`A GP found a mass in my intestines by feeling it.a Cat Scan confirmed the mass and within 2 days I waS OPERATED ON I was hospitalized for 31 days, during which time the surgeon told me I had cancer.—-even though the labs did not confirm that.

I eventually did recover—-about 18 months later he told me the cat scan follow up showed the masswas coming back and he thought we should immediately operate again. I agreed and the surgery was immediately performed. After about 30 days my stomack had not woke up, so he operated again and did some rerouting—–after a total of 61 days in the hospital it did reawake and the dr sent me home—–really told me he did not know what to do for me.
The first operation was in 1993, and the last 2 were in 1995.

after I got home I called the Mayo in Jax Fl—–in 1995. I have been under their care since then. I went on predisone and culchinie. ( that was in 1995—–stayed on low dose of predisione for about 2yrs as I remember togather with the culchine for about 3 yrs. .Then I was on no treatment and other that some scar tissue pain did pretty well

Then last year (2012) I started lossing weight and the pain level went up, and just generally felt bad and weak. Mayo put me back on Predisone burst.That did help, but my stenght and remained weak, I did regain most of the weight I had lost.

Then in early 2013 the pain level went back up and my general feeling is not good, weak,even to speech weakness.i HAVE HAD EXTENSIVE EXAMINATION AND TESTS and so far the conclusion is that the problem is the SM.

I am now back on a Predisone burst togather with culchne——unfortunately so far I don’t think we have it under control, but of course I am still on the medicine and praying—–at this time i am being beat up pretty good—-but I do think the Dr, at the Mayo is where I should be getting my care.

I pray for you all and hope you will do the same for me.

I read about your daughters 2 unsuccessful surgeries with Dr. Berger, I just wanted to find out how she is doing now a year later since your last post. Is she experiencing the same pain? I am dealing will issues initially diagnoised to be ECU tendonitis but some of the pain also seems to be in the area Dr. Berber mentions within his video. I used to play baseball at a high level but now in my 40′s. I would love to hear from you soon, thank you for your time!

In His love,
Edie

These are great questions. When taking care of patients with atrial fibrillation (AF) I discuss stroke risk and management of symptoms. Of these addressing stroke risk is most important and you should discuss this with your physician.

Treatments such as electrical cardioversion or ablation are used to address symptoms. In your case AF was not associated with symptoms. However, the symptoms from AF can be difficult to identify since they are often gradual. In your case I would consider a cardioversion and assess whether or not you were having symptoms that you might have attributed to “getting older.”

If you in fact do feel better we will have learned that you actually did have symptoms associated with AF and procedures such as ablation (including using a cryo balloon technique) may be appropriate.

In many cases AF can be progressive and it is important for you and your physician to address conditions that may contribute to the development of AF such as hypertension and sleep apnea. In general the longer you are in AF the more difficult it is to treat and conversely the more you are in normal rhythm the more likely you will stay in normal rhythm.

I hope this helps.

Warmest regards,
Fred Kusumoto

Dr. Crum says MMN generally does not affect speech. Bulbar ALS starts in speech and swallowing and can progress in different rates. I hope that helps a little.

I am so happy that the procedure changed your life, Wendy and am counting on the same outcomes for me too.

Best,
Roberta

Does MMN effect speech. my brother in all was told he had ALS last Nov 2012. He is still the same symptoms today, he is working every day and getting on with life. He gets down at times thinking about his future. he was told he had the bulpar type. do you think he maybe diagnosed or a miracle, or a very slow type?
.

Sorry to hear about your husband’s condition. If you’re interested in seeking an appointment, here is a good place to start.

http://www.mayoclinic.org/patientinfo/appointments.html

Catch ya later
<http://www.caramoantourpackage.com/

I was just diagnosed today at the Mayo Clinic in Phoenix with sclerosing mesenteritis. Since it seems to be so rare, I am looking to connect with other people who suffer from it. Is there a support group online anywhere?

After many, many days and tests. … I thought they too would not find out what was wrong with me. But they didn’t give up. The last test showed I was positive for Endothelial Dysfunction with Syndrome X. My doctor that informed me was very kind and told me little was known about this disease.

I have spent the past five years researching and gathering any information I could find. I watched my health and life slowly get decline as the disease progressed. Local doctors were no help, most thought it was a made up disease. I was treated like a hypochondriac when I would go to the ER. Just before my first recognized heart attack last year, I had a friend take me in because I just could not break the pain cycle. This was a few days before my heart attack, after waiting and told I was probably just having a panic attack. It didn’t matter to them that I had my Mayo papers with me. While lying there for a couple hours, I over heard the attending doctor on the phone with the on-call cardiologist, he actually told him he really didn’t feel I had anything wrong with me that having someone there to hold my hand would not fix. That same concerned doctor patted me on the back as I was leaving and told me, “well you’re lucky, at least you can’t die from it”.

I want desperately to get the information out to all my heart sister who feel there is no hope or maybe I am imaging this … after they have ER visits like mine. I know most of us wait and wait hoping the pain would break so we don’t have to go to the ER. It is horrible that we have been made to feel this way. How many have died waiting too long? Where do we start to educate, we who have the diseases, but are not given the respect and common courtesy other in our position are given by the healthcare providers, or go straight the top and educate them so they understand and don’t have to be afraid of us because we are unique?

All I know is it is frustrating, as you can tell by my ramblings. Thank you for your time reading this and all the hard work you are doing to make change happen. I don’t know how I can help, but I want to be there for the next younger me that comes along and hopefully I could give her the understanding and comfort that eluded me.

Thank you again,
Christie

Did you ever have surgery for your SCDS?
This procedure has literally changed my life
All the best,

Wendy

Best of luck!! Mayo is an amazing place!

Reading of the above success stories is wonderful. If there happens to be anyone with any additional information or experiences, please share. Additional dialog can only benefit given the rare and unknown characteristics PEOMS.

Sorry I just noticed a posting. Mayo is fantastic! I didn’t feel much pain – I mean it is painful when they put splits up your nose (but I didn’t have nasal polyps) – I had a lot of swelling but it went ok in the end.

Hope this helped.

I am going to try to lose some weight this spring – be more healthy!

Did you get your turbinates reduced the 2nd time?

prestonsierra@yahoo.com

Thank you for your time.

Mayo Clinic Rochester
Attn: Office of Patient Affairs
200 First Street, S.W.
Rochester, Minnesota 55905
Telephone: 507-284-4988

Mayo Clinic Jacksonville
Attn: Privacy Officer
4500 San Pablo Road
Jacksonville, Florida 32224
Telephone: 904-953-2030

Mayo Clinic Arizona
Attn: Patient Administrative Liaison Office
13400 East Shea Boulevard
Scottsdale, Arizona 85259
Telephone: 480-301-4938

Well I got to my first appt. And the cardiologist didn’t seem to care much about my main chief compalint of headaches, diziness, unable to go to work for 3 weeks. He said he was much more worried about my hypertension which I’ve had under control over 6 years and had actually gotten an opion at Mayo many years back. I told him I was here for my headaches, diziness and ER visits symtpoms. He said that was part of his job as a cardiologist. He set me up for all these appts for hypertension which I didn’t need at all. He sent me to a Neuro. I asked him the doctors back at home thought maybe my adrenal glands were affected. He said that’s not part of his job once again.

I went to my appts. I went to the Neuro who bascially spent less than 20 mins w/ me listening and had me walk, touch my nose. And said I have no clue what’s going on. Hope things get better. I asked him if there was anything we can look into and what about my adrenal glands is that a possibility? he said that was out of his expertise. He offered to order a bunch of tests, which he said would offer no answers (not sure why he would want me to go through them then). I said since you don’t think they are useful I will not.

That was it… Cardigologist says it’s not his job. Neurologist says it’s not his job. Clearly cardiologist dept does not act as a internal medicine doctor too. Oh and the best part I was left with over $2000 out of pocket bill to pay.

I thought Mayo would spend time looking into the issues, rather they gave up without even trying. Doctors don’t talk to each other. no one seemed bothered. you always hear these great PR stories about how they spent so much time and found the issue, they truly are PR stories. b/c that’s not what happens when you actually go there. Neither doctor has read through my reports before I got to the appt. They also did not know exactly why I was there.

I am confused on what’s really happening at Mayo. Are they really that good? It seems like if your symptoms don’t fit neatly into a disease then they are clueless. I thought Mayo was good at looking deep into issues and coming up with diagnosis. While I realize they can’t diagnose all problems.

I wasted a week there. I think Mayo Clinic doctors need to realize people come there from all over the country and are looking for answers. At least don’t be rude to your patients. And come prepared. We are paying ALOT OF MONEY to be there. It’s just another day at your job for you, but to us it’s our last resort…

Here is also our policy on charity care: http://www.mayoclinic.org/pdfs/charity-care-policy.pdf

I wish you and your husband the best.

Find a former mayo doctor or alumni who can help refer you.

Listen. Worse things can happen to a person. I have work and people who need my attention. I have a life to get back to and I am not going to let epilepsy derail me. Learn all that you can . Don’t stop asking questions. The more you know, the more empowered you will be.

Have a pretty medical bracelet made and don’t keep it a secret. You can’t drive. You need support. It takes time to plan around the no car part. But, I have found that I can do it, and that life will go on. You can do it too.

After surgery I had horrible headaches and facial pain for short periods of time on the right side. I was told it was normal with RSD. I have taken every anticonvulsive meds and pain killers over the past 18 years. They either do not work and/or I cannot function on them.

I now have HORRIBLE, CONSTANT pain in the right side of my head, face, burning and pain in my ear canal. It feels as if someone is trying to force a hot poker with ICEE HOT on it in my ear. I have had 3 root canals and 2 extractions. My dentist will not remove any more teeth, he sent me to an oral surgeon who said nothing is wrong with teeth. I cannot function the pain is so bad. My ENT said I have Trigeminal Neuralgia.

I just filled out the online request for appointment and I hope I can get in ASAP. I do understand why it’s called” the suicide disease”. Nobody should have to live like this. If I do have TN I really hope The Mayo Clinic can help me. I am desperate to stop the pain.

my blog: Edu Backlinks List

Pay a visit to our blog site as well
<="http://www.caramoan.ph/how-to-go-to-caramoan/

Mayo saved the life of a dear friend with a rare disease. So, perhaps it’s my turn. Thank you, Arden, for speaking out.

michael kor
micheal kors

How do you go about getting the right scans and doctors to run them and believe you?? I actually live right in Rochester and have been battling these symptoms for 8 months now. I have gone from doctor to doctor to doctor and finally a doctor in Nebraska brought up SCDS after I told him about my odd symptoms (heartbeat in left ear, disequilibrium at all times but worse in loud places, being able to hear my eyes move in the sockets, constant nausea and dizziness)….. I would love to chat with you!

Edie

In His love,
Edie
P.S. After 5 years of the medication azathioprine Mayo wanted me to get
off it due to long term side effects although my Seattle neurologist wasn’t
concerned about that. Anyway, I did go off it two months ago and thus
far seem to be in a remission. Sure hope so. Otherwise will have to start
all over with IV steroids, etc.

On the other hand, survivorship has it’s own issues. Mine are relatively minor – joint pain, fatigue, fogginess – but others have far more life-limiting issues.

The cancer world is listening, however. The Women Survivors Alliance will host its inaugural National Women Survivors Convention (www.survivorsconvention.com) in August this year. Women will come from all over the country to network, learn and share. I can’t wait!

My son is about 3months old; he sustained a brechial plexus injury at birth. However, he is now able to lift his arm but his hand is still not responding. Is it wise to come for surgery?

I have had tremendous success thus far…if you would like to talk or have any questions just let me know and we can speak.

This is so doable!

Wendy tapper

Dr Beatty did one side at a time as you temporarily lose a pretty good deal of hearing for a short period of time……following the surgery you take antibiotics for a few days, no steroids, I take a couple of low dose painkillers for a couple of days and then simple over the counter works if you feel you need something for a short time..
This procedure, surgeon, team of doctors are AMAZING!! Feel free to contact me if you have additional questions.
Best to you!

Stay strong, there are answers!!

Thanks!

Debi

Here is also a link for our international services: http://www.mayoclinic.org/international/.

I am from India, 35 years old, male. I also have the same condition since past 8-9 years. I had done multiple all round health checkups and no one ever indicated this could be/is a problem.

Could you please suggest me some tests ?

Best Regards,
Biswaranjan Mishra

Realmente estoy gratamente sorprendido de ver lo que ustedes hacen en esta página web. Gracias al traductor de google pude ir leyendo los links y el inmenso profesionalismo que el equipo de la clínica hace por comunicar y educar a la población de su país.
Son, como no puede decirse de otra manera, unos verdaderos maestros y su experiencia es un ejemplo para muchas clinicas del mundo y personalmente seguiré profundizando en este amplio y vasto mundo de la Comunicación para Educar.
Los blogs son maravillosos, se escribe desde el lenguaje de la salud, pero aterrizado al lenguaje humano, comprensible, digerible, entendible, y sobre todo, un lenguaje cargado de un altísimo componente educativo.
Las historias de los pacientes es algo que jamás hubiera imaginado se pudiera hacer en la web de una clínica y ustedes lo han logrado y de una manera brillante. No existe en el mundo una mejor manera de educar a una población, sino es a través del ejemplo. Gracias, mil y mil gracias por sus enseñanzas, gracias por el amor con que ustedes realizan su trabajo. Desde Pasto, Nariño, Colombia reciban un caluroso saludo de fraternidad y gratitud por todo lo que enseñan a través de la web de la clínica.

Gracias inmensas también al Dr. Pablo Medina Aguerrebere quien me recomendó visitara la web de la Clínica.

Muy atentamente,
Germán De La Rosa Pantoja
Comunicador Social
Estudiante 3er. Maestría en Educación Universidad de Nariño
Asesor en Comunicación para la Salud Centro de Estudios en Salud
CESUN – Universidad de Nariño
Pasto, Nariño, Colombia

TRADUCCIÓN AL INGLES POR EL TRADUCTOR DE GOOGLE

A respectful greeting

I’m really pleasantly surprised to see what you do on this website. Thanks to google translator could you read the links and the huge expertise that the clinic team makes to communicate and educate the people of their country.
They are, as one can not say otherwise, a true master and his experience is an example for the world and many clinics continue deepening personally in this wide and vast world of communication to educate.
Blogs are wonderful, the language is written from health, but landed into human language, understandable, digestible, understandable, and above all, a language full of a very high educational component.

The stories of the patients is something I never would have imagined it could be done in a clinic site and you have succeeded and brilliantly. There exists in the world a better way to educate a population but is by example. Thanks, a thousand thanks for your teachings, thanks for the love with which you perform your job. From Pasto, Nariño, Colombia received a warm greeting of brotherhood and gratitude for all that they teach through the clinic site.

Thanks also to Dr. Paul Aguerrebere Medina who recommended me to visit the website of the clinic.

Sincerely,
Germán De La Rosa Pantoja
Social communicator
Student 3rd. Master of Education University of Nariño
Communications Advisor for Health Center for Health Studies
CESUN – University of Nariño
Pasto, Nariño, Colombia

I have seen SO many doctors across the state of Texas some of who are SUPPOSED to be experts in this field. I have been seen at Scott and White Austin, UT Dallas. Doctors are SO SO SO SO rude and ALWAYS seems to want to say it is in your head when they can’t figure it out. I have been treated so badly by physicians in general that I have developed almost a cynical mistrust of them all. There are several Texas docs that need to get OUT of the field as their treatment of me bordered on cruel (this was witnessed by others) Once I was told I HAD NO RIGHTS!!! In THIS country I was told I had no rights are you kidding the land of liberals and being politically correct??? I have been accused of faking my illness…. lemme as you HOW do you FAKE a blood sugar of 422????? They ran drug tests and said I was doing drugs that elevated my heart level (all negative)saying I had to be doing something to make my heart rate 190. WHY are doctors ALLOWED to be so cruel? And I say ALLOWED because my only attempt to have one doctor disciplined through the Texas Medical Board resulted in NOTHING the TMB stood right by their doctor who was so blatantly in the wrong. One doctor refused to see me again till I had a psych consult, accused me of faking my illness, causing my own weight loss and not being a diabetic (I was under the care of the same endo for 20 years till he retired and I gave her the mans name she refused to call him) then she unethically terminated the doctor patient relationship despite the fact that my weight had dropped dangerously low and it was obvious I was very ill. I went for my next scheduled appointment and was turned away telling them no doctor in that office would see me. That was then end of my 27 year life in Texas I moved away shortly after and it broke my heart.

Ok that brings us to today. I moved out of Texas when I became so ill I could no longer function and getting help from anyone in the closed minded medical community in Dallas with one of the largest healthcare systems BMC being the absolute WORST! The last doctor I saw in Dallas told me sometimes we die waiting for answers and that HE thought my POTS was under control yet my heart rates are still SO ridiculous I have had to abandon my business, my active life and am now basically housebound. I am living in the city where I was born and have been seeing a doctor here who did a pacemaker/modification that seemed to have solved the problem. After my surgery I didn’t see my heart rate above 90 (it had been average 150 and as high as 224) even when I TRIED to make it… of course I was THRILLED. Then slowly the heart rate crept back up till we are pretty much back where we were. The doctor here has me scheduled for an ablation in 8 days. I am extremely concerned about it as it says that ablation CAN make POTS patients worse. I have a new primary doctor here and I like him as much as I can any doctor and he at least seems to be trying to help. I am doing a 24 hour urine now looking for Addisons disease and am going back to a rheumy to see if possibly the SCL-70 might be now posing the problem at last visit it was “positive with no visible sign of disease progression”. My concern is ablation is permanent and if that isn’t what is wrong WHY am I having it done? I am so confused, each doctor tells you something different blah blah but they are about to permanently alter my heart and make me pacemaker dependent for the rest of my life and I have concerns.

Sorry this is rather ramby but frankly I have 7 days now to make a decision. Added note….. my sister died in 2006 of a ruptured aneurysm my father is terrified he is losing his only remaining daughter. Thanks any suggestions will be welcomed but please try to be positive I have had enough negativity and cruelty from the medical community to last me a lifetime. Thanks

Thank you…

Vance Howe
Long term patient, volunteer and benefactor in Phoenix
480-488-5592 if you’d like to call

Can you share the doctor’s name?

Congratulations – have a wonderful life.

Thank you for sharing information about your personal journey with LBD. I learned today that my dear Mother has been diagnosed with this disease. Your description of your experience and observations about helpful activities is much appreciated. I will suggest that my family members read your jounal entries and will also seek out the other reference you mentioned.

I will say a prayer every day for all those with LBD.
Barb

I haven’t had any procedures done yet, was just diagnosed a month or two ago.

Wendy

Sorry to hear about your daughter and her injury. I was a player with the San Francisco Giants when I had my UT repair and luckily, I had the best post-surgery team in the world. The medical procedure fixes the tear, but what people don’t know is that the rehab is the most crucial aspect. If you would like to hear more please contact me via email info@eurozonesolutions.com

Regards,

Aaron Hornostaj

First off must thank Dr Berger. You are a wizard!

My name is Aaron Hornostaj and I was a patient of Dr. Berger back in 2007. He performed arthroscopic surgery on my right UT ligament and I am now 100%.

I injured my wrist in 2006 while playing baseball with the San Francisco Giants. After my surgery in 2007, I had 8 months of vigorous rehab but now can say it was worth it. I have been able to get back onto the ball field and compete with the best in the world.

Surgery fixes the tear, but the hard part is finding the right staff and modalities for rehab. If you have any questions please send me an email to info@eurozonesolutions.com or do a google search of me.

Best wishes,

Aaron Hornostaj
info@eurozonesolutions.com

I am a 47-year-old mom with two young teen boys. I just wanted to thank you for your story. After 4 diagnoses of “Relapse-Remit MS or NMO” (over 3 years with no relapses and no NMO antibodies) and many other symptoms which have put me in a wheelchair and kept me from driving and going outside, I recently saw a doctor at Johns Hopkins who has said he believes I am experiencing progressive MS and possibly a copper deficiency.

We have a very, very small extended family, so the weight of the work to take care of me and my boys has fallen most heavily on my husband’s shoulders. The boys have been wonderful, too, but since they are children my greatest desire is to try to maintain the most “normal” childhood we can for them.

It has been really frustrating limiting my and my family’s lives as this disease has taken hold, but I have to tell you that the part of your story that I most identify with is the part where God has provided friends upon friends upon friends to support, encourage and pray for you as you travel your journey. I am blessed with the same gift.

God’s also given me the gift of doing everything in His time. I see examples of His control at many places in my life, but the biggest thing he allowed me to have was the time to pull my son out of a wonderful Christian school for two years to homeschool him and provide him with two therapies he needed in order to function successfully in school with a learning disability. He has returned to that school and now achieves exceptional grades an standardized test scores.

Thanks for the uplifting telling of your story. I hope I can continue to praise God for things learned during my illness after it is over, whenever that may be, as you have. Many Blessings, Laura

Thankfully and respectfully,
Caroline Adams

Hope this helps!

Hope you are doing well!

I am working toward a Vorinostat

Doug

I do not think I would ever return there because I feel any other doctors would be prejudiced by their charting. To those of you who have had a bad experience also I would say that doctors are human wherever they practice. They have prejudices, they can jump to conclusion, they can miss things and misdiagnose things. They might treat the next patient just fine and you got them on a bad day but at Mayo they will never ever admit that one of their own might be wrong or have missed something or that they themselves did. Don’t give up.

http://www.zimmreed.com/Da-Vinci-Robotic-Surgery/63870/

Georjean Parrish – survivor

I am a survivor of Septic Shock, complete organ failure, and fungal infection – the result of a doctor who accidentally punctured my intestines during surgery. My family says I was swollen like a balloon. I remember my hands and feet peeling so badly and my hair falling out.

My story:

I had surgery on Dec 17, 2008, to remove my kidney for what we were told was advanced stage kidney cancer. We now find my doctor’s records show only renal mass, presumed TCC (transitional cell cancer) of the kidney, and not a single biopsy done before or during surgery that confirms any cancer. And, my family was told immediately after surgery I was cancer free. Then, just the other day after our twelfth request for ALL medical records (I don’t understand why this is such a struggle), we again, found even more disturbing information.

I never saw any oncologist that my PCP (primary care physician) and urologist clearly told us I was seeing. I was only seen by my PCP, urologist, and a radiologist. Now we are finding information that just turned up in my latest records: a request showing an ultrasound I had on November 11, 2008 that clearly indicates NO left or right renal mass, and a urine cytology (test) shows negative for cancer cells. This is, though, another traumatic story, so I will stop and discuss the septic shock trauma from this surgery.

December 17, 2008: During surgery for left laparoscopic nephroureterectomy, left aortic and interaortocaval lymph node dissection, right iliac and obturator lymph node dissection, my intestine was accidently punctured.

December 17 to 19, 2008: I laid in the hospital in terrible pain for two days, begging for help. I was told by nurses and doctors that I was being a baby and they just gave me more pain meds. I also found out that no blood work had been done except for hematocrit and hemoglobin – and they were both low. My urine output was very, very low, maybe something that could have been a clue for the future: How about total blood work after a major surgery?

On December 19, 2008, the last thing I really remember for many, many months was looking into the eyes of my husband and telling him I was dying. He rushed to get help and general surgery stepped in and rushed me to emergency surgery. I was in Septic Shock. I spent 20 days on life support in ICU and survived only to be discharged quickly on January 16, 2009, with tubes and open wounds – and the doctors’ and hospital’s knowledge that I had another huge 9 cm abscess in the left flank that they couldn’t reach through the abdominal incision. I also had major respiratory issues, among other things. Well of course, my husband had to rush me back on January 21, 2009. Then, more drains were inserted until they finally did a flank surgery on January 23. I also had, over the course of my treatment, many blood transfusions, mix-ups in my treatment orders, and various other traumatic events.

I finally left the hospital early March 2009 and had home health care. My husband nursed my wounds at home for months, until all drainage tubes, wound vacs (a method to help wounds heal) and open wounds healed in late July 2009. Since I am a strong willed person and a fighter that has never let anything get me down (but this trauma), I fought my way out of the bed, wheelchair, and walker. I was told by my doctors to walk, walk, walk. I then found out around Sept/Oct 2009 that the additional pain I was now noticing was my abdominal wall, tearing in the lower pelvic area, was because of the infection. The next month, they found two more inguinal hernias and we don’t know how many in my upper abdomen.

My doctor didn’t feel I was physically or mentally ready for another major surgery to repair them until after the 2009 holiday, but then the problems started as I was out of work for a year and lost my job and insurance. So there went my multiple hernia repair surgeries and all care. I think that was the point I started wanting to know more about all that had happened to me; I was then told I had to ask questions through their risk manager and was never able to talk to any of my doctors and I was labeled “CRAZY.” I know this as the nurse thought she hung up the phone when she called to cancel an appointment and continued talking to the office personnel on my voice mail about how Georjean Parrish, this CRAZY person, will be calling upset we cancelled her appointment.

I knew I wasn’t crazy for thinking they should be responsible for completely fixing all the medical issues they created, but since I couldn’t pay and had no insurance, I was sent numerous letter asking me to quit asking questions and that as of April 30, 2010, I needed to find new doctors. I didn’t even understand all that had happened to me to be able to explain to a new doctor. My PCP basically acted ignorant to all that had happened to me and never referred me to any needed services, for right lower lung paralysis, aspirating from being intubated twice, blood issues, etc.

The last PCP I found to treat me, after my medicare started, got frustrated with my questions and didn’t have enough time in her schedule to accommodate me, so here I sit home bound with no life, no car to find a doctor, and no correct abdominal supports. Since now the doctor I discussed surgery with is worried it has been so long that there will be issues with scar tissue and adhesions, until something ruptures or my intestines get incarcerated/strangled, he said to leave well enough alone.

OK, I can kind of agree that God has gotten me this far, he wouldn’t let me down now. But days when I am so sick, I get scared. I struggle to pay for the medicines I take, since medicare doesn’t cover and AZ doesn’t offer supplemental plans if you’re under 65.

I live on daily Miralax and now a very limited diet, because of CKD/Stage 3: low carb, low fat, low cholesterol, no caffiene, no dairy, only water, water and more water. I have one glass of tea per day. I can’t eat a lot of meat with my hernias and have been told last month my blood work is terrible and my one kidney is compromised. I feel like I am limited to bread and water and don’t dare try and ask for more specific info as to why for fear of losing another doctor because I ask too many questions.

Yes, I thank God everyday that I survived Septic Shock, so I can be here with my husband, children and grandchildren, I just wish I could get completely well and feel better and have my life back.

So much for life after Surviving Septic Shock, I really do try to stay Positive and Hopeful, but that doesn’t seem to be working very well some days. I just want to be healthy again and able to LIVE my life.

Thank you for listening

Thank you for your response,

Ann

long time. I am 71 years old. Taking only eyedrops. Intraocular pressure is normal again, below 15.

Best regards

ks

My good wishes and luck. Don’t give up! Valerie

regards
christian Wojnas , São Paulo, Brazil

Please share how the parasitosis is detected? I have an early diagnosis of pancreatitis and and would like to ensure this is not a case of parasites.

Thank you,

Dhameera Ahmad

Inderal is in a class of drugs called beta blockers, which by themselves will not cause atrial fibrillation. In fact, Inderal is one of the drugs that can be used to help the symptoms of atrial fibrillation. Atrial fibrillation itself is a very common arrhythmia and gets increasingly more common as one grows older. The likelihood of a recurrence at some point is quite high, and there is no good way to predict exactly when this will happen. In general, atrial fibrillation is not a life-threatening arrhythmia. Nevertheless, important issues, including plans for future management of recurrences if and when they occur, issues related to possibly needing medications to slow the heart rate, prevent atrial fibrillation, or thinning the blood should be discussed with a physician. In some cases where there are frequent symptomatic episodes a procedure called an ablation may be required.

Chiari surgery in the adult realm is used to treat a variety of symptoms often related to the condition. One of the more predictable and favorable results, is relief of Valsalva headaches – cough, sneeze, strain posterior headaches, which can be quite severe and often debilitating. The headache pattern you describe is unusual as a postoperative result in my opinion. I would suggest you revisit the original neurosurgeon or another in your area, and assure there is no misdiagnosis of the original Chiari diagnosis – such as intracranial hypotension, or a postoperative Chiari surgery complication such as cervical instability or basilar invagination. If there are no surgical concerns, then managing your headaches would be more in the headache neurology sphere of treatment paradigms.

Joel

Thanks

One of our physicians offers this response:

Inderal won’t cause it but it’s a common arrhythmia and can come back

Best of luck. Joel

Thanks for the note, we’ll forward your question on for a possible reply.

Joel

i started noticing tingling/numbness in my toes, then feet, then before i knew it, i couldnt walk. there were some symptoms beforehand that i now know were symptoms.

was first diagnosed with CIDP after i had to leave my new job, and just got promoted. once i began treatment for CIDP, my symptoms got exponentially worse. i walked in the first treatment, needed a cane the next week, a walker the next, then wheelchair bound the next! scary stuff!

a few weeks later it started over in my finger tips, then hands… basically a quadrapalegic! couldnt move hardly, couldnt feed myself, transfer myself, go to the bathroom, dress, etc…

went to U of M and was diagnosed with POEMS. started steroid therapy and physical therapy, and eventually an anologous stem cell transplant.

seemed to do the trick (only time will tell). i am fully independent once again. my hands are still weak, but useful now, and i can easily use a walker and almost as easily walk with a cane and ankle braces! =) just need to keep practicing and im gettin better all the time now, just need to get my ankle strength back to be pretty much normal again.

baby is 14months old and doin great. been able to take care of him by myself a while now while my gf goes to work. i see a light

I’m grasping at straws I guess..Every Body is different.
A reply would be wonderful…but I understand if you do not want to comment.
Merry Christmas and God Bless.
Kathryn

My friend was healed. He had it in 2000-2010. Praise God.

Now I need nutrition information, like a good diet for him. And also any symptoms to watch for.
574 246 8888
574 876 4222
Liz Van Camp

In November 2011, we were sitting around the dinner table and I knew something was wrong with my mom. She had gotten a phone call earlier that evening and was acting strange ever since. I told my husband that I thought something was wrong and he got it out of her-she had breast cancer. They still had to do more testing, but there was definitely cancer in one of her breasts. My dad,two brothers,my sister,my husband and I all took the news with a little bit of shock-but we knew she was going to pull through. She ended up having a double mastectomy right before Christmas and she was lucky enough that she wasn’t going to need any chemotherapy. She would have to have a few surgeries,be on medication for the rest of her life and have an injection every 6 months, but that was no price to pay considering her diagnosis. She was there for my son’s 1st birthday and we knew we had that to be thankful for.
My dad was having some health issues with his lungs that had been going on for a couple of years. They never diagnosed him with anything because all of his tests always stayed the same. Eventually, one of the results from his testing showed a decline and they told him he needed to have a lung biopsy. We were all a little worried, especially after everything that we had just gone through with my mom. On Valentine’s Day 2012, we all went out to eat as a family-we made a toast to a better year and to health. February 15th, my dad went in for his lung biopsy. The doctor’s had said that he would only be in the hospital for a couple of days and then he would be home and back to work-little did we know, that was very far from the truth. My dad ended up having to be on constant oxygen in the hospital-they weren’t sure why or what was happening. When the result of his biopsy came back with the diagnosis of pulmonary fibrosis-they told us that what was happening with him was the disease was progressing and that he was going to need a lung transplant. That was his only option. We were shocked,devastated and didn’t know what was going to happen. He was lucky enough to be transferred after a week to The Mayo Clinic of Jacksonville, thanks to a very determined doctor. He had testing done right away to be put on the transplant list. We were very fortunate that nothing else was wrong with him and after a few days of testing, he was put on the list. Then, we just had to wait. I brought my son to the hospital ICU every day to cheer up my dad. He wouldn’t be able to leave the hospital because his condition wasn’t going to get better. My mom spent the night with him every night until she had to have a second surgery done on February 28th. February 29th, my dad’s brother came in from out of state to visit. I picked him up from the airport and when we got to the hospital to see my dad,I knew something wasn’t right. They ended up having to put him on a ventilator and into a medically induced coma and on a paralytic. It was one of the scariest moments I have had to experience. I had to sign papers and we had to watch as my strong,determined dad was being slowly defeated by this disease. They ended up almost losing his pulse and had to resucitate him,but he dodged death that day.
That night we were told that he may not make it through the night. We went back to the hospital and waited in the waiting room. All my siblings,aunts and uncles and cousins waited as we weren’t sure if he was going to make it. My poor mom waited to hear news in another hospital and couldn’t be there with us. When he made it through that night and the next few days-we knew my dad was in there fighting. He had to be deactivated from the list a couple of times because of fevers with no known source. On March 2nd, my mom was finally able to get out of the hospital and be by my dad’s bedside again. This was also the day they took him off of the paralytic and said it could take 6-8 weeks for him to be able to move again. My dad defied the odds and was moving within the hour. He opened his eyes and was trying to communicate with hand signals. It was such a relief to have my dad “back” even though he couldn’t talk and had a cloudy mind. My worst fear though, was that he was going to be awake and they were going to have to keep him off the list. Then, it would have been just a cruel tease having him awake with no chance of survival. He was put back on the list that day but he had to be re-sedated a couple of days later because his stats were very unstable. On March 6th,we were told that the transplant surgeon was going to have to evaluate him. His condition was worsening and he needed more support from the ventilator; the surgeons would have to know what they were getting themselves into if lungs did become available. We sat at my dad’s bedside and cried. This couldn’t be good. We could see my dad’s condition and knew it wasn’t good. We asked ourselves why this was happening and told ourselves this couldn’t be happening. He wasn’t done living life yet and we had too many plans for the future.The surgeon came in and told us that we were running out of time and that it would be a day by day evaluation.
We had been staying at the hotel in the hospital and I went back to the room to take a breather. As I was walking back to the ICU waiting room, a very strange feeling came over me-almost a feeling of anxiousness but a different one then I had been feeling. I went back into the waiting room and my brother came walking down the hall with a big smile on his face. I only knew one reason why he would be smiling. They possibly had lungs to save my dad’s life. The next few hours were a whirlwind-trying not to become too hopeful, but also finally having a glimpse of the future with my dad actually in it. That night, my dad was wheeled into surgery to have a double lung transplant-my dad was going to be okay. My dad had a lot of struggles to overcome over the next month in order to be released from the hospital, but he was alive and he was a fighter.
Almost 6 months later and both of my parents are here and thriving. They are both doing absolutely amazing and everything that we went through as a family still feels like a dream. I can’t believe that this was our family that went through this and I couldn’t be more grateful for the family and friends that were with us through this rollercoaster ride. Most of all, I am grateful for my parents,who didn’t give up in their fight against two diseases that could have easily taken them both from us. This should be a story of hope and encouragement-that you can fight for your life, even if the chances don’t seem to be on your side.

But what is the option? If it were not for the pegasys – I would not be here today. That’s because my #s were really out of control. I take the pegasys every other week by injection. Go to the oncologist every month and have a bone marrow biopsy every year.

Oh well.

Thank you

Carey Deacon

une petite goutte de rosee

I was really happy with the way he focused his attention on me, and not on my mom as some doctors I’ve met in the past have. He asked me questions about my pain level while he was examining my left hip, and could clearly see that something was wrong when he noticed that my right hip was moving a lot normal than my left hip. He talked to me like I was a person rather than talking more to my mom about me as some doctors I’ve met over the years have.

My primary care doctor is just like the doctors at the Mayo Clinic. He talks to me like a regular person even when my mom, or caregiver is in the exam room with me. He is also very kind, and he always shakes my hand when he first walks into the room. Just like Dr. Trousdale did, and even Dr. Berry when we saw him also.

My wife has an ICD and has almost from day one said that it doesn’t quite feel right constantly giving her discomfort. If this is the scenario that you experienced, I would be interested in hearing what Linda found and the corrective action.

Thanks
Jack

Good luck!

Noble and I have been getting caught up by emails and he mentioned your illness. I am glad you are getting better and that God is using it in your life. When I think I’m through with His lessons, He always brings some more, even at age 73.

God bless you both,

Ed

I had a knee replacement and immediately afterwards I fell on it and shattered my patella. The surgeon said that he could not repair it because there was no longer anything to attach it to. I walk with a walker and brace as you did. So, I am just wondering if the type of surgery you had could be effectively performed in my situation.

Nancy

I pray everday for those who are fighting cancer and for those who did not survive, and ask our GOD to bless them as HE blessed me. They will be in my prayers daily. KEEP THE FAITH!
It is the best medicine we could have.

There was no follow up by the doctor, no confirmation or results of the TB test. I was hung out to dry and I believe it was because I am obese.

Just last week my local dermatologist who is treating an autoimmune problem, heard about my inflammation problem. He is from the Mayo Clinic. He wanted to know what Mayo was doing about the breathing problem. He looked at their records and saw blood tests that weren’t run for sarcoidosis and told me to go to a pulmonary dr.

At Mayo Rochester last fall, after my surgery and tests, Dr. Graves suggested I cancel my pulmonary appointment as he thought they would not find anything further than being obese. My spirometry was good. I agreed and cancelled the appointment.

When I came home from the dermatologist last week, I cried because a doctor actually cared!!! Now I don’t know if I should return to pulmonary at Mayo Rochester or make a local appointment in Minneapolis. I know I will NOT see Dr. Graves again. I understand from an infectious disease doctor elsewhere when a patient is out of breath, the first thing they do is run blood tests for fungus.

Before surgery,I asked Dr. Graves if he had run fungus blood tests and his reply was that there wasn’t any need to. What if the surgery would have found a fungus? I had three months of neurophathy from the surgery–and it might have been unnecessary!!!!

My chest scan recently still shows enlarged lymph glands and my breathing is getting worse.

I have previously had major surgeries and cancer diagnoses at Mayo Rochester and a lumbar fusion at Mayo Scottsdale, all with great doctors and results. However, before back surgery, Mayo Rochester sent me to the pain clinic. They gave me exercises which made my back worse. I called and wanted to get an appointment to return sooner than three weeks. I was told, ” We are not an emergency clinic. Come back when you are supposed to.” I am so happy with the fusion at Scottsdale with Dr. Patel.

We are still waiting to get in to see Dr. Fischer at Mayo! We’ve been waiting for 9 mos! Still no appt. I am very very disappointed that Mayo is so slow. I’ve decided to try to fix this on our own with neurofeedback but would still go to Mayo in a heartbeat. Do you know if they do neurofeedback? What are the meds the Rx’d for your daughter, if you don’t mind sharing? We are on salt tabs and fludrocortisone (to increase blood pressure) and neurontin (for pain). Thanks and best of health to you all. You are a fierce and amazing mother. Never give up!

I was there in March for severe hip dysplasia in my left hip along with a tear in one of my major hip muscles. I had been there before, for the hip dysplasia in my right hip, and it took Dr. Dan Berry, who is the best hip specialist who works with Dr. Trousdale, a whole year from when I first saw him in October of 1999 to October of 2000 to decide to do the hip replacement surgery. When I saw him in October of 2000. I cried happy tears when he looked at me, and said, “Can you stay longer?”

When I saw him in March. I was scared that he was going to send me back home after I had come halfway across the U.S. to see him. I saw Dr. Trousdale for a consult during my visit, and he agreed that a hip replacement surgery would be the best option for me. When he left the exam room to go consult with Dr. Berry. I began to pray to have the hip surgery done while I was there because my hip replacement that I had done in October of 2000 had held up really well in almost 12 years, and I was real happy with how it turned out. I knew that a hip replacement surgery would be the best choice for me the second time around. Waiting any longer to do the hip replacement surgery in the condition that I was in would be torture.

I cried tears of happiness when Dr. Berry came back into the room, and said, “OK Samantha. You win. We can do the surgery on Monday.” I actually cried later that night in the hotel room because I was so happy that I wasn’t going to be in pain anymore. I was admitted to Rochester Methodist on Monday March 12th on the day of the surgery, and discharged four days later.

When I had the hip replacement in October of 2000. I stayed at Rochester Methodist for a week, and then moved to the rehabilitation unit at St. Mary’s for two weeks before I was allowed to go back home. I loved the care that I got at Rochester Methodist both the first time, and this last time that I was there. This time I was able to have a hospital room all to myself. The first time I shared a hospital room with another female patient. It was OK, but it was hard at times for me to cope with.

It was wonderful having a hospital room all to myself. I had a great view outside of my window, and the room had been decorated to look more “homey” and “warm” rather than just tacky, sterile white walls, and yucky as most of the hospital patient rooms that I’ve been in, in my whole life, have.

I was able to sleep better compared to the first time that I had stayed there. Even though I had the constant stream of lab technicians, nurse’s aides, and my nurse coming into my room at all hours of the night to draw blood, and check on me. After the number of surgeries that I’ve had in hospitals. That was something that I had grown used to.

Since it’s now six months post-surgery. I’m doing great, and I’m happy that I’m pain free, and I don’t have to worry about my hips deteriorating on me anymore. I have two hip replacements, one on either side of my hip, and I’m back into my activities that I can enjoy doing again. I would heartily recommend going to the Mayo Clinic in Minnesota for anyone that has a complex medical problem that their primary care doctor has a hard time diagnosing.

I remember when I was getting the contrast dye injected into my hip for the MRI scan (which really proved to Dr. Berry that I needed the hip replacement surgery). I was making small talk with the MRI technician, and we were talking about how much I love the Mayo Clinic since I had been coming there, and how wonderful the two hospitals were as well as no other medical care facility matching up to the level of care that the Mayo Clinic gives its patients.

She says, “Yeah, when the Mayo brothers first started this clinic. Their philosophy was that they wanted the patients to have the best care possible.” Kudos to Dr. William, and Charles Mayo for starting the best clinic in the whole world, and changing the lives of the patients who go there. I can imagine that they’re probably smiling in their graves right now if they could see how much their clinics have touched the lives of so many patients all over the world.

email me katielittle1183@gmail.com if you wanna talk more

PLEASE HELP ME MY HEALTH IS NOT BAD I AM A YOUNG 71 WEIGHT 240 HAVE LOST 50 POUNDS IN 14 MONTHS AND EXCEPT FOR THIS I FEEL GREAT,

THANK YOU

Since my daughter had been thought to be ‘lying’ about her symptoms, most doctors have not yet heard of POTS and the few that have think it is a ‘blanket term’ and stems from something psychological, however, the doctors who are doing research in this field say it stems from an autoimmune virus such as EBV (mono) with some form of trauma due to physical or stressful trauma. Look back through your daughters records and see if she had anything like that or maybe even fifth disease as a child.

Good Luck and Prayers
Vickie