Guest guest Posted July 16, 2007 Report Share Posted July 16, 2007 Thats ok.. I left an answer there. We return to NIH AUg 26-30 and are for sure in clinic Aug 28 and maybe next day too finally a diagnosis, TRAPS r92Q gene/mimics Hello, My son Stone, age 6 has had fevers as far as I can remember April 2006. He may of had them previously but I really never noticed. My husband noticed the fevers in December 2006 and noticed them to be every month, and I didnt notice. I am a stay at home mom of three. Stone age 6 is our oldest. So when he started kindergarten and missed alot of days each month, I realize something was going on since my other children never got the fevers. Last summer I just thought he was swollowing too much water from the pool and catching a virus. I did go back to work fulltime April of 2006 and quit two months later because of his fevers. When he started complaining of stomach pain, headaches in the fall of 2006 thats when my doctors did cat scans, blood tests. My doctor did not give me the run around...she sent me to a Infectious disease specialist after he had three fevers, under her care, red eyes at onset of fever, rash on his bum, stomach pain and headaches , no mouth sores at that time. Right now he has a mouth sore and ankle pain which he has never ever had until NOW. (very odd). He had his first fever a few days ago since diagnosis of TRAPS and I gave him Predinsone 6ml- 40lbs. Its been two days and no sign of fever, some stomach pain. He is normal. I am so happy!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! At the cleveland clinic they are very " test happy " as I will call it. They dont fool around and will jump to prescribe a test or have a specialist look at the problem... My general peds doctor is very seasoned and proactive in her approach. We recently moved here to Cleveland and I know we would of not gotten this diagnosis as soon and precisely. The Cleveland clinic system is so much different and better then where we came from. We are blessed to have moved here, even though I didnt want to! (job) This doctor, Dr. Haaskas specializes in reoccurant fevers, TRAPS//fmf etc. He has three cases in Cleveland and is going to NIH this Fall and will have us go to participate in a study if all works out. (to be discussed on Monday at our treatment plan visit). We had DNA testing and of course many other test previously. Cat scan, blood work during a fever and not when fevering. And a colonscopy, endoscopy scheduled but cancelled (thank God!)due to the diagnosis of TRAPS which mimics Pfapa we were told. There is hope. If anyone is interested I will post our treatment outcome/plan to treat this life long genetic disorder. A visit to the cleveland clinic doctor for diagnosis is well worth it if you can! Dr. Haaskas is the man to see. mamarabbit05@... N. Ridgeville Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2007 Report Share Posted November 13, 2007 How are you at mythology and math??? ---------------- I was always a person who loved/studied mythology (couldn't get enough of it) and had to study math (I didn't care for it but I believe it was the teacher seeing as I wanted to be an architect and work on machines that require math -- lol, you should have seen me try that whacked out on treatment). What's the issue? Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2009 Report Share Posted August 13, 2009 Obviously I DO know that FDA is a US department....but thanks for giving me the benefit of the doubt. And my sentence does not say anything about FDA in Europe...read my sentence again. " Its probably because you are in Europe..I don't think it's passed FDA here yet...but I could be wrong! " And my background is a surgical nurse, with a specialty in spine surgery, as well as being a 6 time surgical patient... thanks for asking. And as I said, you are having your surgery in Germany, where it has been used for decades, which is why people go there for surgery INSTEAD of here. In Germany you can receive multiple level disc replacements as well as a disc replacement adjacent to a fused level, this is NOT available in the US. That is why I said that the procedure you are having would NOT be available to you here in the US. No surgeon is approved to do it nor do they have experience doing it. In the US, only one level disc replacements are done (wether or not this is still in trials or has been approved by FDA I do not know) and there can be no adjacent fusion. " What other advice or suggestions, or mis informed information have you given to other people on this group? I would assume you are not a medical doctor, nor are you a specialist in spinal disorders? " Wow ....maybe you want to climb back off your high horse.... --- Babbitt ________________________________ From: <cdnlager2001@...> spinal problems Sent: Wednesday, August 12, 2009 11:50:56 PM Subject: Re: Big Surgery just 12 days away Yes, you would be wrong, if you look on the Synthes ProDisc web site, also FDA is a USA program, I don't think they call it the Food and Drug Administration in Germany, France, Austria, etc.... http://us.synthesprodisc.com/NR/rdonlyres/F29A7A4D-E00F-439A-8DE5-A083A951FA06/0\ /fdaletterp050010a.pdf I don't know what your background is , but it does concern me that people come on this group and you voice your thoughts and suggestions and people ask you questions specifically, they are asking your advice and yet, you do not know that the FDA is an United States of America program. Hence many times things are being done in other countries and people go there because the procedure is NOT FDA approved and so Insurance companies will not cover said procedure, drug, etc.. Many times procedures, drugs etc..are being used in clinical studies, which that research company, drug company, pay for the procedure, drug, etc....once the clinical studies are completed that information is then sent for FDA approval. But it shocks me that you would say what I am having done is FDA approved in europe....NOPE What other advice or suggestions, or mis informed information have you given to other people on this group? I would assume you are not a medical doctor, nor are you a specialist in spinal disorders? Just curious, I don't mean to come across offensive, but it does concern me. From: Babbitt <tpowell1977> Subject: Re: Big Surgery just 12 days away spinedisorderssuppo rtgroup@gro ups.com Date: Thursday, August 13, 2009, 3:25 AM Its probably because you are in Europe..I don't think it's passed FDA here yet...but I could be wrong! --- Babbitt ____________ _________ _________ __ From: daniel <cdnlager2001> spinedisorderssuppo rtgroup@gro ups.com Sent: Wednesday, August 12, 2009 1:38:40 PM Subject: Re: Big Surgery just 12 days away > Well, I can tell you that it is FDA approved, so it must be past the clinical trials. I am in the US Army, and my insurance is paying for it TRI CARE Europe. My Surgeon is one of the founders of the Pro-disc, he has done over 2500 procedures. The reason for the pro-disc is because once the fusion is completed there will be added stress on the L4/L5 which is DDD. Perhaps in whatever state and/or hospital you are afiliated with, but I can tell you that many US Patients come here to Germany as well as my Doctor has gone to the US for many, many procedures. Many, Many insurance companies pay for this. If you research it on their web site, you will see. > Who's paying for this? As I last knew, the prodisc was like the others, still in clinical trials. As such, it is only available here for ONE level, and no other levels can be fused or even diseased or need surgery. > --- Babbitt > > > > > ____________ _________ _________ __ > From: daniel <cdnlager2001@ ...> > spinedisorderssuppo rtgroup@gro ups.com > Sent: Wednesday, August 12, 2009 11:38:52 AM > Subject: Big Surgery just 12 days away > > > Well, hope this finds everyone doing as well as can be. I am getting ready to have my fusion of L5/S1 and ADR of L4/L5 with the Pro-disc. My surgeon is Dr. Bertagnoli (http://www.dr- bertagnoli. com/) one of the leading spinal surgeons in the world. Just checking in to see what suggestions anyone may have? Dr. Bertagnoli stated that I would be able to drive within 2 weeks of the surgery and even go back to work (desk job). I am not one to rush back to work, however I am not one to just sit around and do nothing if I can help it. Is this a realistic expectation? He too stated that I will be wearing a brace for a short period of time, this brace will pretty much dictate the my limitations as far as bending, I understand that I will not be picking up heavy items etc... > > What are somethings I should expect? I will probably be in the hospital for 5-7 days (this is the German way). I will journal my surgery pre-op and post-op so I can share with everyone my expereince and my recovery so everyone can learn. > > I look forward to any input. > > Thanks.... > > (Big day 24 August 2009) > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2009 Report Share Posted August 13, 2009 > > > > Well, I can tell you that it is FDA approved, so it must be past the clinical trials. I am in the US Army, and my insurance is paying for it TRI CARE Europe. > > My Surgeon is one of the founders of the Pro-disc, he has done over 2500 procedures. The reason for the pro-disc is because once the fusion is completed there will be added stress on the L4/L5 which is DDD. > > Perhaps in whatever state and/or hospital you are afiliated with, but I can tell you that many US Patients come here to Germany as well as my Doctor has gone to the US for many, many procedures. Many, Many insurance companies pay for this. > > If you research it on their web site, you will see. > > > > Who's paying for this? As I last knew, the prodisc was like the others, still in clinical trials. As such, it is only available here for ONE level, and no other levels can be fused or even diseased or need surgery. > > --- Babbitt > > > > > > > > > > ____________ _________ _________ __ > > From: daniel <cdnlager2001@ ...> > > spinedisorderssuppo rtgroup@gro ups.com > > Sent: Wednesday, August 12, 2009 11:38:52 AM > > Subject: Big Surgery just 12 days away > > > > > > Well, hope this finds everyone doing as well as can be. I am getting ready to have my fusion of L5/S1 and ADR of L4/L5 with the Pro-disc. My surgeon is Dr. Bertagnoli (http://www.dr- bertagnoli. com/) one of the leading spinal surgeons in the world. Just checking in to see what suggestions anyone may have? Dr. Bertagnoli stated that I would be able to drive within 2 weeks of the surgery and even go back to work (desk job). I am not one to rush back to work, however I am not one to just sit around and do nothing if I can help it. Is this a realistic expectation? He too stated that I will be wearing a brace for a short period of time, this brace will pretty much dictate the my limitations as far as bending, I understand that I will not be picking up heavy items etc... > > > > What are somethings I should expect? I will probably be in the hospital for 5-7 days (this is the German way). I will journal my surgery pre-op and post-op so I can share with everyone my expereince and my recovery so everyone can learn. > > > > I look forward to any input. > > > > Thanks.... > > > > (Big day 24 August 2009) > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2009 Report Share Posted August 14, 2009 I swear to God...are you simple or something???...my comment never said anything about Europe and FDA!!!! If you are having insurance paying for your surgery, I was deducing that you were having the surgery done there, because the FDA (to my knowledge at the time) had not approved th ProDisc yet (for use HERE!), and as such, it would not be covered. I never said the FDA approved it in Germany!!!!! AND...because of the TYPE of surgery you are having is ALSO not allowable by the FDA...(they dictate use of implantables also)...but IS used in Germany, where I KNOW many Americans go for this surgery. Don't think for a second that I don't know what I'm talking about...and publicly blasting me on here only made you look more like a douche, as most people on here know that I know my shit. I have had my own hands deep into the back, touched the brain and spinal cord, assisted in the very first ProDisc replacement surgery in RI. I have assisted in mot every spine surgery you can think of...as well as LITERALLY EVERY surgery done to the human body. I have been a student of some of this countries' best surgeons. I can describe in detail every step of the procedures for the surgeries you all are having...can you? Have you seen a herniation? A bone spur? A facet joint? A disc? The spine?.....Please. Sit down and stop being rude. Oooh.. " my surgeon goes all over the world to teach this " Please...a LOT of surgeons go all over the world to teach...evn the ones who ren't the best. trust me...that mean nothing. I'm sure you surgeon is great...but seriously..shut up. --- Babbitt ________________________________ From: daniel <cdnlager2001@...> spinal problems Sent: Thursday, August 13, 2009 3:11:05 PM Subject: Re: .... > > > > Well, I can tell you that it is FDA approved, so it must be past the clinical trials. I am in the US Army, and my insurance is paying for it TRI CARE Europe. > > My Surgeon is one of the founders of the Pro-disc, he has done over 2500 procedures. The reason for the pro-disc is because once the fusion is completed there will be added stress on the L4/L5 which is DDD. > > Perhaps in whatever state and/or hospital you are afiliated with, but I can tell you that many US Patients come here to Germany as well as my Doctor has gone to the US for many, many procedures. Many, Many insurance companies pay for this. > > If you research it on their web site, you will see. > > > > Who's paying for this? As I last knew, the prodisc was like the others, still in clinical trials. As such, it is only available here for ONE level, and no other levels can be fused or even diseased or need surgery. > > --- Babbitt > > > > > > > > > > ____________ _________ _________ __ > > From: daniel <cdnlager2001@ ...> > > spinedisorderssuppo rtgroup@gro ups.com > > Sent: Wednesday, August 12, 2009 11:38:52 AM > > Subject: Big Surgery just 12 days away > > > > > > Well, hope this finds everyone doing as well as can be. I am getting ready to have my fusion of L5/S1 and ADR of L4/L5 with the Pro-disc. My surgeon is Dr. Bertagnoli (http://www.dr- bertagnoli. com/) one of the leading spinal surgeons in the world. Just checking in to see what suggestions anyone may have? Dr. Bertagnoli stated that I would be able to drive within 2 weeks of the surgery and even go back to work (desk job). I am not one to rush back to work, however I am not one to just sit around and do nothing if I can help it. Is this a realistic expectation? He too stated that I will be wearing a brace for a short period of time, this brace will pretty much dictate the my limitations as far as bending, I understand that I will not be picking up heavy items etc... > > > > What are somethings I should expect? I will probably be in the hospital for 5-7 days (this is the German way). I will journal my surgery pre-op and post-op so I can share with everyone my expereince and my recovery so everyone can learn. > > > > I look forward to any input. > > > > Thanks.... > > > > (Big day 24 August 2009) > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2010 Report Share Posted August 15, 2010 - your mom obviously has a very high lymph%, almost all her whites are lymphocytes. The variations between 70 and 80 are not significant. If it went from 37 to 83 in two weeks, it is either significant, or she has an infection. It is strange that everything else appears normal. A wbc doubling time of a few weeks, with a lymph% of about 95%, would certainly make me wonder about her lymphoma. You're doing the right thing by eliminating other possibilities, but I would certainly be concerned about the status of her lymphoma/CLL. The CT/PET should be very informative. I think that's tomorrow, right? In a message dated 8/14/2010 9:57:17 P.M. Eastern Daylight Time, laurenahaag@... writes: > - the virus is more likely to affect your wbc. Now, since your mom > has a certain lymph%, that would also cause the lymphs to rise. But I did > not hear anything about WBC rising. > > So maybe I am just not educated enough yet on this blood stuff, but yes her WBC is rising. It has been about 37K, of which absolute lymphocytes are 35K. When it rose 2 weeks ago, the WBC was 83K, but the lyphocytes made up 81K of that. A week later, WBT went down to 72K, and lymphocytes were 70K. A few days after that WBC back at 85K, absolute lymphocytes at 83K. So the WBC is going up, but when you breakdown the WBC, only the lymphocytes are going up. Can a virus cause only the lymphocytes to go up or would you see other parts of teh WBC go up as well? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2010 Report Share Posted August 15, 2010 Ok – based on the other posts with formulas, I’m beginning to understand the significance of the % of lymphocytes in the total WBT. I will look at her blood work and do those calculations. I was just providing ballparks. This is the part I was missing. She had the CT but not a CT/Pet. I will ask the doc to order that. Tomorrow is the Endoscopy to rule out gastro disorders causing or contributing to her symptoms. I’m also going to ask them to do that test for the H.pylori, as suggested by Chris. I am grateful to all for responses and personal e-mails. All have contributed to a better understanding and have provided some direction. From: [mailto: ] On Behalf Of jb50192@... Sent: Sunday, August 15, 2010 12:22 PM Subject: Re: .... - your mom obviously has a very high lymph%, almost all her whites are lymphocytes. The variations between 70 and 80 are not significant. If it went from 37 to 83 in two weeks, it is either significant, or she has an infection. It is strange that everything else appears normal. A wbc doubling time of a few weeks, with a lymph% of about 95%, would certainly make me wonder about her lymphoma. You're doing the right thing by eliminating other possibilities, but I would certainly be concerned about the status of her lymphoma/CLL. The CT/PET should be very informative. I think that's tomorrow, right? In a message dated 8/14/2010 9:57:17 P.M. Eastern Daylight Time, laurenahaag@... writes: > - the virus is more likely to affect your wbc. Now, since your mom > has a certain lymph%, that would also cause the lymphs to rise. But I did > not hear anything about WBC rising. > > So maybe I am just not educated enough yet on this blood stuff, but yes her WBC is rising. It has been about 37K, of which absolute lymphocytes are 35K. When it rose 2 weeks ago, the WBC was 83K, but the lyphocytes made up 81K of that. A week later, WBT went down to 72K, and lymphocytes were 70K. A few days after that WBC back at 85K, absolute lymphocytes at 83K. So the WBC is going up, but when you breakdown the WBC, only the lymphocytes are going up. Can a virus cause only the lymphocytes to go up or would you see other parts of teh WBC go up as well? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2010 Report Share Posted August 22, 2010 Hi , I understand your concerns about talking about the doctors " but " with achalasia we are so rare that other than this site, where are we going to discuss these things? This group is very open and very intelligent, they offer a collected amount of thought and research that is very valuable to us who suffer. We all discuss the doctors and try to find a good fit regarding our location. There is nothing wrong with that. Medically, sometimes we have to be our own advocate. Even with the greatest doctor sometimes it doesn't work, I have no idea if my surgery on Tuesday will be a huge success or not. It will depend on many things, not just the doctor. But....a good doctor that knows achalasia and has experience can make all the difference in the world. I have listened to this group and made my choice's based on much research also. If things don't work, at least I have a group that can toss around idea's of what to try next, this way I do not feel so alone in the matter. I hope you can understand my points. I wish you the best. Julee So Calif. ________________________________ From: josef <schmundt@...> achalasia Sent: Sun, August 22, 2010 4:51:57 AM Subject: Doctors and Hospitals  Dear Members, When I am asked on here where I have had my myotomy and partial wrap done, I don't know whether it is right to respond or not.Let it suffice to say it was one of the University of Pittsburgh Medical Centers.That is where I had my manometry tests done also.Then they referred me to there Doctor.I didn't find much about him on the internet.He did three of these operations the day I was there. Sometimes I feel I have too much faith in doctors because I have had such good luck over the years.I am thin to begin with (6'3 " 185 lbs), and I don't have a lot of weight to lose.When I had my intake with my Achalasia surgeon he looked at his counterpart and said Marfans and then continued as if he had said nothing.This was a slap in my face.If he wanted to mention this he should have included me in the conversation.I do have a lot of Marfans symptons but I don't have Marfans.I just want to get better and so far after surgery things have not gone in that direction and I am not pleased. To give names of doctors or actual hospitals especially if the outcome of surgery is not satisfactory may be an insult to them, so I will not mention specifics. Quote Link to comment Share on other sites More sharing options...
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