Please read my post titled "So many questions" I posted a moment ago. I reallly need a man who has dealt with Chiari to let us know if this related.
I'm a 55 yr-old man that was diagnosed with CM1 back in January. My symptoms started with dizziness as well, but I have have been on Meclizine and Valium since then, and the dizziness has faded but several other symptoms have now taken prominence, primarily, hyper-sensitivity to light and sounds that occur daily and hit me intermittently. I also have what I would describe as "brain fog" (laboring over minor, uncomplicated decision making; example - Do I pay the $11.72 bill for groceries with a $20 bill,a $10 and a $5, or a $10 and three $1 bills?),...which is really weird, and often embarrassing.
If you're wanting a man's perspective about the intimacy issue,...what I will tell you ius that after our last encounter, I had a nasty head-ache right at the base of the back of the neck, and I felt wiped out for the rest of the day. I'm assuming that is what you were asking about, but if not,...ask away.
Hey Brad, I see that you're not exactly a teenager & older like us! lol My husband is 56 & was just Dxd with CM1. It seems like after he had some spinal leaks these weird symptoms started happening. We went to the hospital with a horrible head ache thinking he was having a spinal fluid leak again. He's had 11 back surgeries where they go in the front & next day go in the back to work on both sides of the spine & got new disc but never seemed to stay together. After MRI, CT & mylogram , instead of telling us they are going to fix his back, the Dr said he needed brain surgery for Chiari Malformation! WOW! We weren't expecting that! After we got home it seems like he got every symptom on the Chiari list for about a week or 2 then started easing up. He had the horrible headache, ringing in ears, clumsy coordination like he was walking on a jon boat on a lake, pain between shoulder blades & neck, sensitivity to light, & seeing weird shapes & floaters in his eyes. There were more but those I can think of at the top of my head How do you think you got Chiari? The Dr told him this as he was discharging us from hospital in Feb. He wanted test before we come to his office. Cine Flow MRI & EMG so we are finally going to see him this monday May 21st. We don't know what to do but my husband isn't anxious to get the back of his skull cut off! Do they put it back ever?? Any info is appreciated.. Jeri Benjamin
First off, my apologies on the delay getting back to you. I have not had the decompression surgery and frankly, praying that things don't get that far with this. I'm in very much of a "wait and see" phase of things with a long series of tests ahead over the next two weeks : a table tilt test for my cardiologist (which requires more blood work and a new chest x-ray that I need to schedule prior), a bronchoscopy and lung biopsy (have had sever coughing for over a month that they thought was bronchitis at first, then upgraded to walking pneumonia), and a CINE -MRI of my brain in Philly. I've also applied to be seen at the Chiari Institute in Great Neck, NY, but I need to send them a CD of my brain MRI before they will schedule when I should go there. I have no idea yet if any or all of these problems are related to my CM or not as of yet. By far, my worst symptoms right now are :
1. Hyper-sensitivity to bright lights (haven't driven at night in two months now due to bright headlights and even have to wear sunglasses in church when they use they high tech lighting system with the worship songs).
2. Hyper-sensitivity to sound, which just kicks in at odd-ball times, but again, at church I have to now wear earplugs during the worship music, and I was raised on rock and roll (seen Aerosmith in concert 7 times).
and finally...
3. For lack of a better term, I would describe as "brain fog", which really seems to hit whenever I go shopping these days. I just get overwhelmed by all the colors, products, choices, etc. and my mind just gets over-loaded.
The light and sound issues are getting so bad, that even at home, when we watch a movie, I have a HUGE problem with movie TRAILERS (all the quick cuts, bright explosions, loud sounds, etc,). The irony is,..I TEACH Film Classes!!!! I so badly want to go see The Avengers on 3D IMAX, but seriously don't think I'd make it 5 minutes into the movie. Very depressing.
Oh,...one more symptom,.... intimacy with my wife has become a real issue too. Things just don't seem to happen like they used to. Been very inactive for the past three months, Eniuff said?
Jeri said:
Hey Brad, I see that you're not exactly a teenager & older like us! lol My husband is 56 & was just Dxd with CM1. It seems like after he had some spinal leaks these weird symptoms started happening. We went to the hospital with a horrible head ache thinking he was having a spinal fluid leak again. He's had 11 back surgeries where they go in the front & next day go in the back to work on both sides of the spine & got new disc but never seemed to stay together. After MRI, CT & mylogram , instead of telling us they are going to fix his back, the Dr said he needed brain surgery for Chiari Malformation! WOW! We weren't expecting that! After we got home it seems like he got every symptom on the Chiari list for about a week or 2 then started easing up. He had the horrible headache, ringing in ears, clumsy coordination like he was walking on a jon boat on a lake, pain between shoulder blades & neck, sensitivity to light, & seeing weird shapes & floaters in his eyes. There were more but those I can think of at the top of my head How do you think you got Chiari? The Dr told him this as he was discharging us from hospital in Feb. He wanted test before we come to his office. Cine Flow MRI & EMG so we are finally going to see him this monday May 21st. We don't know what to do but my husband isn't anxious to get the back of his skull cut off! Do they put it back ever?? Any info is appreciated.. Jeri Benjamin
I'm 46, I was Diagnosed last September had my surgery about 3 weeks later it primary for my horrendous headaches that came on somewhat suddenly, I did have headaches for a number of years but not like I did the 3 or 4 months before surgery. It wasn't until my diagnosis that all the other symptoms I had made sense. Unfortunately for me they are even more pronounced for me after surgery than before.
As far as the "intimacy" issue I'm in the same boat as you, but was also recent diagnosed with VERY low testosterone. Even after 3 months of testosterone therapy it still too, I'm seeing my endocrinologist tomorrow to see what to do next. I've read where chiari can mess up many of your chemical levels (thyroid etc) so you may want to get them checked out.
Thank you guys. It's been difficult pill for my husband to swallow. I think he has been dealing with it a little better the past couple of weeks. He has had some major set backs though, the headache right after being "intimate" has been overwhelming. I think we're figuring it out... thanks for the links too. I'll do some reading and pass it along. Again, appreciate the responses. :) Bless ya'll :)