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Hi folks
As I sit and type this post with my nose packed, probably for about the 5,000th in my life, I am riddled with anger and frustration.
I've had nosebleeds for as long as I can remember, frequently requiring emergency room visits to stop. I'm now 32, and it's becoming a huge issue at this point, lowering my quality of life, affecting my ability to work and perform normal daily functions.
I've had rhinoplasty twice, at age 16 and 24, both to correct a deviated septum. Both entirely unsuccessful. At age 29, an ENT suggested severing the main arteries in along my septum entirely, allowing ancillary blood vessels to manage the bloodflow to the tissue. That was just a nightmare. This quack was completely incompetent, and the surgery was a complete failure, accept for the nice scar I now have along the bridge of my nose beside my eye.
I sometimes go a few months without having this problem, but those periods are rare indeed. Just recently they started again, after about a 2 month break, and they are back with a vengeance. I'm having them daily, almost all of them requiring me to pack my nose to stop the bloodflow.
I've tried everything. I keep a humidifier running in my bedroom, when I breath most heavily through my nose, saline sprays, vaseline, etc... Nothing works.
This is very depressing, and has already caused me to miss so many important events in my life I don't want to think about it.
Has anyone reached such a point of desperation and found something that can actually fix this problem, or am I doomed to missing my childrens's soccer games and recitals, meetings at work, etc...?
I'm desperate.
At the very least, does anyone know how to find a list of the top ENT's in the country? I'd fly anywhere to get my nose fixed once and for all.
Thanks for listening. :(
In Reply to: Nosebleeds for 28yrs, 3 surgeries, help posted by DaveZ on September 09, 2002 at 18:48:22:
Hi, DaveZ.
You don't need an ENT (I hope you have learned this by now.) you just need some common sense applied to this problem!
See the nosebleed archives and let us know what you learn and how you do. This information will resolve everything you have mentioned so far. Your very first doc could have told you this stuff. Wonder why he did not :o) ?
Once you have the bothersome consequences of the bleeds under control, let us know and we can talk about why they may be happening.
Walt
In Reply to: Re: Nosebleeds for 28yrs, 3 surgeries, help (Archive.) posted by Walt Stoll on September 10, 2002 at 09:07:59:
Thank you for the reply Walt. I guess I had a an idea that an ENT probably couldn't help me at this point, but I'm no doctor, and haven't a clue about new treatments and procedures that may have come up in recent years. I guess I was hoping for some good news. I still wonder about the quality of the surgeons in the past, and if they actually did a proper job or not...
As for common sense, I apply everything I can, every bit of knowledge I've unhappily aquired over the long years with this problem. I keep my room humidified, use a moisturizer several times a day in order to prevent dryness, etc...
Just two hours ago, as I was applying my simple saline solution, medicine free, it triggered another nosebleed, the worst one to date. I have already lost close to a pint of blood, as I have kept a cup beneath where the blood was pouring out of my nose. 8oz, alrady filled once, and haflway up again, along with the innumerable packing tissues that I've run through and plenty of blood not caught by the cup.(I apologize if this is too graphic). My 'bleeder' is located too far up my nose for me to be able to pinch it in order to apply pressure. When I try that, I just get an immediate and ferocious torrent of blood pouring down my throat. The only way I am able to stop nosebleeds is by packing my nose for periods of time, and slowly replacing them with smaller packs until I am able to remove them entirely without further bleeding.
Unfortunately, this is one of those cases where I am not sure I will be able to get it to stop. Even when I am able to get good pressure on it, it still is continually seeping, and eventually the packing just needs to be replaced whether I think it's redy or not. I don't have hospital quality materials, and of course can't exactly go shopping for them right now in my condition.
I am a bit lightheaded, but for the moment, the last 25 minutes or so, I think I may be getting a handle on it. I haven't been seeing an increase in bleeding, for the first time since this started, 3 hours ago. I just have the feeling that at this point, as bad a condition as my nosebleed is at, when I attempt to remove the packing, I will most likely remove the clot along with it, and off we go again. I don't think I can go another round of heavy blood loss though.
I know this will be a moot point by the time anyone replies to it, but I just felt the need to vent a bit about the current predicament. And who knows, maybe someone out there will have something else I can try th nest time this happens.
I just hope I dont need a visit to the hospital. currently uninsured, and just walking in the door with this problem will be a $1000+ bill easy. I'm going to go rest, and hope for the best. time to re-apply ice again anyway.
Thanks again.
In Reply to: Re: Nosebleeds for 28yrs, 3 surgeries, help (Archive.) posted by DaveZ on September 11, 2002 at 19:28:38:
Thanks, DaveZ.
If you followed the exact protocol in the nosebleed archives, you are the first person I have seen in 30 years that this did not work for. Each thing in the protocol is essential for it to work every time. This is NOT applying pressure directly to the bleeding area!
Walt
In Reply to: Re: Nosebleeds for 28yrs, 3 surgeries, help (Archive.) posted by Walt Stoll on September 12, 2002 at 11:30:26:
Hi Walt
I'd hate to think I am some kind of horrid anomoly. :(
I read through your nosebleed management archives again, and multiple times during my major episode yesterday, I did exactly what you said, though I may have worded it incorrectly. I used a finger to hold the side of my nose that was bleeding shut, while leaning my head forward, but within just seconds I was gagging on an imense amount of blood flowing back up my nose and down my throat. To give you an idea of the severity of the hemorage, upon releasing the the side of my nose, the blood poured out at a rate you would see in a movie when a major artery is severed, and pumping out in a stream.
This is obviously due to the build-up above the point where the pressure was being applied(which also wasn't the area of the bleeding, being that it was further up). I did get to the point where I was abble to count to 200 very slowly once, and then it just started overflowing again to where I couldn't breathe and had to release.
What finally got it to stop was a thorough packing of the bleeding side(right) of my nose for a few hours. It seemed about once every 20 minutes or so, I was able to stem the flow enough where I wasn't doing a constant replacement of the packing. i.e. as soon as I would put the tissue in my nose, it would bleed right through. At this point, I would just go sit down, with my head slightly forward, and just -relax- as best I could.
Quite often I was seeing clotting happening, but they were long, and I mean long, like 3-5 inches long.
Once I got it stopped, about 5 hours after the first drip, I just placed a small amount of tissue in the tip of my nostril, just so I wasn't breathing through it and having it dry out again. I kept that in over-night. Oh, I had also very gently swabbed the interior of both nostrils at this point with vaseline to promote a moist environment for healing.
Today, however, I feel very sick, feverish and very tired, along with pretty sever back pain about one hand's length above the small of my back, just to the right of my spine, and my nose feels like it could start bleeding again at any time. I know I'm one sneeze away from another miserable episode. I am continueing to use vaseline to keep it moist and contained, and taking it very very easy, not bending over rapidly, no physical exertion, not drinking through a straw, swalling too hard, etc... I'm also drinking a good bit of water, which I normally due anyway, to help replace blood loss. I usually drink about a gallon of water or more a day.
I am also having a strange pain in the area below my navel. I think this is probably due to swallowing a whole lot of blood, and now it's just making my intestines quite uncpomfortable. I had one normal bowel movement, and have since had quite bad diarrhea.
On top of all this, my nose is still bleeding, or oozing, down the back of my throat. About every 5 minutes or so I get a 'lump' of mucus containing blood which is still quite a light color of red, that I have to spit out. Occasionally there are some very dark, clotty bits, but the majority is still fresh looking.
It's quite a depressing course of events, one that I have been through all too often.
I want to thank you very much for your continued interest and replies. If you have any ideas for preventing my nose from bleeding again, especially in the short term, while the wound is so frail, and promoting healing other than what I'm doing already, I would love to hear them.
Thank you again for your time and responses.
Dave Z
Ps. If you have the answer, I'd be very curious to know general info on an adult's blood supply. i.e How much volume does a typical adult have, and when does it begin to get to a dangerous level of blood loss? Also, how quickly does the body replace lost blood?
Sorry to be a nuisance.
In Reply to: Re: Nosebleeds for 28yrs, 3 surgeries, help (Archive.) posted by Walt Stoll on September 12, 2002 at 11:30:26:
You might want to do a search on 'bioflavinoids'. From what I understand of bioflavinoids (which isn't much), I'm a little surprised it isn't mentioned in the nosebleed archives. It's frequently recommended for people who bruise easily -- to help heal the broken capillaries.
In Reply to: Re: Nosebleeds for 28yrs, 3 surgeries, help (Archive.) posted by DaveZ on September 12, 2002 at 13:06:41:
So, DaveZ, you are getting anterior and posterior packing!?
With this rapid bleeding the artery involved has to be identified and it is the responsibility of the ENT to find that artery and tie it off permanently. This may require major surgery but that would be much less a bother than what you have been going through all these years.
Let us know whan you find an ENT that agrees with me.
You will need all of your records to convince any new doc what is going on.
Walt
In Reply to: Re: Nosebleeds for 28yrs, 3 surgeries, help (Archive.) posted by Walt Stoll on September 13, 2002 at 12:30:04:
Hi Walt
It's funny you mentioned that, as the third surgery I had was supposed to do just that, tie off those arteries. It just so happens that either this Doctor was absolutely incompetent, or I have some strange alien anatomy that he was unable to navigate. Granted, I know I would have some scar tissue from previous surgeries and nosebleeds, but he should have been prepared for that. This was back in '99 in Chicago area. I seriously doubt that the latter was the problem, so I'm more inclined to believe that he was just not the very best of ENT's. I knew relatively nothing about the Doc, he was just part of my medical plan at the time. Looking back, though, I should have had a few bells go off, as he agreed to perform the surgery after just one visit.
His excuse for the surgery going bad was so vague I can't even recall it. Something about not beeing able to see well enough to do the procedure.
Which brings me to today. My nose is still bleeding, not out of my nostrils, but every 2-3 minutes I'm forced to either swallow or spit out more blood and clotting.
I'm feeling very very sick today, relatively severe(about a 6-7 on the pain scale) back pain and the lower abdominal pain has not gone away.
My newest task, one that I'm having the absolutely hardest time at making any progress, is finding a resource that allows me to locate an absolutely qualified physician. It's almost like trying to find a good mechanic to fix your car. Everyone has an agenda, not necessarily with bad intent, but most, if not all, Doctors have certain specialists that they consistently use as referrals, usually within the medical plan they are working with. Same with general referral services. They aren't doing it for free.
I refuse to go to just any ENT I can find in the yellow pages, or whoever is recommended by the local hospital, etc... I want to find the top, the *TOP*, most qualified ENT in my area, and I will pay him whatever I have to in order to get the quality of treatment I so desperately need.
I just don't know who to talk to, or what resources to use to find this dream Doctor of mine. I happen to live near University of Michigan Medical School located in Ann Arbor, which has a reputation of being one of the top 10 hospitals in the country. This doesn't necessarily coorelate to the specialty of ENTs, but I'd hope it would increase my odds of finding a really good physician. I just don't know who to talk to. I can't imagine calling up the Dean of Medicine and expecting this very busy man or woman to take the time to listen to my problems and go out of their way to find the skilled Doctor I need.
It's really rather depressing, that in this country with the very best that medicine has to offer in the world, that I, or anyone for that matter, would have such a difficult time finding some of the best Doctor's in their field.
I have one friend who is a Dr, a therapist, and practices and teaches in the Wayne State medical school system, who I just got done speaking to only a few minutes ago, and even she was pretty much at a loss as to how to go about finding leading specialists. She is going to speak to people on the medical side of the school, and try and do some networking for me in an effort to locate the best around. That's the best thing I have going right now. Otherwise I'm at a loss.
I tell ya, in the end, if I have to I will end up calling the Dean of Medicine at UofM and pester him or her on the hope that I can succeed in my 'quest' for solving this problem.
If you know of other options, Dr. Stoll, that might be helpful in my search, resources or tools I might be able to use, I would be immeasurably grateful.
Once again, I thank you for the time and effort you donate just answering people's questions here on a daily basis. It's truly admirable.
I hope you have a wonderful weekend.
Dave Z
In Reply to: Re: Nosebleeds for 28yrs, 3 surgeries, help (Archive.) posted by DaveZ on September 13, 2002 at 17:17:38:
I have someone you can talk to. He is a very competent surgeon and I would be willing to call him and let him know to expect your call. He did surgery on me and it was the best thing that could have happened to me. I really think he would be able to help you. He is in So. Cal., but after you tell him your problem, he may know of a very competent doctor in your area.
If you are interested, e-mail me at delhayek@yahoo.com
In Reply to: Re: Nosebleeds for 28yrs, 3 surgeries, help (Archive.) posted by DaveZ on September 13, 2002 at 17:17:38:
Thanks, Dave Z.
It is apparent that you have a unique case. If I were you, I would carefully collect ALL of my medical records and briefly document each of them in a chronological history sort of like suggested in the Health Coaching Protocol.
I would then go to the ENT clinic at your medical school. If they try to slough you off insist upon seeing the head of the clinic.
When you get in to see the medical student (surely the first one you will see) start by showing her the brief history. You need to impress this person to really get the next (probably intern) to take it seriously. Then do the same thing for him since he has to be impressed to get the resident in the room, and so on. Save your medical history documents until someone asks for them.
Someone is sure to recognize the unique opportunity your case is for teaching and then the whole department will get behind your case. I think this is your best bet since the "monopoly" makes it so easy for an incompetent to practice.
Let us know how you do.
I cannot believe that this is not curable.
Namaste`
Walt
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