Husband case is not as severe as most, but it does seem to be progressing at a rapid rate. He went to the doc to begin with back in Aug 2011 because he was having issues w/balance and dizziness. The MD ran all the regular tests and told him to start monitoring his blood pressure (he is the picture of the health. tall, trim, and a regular runner.) September and October brought on more dizziness and an increase in headches so he went to see an ENT, they did several tests and couldn't find anything. As a last ditch effort the ENT sent him in for an MRI at the end of December. 3 Days later we were sitting in a neurosurgeons office getting info and scheduling more MRIs. At the moment, he is not recommended for surgery. CF is 75% blocked on the right side of his brain and the he doesn't have a syrinx. The neurosurgeon recommended yearly MRIs and calling if we thought he was getting worse. We are keeping a journal of his symptoms. He is not one to seek attention or "milk" a situation, so when he tells me something, I know it's serious. The list has grown a lot lately. The dizziness is constant, it never goes away. The vertigo has been worse lately, I've had to drive him to and from work. He's been having nose bleeds. He can't run anymore... and now, I realize I just got here, I have no idea if this is proper etiquette, but the past few weeks... ever time we have been intimate, he has been completely inconpacitated the next day. I need some answers. My husband is the type of guy, he won't go to the doctor unless I force him. I don't want to be looking for Chiari under every bush, but I also want to help him make good judgment decisions. We haven't seen or talked to the neurosurgeon since Jan. My husband has an excellent job and health benefits, he feels like doctor's office's sometimes take advantage and have him come in for tests when they wouldn't normally run them on someone else... ahhh, I don't know what to do. From your experience(s), is his condition getting worse. Do we need to prepare for the fact that he may have to have a decompression surgery soon? Do these new symptoms sound Chiari related, or am I just overreacting???
Graves5
Im sorry that yall are dealing with this and you are not overreacting. I feel that you need to find a specialist in Chiari. If yall are being told that he is 75% blocked, thats pretty bad. A lot of us arent blocked that much. Please, do yourself a favor and find a specialist in this. Someone on here might be able to help you find one in your area. Im in Texas but go to Dr. Oro in Colorado. Research him and look at others.
Best of luck to yall!!
We've heard of Dr. Or. We saw NS, Dr. Capeocelli in Ft Smith, Ar. he said that he bases his recomendation for surgery on the person's symptoms and quality of life. He said that the decompression surgery is very invasive and not always a cure that putting it off until it was absolutely necessary would be best.
I don't know yet if if I have any blockage or not because I haven't had the Cine-MRI,...but I have to agree, 75% blockage sounds pretty severe to me. Plus the fact that he's so bad off that he can't drive!?!? Yikes! What meds is he on for this?
I dont know of him but I would def try someone else. It sounds as if it is really affecting your husbands quality of life. Plus putting it off and cause more problems then not. Please consult another dr. You can even send in your MRI to Dr Oro and see what he says.
My neurosurgeon told me that it was up to me if I wanted the surgery or not (he recommended it, but in the end it was all my decision). He was most concerned with my quality of life. I didn't have a life by the time my syptoms progressed for a few years. I was always laying down (etiher on the couch or in bed). I didn't have any nose bleeds but I did have the constant dizziness and vertigo. It was awful. Whenever I would try to go to sleep I had the bed spins (like I was drunk, but I don't drink). But the worst for me was the constant head pain, so I opted for the surgery (Nov. 28 2011) and so far so good for me. Good luck!
Crystal
I agree with the others…I think he should definitely get a 2nd opinion with a NS that specializes in Chiari, especially if his symptoms are getting worse. Like Beeba said, we have lists of patient recommended doctos that you can access on our resources page. You may need to travel out of your area to see an experienced NS, but from what I’ve heard, it’s well worth it. I’m actually up in Seattle, WA (I live in Vancouver, WA) right now…I have an appt with Dr. Ellenbogen, who is a Chiari specialist, tomorrow.
I he is uncomfortable and frustrated because of the dizziness and episodes of vertigo but the headaches are not daily so he is not in constant pain. The way we understood Dr. Capocelli: his symptoms are mild compared to most and living with them was better than the risks of surgery at this point. I guess, I just needed to be reassured that the new symptoms he was experiencing were most likely Chiari related. That encouraging (aka forcing) him to call the doctor was the right thing to do. Ya'll have helped me so much. thank you. I think I will get his scans and have them sent to Dr. Or.
Someone asked what meds he is taking. He is not taking anything. He won't. He hates medication, he won't even take allergy meds. Dr Capocelli suggested cymbalta in the beginning, but he felt like that was a cop out drug and he didn't want to take meds that would mess w/his phyche when he unless it was an absolute fix. This past week when the vertigo was so debilitating I forced him to take some phenergan. Any suggestions?
i hate to be the barrer of bad news but you do realize there are NO cures for chiari?
decompression surgery is more or less a bandaid, for some people it works and for others it doesnt there are no guarentees,....
if your husband wants absolute proof on everything he's not going to get it...not even on the medications...each person is different and @ responds different he has to try different things that are suggested and see what works best for him.
Defidently need a 2nd opinion, and yes all he is going through sure sounds like the list of chiari symptoms.
Hi...
So sorry that your husband is going through all of this and you are as well but in a different manner..the 75% blockage to me, and I certainly am no doctor..is alarming...I have to agree with all other other folks who have replied b4 me...get another opinion.
Also, be sure to keep all reports , MRI's ect.for your records.
let us know whats going on...
peace,
lori
You have been given some good advice. Your husband has most of the symptoms I had last year. Chiari stopped me in my tracks last year. I went from an active working mother of 4 to having someone drive me around, napping everyday and not being able to think. From what you said, his quality of life has diminished. I second Dr Oro. I'm in TX and traveled to CO to him. I opted for surgery because I wanted my life back. I feel better now than I have in years.
Please seek out a 2nd opinion.
Good Luck!
Diana
Again everyone, thank you. The prospect of surgery scares us to death. I've read about so many people that feel worse or the same after the surgery. It seems like a lot to go through for a "band-aid". I don't think he is anywhere near misreable enough to even consider it yet. My biggest concern is that these new symptoms indicate his condition is worsening. What are the risks of putting it off? We understood the neuro doc that we would "know" when it was time... I mean, it's usually a slow progression, right? It's not like he'll wake up one day and ???
It sounds to me like he is at the point of needing surgery. I am 5 weeks post op and it was the best decision I have ever made. I have my life back!!! As scary as the surgery sounds, it really wasn't that bad. Yes I was scared to death, but the unknown is always scarier than the actual procedure. I would say see a different doctor and just go for the surgery. As for it just being a "band-aid" I would say it is a damn good band-aid! I would have it done all over again if I had to. My quality of life has improved 100%
Yes I literally woke up one morning and my left side was extremely weak. Symptoms that are debilitating can come on over night. You never know what symptom he is going to wake up next that leaves him unable to "live" I would get the second opinion done ASAP!
There are horror stories with any procedure ever performed. I had a mole removed from my nose and it was horrible. I hate how it looks and I wish I had never had it done. You just have to be willing to not have a perfect outcome. With my chiari I was willing and it turned out better than I ever imagined it would.
I agree with everyone else, you aren't overreacting and a 2nd opinion is a wonderful idea. However, maybe to ease your mind somewhat ...I live in Arkansas and I have heard from other CMs that live here that Dr. Capeocelli is wonderful. If traveling to CO for Dr. Oro is not possible, I know there is a NS in Little Rock that are great with Chiari, Dr. Burson. Also, I have put a link below to a list that has been compiled by people with CM of good doctors. Hope this is helpful.
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562
Thank you, Thank you, Thank YOU!
I think you just answer the question to my worst fear... that waiting will make it worse. My husband I are totally opposites in the way we approach things in life. I'm the reactor, "let's do something, make something happen" kind of person. He is the "wait and see, or let the moment totally pass" kind of person. Because this is "his" health issue, I've tried not to press him to hard, but I guess that's why God saw us fit for each other, I need to balance him out, and get him moving. Thank you again.
LISTEN, I HAVE OPTED NOT TO HAVE THE DECOMPRESSION SURGERY, IT IS SCARY AND IN MY CASE THE SYMPTOMS ARE BEARABLE. I COMPLETELY AGREE WITH YOU, THIS SURGERY IS SERIOUS, IT'S NEAR SOME MAJOR STUFF BACK THERE INCLUDING THE BRAIN! I HAVE A CONSTANT WHIRLING, NECK AND SHOULDER PAIN ARE ALWAYS WITH ME, I RARELY DRIVE DUE TO SEVERE BOUTS/SPELLS OF DIZZINESS, I EXPERIENCE NUMBNESS IN MY LEGS IF I AM ON THEM FOR VERY LONG, I AM CAREFUL NOT TO CATCH A COLD BECAUSE THAT DEEP COUGH SEEMS LIKE IT'S GONNA KILL ME SO EVEN WITH ALL OF THIS AND THE FACT THAT I CAN NO LONGER WORK, DRIVE, WALK FOR LONG I STILL SAID NO TO THE SURGERY, IT'S REALLY UP TO YOUR HUBBY BUT MY QUESTION FOR THE NS, AFTER HE SAYS "YOU WOULD BE A GREAT CANDIDATE FOR THE SURGERY WITH MAYBE A 75% SUCCESS RATE, I ASKED HIM...IS THIS CHIARI LIFE THREATENING? HIS REPLY WAS NO... GOOD ENOUGH FOR ME.... :) SIDE NOTE: I HAVE HAD THIS FOR A LONG TIME NOW AND IN THE BEGINNING INTIMACY WAS DIFFICULT AND TOOK TIME TO RE-ADJUST...BE PATIENT AND TRY A LIGHTER, SOFTER APPROACH ;)
I called the NS office today and left a message with the nurse. I should hear something from them tomorrow. I guess we will go from there. He had a really bad day last week with a severe headache and vertigo. He told me today that he hasn't been the same since... before when he had the severe headache/vertiog spells he would feel somewhat better after a few days. This time he hasn't. I didn't tell him I was calling the NS today, I just did it. I told him this afternoon when he got home from work... he didn't resist. That scares me more than anything. It's much worse than I even realized if he isn't putting up a fight. I guess this will be Dr. Capocelli's (NS) first test in our decision to use him or not... I'll let you know what the nurse recommends when she returns my call.