I haven't been on the site in awhile and just wanted to say HELLO to everyone and hope you all are well and in "ok" health at least!
I have Type 3 Severe von Willebrand Disease and haven't had any major issues lately (knock on wood!) I just recently had my annual Hematology clinic visit and was told I seem to be doing great!
My main problems recently have been my tonsils bleeding due to tonsil stones. My hematologist and ENT suggested I get them removed but I am beyond terrified. Anyone else with Type 3 had their tonsils removed?? & if so, I'd love feedback (good or bad).
I also get mouth bleeds over just about anything...brushing teeth, eating something crunchy or anything really, etc. I use Amicar for that, and it sometimes helps and sometimes it does not. I just hate the thought of treating for stupid minor mouth bleeds that just want to ooz & ooz for days on end...Anyone else have suggestions or tips on controling minor gum bleeds? I try to get cleanings yearly (although I know I need them every 6 mo.) I don't have very good insurance right now, so it makes it very difficult to find a decent dentist who understands and accepts a bleeding disorder.
I don’t have type 3 but I had the exact same problem with my tonsils and gums. My tonsils would bleed just about daily from debris ( stones) since I was 15 years old. I asked all the time about getting them out but at the time in Canada doctors had a " formula" for deciding on tonsillectomies. They only did it if you had three or more incidences of strep a year and I only had it maybe once. I gave up asking about it and learned to live with it. I have since moved to the US. A few years ago I kept getting strep that I couldn’t shake. One night I went to bed fine and woke up in the middle of the night thinking my head was going to explode. I went to emercency clinic and in the waiting room I felt a pop. The doctor told me the debris in my tonsils had caused an ear infection which led to my ear drum bursting. I was referred to an ENT specialist. He told me I was lucky the infection didn’t spread any further into the inner ear because that would have been bad news. He recommended a tonsillectomy. I was scared, too, about having this type of surgery with VWD but I have to say, unlike my experience with other doctors where I have to fight to get them to understand the seriousness and implications of VWD, the ENT was very much aware. I guess this is because ENTs are often on the front lines with VWD because it is usually when it is first diagnosed after a child has bleeding complications following tonsillectomy. He coordinated with my hematologist and had me extended watch in recovery. Not a problem occurred. Having my tonsils out has turned out to be one of the best things I ever did because I didn’t realize how draining it was having them bleed all the time and I haven’t had a cold or flu since. Also, I used to get bladder infections all the time, too, and I was convinced it was bacteria from my tonsils going through my system because I could literally time when I was going to have a bladder infection based on when I had a tonsil flare up. So, for me it was a good experience made better by the fact that had I had the tonsillectomy when I was younger, as I wanted, it might not have been the case because they hadn’t diagnosed me with VWD at the time.
As for the dentist, I have found it a futile endeavor. I tell them every single time I go for a cleaning the my gums will bleed because of my VWD. Each time is like I’m telling them for the first time and each time they tell me it is because I need to floss more. With type 3 you may need to go to a hematology dental clinc if there is one in your area. Good Luck! If you do have the tonsillectomy please update on how it went.
I was reading your post...and thought I would share my experience with having my tonsils out. I am pretty sure I am type 2 Von Willibrands. I had my first episode of bleeding when I had my tonsils out at the age of seven, I am now42. I was bleeding so much they had to take me back to surgery, and have transfusions. Of course I don't remember a whole lot about it, but my mom tells my how scary and horrible it was. The second time I had a problem with bleeding was when I had my first son. I had to have 2 units of blood afterwards...and they said I should probably not have any more kids. But I did end up pregnant again, and my doctor was well educated on VW, so she gave me DDAVP before and then scheduled his delivery and I was fine. I also have had DDAVP before a tooth was pulled. Other than these episodes, and daily gum bleeding while brushing teeth....that is really all I deal with. I have been recommended to see a hematologist, but have not. Anyway...I am not trying to scare you with the tonsillectomy...of course it was years ago that I had mine removed and more and more doctors know about VW now...maybe you could possibly have the DDAVP before hand or there for surgery in case needed. I hope everything goes well. I am sure you will do great! Take Care!
First of all bondgirl get to a hematologist.. They are so helpful especially in emergencies.. but pick one that is affliated wiht the hospital you will mostly likely go to in an emergency. the emrgency roomstaff seemed not to know anything abt VWD when i was requesting ddavp for my six yr old after a car accident / and for my self after a severe leg break. I had multiple fights with them.. Letters phone calls etc i almost hired a lawyer.. The reason i like having a hematologist is they can advocate and make sure you getting the right meds and amounts based on your current blood levels. I see her once a year,, for blood work. I have had to educate all of my primary doctors abt vwd and the school.. just in case.. something major happens.
The best thing before any surgery see the hematologist and let them make a plan.. ( for tonsils, babys cortizone shots) plan ahead. It could absolutely save your life !
My oldest daughter has huge tonsils she wants them out .. cause they are consitantly swollen causes issues.. but we cant get a dr to do it .. Is there something else we need to know about tonsils and vwd that maybe could say her dr to let her have them out ? I never heard if tonsil bleeds but anything would help her tonsils are very troublesome.. thanks
Yes, I have known my ENT since day one basically too as I had multiple tubes in my ears when I was younger. So my Hematologist and ENT are very aware of my disorder and coordinated and were comfortable doing the surgery. It was (and still is) me that is terrified to have it done. I had a HORRENDOUS time with wisdom teeth extractions when I was 18. So it terrifies me to even think about another mouth-type surgery.
I recently got good news regarding dental...I am still seen at Children's Hospital (yes, I refuse to leave! lol.) But I just had my annual clinic visit and seen the dental team during that time and they said they are more than happy to still see me at Children's in Dental due to me still being seen by Hemoc so yay!! :) I'd MUCH rather go there for anything I need done. They did suggest if I need any big surgeries (tooth extractions, etc) I may have to get it done elseware but majority of my dental problems are cavities. I appreciate you response and sharing your experience with me! It puts me a little more at ease but I am still terrified :)
VWDgirl said:
I don't have type 3 but I had the exact same problem with my tonsils and gums. My tonsils would bleed just about daily from debris ( stones) since I was 15 years old. I asked all the time about getting them out but at the time in Canada doctors had a " formula" for deciding on tonsillectomies. They only did it if you had three or more incidences of strep a year and I only had it maybe once. I gave up asking about it and learned to live with it. I have since moved to the US. A few years ago I kept getting strep that I couldn't shake. One night I went to bed fine and woke up in the middle of the night thinking my head was going to explode. I went to emercency clinic and in the waiting room I felt a pop. The doctor told me the debris in my tonsils had caused an ear infection which led to my ear drum bursting. I was referred to an ENT specialist. He told me I was lucky the infection didn't spread any further into the inner ear because that would have been bad news. He recommended a tonsillectomy. I was scared, too, about having this type of surgery with VWD but I have to say, unlike my experience with other doctors where I have to fight to get them to understand the seriousness and implications of VWD, the ENT was very much aware. I guess this is because ENTs are often on the front lines with VWD because it is usually when it is first diagnosed after a child has bleeding complications following tonsillectomy. He coordinated with my hematologist and had me extended watch in recovery. Not a problem occurred. Having my tonsils out has turned out to be one of the best things I ever did because I didn't realize how draining it was having them bleed all the time and I haven't had a cold or flu since. Also, I used to get bladder infections all the time, too, and I was convinced it was bacteria from my tonsils going through my system because I could literally time when I was going to have a bladder infection based on when I had a tonsil flare up. So, for me it was a good experience made better by the fact that had I had the tonsillectomy when I was younger, as I wanted, it might not have been the case because they hadn't diagnosed me with VWD at the time.
As for the dentist, I have found it a futile endeavor. I tell them every single time I go for a cleaning the my gums will bleed because of my VWD. Each time is like I'm telling them for the first time and each time they tell me it is because I need to floss more. With type 3 you may need to go to a hematology dental clinc if there is one in your area. Good Luck! If you do have the tonsillectomy please update on how it went.
Have you not been officially typed yet? I seen you said you are pretty sure you have type 2...just curious! Unfortunately ddavp does not work for type 3's...I have to use Humate-P with any issues. Which I do not mind at all and I know it works (I call it my miracle medicine lol) I'm sorry to hear about your horrible experiences. I guess I know they will be able to control my bleeding, that I am not so much worried about...I'm more worried about swelling and my throat closing as my wisdom teeth extractions, I was extremely swollen for weeks. Hope you have better luck in your future! Take care and thanks for the response :)
sunshine1973 said:
Hi Bondgirl007!
I was reading your post...and thought I would share my experience with having my tonsils out. I am pretty sure I am type 2 Von Willibrands. I had my first episode of bleeding when I had my tonsils out at the age of seven, I am now42. I was bleeding so much they had to take me back to surgery, and have transfusions. Of course I don't remember a whole lot about it, but my mom tells my how scary and horrible it was. The second time I had a problem with bleeding was when I had my first son. I had to have 2 units of blood afterwards...and they said I should probably not have any more kids. But I did end up pregnant again, and my doctor was well educated on VW, so she gave me DDAVP before and then scheduled his delivery and I was fine. I also have had DDAVP before a tooth was pulled. Other than these episodes, and daily gum bleeding while brushing teeth....that is really all I deal with. I have been recommended to see a hematologist, but have not. Anyway...I am not trying to scare you with the tonsillectomy...of course it was years ago that I had mine removed and more and more doctors know about VW now...maybe you could possibly have the DDAVP before hand or there for surgery in case needed. I hope everything goes well. I am sure you will do great! Take Care!
I have type 3, there is no reason I wouldn't be going to a Hematologist. Not trying to sound snippy. But I have been seen and followed by Hemagology my entire life. So I know better than that. I have been using the same clotting factor since day one, so I am well aware what to use/do and not to use/do. I was just asking advise on others who may have had their tonsils out who have type 3. My hematologist and my ENT (whom I have known both my entire life) are well aware of the situation, plans, etc. So sorry, but that was not what I was asking although I appreciate your reply. Take care!
Rebecca said:
HI all..
First of all bondgirl get to a hematologist.. They are so helpful especially in emergencies.. but pick one that is affliated wiht the hospital you will mostly likely go to in an emergency. the emrgency roomstaff seemed not to know anything abt VWD when i was requesting ddavp for my six yr old after a car accident / and for my self after a severe leg break. I had multiple fights with them.. Letters phone calls etc i almost hired a lawyer.. The reason i like having a hematologist is they can advocate and make sure you getting the right meds and amounts based on your current blood levels. I see her once a year,, for blood work. I have had to educate all of my primary doctors abt vwd and the school.. just in case.. something major happens.
The best thing before any surgery see the hematologist and let them make a plan.. ( for tonsils, babys cortizone shots) plan ahead. It could absolutely save your life !
That is good news about the dentist situation! As for the tonsillectomy, try to think of it as having informed cautiousness rather than being scared. If you are seriously considering having it done and your numbers from your hematologist are good now, this may be a good time. When I had it done it was sort of a rushed decision because of the infection and on the day I was scheduled they had to cancel the surgery because my numbers were so low. After a few weeks of infusions I was able to schedule it again but by then I was really stressed about it. My point is that it is stressful enough having surgery and it is more stressful with VWD so anything that can be done to lessen the stress the better. Another thing to consider is that statistically the older are when you have a tonsillectomy, the harder the recovery is from it. It is great that your hematologist and ENT work together. It sounds like you are already ahead of most people in your situation. Without sounding lame, sometimes you just need to trust in people and that everything will be OK.
Thanks! And you're right, I am probably just freaking myself out way more than I need to be. It's just a scary thought. When my tonsils bleed, it tries to form jelly clots and I nearly choke on them (It's gross!) As with levels, I have less than 1% vwf, so the only way to regulate my levels are to use factor probably every 12 hours for a week or so until bleeding was done (that's if I do surgery) I also have between 1-5% factor 8, so my levels are basically non-existant! I know the "trust" thing is rough..I mean I trust both doctors with my life! (Literally!) My ENT doc did some life-saving surgery back when I was 4 years old and in a severe car accident. And my Hemoc has always been there too. It's just so nerve-wrecking to think about any surgery like you said....I'll keep everyone posted on what I decide :) Thanks VWDgirl!!! <3
VWDgirl said:
That is good news about the dentist situation! As for the tonsillectomy, try to think of it as having informed cautiousness rather than being scared. If you are seriously considering having it done and your numbers from your hematologist are good now, this may be a good time. When I had it done it was sort of a rushed decision because of the infection and on the day I was scheduled they had to cancel the surgery because my numbers were so low. After a few weeks of infusions I was able to schedule it again but by then I was really stressed about it. My point is that it is stressful enough having surgery and it is more stressful with VWD so anything that can be done to lessen the stress the better. Another thing to consider is that statistically the older are when you have a tonsillectomy, the harder the recovery is from it. It is great that your hematologist and ENT work together. It sounds like you are already ahead of most people in your situation. Without sounding lame, sometimes you just need to trust in people and that everything will be OK.
I have II A vWD, and frequently have gum bleeding after brushing or water-pik use. I find the key is tackle one spot at a time if there is more than one. Trying to keep the area DRY really helps alot. It's hard, it's in your mouth, but if you can pull your cheek away, for example and just apply pressure with a Q-tip, sometimes I use another Q tip to hold my cheek away from the gum. Helps to have a washcloth in the mouth a bit so you don't drool from the side you aren't working on... but keeping it dry and light pressure with a Q-tip works for me. I've had a q tip in each hand applying pressure to both sides of a tooth. shoving a piece of gauze in and closing your mouth doesn't work,the gauze gets wet and acts like a wick, it just won't clot. Don't rinse! Although at the start, a good rinse helps with sanity (taste). Also Peridex oral rinse, get an RX from your vet, when you start with a gum bleed, that can help sometimes. A couple tries with that, if it doesn't stop, then the qtips and washcloth come out. I tend to have a couple dozen washclothes available at all times so I always have one ready for after brushing if needed!