Author |
Topic: rhinoplasty balloons (Read 7925 times) |
|
anditron
New Board Newbie
jack the sound barrier bring the noise
Gender: 
Posts: 8
|
 |
rhinoplasty balloons
« on: May 17th, 2006, 11:31pm » |
 Quote  Modify
|
I'm new here as you can see by the newbie label under my name. (though I've been reading around on and off for a bit.) I've had clusters for 11 years now, usually right side. they suck we all know that, on to the reason I'm posting.
I suffer severe severe sinus problems, my doctor of course has informed me that it's a symptom of my clusters. I show most of the sinus symptoms during/just prior to a bout/cycle, but my eyes water all the time. It's ridiculous, they just won't stop. Guaranteed, if I walk out my door, my eyes will start streaming tears. Not fun, means I don't really bother to put on make-up as it looks ridiculous by the time I get where I'm going. This is especially annoying for me because I'm an avid cyclist and it makes it difficult to pay attention to the road when I feel like I'm literally crying a river.
Tonight on the news I discovered that my medical group are experimenting with Rhinoplasty balloons to alleviate sinus problems. The idea of this has me intrigued. I've often wondered if sinus surgery could help alleviate these symptoms. I realize of course this won't alleviate the headaches and they aren't going to go away but if I could maybe lightly tear rather than full on stream when biking I almost think it's worth it.
I'm wondering if anyone here has any experience with sinus surgery. Clusters are horrible enough, so any little relief I can get on any front would help!
Thanks!
anditron
|
| « Last Edit: May 17th, 2006, 11:32pm by anditron » |
 IP Logged |
jack the sound barrier
bring the noise
|
|
|
BobG
New Board Hall of Famer
Gender: 
Posts: 5747
|
|
Re: rhinoplasty balloons
« Reply #1 on: May 18th, 2006, 1:47am » |
Quote Modify
|
Welcome to the board, anditron.
Surgery of any kind for cluster relief is something many have tried and almost all have said it is only a temporary fix. And many times a lifetime of more pain and a numb face.
Clusters are not a sinus problem even though the nose runs during an attack and the eye (singular) tears.
You say both eyes tear when you go out in the sun. That, to me and I'm not a doctor, sounds more like an allergy.
Please click the 'cluster quiz' button on the left side of you screen, take the quiz and let us know the results.
Sure hope you don't have clusters.
|
|
IP Logged |
Stay stressed. Never relax. Never sleep. Ever.
|
|
|
Beastfodder
New Board Old Timer
O2 and clusterbusters - naturally
Gender:
Posts: 294
|
|
Re: rhinoplasty balloons
« Reply #2 on: May 18th, 2006, 7:40am » |
Quote Modify
|
Anditron
Sinus surgery treats the effect not the cause. In my years of misdiagnosis I've rhinoplasty and septoplasty they didn't do a damn thing.
All you'd do is clear the tubes to help noses run even more freely.
CH surgery - cutting trigeminal nerves or putting electrodes in the head - looked at the odds/ reports and feedback and won't go there either.
No point when O2 and clusterbusters work so well
|
|
IP Logged |
O2 and clusterbusters - naturally
|
|
|
anditron
New Board Newbie
jack the sound barrier bring the noise
Gender:
Posts: 8
|
|
Re: rhinoplasty balloons
« Reply #3 on: May 18th, 2006, 12:06pm » |
Quote Modify
|
Thanks for the welcome BobG and Beastfodder
I realize there is no surgery for clusters and that my question regarding the balloon is looking at treating a symptom. I'm not really looking into any surgeries, I just caught this on the news and was curious as to whether people have had it give any relief of the symptoms or whether it actually just freed up everything to run more freely.
Sadly, BobG, I do have clusters, I've had them since I was 21 and experienced some severe head trauma which we believe helped to start them. When I have a chance, I'll write up my story and post it elsewhere in order to stay on topic in this post. But for the moment, it's important for me to note I spent the last 11 years not knowing anything about treatments, symptoms or triggers. My doctor diagnosed me, attempted 2 different headache meds and that was it. Of course, I wasn't really in a place in my life to want to know, I wanted to forget a lot of things that had happened then, so in my avoidance I would quietly duck away from public whenever I was in pain. If it makes you feel better, I took the quiz and was correct on every question.
Anyway, my headaches are almost always on the right side, however, I do on occasion get them on the left. It's fun when you can distinctly place 4 different headaches occurring in your skull at once! (j/k) I haven't figured out the pattern on the left though I know when to expect the right ones, but that's because the left ones are really not that often. You mention how clusters are not sinus problems. This made me chuckle because since my diagnosis, but especially in the last 9 years I noticed my sinus problems were getting worse. I didn't know they were at all related until this year when I finally in desperation went to my doctor to really address them.
It is both frustrating and somewhat of a relief for me now to know as much as I do since seeing a Dr. and reading through a few different sites on clusters. For years I have been given allergy medicines even though I had told them I had clusters. In their defense, I would always just see whichever Dr. was available and I'd always passed the clusters off as this thing no one knows about or can do anything about. But they never really asked about it either and thus never seemed to really care about the word. Maybe they thought another Dr. was treating them? Still, I'm glad I finally went in to specifically address this problem because I've learned a lot both from them and from my searching around the web. And when I look back through all of my life a lot of things make sense.
I do agree though that it does seem odd that my eyes water so often. Realistically I think there is probably an allergy too. I just know that my eyes water so much more often when in cycle/bout (I'm still getting used to terminology) than not.
In other treatments I've used, I'd say the 2 things that have really helped is red bull and cycling. I discovered the red bull secret in 2000 during grad school. Energy drinks were just really starting to hit. Being a caffeine addict I'd started drinking it and noticed I wasn't getting any type of headache as often. I also noticed fewer hangovers if I made a red bull vodka my last drink of the night. (for a professional club goer, this is very important, heh.) I figured it was the taurine, so when I noticed a shadow I decided to slam a cold one and was elated to see it helped. It didn't stop them, but it did keep them less intense. Since then I drink a red bull or now, monster every day and slam one if I sense a bout coming on.
I started biking a bit over a year ago and was cheerfully cycle free for 6 months! Then I stopped due to 0 degrees and whammo, January I was hit with probably the worst bout I can recall. It made me go buy an indoor trainer for my bike because I'll take the exercise over the pain anyday.
|
|
IP Logged |
jack the sound barrier
bring the noise
|
|
|
anditron
New Board Newbie
jack the sound barrier bring the noise
Gender:
Posts: 8
|
|
Re: rhinoplasty balloons
« Reply #4 on: May 18th, 2006, 12:10pm » |
Quote Modify
|
on May 18th, 2006, 7:40am, Beastfodder wrote:
No point when O2 and clusterbusters work so well |
|
You'll think I'm crazy but I refuse to do the CO2. Though my doctor has suggested it a couple of times. I just can't get my head around needing a tank. Also shots. I guess even though I've suffered a long time and would like relief I'm so stubborn and leary of side effects that I am taking the "dip a toe into the water" approach to treatment.
I do want to know what clusterbusters are though. I don't recall coming across this term.
|
| « Last Edit: May 18th, 2006, 12:11pm by anditron » |
IP Logged |
jack the sound barrier
bring the noise
|
|
|
seasonalboomer
CH.com Alumnus
New Board Hall of Famer
If I think hard enough maybe it'll go away.....
Gender:
Posts: 2248
|
|
Re: rhinoplasty balloons
« Reply #5 on: May 18th, 2006, 12:32pm » |
Quote Modify
|
on May 18th, 2006, 12:10pm, anditron wrote:
You'll think I'm crazy but I refuse to do the CO2. Though my doctor has suggested it a couple of times. I just can't get my head around needing a tank. |
|
First, it is O2, not CO2. For Cluster sufferers who proclaim they will do anything to alleviate their suffering, not giving O2 a try (particularly if you have a physician that is will to give you a prescription for it) is either a.) a sign of laziness or, b.) a sign of vanity.
you don't "need" the tank all the time. You only use it for usually less than 10 minutes at a time and you can get one that hides away nicely in a closet when you are not using it. you can get small ones that you could hide in the trunk of your car when you are out. then when you are out and you get a CH you excuse yourself, strap on a mask for 10 minutes and then go back in and you are done with your CH -- often completely till your next usual hit.
don't diss O2 because you don't like the "idea" of it. It's absolutely one of the best tools we all have at our disposal. with no side effects.
scott
|
|
IP Logged |
-----------------------------------------------------
seasonal boomer
-----------------------------------------------------
|
|
|
Redd
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 6661
|
|
Re: rhinoplasty balloons
« Reply #6 on: May 18th, 2006, 12:47pm » |
Quote Modify
|
You know, this is the first time I've read about anyone refusing the safest possible form of relief there is out there for this hell. O2.
I can't get it, and would give my left arm, right leg (and my next born if need be) to have it.
That said, I sure hope you find relief, and PF days to you.
|
|
IP Logged |
I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
|
|
|
floridian
Guest
|
That 'new' rhinoplasty balloon technique has been used for decades by osteopathic doctors. Now it has been 'discovered' !!
Minimizing a deviated septum might be helpful if you have sleep apnea (and a large percent of cluster heads do). Also consider nasal irrigation. I like chromolyn for long term control of allergic sinuses, not sure that it helps with cluster related symptoms, but it does reduce histamine release.
http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Nasal%20Irri gation
|
|
IP Logged |
|
|
|
anditron
New Board Newbie
jack the sound barrier bring the noise
Gender:
Posts: 8
|
|
Re: rhinoplasty balloons
« Reply #8 on: May 18th, 2006, 1:32pm » |
Quote Modify
|
on May 18th, 2006, 12:32pm, seasonalboomer wrote:
First, it is O2, not CO2. For Cluster sufferers who proclaim they will do anything to alleviate their suffering, not giving O2 a try (particularly if you have a physician that is will to give you a prescription for it) is either a.) a sign of laziness or, b.) a sign of vanity.
you don't "need" the tank all the time. You only use it for usually less than 10 minutes at a time and you can get one that hides away nicely in a closet when you are not using it. you can get small ones that you could hide in the trunk of your car when you are out. then when you are out and you get a CH you excuse yourself, strap on a mask for 10 minutes and then go back in and you are done with your CH -- often completely till your next usual hit.
don't diss O2 because you don't like the "idea" of it. It's absolutely one of the best tools we all have at our disposal. with no side effects.
|
|
Sorry, I meant O2. It is neither vanity nor laziness. As I said, though I'm a long time sufferer, I only recently started looking at actually medically treating it. I am extremely cautious when it comes to any medical treatment. I've learned too well from the health of some people very close to me that just because a Dr. or other people with the same ailment say something is good, doesn't mean it's good for you. Never take blanket advice, always go into a medical treatment as aware and knowledgeable as possible. This means know your life, what you're able to do as well as knowing what the side effects of the proposed treatment. Then make the decision that is best for you and your life... otherwise bad things can happen.
There are a myriad of reasons why I don't see O2 as a solution as yet, and many of them are things you pointed out.
I have no car to keep a tank in. I take public transit or I bike. That's a 30-60 min trip each way depending on the method.
I work in a warehouse setting where 200 employees not to mention the other people wandering in and out. There is no quiet discreet place to store it during working hours when I often suffer them.
Yes my doctor suggested it, she also said she had no idea where or how I'd get any.
She also suggested shots but told me that if I go that route I'll likely have to call, have a script called in to a pharm, pick it up, come to the office and have it administered, then go on with my day. By the time I did all of that, the damn thing would be done.
Maybe that's incorrect, I don't know at this point and I'm her first cluster patient. We both have a lot to learn. And I chose to start first with the Imitrex and see how that goes.
Of course I want relief from the pain, but I've spent 11 years taking nothing so I'd rather start with something a bit more manageable in my daily life, and having a tank in not, at least not at this point in my life.
And as I said, I have found things that help significantly. It hasn't stopped them, nothing will. But it's accessible, minimizes the cluster hell and I can pick it up anywhere and anytime I need it. At this point in my life O2 would require me having 2 tanks or a tank towed behind me on a trolley on public transit or on my bike everytime I make my way through a very dense traffic heavy 20 mile trek. Frankly that doesn't make sense in my life. Also, cycling is healthy for me and if I can do something that will improve my health while helping to reduce the hell, then I'll take that anyday.
|
|
IP Logged |
jack the sound barrier
bring the noise
|
|
|
seasonalboomer
CH.com Alumnus
New Board Hall of Famer
If I think hard enough maybe it'll go away.....
Gender:
Posts: 2248
|
|
Re: rhinoplasty balloons
« Reply #9 on: May 18th, 2006, 2:06pm » |
Quote Modify
|
okay. as you indicate, you have some reading to do.
you have to look at Cluster Headache as a number's game and build an arsenal. There is no magic bullet, but there are a lot of little tools, that when combined can bring some semblance of managability to the CH sufferer's life.
back to the O2 conversation. okay, so you can't take O2 to work. have a tank for at home use only. let's say you're getting 4 headaches a day and 2 are at home and 2 are at work. the average week would then be 28 headaches. if O2 works 60% of the time then you would be able to nail 8 of them with O2.
sounds like your biking knocks back some of them. let's say that's another 5 headaches a week you kill with the bike.
we're up to 13 of 28 addressed.
Now, with Imitrex injections, they give you a cool self-administering "stat-dose" system that takes about a minute to administer and then you just wait 10 minutes and they're gone. Let's say you can somehow build a stock of injections (yes you will need prescriptions but you don't need to go to the doctors office.) and you can inject yourself anywhere. Even on public transportation.
Let's say that kills 4 more a week. That means you will have your answer for 17 of 28. Leaving 9 for an answer. Maybe your Red Bulls click of 3 or 4 of those ones and you only have a few left that are not addressed yet.
If you can achieve that you will quickly find a way to have those most effective tools available.
I found that once I got over the reasons why I didn't want to do these things and learned how good they were, and how easy it was, I didn't ever want to "gut them out" on my own anymore. I became a wimp to CH pain -- but that also drives me to fight them harder with these tools.
Scott
|
|
IP Logged |
-----------------------------------------------------
seasonal boomer
-----------------------------------------------------
|
|
|
unsolved1
Guest
|
|
Re: rhinoplasty balloons
« Reply #10 on: May 18th, 2006, 4:37pm » |
Quote Modify
 Remove
|
You're a long time sufferer who just recently sought medical treatment because of the fears of medication/procedure side effects. You spent 11 years without knowing the treatments, symptoms, or triggers. You cycle around during attacks. You also make Red Bull Vodka your last drink of the night.
You're right in 1 aspect: you and your doc do have alot to learn. You don't suffer from cluster headaches!
I'm not a doctor, but you can call me an expert 
Goodluck with your sinus problems. Maybe you should look into sinusbusters.com
UNsolved
|
|
IP Logged |
|
|
|
anditron
New Board Newbie
jack the sound barrier bring the noise
Gender:
Posts: 8
|
|
split in two
« Reply #11 on: May 18th, 2006, 6:59pm » |
Quote Modify
|
I did say in my initial response, I'm more than happy to write up my story when I have a chance and also outside of this thread, where it's appropriate to the board topics. But since you're the expert and you seem to think I'm making up a bunch of bs, I guess I'll just address it here. I have been tested. 11 years ago in April, I had severe trauma to the back right my head basically figure a straight line back from my right eye, this is when they started. Possibly related possibly not, I had been knocked in the head (fell out of a loft & some horse play) in this exact same spot 2 times prior between the ages of 19 and 20.
I was tested by the doctors then and I had a short window remaining under my parents insurance and so I went through a fun battery of tests in the city I was doing my undergrad. I didn't have a primary physician, because I didn't live where I grew up and I only went to the uni's clinic when I had a cold. I was told it was clusters, and given a medicine to try. Frankly I was inable to really understand what was going on at that time (none of your business thanks). And now when I try to remember all I can guess is they gave me a couple different "headache medicines" which didn't help and I remember being told by that Dr., well you can try taking aleve and see if that helps. Handfuls of aleve didn't help.
That May, my insurance was up. And I didn't know anything about what I had.
With no medical care and no money to pay it out of pocket, I suffered through them. I know the pain, the inability to stand still, the slamming of the back of my head into the wall to try and get it to stop, the crying and screaming from it. The hum - I tend to start humming at the very first sign. The eyelid that I would always have to beg people to ignore if I started doing it because I didn't know why it did it, it just did. The constant snuffling which occurs only right before a bout, the feeling like I have a stopped up ear even though I know I don't. And believe me, more than once I wished I could just take a tack hammer and slam it into the back of my skull, behind my right eye repeatedly and make it stop. For the last 11 years, I thought I was crazy (so did a large number of my Ex-boyfriends) all because the physical insanity that comes with a bout really kind of looks like it.
It's important for me to say here I didn't know 3/4 of these things were related to clusters until this last 6 months. I don't know why, but I never connected them. Not to the headaches though I did connect them to specific times of the year, every year. Of course, you, the expert, probably won't believe me.
As for what you *think* I said, let me clear your up confusion.
I did NOT say I just recently sought medical treatment because of the fears of medication/procedure side effects.
I never said I biked THROUGH a bout, I said that since I began cycling I have noticed that they don't hit as hard and in the 1.5 years since I started biking, for the first time since they began I had a 6 month (if not a bit longer!) moratorium of pain from them.
I also NEVER said that I drink vodka red bulls as my last drink every night. This statement might not have been as clear as it could have been so I'll rephrase... The reason I first thought taurine might be a source to help fight my clusters was after having it as my last drink of the night on a few different occassions and not experiencing any hangover. (Don't act like people with clusters don't drink, I've read plenty of posts from people here who do.) I deduced from such experiences that taurine must have some sort of affect on the brain whether it was blood, nervous, dyhydration whatever I couldn't say. But it does seem to me that taurine affects what causes clusters very similar to the way water helps.
You've taken tiny shards of my comments here, knowing nothing about me or my situation because I blatantly said, I'll write it later, lumped them together and came up appearing to not be such a fantastic expert as you would like to believe. I'll address the rest of the truth in my next post.
|
| « Last Edit: May 18th, 2006, 10:10pm by anditron » |
IP Logged |
jack the sound barrier
bring the noise
|
|
|
anditron
New Board Newbie
jack the sound barrier bring the noise
Gender:
Posts: 8
|
|
split in two part two
« Reply #12 on: May 18th, 2006, 7:03pm » |
Quote Modify
|
The reason I just recently sought medical treatment is because I learned to live with it because I couldn't afford not to. Not until this year when I was finally able to AFFORD insurance to do anything about it. And frankly after so long of coping because I had to, it's a little difficult to jump into taking medicines or treatments.
My original diagnosis doctor did a poor job of educating me in regards to what I had. This current doctor is the second doctor I've seen and when I went to her in January, I went to her with the hope it wasn't clusters, with the hope that the first doctor was wrong and with the hope that maybe after so much time there might actually be something for it. After a second round of tests, it was confirmed that I do indeed have clusters.
It would have been lovely if I'd had the money all these years to be able to afford to have further tests and treatments and to have not had to suffer from them as I did. I didn't.
I don't know why, but it didn't even occur to me to search about clusters on the internet either. I knew how to suffer it and so I did because that's what I knew how to do. It wasn't until my doctor gave me a list of sites that I realized, with a DUH!, there is info online about this. I can't even tell you what I felt the first time I came across this and other sites. Up until then I'd hoped I was just wrong about the clusters. I started reading through and was in tears from the realization that there are people out there who understand.
I joined this board in February and have been reading here and there since. It has upset me each time and almost every session when I've come to learn more, I've had to close out pretty quick because I was so upset from reading about what I know I've felt more times than I can even guess.
It's pretty damned scary when you finally have to confront an illness and acknowledge it will never go away.
But even still, with all I read, I didn't want to say anything on here because I don't like to feel like a victim/or be a whingey sufferer and I don't like to read stuff from people who act like that either. So I specifically chose to ask about the Rhinoplasty balloons here because of the news spot and because it felt to me like a way to step in, and get a conversation going to get a real feel for the community in here, without having to start with a big "oh woe how awful for me I have clusters" whingey post.
So no, it's not a sinus problem, but now, thanks to people like you, I've got a great feel for this community. It leads me to think I should simply go back to not talking about this, using this site for information and education only and leave you to be an expert on your cluster victim unite board.
cheers,
anditron
|
| « Last Edit: May 18th, 2006, 10:13pm by anditron » |
IP Logged |
jack the sound barrier
bring the noise
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
  
Gender:
Posts: 6458
|
|
Re: rhinoplasty balloons
« Reply #13 on: May 18th, 2006, 7:23pm » |
Quote Modify
|
Certainly don't join any pity parties.
I hate them too.
It's a kick ass attitude that keeps or has kept you from being a "victim"
Instead of joining the "victim unite board" as you called it, how about joining the family which so many have found and share the wealth of knowledge and tricks of the trade you have used on your own for so many years.
Teach those in need and lend an ear or a shoulder to those who need.
Best,
E
|
|
IP Logged |
I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
|
|
|
chewy
Guest
|
|
Re: rhinoplasty balloons
« Reply #14 on: May 18th, 2006, 9:50pm » |
Quote Modify
Remove
|
Quote:| But for the moment, it's important for me to note I spent the last 11 years not knowing anything about treatments, symptoms or triggers. |
|
Well thats all changed for you now. You have found the most comprehensive website in the world on treatrments, symptoms, and triggers. You have also found the largest gathering of "expert" sufferers in the world.
So now the choice is yours. Treat or not treat.
You can play around treating sinus symptoms or you can start treating cluster headaches. If you want to treat your sinuses then there are appropriate websites for that. If you want to treat clusters then you need not go any further than right here.
|
|
IP Logged |
|
|
|
anditron
New Board Newbie
jack the sound barrier bring the noise
Gender:
Posts: 8
|
|
Re: rhinoplasty balloons
« Reply #15 on: May 18th, 2006, 10:22pm » |
Quote Modify
|
on May 18th, 2006, 7:23pm, E-Double wrote:
Instead of joining the "victim unite board" as you called it, how about joining the family which so many have found and share the wealth of knowledge and tricks of the trade you have used on your own for so many years.
|
|
Cheers, and don't get me wrong, I don't think this is a victim unite board. I do find that people choose to be one of two things. They are their job, malady, sexuality; or they a a person who happens to do/have/sleep with one sex or another. I have no desire to be the first and I tend to be cautious of them when I meet them.
|
|
IP Logged |
jack the sound barrier
bring the noise
|
|
|
anditron
New Board Newbie
jack the sound barrier bring the noise
Gender:
Posts: 8
|
|
Re: rhinoplasty balloons
« Reply #16 on: May 18th, 2006, 10:31pm » |
Quote Modify
|
on May 18th, 2006, 9:50pm, chewy wrote:
So now the choice is yours. Treat or not treat.
You can play around treating sinus symptoms or you can start treating cluster headaches. If you want to treat your sinuses then there are appropriate websites for that. If you want to treat clusters then you need not go any further than right here. |
|
I definitely want to know more and through that knowledge do what's best for me and my body.
Unfortunately I came across in my initial post that I'm looking just to treat sinus symptoms when I didn't really intend that at all. I was asking if anyone had done this, and if so, what were the results.
|
|
IP Logged |
jack the sound barrier
bring the noise
|
|
|
unsolved1
Guest
|
|
Re: rhinoplasty balloons
« Reply #17 on: May 18th, 2006, 11:05pm » |
Quote Modify
Remove
|
Okay, I don't want to be the one to run you off anditron. That is NOT my intention at all. (By all means, plz stick around) After reading the rest of your posts, I recieved mixed signals about your symptoms and about how you have previously treated the situation.
I've been reading on the net for a long time now. And from what all I have read, these are a couple of points that I would like to make. (these points are not intended to dx your condition(s))
Many, if not most, CH sufferers go through MANY doctors in the early stages before they actually find out they have clusters and get the best treatments for them...regardless of $$ of insurance. Most CH'ers would give up all to stop the insane pain (sell the house, vette, and the dog). I definatley could not wait to afford treatment. I had to seek out medical help or possibly eat a bullet.
Most CH'ers don't touch alcohol in fear that an attack will be imminent, especially during cluster cycles. Mixing Red Bull and Vodka would still bring on an attack quickly for most sufferers in cycle, i'm sure. Anybody an expert in this area? FLO ... can you comment on your thoughts about weather mixing Red Bull and Vodka would be beneficial at all? Anybody?
Whatever you do have, regardless of weather it's clusters or not, I'm sorry your in pain. Your NOT in the wrong place. I encourage you to read all you can about this condition. You know your body and symptoms better than anyone else. After consuming as much knowledge as you can, make your own decision about your plan of treatment(s) or not. And I hope you solve your problems with pain.
UNsolved
|
|
IP Logged |
|
|
|
BobG
New Board Hall of Famer
Gender:
Posts: 5747
|
|
Re: rhinoplasty balloons
« Reply #18 on: May 19th, 2006, 1:26am » |
Quote Modify
|
on May 18th, 2006, 12:06pm, anditron wrote:
Sadly, BobG, I do have clusters, If it makes you feel better, I took the quiz and was correct on every question.
|
|
No, that does not make me feel better. It makes me sad.
|
|
IP Logged |
Stay stressed. Never relax. Never sleep. Ever.
|
|
|
Gator
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 4556
|
|
Re: rhinoplasty balloons
« Reply #19 on: May 19th, 2006, 3:04am » |
Quote Modify
|
Welcome to the asylum. We can be a little rough around the edges, but we do care. I'm not sure what the surgery you are talking about entails. I will say that before you have any kind of sinus surgery, make sure it is absolutely necessary and make sure you have a doctor that knows what he's doing. A lot of people have opted for sinus surgeries because their doctors were unfamiliar with CH. Can't recall one saying it fixed their clusters. Here is an old post from a member who had sinus surgery that didn't fare so well.
Quote:Re: Why do sinus infections trigger cycles
Reply #30 on: 03-28-05 at 04:20:35
Sundancer,
Make SURE you have an otolaryngologist that is well versed in sinus surgeries if you choose to have the surgery.
In 1999 I went in for day surgery on my sinuses for some headaches of unknown cause..ch.
The surgeon allowed the instrument to go too far up into my sinus cavity and the instrument went right thru the ethmoid bone, tore the dura around my brain and perforated my brain. I woke to spinal fluid pouring out my nose continually. Since circular holes will not heal in bones of adults, I had to be transferred to another hospital for a repairative surgery where the specialist took skin, muscle and fascia from behind my left ear and glued to the bottom of my ethmoid bone in hopes of stopping the CSF leakage. I continued to leak after this patch surgery so a lumbar drain was placed in my lower back and 15cc of spinal fluid was drained from my spinal column every 4 hours in hopes of relieving some of the pressure off the the new patch and giving it time to adhere to the ethmoid bone. This finally did the trick but I was being treated for menengitis the entire time as a precaution as well. 17 days after the initial day surgery I was released from ICU. Today I live with only the skin patch separating my cranium from my sinuses in an 8x9 mm area and it the patch ever leaks I will have to have a craniotomy and a metal plate inserted under my brain and on top of the ethmoid bone to stop the leakage. 
This botched surgery left my life with many limitations as I now have to protect the patch from any jolts or being jarred. I can no longer snorkle, scuba dive, ride or break horses, snow or water ski, lift more than 30 pounds, etc etc. 
PLEASE think hard and long before opting for a sinus surgery and make sure you are using the best surgeon around.
That headache that was the cause of the sinus surgery...was clusters. The surgery did nothing for the clusters but only added additional type of headaches. 
Let no day surgery be taken lightly! 
Renee |
|
I do not bring this post up to scare you off from surgery as much as to make you and others think long and hard and do your homework before agreeing to have it done.
|
|
IP Logged |
|
|
|
Beastfodder
New Board Old Timer
O2 and clusterbusters - naturally
Gender:
Posts: 294
|
|
Re: rhinoplasty balloonsNever got back to you on c
« Reply #20 on: May 23rd, 2006, 9:16am » |
Quote Modify
|
Anditron,
Never got back to you on clusterbusters - the WEBSITE'S HERE www.clusterbusters.com if you hadn't googled it. Read and inwardly digest, it works pretty well !
|
|
IP Logged |
O2 and clusterbusters - naturally
|
|
|
Karla
CH.com Alumnus
New Board Hall of Famer
One of Many and Never Alone - Join OUCH
Gender:
Posts: 3090
|
|
Re: rhinoplasty balloons
« Reply #21 on: May 23rd, 2006, 1:21pm » |
Quote Modify
|
I wanted to mention that imitrix comes in pill form. It takes about an hr to kick in and take effect. Most don't want to wait that long but it is better than nothing if your ch last longer than an hr. Another option is imitrex in a nasal spray. It takes 6-10 min to take effect. Almost as effective as a shot. I am a baby when it comes to needles and use the ns. It is portable and easy to administer any time any where. Zomig comes in a nasal spray also. You may want to ask your dr for these 2 meds. Also a side note: Do not take the imitrix and zomig within 24 hrs of eachother or you could have a heart attack or heart arriythmeia.
Verapamil is a good medicine to start with. I took up to 960mg/day. It tends to cause severe constipation at that level. Some who this doesn't work for add 900mg/day of lithium and the combonation works great for them. Me I tried both together and then just the lithium. I cut the number of ch that I was having from 8/day to 4/day! Good luck in finding something that works.
|
|
IP Logged |
Karla
suffer chronic ch
ch.com groupie since 1999
Proud Mom of Chris USMC Semper Fi
|
|
|
Tom K
CH.com Alumnus
New Board Hall of Famer
Wait 5 days, but I'm angry now...
Gender:
Posts: 1038
|
|
Re: rhinoplasty balloons
« Reply #22 on: May 23rd, 2006, 9:21pm » |
Quote Modify
|
Since my head hurts, I'm saying up front I didn't read all that stuff, the Cliff Notes version would be appreciated!  I started out doing all the crap trying to avoid the inevitable(sp). I hated needles and did the 'Trex pills. They sucked and didn't work. I got the Stat dose of 'Trex and got over the fear, now I'm using vials and doing 3mg per hit in an insulin syringe. You get over it pretty quick. I know you said you didn't want to be tied to a tank with the O2. Well, you don't. Use it at home if needed, I have one and I also got small tanks for the car, got over that ol' tank thing, too. Basically, I could give a sh*t what people think. I'm in pain and if you can't handle it, go fawk off, is my feeling. I'm not embarassed by needing needles or tanks because I get the relief I need. Hope you stick around, you'll find that some of us can be rough around the edges, myself included, but there is a wealth of info here. If you aren't happy with your doc look at the left of the boards and there are links, one of them links to all the OUCH friendly docs in the US. Hopefully there is one near you, or you can ask around and see who someone recommends in your area. Hope you get some relief soon!
|
|
IP Logged |
"America, you're so fine, you're so fine, you blow my mind. America, America."-Bart Simpson
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss