No Dentist Will Treat Me because I Have HAE... HELP!

[Lorraine]

    I don't know what to do and am interested in hearing if anyone else has had the same experience...  I have had an abcess tooth that needs to be extracted for 2 weeks. I have seen my regular dentist who referred me to several oral surgeons. The tooth has a prior root canal that has failed and the tooth has broken in two and is now hollow. The x-ray shows an infection down to the bone. The abcess has since ruptured through the gum.

I am in a tremendous amount of pain and have had a fever for over a week, even though I am taking 500 mg of Amoxicillin 4 Xday.

My HAE Doctor has recommended that I be pretreated with Prednisone and Fresh Frozen Blood Plasma prior to oral surgery and that has been arranged through her and with a Hematologist. 

The oral surgeons have refused to treat me due to their fear of being sued should something happen to me during or just post treatment, even with the pretreatment.

(They keep quoting a 4 year old law suit in my area where someone w/ HAE died after oral surgery and sued and won $15 million) Of coursed he was not pretreated, but, they still aren't willing to assume the risk, even if I sign a waiver.

In the mean time, I am apt to get Sepsis, if this continues much longer.

Any suggestions?

Please help...?    Lorraine   

[Robert]

Lorraine, I am still going through a similar experience here. Have an open hole from gum to sinus cavity.(all uppers were pulled by oral surgeon secondary to an abcess and a severe strep infection which I was all but dead when arrived @ hospital.We did 4 infusions of Cinryze prior to ,during,and after the surgery. (Thanks to Michelle Dawson @ Cinryze! -for co-ordinating everything.) My infection continues but the septic shock -has-for the most part-abated I still get the weekly "Visits: of our friend... The FFP and Winstrol and Danocrine only made things WORSE for me.(Was on 1200 mg Danocrine and also Winstrol for 12 years w/ no seeming impact.(Besides the horrid side effects) I can only suggest strongly that you speak w/ your doc about Cinryze w/ two infusions prior to surgery,one the day of surgery and one infusion three days later. That's what we have done twice. I needed Berinert during the septic shock episode. My best wishes...Call Michelle Dawson for her possible help??

[Robert]

Discovered Monday through the Infectious Disease doc who treated and has followed me from Feb 8th and the septic shock events, that what is going on in my legs is called Lymphedema  ....L E for short... Scratched my R leg on a tomato cage Sunday and once I got the bleeding stopped. the lag began to ooze my Birks full of a clearish-amber fluid running out of the scratch down my leg... Apparently it's lymph fluid built up and stored in my legs since the massive infection burned/ate up a bunch of the capillary system for lymph fluid to return. Naturally the HAE needed to take the "softball" opportunity to come out to play... Are we having fun yet!

[baxtergirl]

I had almost the same problem. My regular dentist will not treat me anymore and I had tooth that had a root canal that had gone bad.I was eating steak and bit on it wrong and the tooth cracked way down by the root.  I was in so much pain I could not sleep. I called the dentist and they sent me to a specialist(oral surgeon) a 40 minute drive away and another day of work lost.He would not touch me even though I was in so much discomfort. He said that the dental insurance company would not approve anything unless I agreed to have to tooth extracted in the hospital and he was not willing to do that without 2,000.00 up front as the insurance company would not cover the hospital treatment, only the extraction. I had to wait almost four weeks in pain before my HAE doc got me in to have it extracted at Mass general. What a Pain!!! You can have dental work done at a hospital with pre treatment. It is the safest way. That way if HAE attacks, there are emergency doctors moments away.Have your HAE doc arrange it quickly!! I found  that if I dabbed a que tip with clove oil(a small amount) and rubbed on the tooth the pain will be gone it about 1 minute. repeat as necessary but dont over do it...too much can make you sick.. and I am not sure how safe it is with infection  but my pain was manageable until I got treated. And most importantly I learned that your medical insurance will cover the pre therapy to have the dental work done and the hospital part and dental insurance will pick up their part. Hope this helps!

[Lorraine]

Thank you for the replies. I did find an oral surgeon who was willing to treat me eventually. The Oral Surgeon was also an MD, so, he was more educated thus more willing to listen to my HAE doctor and my hematologist re my pretreatment and the safety of the procedure for me.

I was pretreated with 20 mg of Prednisone for 5 days prior and was given 2 units of fresh frozen blood plasma the morning before the tooth extraction. I did absolutely fine during and after the procedure. No HAE at all!

The oral surgeon said he would call some of his colleagues to try to find me a general dentist and an Endodontist as I still need other work done going forward, not to mention this missing tooth I need a replacement for now. (My general dentist has still refused to treat me even though my specialists have tried to reassure him).  SOOO frustrating!

At least I am out of pain for now.  Thanks for listening and empathizing!
Lorraine