Sorry I haven't been on much. Trying to find a routine working almost fulltime and balancing the family. It's been tough. I have a question about a symptom I've had for a while but it was bad all day today. I don't know if anyone has this too or what it might mean. It's the same thing you get when you yawn, my eyes tighten up and my head and ears feel like they're kind of plugging up, except I'm not yawning and this happens uncontrollably and multiple times throughout the day sometimes in a row over and over and over again. I can't figure it out and it's aggravating. It does seem to correlate with bad headaches though. I got a killer of a headache today. I worked all day through it and survived. I'm home now. I did good at wok. No one seemed to realize how much pain I was in. I played it off good and barely drove myself home then collapsed when I got in the door. I took an imitrex and rested, had some pizza and now feel just a little bit better. I am exhausted though. So let me know if any of you have had or do have this similar "yawning" feeling without the yawn.
ya know b4 my surgery i had that all the time and i sware i could even feel fluid in my ears, like they are wet- but no one would listen since surgery it doesnt happen as often but i do still have it on occasion...notice it more when air pressure lingers at a # for too long.
I am sorry you are having these problems...i can relate to the ear fullness and as far as the eyes...I get pressure behind the eyes..not like the way you are describing yours...did you call your doc???
Jennifer, I know it's tough to balance a family, work, and an illness, especially one like Chiari which has so many symptoms connected with it. So, hopefully, you have someone to help out once in awhile so you can escape and have some Jennifer time to refresh a bit....even if it's just talking a bubble bath and reading a book...that's so important.
I know what you mean about the pressure. I don't recall ever feeling like I was yawning, just a lot of pressure in my head. Before my surgery, especially, I always had a lot of pressure in my head and ears and my sinuses were always almost l00 percent stopped up. I still have some trouble with it, especially my ears and sinuses feeling like they are stopped up....I've gotten used to mostly breathing through my mouth, but it makes me feel a little claustrophobic.....I know that probably sounds a little crazy! It always seems to help me if I put some pressure on the outside of my ears with my fingers, like I do when my ears get stopped up when I'm flying. I just quickly push in and out a few times and it seems to relieve some of the pressure. Since the surgery, I will occasionally have a short period of time where I will feel almost like my head is in a vice and my ears will feel stopped up at the same time. It doesn't last very long, but it's weird.
I used to always be exhausted too; but found out that a lot of it was caused by an underactive thyroid and anemia. It used to take me forever to get ready to go to work because I had to keep stopping to rest. Once I got on the medication for the thryoid and started taking iron pills, there has been a big improvement in my energy....it's worth asking your doctor about. It wasn't until I insisted to my doctor that he "had" to find out whey I so tired, that I got any relief, even though I had been telling him I was tired for years. Also, my skin was getting dry and my very thick hair was breaking off and getting thinner. I've heard a lot of chiarians say they have thryoid problems. Since my surgery I've started walking and that really has helped with getting my energy level up a bit. My doctor told me that I was to walk a mile a day when I got out of the hospital. I didn't really start though until about two months post opt. I told him at the time that "he had to be kidding", that I would have to work up to that.. ....but he wasn't! I also do water therapy (just exercise in the therapy pool now without a therapist) twice a week. If I don't do both of those things, I can tell a big difference in my energy level. I still get tired easily, but, since I'm retired, I just stop when I need to and rest. Everyone doesn't have that luxury I know, especially working moms, I know; I used to be one. If I was still working, I don't know if I could have worked in the exercise out of the home like I do now.....there are so many demands on a working mother's time. Just mentioning it because it has made such a big, big difference for me. I know I'm blessed and I thank God every day that I don't get the awful headaches anymore....I used to have to abandon my grocery cart or my car on the highway and get to the ER...I've been there, done that...so, I feel so bad for everyone who does.
Ladies, thank you all so much for all your wonderful support and advice. I knew I could count on you all. I am actually heading to in for a full blood workup Thursday morning and my annual physical exam next week with my primary doctor. He will be checking my thyroid. As far as my neurosurgeon I met with him last week and won't see him again for 6 months unless I need to. With this weird pressure feeling aside, I've been doing well overall. The increase in the topomax that the neurologist gave me a few weeks ago has helped. The really bad headeaches are less often.. He prescribed the imitrex too and taking it last night for the first time, I must say, I was impressed that it did work. I was taking hydrocodones throughout the day and they didn't touch the pain. So I need to just figure out what med to take for the pain next time. I had today off which was good. I feel much better and took some time to spend with the kids. I brought my daughter Monica out for some Mommy and me time and it was nice.
One of the other big events happening that I wanted to let you all know about is the update on my husbands condition. I'm not sure if I actually ever talked about him before or not. He hurt his neck last year and they told him he had stenosis and the doctors did the run around on him, treated him terrible, scared the crap out of him telling him he'd never work again, and they'd remove 4 discs and then fuse his neck. they said he had the neck of a 67 year old and he's only 40. The first doc said he couldn't do anything for him, the second doc is the one that gave us all this scary info, then said he had to go immediately for another opinion and that he wouldn't do the surgery himself but should go to the main hospital. Took him 3 months to get in. Who does he see? The fist doc who said he couldn't do anything for him. WASTE OF TIME!!! By then he had seen a chiropractor who had helped him a great deal. He told John it wasn't stenosis and just when he started to manipulate his neck, John decided he didn't want to go anymore and was feeling much better. He let himself recover a full 6 months before returning to work this past fall. He did ok, but in January things turned around. Well, needless to say he had an MRI done and this past week I took him to MY neurosurgeon. Finally someone who knows what they are talking about sat down with us and told it to us straight in language we could understand and was very straightforward on how serious it was. He explained it all in detail for us. John's lower back is sufering from degenerative disc disease and arthiritis, he'll need physical therapy and meds. He'll have to live with that. His neck, however, is really bad. He has four bulging discs. Two of them are so bad that they are flattening his spinal cord and there is possible spinal cord damage. There is also nerve root compression at those same levels on th left side. He will need surgery. We knew this but when you her it from the horse's mouth it hits you hard. The harder news was learning how serious it was. The flattening of the cord area shows T2 signal intensity which means there could be spinal cord damage, bleeding or other damaging factors. He told us it's very dangerous, and that if John were to fall or jerk his neck, get in a car accident and get whiplash, he could be paralyzed, permanently from the neck down. This really hit home. I was shocked to see my husband start to cry in front of the doctor. So next week is the EMG test and then in May we go back to see Dr. Scialabba to discuss surgery if not sooner.
So, can we say STRESS??? I'm ok. Hey, I know stress. That's my life. One BIG ongoing ball of stress. I'll be alright. I can get through anything. My baby girl survived cancer and she gets her spirit from me. ;)
Like the commercial says "Life comes at your hard". My dad, who was a preacher, always told me that God would never give me more than I can handle. But.....he sure does challenge us, doesn't he? And, it is what is is. It sounds as though you keep a good attitude in spite of it all, and I think that is so important. We can't always change what happens to us; all we have control of is how we deal with it. You have a lot on your plate I know; it is so frustrating, but so important, to find the proper care. We should be able to trust the advice that medical people give us, but we have to go with our own instincts about our care too......and never give up hope that there is an answer out there to help. I've been told that nothing can be done for my degenerative disk disease and my three slipped disks in my lower back because my spine is collapsing, but not giving up yet....I have an appointment the end of this month with my doctor who did the Chiari surgery. He did that when other doctors refused to touch me, so I'm hopeful. I know from experience that your husband has to be in a lot of pain. Added to that is your pain from Chiari. So I know it's tough. It's good that you have a stick-to-it approach to finding some help - there may be treatments out there that we or, yes, even your doctors don't know about yet.....or they be on the horizon. Having surgery of any kind IS a scary prospect, but try to concentrate on how wonderful afterwards it will be to be free of pain and the worry. Focusing on that and believing it would happen, at least for me, took away a lot of the fear. Try to stay positive and expect the best result from the surgery.....you and your husband have each other and your family.....that goes a long ways!
In 2008, I thought everything that could go wrong did and my granddaughter even asked if I had ticked off somebody upstairs. It seemed like it would never end. But two years later, I've survived three brain aneurysm surgeries, Chiari/Basilar invagination surgery, a very traumatic three car collision, and a broken foot one week after the aneurysm surgery. And......while it seemed and was tough for about two years....with time it HAS gotten better. The human spirit, just like children, is very resilient and we CAN get through more than we ever thought we could. In other words, we usually do what we have to do........and you can do it too. I think God gave women and especially mothers a lot of emotional strength to deal with stress because we not only have to take care of ourselves and oftentimes work outside the home, we are usually the primary caregiver for the family too.....hang in there and remember to take care of yourself too.....we're routing for you.