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Q: #1602301 ( Answered,   0 Comments )
Subject: #1602301
Category: Health > Medicine
Asked by: xnex-ga
List Price: $200.00
Posted: 05 Feb 2003 11:52 PST
Expires: 07 Mar 2003 11:52 PST
Question ID: 157706

Request for Question Clarification by pafalafa-ga on 05 Feb 2003 12:01 PST
Hello Xnex,

#1602301 does have a minor significance in the field of genetic
sequencing, but it's certainly not clear from your question if that's
where your interest lies.  Tell us a bit more about what it is you
need, and there's an awfully good chance that I or another researcher
can provide you with the information you're looking for.

Clarification of Question by xnex-ga on 05 Feb 2003 13:09 PST
I am seeking a method of diagnosis and treatment (if necessary) that
does not require the removal
 of the spleen.  Keep in mind that virtualy every test known to
medicine has been performed and there
is no indication that surgery is required for a disease, only for
diagnostic purposes.

An individual or institution that has a reasonable track record
(anywhere in the World) of treating the spleen
successfully without removal. We have searched and reached a dead end.

Do not hesitate to ask for further clarification.

Request for Question Clarification by pafalafa-ga on 05 Feb 2003 13:55 PST
Thank you Xnex, this is helpful.  If you could answer just a few
specific questions for me, I may be able to get you the information
you're after:

1.  What disease or medical condition are you referring to?  If you
don't know the specific name, can you describe the symptoms and health
problems that have been occuring.

2.  Are you certain it is a condition that involves the spleen?  How
do you know this?

3.  Any information you can provide on medical history -- how long has
there been a problem, what steps have you taken thus far -- would be

4.  Lastly, if you are seeking a treatment or diagnosis opportunity
that is geographically close to your location, let us know where you
are, so we can focus our research.

Let us know all you can, and we'll do our best to help out.

Request for Question Clarification by kevinmd-ga on 05 Feb 2003 18:15 PST
Hello xnex,
I agree with pafalafa - if you can provide more information about what
specific disease you are requesting information about, it would help
focus the research.

Kevin, M.D.

Clarification of Question by xnex-ga on 05 Feb 2003 18:49 PST
1. There are no symtoms or Health problems, and I want to keep it that
way.  I look like 45 and I am 69, I can do everything that I did 30
yearr ago and I do mean everything. There is no history of ill health
ever, no surgery, my diet is perfect my snack food is
broccoli, I have never smoked or drink.  I can not imagine feeling any
2. during a physical exam the dr. Thought that the spleen was slightly
enlarged, after a CT scan the spleen appeared normal.
just to be sure I took a pet scan with dye injected and that turned up
negative. They spotted a small mass that they said could
be an infection or cancer. They did more testing, they checked the
lymph nodes and did not find anything. The only course of action to
make a diagnosis is to remove the spleen or to wait and it might go
away.  The doctors are split, because of my robust health and
everything is now normal.  I do not want to take a chance, that is why
i am seeking a diagnosis without removing my spleen. If they remove
the spleen my good health will be over.  I am willing to go anywhere
to resolve this issue. I am in Chicago.  xnex  I covered a lot of this
material in my last clarification!
Subject: Re: #1602301
Answered By: pafalafa-ga on 05 Feb 2003 20:43 PST

Thank you for your question, and for being so responsive to the
requests for additional information.

Let me begin, first of all, by wishing you continued good health and
long life.  Hopefully, your current situation can be resolved with
minimal disruption to your well-being.

Secondly, I must say at the outset that, although I am a good
researcher, and a biologist to boot, I am not a doctor.  I am
providing here some information that I hope will be useful, but urge
you not to make any decisions regarding your health without first
discussing this information with a medical professional.

And thirdly, the answer I am providing here should be seen as a
beginning.  If, after looking it over, you want clarification of
anything here, just let me know through the "Request for
Clarification" button, and I will be happy to provide additional
information as part of this service.


Direct biopsies of the spleen -- where a piece of tissue is extracted
for detailed examination in a medical laboratory -- are not common. 
The spleen is prone to profuse bleeding if ruptured, and doctors have
traditionally opted for either (1) non-invasive approaches, such as
the CT scan or other imaging techniques, or (2) removal of the entire
spleen for further examination.

This, apparently, is the situation you find yourself in.  Your doctors
have made use of option (1), and failing to make a definitive
diagnosis, are now contemplating option (2).  However, there is some
middle ground that you should be aware of.

There are techniques for diagnosing or treating spleen-related
abnormalities that do not involve full removal of the organ.  In
brief, these are additional imaging techniques which may provide
further useful diagnostic information, biopsy techniques that remove
only a small bit of tissue from the spleen, or directed energy that
can destroy diseased tissue.

I am listing below a number of sites that provide detail on these
techniques as they regard for the spleen.  The text is taken directly
from the sites themselves, except for text that appears in brackets [
] which is text that I wrote.  I've also included a few titles of
articles that were mentioned and that sounded interesting, but for
which there was no further description available.

Again, I hope this information is of use to you, and I would encourage
you to request clarification for anything about which you would like
additional information.

Best of luck to you.  


[fine needle aspiration can be used to sample spleen tissue without
removing the entire organ]

Lymph nodes and spleen may be examined by fine needle aspiration
biopsy (outer diameter of needle 0.64-0.72 mm)... In the case of liver
or spleen biopsy, there is a considerable risk of severe bleeding. The
procedure should only be carried out by an experienced team,
meticulous control of coagulopathy, platelets number and function, and
post-biopsy close follow-up must be performed.


Flow-cytometry-enhanced fine-needle aspiration biopsy of the spleen 

Anthony Bonifacio, MD; Ronn E.A. Goldberg, MD, FRCPC; Bruce J.
Patterson, MD, FRCPC; Masoom Haider, MD, FRCPC

Can Assoc Radiol J 2000;51(3):158-62. 

Conclusion: Flow-cytometry-enhanced fine-needle aspiration of the
spleen is a safe and useful tool for the interventional radiologist.
In our institution, it evolved as the result of effective teamwork
between diagnostic radiologists and pathologists. Flow cytometry
promises to be increasingly useful in the diagnosis and management of
lymphoproliferative diseases.


Fine-needle aspiration....a comparatively nontraumatic aspiration of
diagnostic cellular or liquid material from deep or superficial body
sites by means of a fine needle of 20 to 25 gauge. The aim of the
method is to obtain material for pathological, microbiological, or
biochemical examinations. Fine-needle aspirations can be done as blind
percutaneous biopsy or guided by fluoroscopy, ultrasound, CT or MR.
Major complications are bleeding, needle track seeding, pneumothorax
and pancreatitis.

Boleslaw Papla, Teresa Wolska-Smolen, Aleksander B. Skotnicki, Piotr
Visceral Leishmaniosis Diagnosed by Trephine Biopsy. A Case Report 

A case of visceral leishmaniosis has been reported in a 41-year-old
man. The diagnosis was made on the basis of trephine biopsy and fine
needle aspiration biopsy of the spleen.

Pol.J.Pathol. 1998,49,3,Case Reports 

[A microphotograph of spleen cells that were extracted with a fine
needle biopsy, show signs of hemophagocytosis, typically a disease of

Three active macrophages, all of them with signs of hemophagocytosis,
mainly engulfed erythrocytes. Material from a fine needle aspiration
biopsy of the spleen.

[high energy radio waves were used here for the ablation (removal) of
tumors on the spleen]

Radiofrequency Thermal Ablation of a Splenic Metastasis

Bradford J. Wood, MD, and Susan Bates, MD

Effective local ablation of large tumors with radiofrequency has been
made possible by recent advancements. Tumor ablation with
radiofrequency has been described mainly in the liver, but also
recently in the kidney, adrenal gland,
lung, and breast. A rapidly growing splenic metastasis from renal cell
carcinoma was effectively treated percutaneously, with US guidance.
Focal splenic disease may not be a common indication for ablation;
however, further work is necessary to evaluate the safety and efficacy
of this procedure in this setting.

[a report of a non-invasive technique for measuring iron in the

Liver Iron Susceptometry with the Hamburg SQUID Biosusceptometer

The non-invasive quantification of liver (and spleen) iron
concentration by means of an instrument like the Hamburg
Biosusceptometer can replace the traditional method of taking a biopsy
in order to evaluate the iron overload in patients suffering from
Hemochromatosis and Thalassemia. This technique, also called magnetic
biopsy measures the difference between the magnetic susceptibility of
the liver and that of water. The iron concentration is calculated from
the relation between the susceptibility of the liver and the specific
susceptibility of the paramagnetic iron complex of ferritin and
[a few reports that appear relevant, but are titles only]

[this one mentions minilaparoscopy, where a tiny camera is inserted
into a small incision and guided through the body to the spleen, to
assist in the biopsy]

Denzer U, Helmreich-Becker I, Galle PR, Lohse AW. 

Minilaparoscopy-guided spleen biopsy in systemic disease with
splenomegaly of
unknown origin.
Endoscopy. 2002 Jun;34(6):495-8.

[this one makes use of US--ultrasound--to assist in the biopsy]

By Sergio Muraca, Peter G. Chait, Bairbre L. Connolly, Kevin M.
Baskin, and Michael J. Temple

US-guided Core Biopsy of the Spleen in Children 
Radiology 2001 218: 200-206. 


Request for Answer Clarification by xnex-ga on 09 Feb 2003 15:15 PST
I do not know, but it appears to me in the quest of finding an
accurate and safe method to diagnosis the spleen, I do not think that
we are very close to maklng that all important decision.  Are these
answers all the available alternatives? Is there a non-invasive
method?  Of the methods suggested, is there a way of rating them
according to accuracy or safety.

 I understand with the recent technological improvment of the MRI that
there is a non invasive way to diagnose the spleen.  I have not been
able find it.


Clarification of Answer by pafalafa-ga on 10 Feb 2003 07:03 PST
Hello again.  Your request for clarification will allow me to focus on
getting more precise information for you.  Please allow me a few days
to make a thorough investigation, and I will reply as soon as I have
some new information for you.

Clarification of Answer by pafalafa-ga on 11 Feb 2003 12:50 PST
Hello again.  From your clarification, it appears you are looking for
information about non-invasive imaging techniques that could assist in
diagnosing conditions of the spleen.  Ultrasound, CT and MRI are all
used as diagnostic tools for the spleen, often in combination with one
another, and with radiological techniques.  I am including several
links below that discuss recent uses of these imaging techniques.

However, I cannot offer you any "ranking" information -- if one
technique were clearly superior to others, it would become the tool of
choice among doctors.  Instead, each patient's specific circumstances
must be evaluated to determine the most appropriate diagnostic
approaches.  You will need to work directly with your doctors in order
to rank the different possibilites.  But you can assist in the process
by bringing to your doctors the information here with which they may
-- or may not -- be familiar.

Here are the links and study summaries, with my own comments in


[although CT is the imaging technique most often used for the spleen,
MRI is finding increasing use...this study compares the two]

Magnetic Resonance Imaging in Primary Lymphoma of the Spleen  (June

Ultrasonography and computed tomography (CT) of the abdomen
a solid, large splenic mass with lobulated margins without other
abnormalities. Magnetic resonance imaging (MRI) showed a splenic mass
cm in diameter with isointensity relative to normal splenic parenchyma
in T2-weighted sequences, with heterogeneous enhancement after
of gadolinium. Magnetic resonance imaging also disclosed
local invasion of diaphragmatic and pleural surfaces, which was not
demonstrated on ultrasonograms or CT scans.

Magnetic resonance imaging is important in the diagnosis of the focal
lesions of the spleen. For example, MRI has been shown to be reliable
in differentiating hamartomas from hemangiomas of the spleen

In our case, MRI showed invasion of diaphragmatic and pleural
which ultrasonograms and CT scans did not reveal. In conclusion, CT is
currently the diagnostic test of choice for evaluation of the spleen;
however, MRI is being used increasingly. 


[radiological imaging techniques -- sometimes called liver/spleen
scans -- can be used as a diagnostic tool]

Radiological Case of the Month (summary from:  Appl Radiol

Technetium-99m-labeled sulfur colloid scan demonstrated absence of
normal splenic uptake in the left upper quadrant and multiple areas of
abnormal radiopharmaceutical uptake in the left hemithorax.


[Ultrasound imaging can, in some cases, distinguish cancer from
non-cancer growths in the spleen]

Abdom Imaging 26:529-532 (2001)

Splenic lymphoma: differentiation from splenic cyst with
H. Ishida, K. Konno, J. Ishida, H. Naganuma, T. Komatsuda, M. Sato, S.

Background and Methods: Lymphoma can be nearly anechoic and mimic a
on ultrasonography (US). To investigate whether this phenomenon occurs
at the level of the spleen, we analyzed the US findings of 38 cases of
splenic lymphoma and 16 cases of splenic cyst.

Results: (1) With regard to shape, echogenicity of the lesion, and
of posterior echo, there was no difference between splenic lymphomas
splenic cysts. However, the boundaries of the lesions were indistinct
splenic lymphomas and distinct in splenic cysts. (2) Blood flow
and vascular penetration were seen exclusively in splenic lymphomas.

Conclusion: The mode of boundary echo (distinct or indistinct)
distinguishes splenic lymphomas from splenic cysts. Color Doppler US
increases the diagnostic confidence of US.


J Comput Assist Tomogr 2001 Sep-Oct;25(5):770-6 

[MRIs of the spleen can be improved with the use of contrast-enhancing
agents -- Mass General Hospital appears to do a lot of work in this

Splenic imaging with ultrasmall superparamagnetic iron oxide
ferumoxtran-10 (AMI-7227): preliminary observations.

Harisinghani MG, Saini S, Weissleder R, Rubin D, deLange E, Harms S,
Weinreb J, Small W, Sukerkar A, Brown JJ, Zelch J, Lucas M, Morris M,
Hahn PF.

Department of Radiology, Massachusetts General Hospital and Harvard
Medical School, Boston, MA 02114, USA.

PURPOSE: Ferumoxtran-10 (ultrasmall superparamagnetic iron oxide;
Combidex, AMI-7227) is a long-circulating MR contrast agent with
reticuloendothelial uptake known to enhance tissue T1 and T2
relaxation rates. The purpose of this study was to assess the effect
of ferumoxtran-10-enhanced MRI in evaluating focal splenic lesions.

RESULTS: Additional information was provided by
ferumoxtran-10-enhanced images in 15 of 18 patients. In 8 of 15 (53%)
patients, improved lesion detection (i.e., number of lesions) was
obtained on contrast-enhanced images. Improved lesion visualization
(i.e., conspicuity) was noted in 11 of 15 (73%) of patients. In 10 of
15 (67%) patients, postcontrast imaging provided additional
information leading to lesion characterization. Staging of disease and
patient management were affected in 5 of 15 (33%) and 6 of 15 (40%)
patients, respectively.

CONCLUSION: Ferumoxtran-10 is a promising contrast agent for the
evaluation of focal splenic lesions.

Xnex,  I hope this is the type of information that will meet your
needs, and help you and your doctors come to a well-informed decision.

Let me know if there's anything else I can do here.

Request for Answer Clarification by xnex-ga on 16 Feb 2003 22:52 PST
Thank you pafalafa-ga for your answer. Of course we are seeking a
non-invasive solution,
but if that is not possible, any safe way that achieves a diagnosis
without removal of the spleen is
      I notice that your reference of using the MRI for diagnosis of
the spleen has a date of June 2000.
My mention of the MRI's technological improvment was very current that
I picked up as a news item
just a couple of weeks ago. I wish that I could find it, my best guess
is Scientific American or
M I T Technology, late 2002 or 1/2003????   There will be another
clarification around WED.

Would this link be relevant?

Clarification of Answer by pafalafa-ga on 17 Feb 2003 08:21 PST
Thank you Xnex.  I'll look forward to seeing what information you have
to add later this week.  In the mean time:

1.  I tried the link you gave, but it won't open up for me.  Perhaps
the site is temporarily down.  I will try it again later.

2.  Here's a recent news article about advances in MRI.  There is
nothing specific here to imaging the spleen, but perhaps this is what
you saw recently:

Thu Jan 30 15:32:04 2003 Pacific Time

      Cardiac MRI Finds Small Areas of Heart Cell Death Missed by
Nuclear Imaging Techniques

       DURHAM, N.C., Jan. 30 (AScribe Newswire) -- Researchers from
Duke University Medical Center and Northwestern University Medical
School have demonstrated that cardiac magnetic resonance imaging (MRI)
technology can detect small areas of heart muscle death that cannot be
detected by commonly used imaging techniques.

       Their finding is important, the researchers said, because these
small areas of muscle cell death, known as infarcts, can be early
indicators of future, more severe heart problems.

       In their study involving 91 patients with known or suspected
coronary artery disease, the researchers found that the traditional
nuclear imaging technique, "single photon emission computed
tomography" (SPECT) detected only 53 percent of these microinfarcts
that were detected by cardiac MRI. Additionally, 13 percent of study
patients with microinfarcts were shown to have none when SPECT alone
was used. [there's more of the article at the link above]

Request for Answer Clarification by xnex-ga on 21 Feb 2003 06:23 PST
Time is getting short. A search directed to medical schools worldwide,
Medical journals such as Lancet, BMJ, AMA, et al. Research Institutes
worldwide. Covering all the possibilities in the area of Hemotology
and Oncology for a safe diagnosis of the Spleen without removal.

The last word of mouth that I heard was that Cuba is very advanced in
that area!

Clarification of Answer by pafalafa-ga on 21 Feb 2003 08:10 PST
Hello again.  I hope you are making good progress, and that the
information here has been of use.  Since time seems to be of the
essence, I am providing some fast feedback to your latest request.

I have searched all recent news articles and medical publications for
relevant reports.  General searches on topics such as "oncology" would
result in literally tens of thousands of items.  But by focusing on
recent reports pertaining specifically to imaging and/or diagnosing
conditions of the spleen, I have come up with the following additions
to those I have already provided:


Center first to offer virtual colonoscopy
NORMA MENDOZA, Of the Intelligencer February 15, 2003 

Dugan Radiology at The Imaging Center in Maryville is the first place
in the Edwardsville area to offer virtual colonoscopy, a new procedure
to screen for colon cancer...
This is the beauty of the virtual colonoscopy. It is an external scan
of the body, so if there is an obstruction in the colon or if the
colon has twists and turns the endoscope cannot pass, the entire
length of the colon is still visible, as well as other organs in the
area such as the liver, spleen and kidneys.

1: J Clin Ultrasound 2003 Mar;31(3):152-5 

The small spleen: Sonographic patterns of functional hyposplenia or

Gorg C, Eichkorn M, Zugmaier G.

Department of Internal Medicine, Philipps University,
Baldingerstrasse, 35043 Marburg, Germany.

PURPOSE: Functional hyposplenia or asplenia (FAS) can be associated
with potential fatal infections. The diagnosis of FAS is traditionally
made on liver-spleen scintigraphy and finding Howell-Jolly bodies
within erythrocytes. In this retrospective study, our goal was to
identify any characteristic sonographic findings of the spleen in
patients with FAS in an attempt to determine whether the diagnosis of
FAS can be made sonographically.

CONCLUSIONS: Sonographic findings in the spleen of patients with FAS
are characterized predominantly by a small spleen with absence of
parenchymal vascularization on color Doppler sonography in most cases.
Future prospective studies will be necessary to confirm these findings
and to determine whether FAS can be diagnosed reliably with


Clin Nucl Med 2003 Mar;28(3):176-179 

Unsuspected Skeletal Sarcoidosis Mimicking Metastatic Disease on FDG
Positron Emission Tomography and Bone Scintigraphy.

Ludwig V, Fordice S, Lamar R, Martin WH, Delbeke D.

Department of Radiology and Radiological Sciences,* Vanderbilt
University Medical Center, and the Departments of Radiology.

Sarcoidosis is a disease process of unknown cause that exhibits
heterogeneous clinical manifestations. Although the mediastinum and
lungs are most commonly involved, the granulomatous process may also
affect the skeleton, skin, eyes, kidneys, spleen, and liver. A
51-year-old woman with low back pain and no history of cancer was
found to have a suspicious lesion at L4 on magnetic resonance imaging.
Findings of bone scintigraphy were consistent with multiple
metastases, and computed tomography of the chest identified two small
indeterminate pulmonary nodules. Similarly, findings of
fluorodeoxyglucose positron emission tomography were consistent with
widespread skeletal metastases, but a primary tumor was not
identified. Biopsy of a left femur lesion was diagnostic of active
sarcoidosis with no evidence of cancer.

[this article is likely not related to your medical situation, but I
included it for the sake of completeness, as it does involve new
diagnostic measures pertaining to the condition of the spleen]

Semin Hematol 2003 Jan;40(1):4-12 

Prognosis and prognostic factors for patients with chronic myeloid
leukemia: Nontransplant therapy.

Hasford J, Pfirrmann M, Hehlmann R, Baccarani M, Guilhot F, Mahon FX,
Kluin-Nelemans HC, Ohnishi K, Thaler J, Steegmann JL.

Forschungsgruppe CML, Institut fur Medizinische
Informationsverarbeitung, Biometrie und Epidemiologie (IBE),
Universitat Munchen, Munchen, Germany.

Reliable knowledge about an individual's prognosis is needed to select
the appropriate treatment for patients with chronic myeloid leukemia
(CML). The New CML score using age, spleen size, blast cell count,
eosinophil count, basophil count, and platelet count shows good
discrimination for survival (96, 65, or 42 months, P </=.0001) and has
been thoroughly validated. Careful analyses indicate that the New CML
score is considerably more precise in identifying high-risk patients
than the Sokal score.


[I've also included this article because it focuses on non-traditional
medicines for the spleen, and I thought it might be of interest to you
and your medical team]

1: Zhongguo Zhong Xi Yi Jie He Za Zhi 2001 Jul;21(7):510 

Study on effect of spleen invigorating, qi benefiting and dampness
removing Chinese drugs and Western medicine on serum epidermal growth
factor in chronic atrophic gastritis patients

[Article in Chinese]

Sun LM, Qiao Q, Si JM.

Department of Gastroenterology, Sir Run Run Shaw Hospital, Zhejiang
University Medical School, Hangzhou 310016.

OBJECTIVE: To investigate the effect of various combinations of Spleen
invigorating and Dampness removing recipes and western medicine on
level of serum epidermal growth factor (sEGF) in patients of chronic
atrophic gastritis (CAG).
METHODS: By means of Syndrome Differentiation three groups were
divided as (1) Spleen invigorating I group (SI-I); (2) Spleen
invigorating II group (SI-II); (3) Dampness removing group (DR); (4)
western medicine group (WM); (5) healthy volunteers served as normal
control group. The changes of symptoms and sEGF level were determined
and compared between groups as well as before and after treatment.

RESULTS: The sEGF in various groups of CAG were higher than that in
the normal control (P < 0.01). In patients of SI-I and II groups,
symptoms and pathological manifestations were improved significantly
(P < 0.01), and sEGF dropped markedly after treatment (P < 0.01 and P
< 0.05). The level of sEGF in DR raised after treatment (P < 0.05),
but the level of sEGF in WM group lowered insignificantly.

CONCLUSION: Inflammation of gastric mucosa could cause responsive
elevation of sEGF in CAG patients. After treated with Spleen
invigorating and Dampness removing Chinese drugs, the symptoms of CAG
improved, simultaneously with the restoration of sEGF. sEGF could be
taken as a sensitive index of the prognosis of CAG.


I found nothing specific to Cuba.  If you have any additional
information on this that would help me focus a search, let me know.

Best of luck.

Request for Answer Clarification by xnex-ga on 21 Feb 2003 09:14 PST
What would be the most efficient and productive way to arrive at a
answer to this problem?

Regardless of the number of methods presented for consideration to
diagnosis the spleen, it  requires a superior knowledge that we do not

Doctors do not say it does not exist, they just do not want to take
the time. The sources I mentioned, Medical schools, Medical journals,
medical research institutes would be the places to research with a
defined objective according medical people I have talked to, diagnosis
of the spleen.

I understand the Cuba lead was focused on Havana University

Clarification of Answer by pafalafa-ga on 21 Feb 2003 09:44 PST
It seems to me that, for a person in your situation, there are a few
ways of moving forward.

One, which we are pursuing here, is to find the best, most up-to-date
information, regarding methods for diagnosing conditions of the
spleen.  I have provided a great deal of information that is hopefully
useful to you.  The information comes directly from the types of
sources you identified -- Medical schools, Medical journals, and
medical research institutes.  If there is certain additional
information you would like, please let me know with a very specific,
focused request.

Another approach is to engage the medical community of experts to
assist you in your decision-making.  This is something only you and
your doctors can do.  You say your doctors do not want to take the
time for you -- well, they should, and they must.  They are the ones
with the "superior knowledge" you are seeking.

If your current medical team is not assisting you to your
satisfaction, please consider asking for referrals to other experts in
the field, or even to other  generalists for a second opinion.  I know
from my own experience that it is sometimes necessary to be insistent
with doctors on having things done as you would like them to be done
(and conversely, on NOT having things done when you don't want them to
be done).

There is a limit to how much help I or anyone can offer you from a
distance.  You must work with the resources that are directly at your
disposal -- your team of doctors and their superior knowledge -- to
get the fullest set of options for diagnosis and treatment.

Please do not give up on this.  A combination of information, such as
I have been providing, and firmness with your doctors may well result
in the best type of outcome.

If you need more information, just let me know.  And again, a
specific, focused request is your best bet for moving ahead on this.

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