.Comment 001
My sister has been diagnosed with fibrosing mediastinitis. It presents itself wrapped around her superior vena cava. She is 34 years old and in good health otherwise. No active histoplasmosis was found in blood or biopsy samples taken. No bone marrow biopsy has been done yet. We have been instructed to see a Dr. at Vanderbilt, in Nashville. I am trying to find out what course of treatment has worked on cases similar toñ s. It does not state in the case above how the 26 year old female was treated. We have not been given much hope from any of the doctors we have seen to date. Could you please help? Please send e-mails to: tina.stanley@mci.com Thank you so much for any help of direction you can give. Sincerely, Tina Stanley
Comment 002
aclarke@pacificcoast.net My now 36 year old daughter was diagnosed at age 20. She nearly died from complications and had an emergency thoracotomy to save her life. She is treated mainly with prednisone and and at this stage pain medication. I would appreciate hearing from anyone with this insidious disease. A. N. Clarke
Comment 003
LGanzMD@aol.com I am a 37 year old pediatrician and have recently been diagnosed with Fibrosing Mediastinitis. I had Histoplasmosis in 1983 while a pre-med student at Texas A&M. Tamoxifen Citrate seems to be helping reduce the fibroblast production (cells that lay down scar tissue and contribute to the fibrosis) and my hemoptysis is better; although I am still hypoxic with poor energy and disabled. Only by Christ's gæ can I continue to do as well I have been doing. I am going to try to find the following article, but you might want to look it up: Successful Treatment of Sclerosing Cervicitis and Fibrosing Mediastinitis With Tamoxifen Brent A. Savelli; Marianne Parshley; Melvin L. Morganroth, Portland, Oregon 1137
Comment 004
Paula Jaques, pjaques@flash.net Our daughter age 33 was diagnosed with F.M. after 4 yrs of searching for a correct diagnosis. Drs. at Baylor Medical in Dallas inserted a stent in her sup.vena cava; then 2 mos later inserted a stent inside the first stent. Her condition has improved somewhat but we don't know the long term prognosis.
Comment 005
As a follow-up to 35 year old sister, she was treated for complications from F.M. obstructing her SVC by a Dr. Loyd at Vanderbilt U. Med. Ctr. Dr. Doyle, a pediatric cardiologist, placed a stent into her SVC, but could not place them in pulm. arteries due to obstructions. Right pulm. arteries obstructed, left ones seem unaffected at this time. She is athletic & active at home and work. Beef and caffiene seem to irritate Ñ condition. Her condition requires that she be followed closely by Dr. Loyd and will be going to Vanderbilt this May for possible further stent insertion. With the Lord's help, things will go well. We pray for all who are afflicted by this disease. e-mail at: ctphillips@email.msn.com
Comment 006
I am a 39 years old female and have been dignoised with Fibrosing Mediastinitus. On February 3, 2000 a thoractomy major w/exporation was performed. The fungus had caused masses of fibroses in the right lung blocking the plumonary artery. This has caused me to loose what was once a function lung to a non-functioning lung. The thoractomy performed has left me in so much pain. The Histo has caused shortness of breath, rapC eart beat at times, chest pain, dizziness. I am presently on oxygen,but no medication. I have had several test done on my heart but my heart seems fine I don't understand what is going on. If you have more info that can help me or can refer me to someone who can. I have a wonderful doctor who's doing all he can but two heads together on this rare and uncommon fungus could get a lot accomplished. I have three kids and would like to be around to see them get grown and enjoy my grand children. I've been told that the illiness doesn't get any better but hope that it doesn't get any worse. I do know that this is a progessive fungus. Please e-mail..
Comment 007
comment number 006 I failed to give my e-mail address cbowilliams@juno.com
Comment 008
My husband is 42 and was diagnosed with F.M last December after a 15 day stay in the hospital and over a year trying to find the problem. He has a sup.vena cava shortness of breath,racing heart rate,fluid around the heart and lungs and so much scar tissue in his neck they cannot do surgery. He is on medication for all of the above however it has to change all the time.He is monitored regulary. We ,as many, have children 3 and 6. We did to find an answer to this. kampbusch@netzero.net
Comment 009
I am a 51 year old female who just underwent surgery at Mayo to remove what has been diagnosed as fibrosing mediastinitis. I had no prior symptoms and have no idea what this disease is. Histoplasmosis has been blamed. I'm currently taking itraconozole for the histo, but would like information about fibrosing mediastinitis. wilsons@iland.net
Comment 010
Lucy Gagnon, gagnonl@bulkley.net. My husband has been diagnosed with Sclerosing Mediastinitis and is currently on Dexamethasone, a steroid. The Dr. is currently weaning him off the steroid, however his neck starting swelling and about an hour later it went away. On a good night he will sleep 5 hours but most it's 3 or 4 hours. We are going to his doctor next Friday and like most people don't know his long term prognosis. Any information would be appreciated.
Comment 011
My 32 year old husband was diagnosed with FM in 1995. He has done quite well considering until recently. He had a bronchoscopy 6-4-01 revealing FM has now progressed from affecting left pulmonary artery & airway to now in the upper portion of the left lung (40% of the lung)Also, his doctor said his bronchial tube was 2/3 closed. Going 6-8-01 for further info. Talking about stent placements. missherrym@cs.com
Comment 012
missherrym@cs.com My husband had his bronchoscopy done. He has 75% blockage of bronchial on left with possible branching. The FM has spread into his left lung (40%) as I have stated before. Would like to know if anyone else has had this progression and what the doctors did for them? Just want to see if anyone else is in this boat. Thank you.
Comment 013
Finally... I am reading stories about Fibrosing Mediastitis!!! I was diagnosed in March 1988 in Tampa, FL. My right pulmonary artery is completely occluded. Drs. attempted a bypass, but saw no visible plane between the PA & the Aorta. Two yrs. later (following extensive research) I was referred to James E. Loyd, Vanderbilt University Medical Center. Jim has been a Godsend!!! Although there is nothing that can be done to reverse the effects of FM, nearly 14 yrs. later there has been minimal progression of the illness. I am, however, disabled by a completely unrelated illness - Fibromyalgia. I would love to hear from patients with this illness. You can contact me at: Fibrosing Mediastinitis, ATTN: Nita, POB 55606, St. Petersburg, FL 33732-5606.
Comment 014
I am a 46 yr. old female who underwent double bypass surgery in March of 2001 after a heart cath showed 100% blockage of one artery & 80% blockage in the other. The surgeon was completely surprised when he found a fibrous mass surrounding the upper portion of my heart. He successfully performed the bypass using my right & left mammary arteries and I have felt fine since. However, after reviewing the biopsy that was taken during surgery (the growth could not be removed) and after seeing doctors at the Cleveland Clinic, I have been diagnosed with a idiopathic fibrosing mediatinitus. I have no symptoms to date, but recently had an MRI and other tests to try to determine the cause. Any comments would be appreciated. Please email me at Debwack1@aol.com
Comment 015
This is an addendum to my comment #14 relationg to case #8. My email address has changed. The new address is debwack46@yahoo.com
Comment 016
silver_43@excite.com I am a 39 y/o female I was diagnosed with F/M in may of 2000, they said that it was a complication of histo. I have had a battery of tests done and pain meds are about the olny thing I take .If anyone wants to chat about this Im here. and i'm scared
Comment 017
oskar@compusmart.ab.ca My dad was diagnosed with Fibrosing Mediastinitis last year. He was in the ICU for over 6 months and is now home. He has no use of his left lung and is coughing lots and also throwing up. Our doctors don't know much about FM and are not much help. At this point we don't know what to do. We are all very scared. Please anyone with any kind of information, please help us!
Comment 018
help!
Comment 019
I am a 42 year old woman that was full of energy until diagnosed with mediastinitis fibrosis at the young age of 40. I am asthmatic and was seeing a lung specialist every six months to monitor a spot that appeared on my lung. The doctor thinks the probable cause is histoplasmosis. But how I got that is an unknown. After monitoring the spot for a year and a half, suddenly between six month check ups I went from being okay to having severe mediastinits fibrosis. I underwent emergengy surgery for SVC syndrome and had metal stents placed in the superior vena cava. A few days after surgery I ended up back in the hospital with a deep vein blood clot in my left shoulder that will be with me for the rest of my life. I'm with the rest of you-scared of what the future holds for me. If you want to talk I can be reached at dwill59@msn.com.
Comment 020
NEW DRUG AVAILABLE!!!
I am a 52 year old female who was diagnosed with fibrosing mediastinitus 3 years ago. I was told that I presumably had histoplasmosis that went to the lungs causing scaring, then to the lymph nodes, which calcified and leaked histo into the chest or an autoimune reaction caused scaring in the mediastinum. Resulting in superior vena cava syndrom and pinching off the right pulmonary artery by 90-95%. I was told they did not know what will happen in the future. If the scaring continues obviously I'm in trouble. If the scaring stops my condition could improve or worsen. When scars age they shrink. This could pull away from the affected areas or tighten even further.
A very good friend of mine who is a clinical pharmacoligist sent this website to me, www.actimmune.com
Comment 020
continuing Comment #20 (sorry)
The new drug is VERY EXCITING. The site refers often to two other diseases BUT also specificly describs inhibiting excessive scaring.
Good luck to all of us. myunker@ev1.net
Comment 021
My husband, age 55, was diagnosed & treated for pulmonary histoplasmosis 30 yrs. ago with Amphotericin B for 12 wks. We were told then that he was cured, but there would be some mild residual scarring in his rt. lung. Last month, he was admitted to the hospital with what was thought to be cardiac related problems. Turns out his right lung is dead - no airflow or bloodflow, the pulmonary artery & SVC are totally occluded, massive scarring in the mediastinum. He's been diagnosed with fibrosing mediastinitis. Stent insertion not possible. Other surgical intervention not possible due to the high morbidity/mortality rate. If he would have the surgery & survive, risks due to a right to left shunt would likely be fatal. So, basically he has no options. We've been told that this condition is NOT progressive but everything we're reading says it is definitely progressive & often fatal. My husband continues to have multiple symptoms on a daily basis since his discharge from the hospital. The cardiac docs don't want to see him again as he had a clean heart cath. The pulmonary docs say he is fine since his left lung appears healthy & say it will continue to be healthy. We've been told this condition is extremely rare & they don't seem to know what is going on & won't answer our questions. All we want to know is what is going on, what to expect, prognosis, etc. Anyone else out there running into this same crap? Would like to hear from anyone going through what we are going through here. Thanks, JV
Comment 021
My husband, age 55, was diagnosed & treated for pulmonary histoplasmosis 30 yrs. ago with Amphotericin B for 12 wks. We were told then that he was cured, but there would be some mild residual scarring in his rt. lung. Last month, he was admitted to the hospital with what was thought to be cardiac related problems. Turns out his right lung is dead - no airflow or bloodflow, the pulmonary artery & SVC are totally occluded, massive scarring in the mediastinum. He's been diagnosed with fibrosing mediastinitis. Stent insertion not possible. Other surgical intervention not possible due to the high morbidity/mortality rate. If he would have the surgery & survive, risks due to a right to left shunt would likely be fatal. So, basically he has no options. We've been told that this condition is NOT progressive but everything we're reading says it is definitely progressive & often fatal. My husband continues to have multiple symptoms on a daily basis since his discharge from the hospital. The cardiac docs don't want to see him again as he had a clean heart cath. The pulmonary docs say he is fine since his left lung appears healthy & say it will continue to be healthy. We've been told this condition is extremely rare & they don't seem to know what is going on & won't answer our questions. All we want to know is what is going on, what to expect, prognosis, etc. Anyone else out there running into this same crap? Would like to hear from anyone going through what we are going through here. Thanks, JV
my e-mail address is jfv_7 at yahoo.com
Comment 021
My husband, age 55, was diagnosed & treated for pulmonary histoplasmosis 30 yrs. ago with Amphotericin B for 12 wks. We were told then that he was cured, but there would be some mild residual scarring in his rt. lung. Last month, he was admitted to the hospital with what was thought to be cardiac related problems. Turns out his right lung is dead - no airflow or bloodflow, the pulmonary artery & SVC are totally occluded, massive scarring in the mediastinum. He's been diagnosed with fibrosing mediastinitis. Stent insertion not possible. Other surgical intervention not possible due to the high morbidity/mortality rate. If he would have the surgery & survive, risks due to a right to left shunt would likely be fatal. So, basically he has no options. We've been told that this condition is NOT progressive but everything we're reading says it is definitely progressive & often fatal. My husband continues to have multiple symptoms on a daily basis since his discharge from the hospital. The cardiac docs don't want to see him again as he had a clean heart cath. The pulmonary docs say he is fine since his left lung appears healthy & say it will continue to be healthy. We've been told this condition is extremely rare & they don't seem to know what is going on & won't answer our questions. All we want to know is what is going on, what to expect, prognosis, etc. Anyone else out there running into this same crap? Would like to hear from anyone going through what we are going through here. Thanks, JV
my e-mail address is jfv_7 at yahoo.com
Comment 022
I am a 45 year old female who was diagnosed with idiopathic fribrosing mediastinitis December 2001. At first I was given two days of high dosages of radiation to shrink the mass back because it had stopeed me from breathing. The doctors have no idea how I got this disease. I was treated with steroids and pain pills. I asked to be taken off of the steroids after a doctor told me that he did not believe they were helping but it was the only medication they were giving me for this disease. I was traveling to the mayo clinic every 3 months for a check up but now I have to go every 6 months. The plan was to place a stint in my bronchial tube if the scar tissue started to grow. However my doctors says when he consulted with other doctors at the conventions, they strongly advise against inerting a stint. They warned that it can be very dangerous and only helps for 6 months.The doctors are amazed because the FB seems to be shrinking!! The only thing I can attibute this shrinking to is prayer. I come from a praying family and a praying church. I came to realize that God is the only person I can rely on for help because the doctors are baffled. There was time when I had less than 10% airflow through my right lung and now I am being told that it sounds almost normal. I recently had another CT scan done I will going to the doctor next week to find out the results. I am praying for all of us and ask that you include me in your prayers too. If anyone wants to talk about this, my e-mail address is felepay@msn.com
Comment 023
LGanzMD@aol.com - See my post above, this is an update Nov 2002 - I know nothing more about FM than I did 3 years ago. But, that is not bad news. Since my last post here I have had almost 3 years of Tamoxifen 20mg per day. I have only been hospitalized once since then, approx 10 months ago with a pneumonia that I caught from one of my patients. It resulting in my coughing up half my blood and landing in ICU on a ventilator. Cath lab embolization of two bleeding arteries in my left lung failed to stop the bleeding because I caught a resistant staph germ while on the ventilator. I was given a blood transfusion and IV antibiotics for two weeks and was off oxygen within 5 weeks. I have been doing great since, with no worsening in my disability but no improvement. My chest CAT scan shows no worsening in the scaring in three years! Despite a totally blocked left lower pulmonary vein, my resting oxygen levels in Colorado are stable at 91-92% and while they do drop into the 80's with exertion I have not coughed up blood in 9 months, Praise God. I no longer do general pediatrics, I see only mentally ill children who have no infectious or contageous diseases. Life is good, and I spend more time with my kids now that I am disabled. Recommendations - start on Tamoxifen, eat well, take your vitamins, enjoy life and praise God for all he's given you! Shalom!
Comment 024
John Shook jrshook@stcc.cc.tx.us
Just a quick note...finding this site was eye-opening and I am thrilled to see the chatter...I had my SVC and IVC completely closed by FM. I have had great success in the diminishing of the disease through Tamoxifen, which (I am sure) saved my life. I do want to check other drugs mentioned (Prednisone did NOT help).
Comment 025
I am a 43 year old male, with a 25 year smoking history, and went to the doctor complaining of facial and neck swelling, headaches, nosebleeds, ringing ears, brief dizzy spells...you all know the routine. Of course, no one knew what it was and they pussyfooted around with tests that had nothing to do with the condition...when finally a CT revealed that the superior vena was nearly totally occluded. I underwent mediastinoscopy to take tissue for biopsy, which came back inconclusive, (but neg. for cancer) I went out to Spokane WA. where my bro-in-law works with a cardio thorasic team. Based on PET scan they were certain of cancer, so open chest surgery followed with path results provided on the spot. Diag. Fibrosing Mediastinits resulting from histoplasmosis. Here is the kick in the proverbial balls. An infectious disease Dr. told me, "Statistically, 13.5 people per 1 million infected with histo, contract what you have. Of that 13.5 30% or about 4 will die. Of 100 million infected that would mean a mere 400 deaths and that is an acceptabel number to the CDC, it is not financially feasable to pursue a cure." Matt5883@aol.com
Comment 026
Linda sircanton@aol.com My sister-in-law was diagnosed in 2000 with fibrosing mediastinitus. She had 2 surgical biopsies before she was correctly diagnosed. Her doctor in Austin was finally able to diagnose her. She has been on tamoxafin since that time and seems to have recovered well. She has been anemic, but functions as a normal person. She is followed regularly.
Comment 027
What an awesome blessings to have found this web site today (jun 19, 2003). I was diagnosed with Idiopathic FM in 1995. The following is a synopsis of what has occurred: Perscibed perdnisone from Nov 95-May 96. (mass stop growing); Congestive Heart failure Aug 97, surgery Nov 97; diagnosed with SVC syndrome May 98; Jun 2002 FM spread to neck; Oct 2002- two stints placed in SVC; coumadin therapy for balance of days; pain manageable some days worst than other. Would love to share more data. email: jmainvielle@comcast.net For all, please know that our healing is in God's hands.
Comment 028
I am so glad to find this site. I was told I had FM back in 1996, I was so scared because my dr. didnot know much about it he had only seen 1 case. The FM has affected my airway and right lung I had a stent put in dec 2002. I have trouble breathing and swallowing. I would like to hear from other people who just want to talk. by e-mail is leavell112@.com I would like to know more about FM. Dr. Loyd at Vanderbilt did my procedure. I have 3 boys I would Like to see grow-up TERESA.
Comment 029
I was recently dx. with FM related to histo. I have SVC syndrome with some effects in my right lung. I was having no symptoms except I had a large vein appear from my neck down to my stomach. After a mediastinal biopsy, CT scan, lung scan, CXR, and echocardiogram FM was determined. I am now being followed by God and Dr. Lloyd at Vanderbilt Medical Center. I believe Dr. Lloyd is heaven sent and I would encourage anyone with this disease to pray and seek God and Dr. Lloyd's help. I am waiting for results of my 2nd CT to see if any progression has occurred. My e-mail adderess is dbargery@dyercs.net
Comment 030
In response to my comment #29, I have been given results of my second CT scan and lung scan. The CT shows no change in the scarring in 3 months. The lung scan shows that the scarring is occluding my Rt. pulmonary artery which is causing my rt. lung to die. Presently I have 23% of my rt. lung working. This could stay the same or get worse according to Dr. Loyd. He will monitor CT's every year and lung scans every 6mo. I am still not having any symptoms. I was first diagnosed with FM Jan.2 2004.