidly. I’m also wondering if some of this could be psychosomatic or anxiety related.
I would say sometimes if you panic about it, it could make them feel worse. I've learned to try not to stress when I get them because it does make you feel worse. My doctors first told me as long as I am talking to people with symptoms, I am going to cause my own symptoms that have nothing to do with Chiari. Well, they clearly have a lot to learn about our condition. lol Are you newly diagnosed and what are your symptoms?
I have a question about your breathing..Did you have issues when you slept and just lying down. That's how a lot of my issues are. All lung and heart functions are fine. This seems to be my only symptom I am having lately. Taking full complete breaths are a struggle sometimes and I have to fake a yawn to do so sometimes. Your input would really help me.
It’s always up to the patient and if you feel you are tolerating your symptoms,you know better than anyone what’s going on in your body.I had chiari for 28 years so I guess if you feel the pain is not to much to bare then waiting probably won’t matter.You are in charge of what ever happens as far as scheduling now or later.
Yeah, I have been using pillows to sleep a bit upright. Mine just comes and goes. It's never constant. It happened like 7 years ago for a few weeks then went away til like last year and has been more often in the past year. Stress makes it worse. It seems like some things trigger it. I have to fake a yawn to get a full breath. So frustrating. Sometimes I would feel like I was going to pass out from trying to get that full breath and then my chest feels sore from the straining. So weird. I hope I never need surgery for it. Scares me to death! I'm glad it has helped you and you have your normal breathing back again. Must be such a relief. I am hoping to get the proper testing done for my CSF. I just need the right doctor.
I live in Newport News VA. What scares me is the fact that I am so sensitive to narcotics like I get palpitations and I am afraid of being under anesthesia and not waking up and having a bad reaction to meds. Also complications after surgery. I just feel like, with my luck, something else is bound to happen to me. lol I just pray that this too shall pass. I would love to see Dr. Rosner if all does not go well with this Dr. I am going to see in two weeks. If he does not want to order the proper tests then I am going to have to resort to someone out of State. I am so tired of going from Dr to Dr. I am sure so many people feel my pain. lol. I just can't take this breathing issue anymore. Can I look up his info or can you send me some?
I had some breathing problems before surgery and now they are worse at times,mine are worse when my eyes get dim upon standing,I’m scheduled for an appointment with my NS Sept.9 hopefully he’ll have some answers,even though my chiari surgery has been a success I feel there has to be another problem.I am having headaches still but not as bad as before except when there’s those that start at the base of my head and go around to my left eye and are more painful.
I have had 2 ER trips. I had decompression last June , possible seizure. I knew something was not right when I tried to go back to work and stated seeing "floaties". I quit citing health reasons and went downhill from there. I walk with a cane now and have an Aspen Cervical collar and braces on both knees. I was diagnosed with EDS and dysautonomia a few months ago. The ER docs. said I was a psych , med seeking patient but I kept on pushing.
I have his number and there is lots of things online about him,some not so good,but believe me it is not all true.I have had a successful decompression with him and I am very impressed with his expertise he is one of the first chiari specialist, and one of the best.It might be worth the trip,my opinion is favorable ,others say the same,they come from all over to see him.Without his knowledge I would still be stuck where I’ d been for so many yrs.he is a God send.The NSs are of little help in this area and that is the norm. for most places.He is Dr, Michael Rosner,please let me know if you come here.There’s no way to know except to try,he will give you the facts so you can make an informed decision.
Thank you Lynn, I will keep his info handy. I had a normal CSF flow so now I just have to find out why my breathing is an issue. On to the next doc. Going to try the sleep study. Still plugging along. Hopefully some day with some answers. lol
Lynn Messer said:
Lidia, I have his number and there is lots of things online about him,some not so good,but believe me it is not all true.I have had a successful decompression with him and I am very impressed with his expertise he is one of the first chiari specialist, and one of the best.It might be worth the trip,my opinion is favorable ,others say the same,they come from all over to see him.Without his knowledge I would still be stuck where I' d been for so many yrs.he is a God send.The NSs are of little help in this area and that is the norm. for most places.He is Dr, Michael Rosner,please let me know if you come here.There's no way to know except to try,he will give you the facts so you can make an informed decision.