It has been a while since the last update...

So since it has been almost 2 months since my last update, I have been doing great!! All I can say is that this is the best my knee has felt in 2 years!! Got the stitches out a few months ago, finished physical therapy before Thanksgiving, and started a new job this past Monday.  I can actually squat now without much pain, still doing stretching on my own.  I go back to the doctors here soon, which I am changing until early next year because of the new job.  I still have some spots where I do not have feeling in my right knee.  I will actually be surprised if it has grown back because it does not hurt at all, the tendonitis has seemed to have gone away for the most part and the stitches look great!

No need for pictures because there is nothing to see except for a scar.  I can't wait until it is not winter anymore so I can get back to mountain biking.

Hopefully I won't wait for 2 months to update again.

2 Weeks after surgery

So it will be 2 weeks since my latest surgery on Monday.  Just a quick update, I am still sore, I can feel the stitches pulling pretty good so I am sure they are ready to come out, which I will be getting that done on Wednesday.  Some of them are already falling out on their own.

I am able to walk without crutches, I am still using an immobilizer when I walk up and down stairs and when I am outside.  Mostly hurting in the front incision.  In Physical Therapy they are moving the scar tissue around in my knee, I can tell that because when they are rubbing it, it is burning, they said that it is normal when the scar tissue is breaking up.

So here is a few pictures of the stitches of my knee from right after surgery.

Days after the 3rd surgery

So it has been 3 days since I have surgery on my right knee to try and remove the disease once again.  Same old thing goes on before surgery, they prep you, mine was around 8 and surgery was at 10, then take you into the surgical room, ask you 20 questions, and knock you out then you wake up in the recovery room.  As I woke up, I noticed some pain but not too much, was in recovery for a few hours until I got to go to my room at around 4:00pm.  I spent 3 days and 2 nights in the hospital from Monday to Wednesday, I was taking some strong pain killers but mostly 500mg Acetaminophen (Tylenol) which I am still taking now.

So in the end, the doctors thinks that he has gotten it all out again.  He opened me up in the front in a small spot, and all the way in the back.  In the front, he said that he took out just a marble sized piece and that was about it there.  In the back, he said that he took a piece out that was about a half of a pint.










There is a picture of how much a half a pint is, to get a reference of what was behind my leg.  After I woke up, I could feel a major difference in my leg, it can almost fully extend straight right away.  I am sure the physical therapy has helped to keep me stretched out as well.  I said that I was gonna ask about getting a piece to take home, well I asked and he kinda laughed and said I am not legally allowed to give you a piece to take home.

Most of the pain is from soreness, I can sorta feel parts that they must have scraped to get the pieces off of, I know part of it was directly on my meniscus so I can feel that pretty good.  But some Tylenol helps to keep the soreness away.

When he came in Tuesday to see me, he came in with a bunch of doctors and his boss, which did his surgery many years ago for his cancer, and he was just asking me questions about my family history to see if anyone else has had anything similar to this disease, which no one has not so he said that he is even still puzzled about it and he has been doing surgeries on it for almost 40 years.

Tomorrow I start physical therapy again, gonna try to get back to work here soon.  I am walking around now without my crutches, still using them to get up and down steps just to make sure I don't fall.  Here is some pitures of before the surgery and after the surgery.

Dr. Weiss's drawings on my legs before the surgery.

 Front of my leg post surgery, didn't take a picture of it yet without the stuff over it.

  Back of my leg post surgery, didn't take a picture of it yet without the stuff over it.

So they decided to give me this kind of stuff to put on my legs, not a wrap, but just tape and a gauze thing, and when it comes off it hurts like heck, just because it rips off all the hairs they didn't shave off before the surgery.  So my next appointment for post-op is Wednesday October 8th, so I will know then anything else to post on here.

Third Times a Charm, I hope

So after visiting the Doctor this past Wednesday (9/10), I will be having surgery for the 3rd time on Monday 9/22.  I just wanted to get it done ASAP because it is hurting pretty bad, even with taking 500 mg of ibuprofen, and it is constantly stiff.  To get to the point, I will be having it removed in the back of my leg like my 2nd surgery, and he will have to cut open part of my leg in the front because a little piece grew back there.  I just told him to do what he has to do.

He and the other doctors in his office are just puzzled at this because they have never seen it grow back this aggressively before, it has literally grown back the same size, if not bigger, than my last surgery back in March and that is only 6 months ago.

This is just crazy that this just keeps coming back.  I asked about my other options that I have, in reality the only other option besides surgery to remove it is a knee replacement.  He won't do that to me because I am way too young for that, I am only 25, and I would rather not have that done right now.  He said another option is to just fire him and go to a different doctor, but in my opinion, I do not really see what another doctor could do besides what he has given to me as options.  I asked about radiation, like treating it sorta like cancer and having radiation done on it.  He said that he, and almost any other doctor won't even consider that because it isn't really cancer and it could actually cause more damage than good to my body.  Like giving me the possibility of having cancer, weak bones, etc.

One thing I do have to agree with him on, is the fact that just be happy it isn't cancer, mine was the "good" news of the day because he has talked to others and bunches of people have cartilage cancer and I am thankful that is not what I have.

When I do have surgery, which I am not too worried about since I have been through it twice already, I am gonna ask if he can give me a piece of it in a jar to take home because I think that would be awesome!!  I am just hoping that when I wake up I am not in much pain because I figure that I will be better off afterwards than I am now.  I am still doing physical therapy right now because it is keeping my leg loosened up and stretched so it doesn't stiffen up on my like last time.  But I will be doing some PT after the surgery as well because I need to get my leg back to normal.

I will update as I go, not sure if it will be before surgery or afterwards.

It has been a while

So it has been a while since I have last checked in a written a blog.  In short I am still doing physical therapy, and since the disease is back my leg has been still sore and I still do have a limp when I walk.  At PT they have also notice that I have tendinitis in my knee ligaments from me walking and standing on it for so long while it is bent and not straight.  One thing the PT told me to do that is helping with that and is relieving lots of pain in my leg, is giving myself a friction massage where it is sore, so basically pushing down as hard as I can a rub it until I feel pain, rub it until the pain goes away and then do it again every few minutes.  Since I have started doing that and having them do that at PT, my knee has been feeling great!

Well my next appointment in Pittsburgh is in September and I will need to get a MRI done to see what it looks like.  I am going to request to see if it is possible that I could do radiation treatment, like they would do with cancer, to see if it would kill the disease without surgery.

3 Months

So it has been about 3 months since I had my 2nd surgery, therapy is going good.  They got my knee to go completely straight with the therapist pushing on it, as in what they call 0 degrees, it is also starting to bend back fairly far, it has went back to 108 degrees so far.

Cutting to the chase, I was at the doctors yesterday and had X-rays done, well, the disease just keeps coming back...  He compared the right after surgery to now, right after surgery there is no sign of it, this time it is starting to come back and Dr. Weiss has no clue why.  I am just hoping that it doesn't bother me so I don't need to have surgery and so that I can start mountain biking again.

That is it for now.

3 weeks after 2nd surgery

So tomorrow marks 3 weeks from my 2nd surgery on my right knee.

I was at the doctors this past Wednesday (March 26th).  He said everything looks good, on my scar anyways and they took out the stitches and put on the white tape.  I guess I have no nerves back there or something because I didn't even feel the stitches coming out, and that is probably why I didn't feel anything after surgery.  Anyways, the only problem that I have now is to get my leg to go straight and bend the whole way back.  Currently it won't lock out to at least 180 degrees and is way less than that and it is only bending back to about 90 degrees and I need to get it back to 140 degrees like my left leg.  So I am currently doing therapy and won't be able to go back to work until I go back and see him on April 23rd, so hopefully by then my knee will be less swollen (which it isn't really swollen) and I can straighten it and bend it back for he most part.

So here is the final results from my surgery and testing of the stuff they took out, understand what you can:

Narrative

FINAL DIAGNOSIS:
BONE AND SOFT TISSUE, RIGHT KNEE, EXCISION
SYNOVIAL CHONDROMATOSIS, CLINICALLY RECURRENT.
GG/acs

ACS/ACS


Pathologist: Karen Schoedel, M.D.
** Report Electronically Signed Out **
By Pathologist: Karen Schoedel, M.D.
3/13/2014 08:28

My signature is attestation that I have personally reviewed the submitted
material(s) and the final diagnosis reflects that evaluation.
_______________________________________________________________
GROSS DESCRIPTION:
The specimen is received fresh labeled with the patient's name, initials BMM,
medical record number and "1 synovial chondromatosis right knee". It consists
of an irregular piece of white-tan hard, smooth lobulated cartilaginous
tissue, measuring 3.2 x 2.8 x 2.3 cm. The cut surface reveals white-pink, firm
to soft tissue with diffuse bone. The specimen also consists of 2 detached
pieces of tan-pink, cauterized, firm fibromembranous tissue, measuring 1.9 x
1.8 x 0.6 cm and 2.0 x 0.9 x 0.8 cm. Representative sections are submitted as
follows:
ADC - bony/cartilaginous mass following complex decalcification
B - soft tissue.
Formalin Exposure Time: 7 hours 0 minutes
Decal Cassettes Formalin Exposure Time: 31 hours 0 minutes.

Grossed by: Leigha Watson, PA student
Reviewed by: Kara Balatincz, PA (ASCP)

LRW//LRW/LRW



MICROSCOPIC:
Microscopic examination substantiates the above diagnosis.

The following statement applies to all immunohistochemistry, insitu
hybridization (ISH & FISH), molecular anatomic pathology, and
immunofluorescence testing:

The testing was developed and its performance characteristics determined by
the University of Pittsburgh, Department of Pathology, as required by the CLIA
'88 regulations. The testing has not been cleared or approved for the
specific use by the U.S. Food and Drug Administration, but the FDA has
determined such approval is not necessary for clinical use. Tissue fixation
ranges from a minimum of 6 to a maximum of 96 hours. Immunohistochemical
stains (where applicable) are performed with appropriate positive and negative
control reactions. Immunohistochemistry assays have not been validated on
decalcified tissues. Results should be interpreted with caution given the
raised possibility of false negativity on decalcified specimens.

ESTROGEN/PROGESTERONE RECEPTORS (ER/PR) TEST DETAILS: Although the use of
ER/PR is primarily for differential diagnostic purposes rather than
therapeutic ones, we utilize the therapeutic criteria for positive and
negative immunohistochemical results below: The test for the presence of
hormone receptor protein is performed by the immunoperoxidase method according
to the ASCO-CAP Guidelines. A positive Estrogen or Progesterone receptor
tumor shows nuclear immunostaining in greater than or equal to 1% of the tumor
cells (i.e. and H-score of 1 or higher). The ER and PR Histologic Score
(H-Score, or HS) is calculated as the sum of intensity of staining times the
proportion of cells staining and has a dynamic range of 0 to 300. The
semiquantitation immunostaining raw data used to calculate the H-score is also
shown above in the report. Generally, the H-score correlates to percentage of
positive cells.
Estrogen receptor antibody SP1, an IVD, is performed using the IVIEW detection
on the Benchmark XT (Ventana, Tucson, AZ). Progesterone receptor antibody 1E2,
an IVD, is performed using the IVIEW detection on the Benchmark XT, (Ventana,
Tucson, AZ).

HER2 IMMUNOHISTOCHEMISTRY TEST DETAILS: 4B5 antibody clone is used as part of
FDA approved Pathway on the Benchmark XT (Ventana, Tucson, AZ) and interpreted
as follows: Score 0 (negative) = No staining is observed or membrane staining
is observed in less than 10% of the tumor cells. Score 1+ (negative) = A
faint/barely perceptible membrane staining is detected in more than 10% of the
tumor cells. The cells are only stained in part of their membrane. Score 2+
(equivocal) = A weak to moderate complete membrane staining is observed in
more than 10% of the tumor cells. This score requires reflex testing by FISH.
Score 3+ (positive) = A strong complete membrane staining is observed in more
than 30% of the tumor cells.

This laboratory is certified under the Clinical Laboratory Improvement
Amendments of 1988 ("CLIA") as qualified to perform high-complexity clinical
testing. Pursuant to the requirements of CLIA, ASR's used in this laboratory
have been established and verified for accuracy and precision. Additional
information about this type of test is available upon request.
PATIENT HISTORY:
Chief Complaint/Surgery Pre-op Diagnosis: RECURRENT SYNOVIAL CHONDROMATOSIS
RIGHT KNEE
Surgery Post-op Diagnosis: RECURRENT SYNOVIAL CHONDROMATOSIS RIGHT KNEE
Surgical Procedure: ARTHROTOMY KNEE
Reason previous hospitalization/surgery = right knee scope

HISTO TISSUE SUMMARY/SLIDES REVIEWED:
Part 1: SYNOVIAL CHONDROMATOSIS RIGHT KNEE
Taken: 3/10/2014 08:52 Received: 3/10/2014 11:43
Stain/cnt Block
H&E x 1 B
DC x 1 ADC
H&E x 1 ADC





TC1

Component Results

There is no component information for this result.

General Information

Collected:03/10/2014 8:52 AM
Resulted:03/13/2014 8:28 AM
Ordered By:Kurt R Weiss, MD
Result Status:Final result

This test result has been released by an automatic process.

Finally, here is some pictures of my knee:

2 Weeks after 2nd Surgery

So today is 2 weeks after having my surgery for the 2nd time, I haven't posted up any pictures of my newest scar with stitches so I will put those up with this post.

I still got no pain back there, just mainly soreness, hard to sometimes fall asleep because of the soreness but its way better than it was last year.  I go to the doctors again on Wednesday so we will see what he all says.

These are pictures for a few days after the surgery.

Days after the surgery

So I had surgery on Monday March 10th, 2014.  I had to be there by 5:00 am and surgery started at about 7:30.  Got there, went back to my pre-surgery room, got IV's and whatnot, they also gave me a patch behind the ear to help with nausea after the surgery with the anesthesia.  So it was a little after 7:00, my parents and my wife, Kayla, were there, they came to get me and drugged me up with some relaxing stuff, and that stuff was awesome, I have never been high before but I am sure that is about what it feels like haha.  We got back to the freezing cold room, I was still laying on the bed, and they still had time before the surgery started so they started showing me stuff around the room which was kinda amusing and kept me calm.  Then they gave me the oxygen mask and I was out until I woke up in the recovery room.

When I woke up I had no pain, no IV injected pain meds or anything.  Got wheeled up to my room, they gave me 2 pain killers, and my parents and Kayla got up to my room.  Then I took one more pain killer around 8:00pm and then only have taken tylonell extra strength since then with some aspirin for blood thinners but that is it.  I then got released on that Tuesday (a day before I was supposed to be released), went back to Johnstown for the night, then headed back to York on Wednesday where I am now at.

So the Doctor said that everything looks good now.  They cut me open like they did before, right over the old scar (which I think is why I didn't really feel any pain except for an ache every here and there).  He took everything out that involves the synovial chondromatosis, he said that the one piece was about the size of a ping pong ball behind my knee and he has no idea how I was even walking on it because my knee couldn't even bend or extend.  He also got the rest of the little pieces.  He took an X-ray before they took me out of surgery to make sure that he got everything which it looks like he did from what he says.  Right from I woke up in recovery, I could see that my knee was a lot straighter than it was before I had surgery.

So I had the nurse and the physical therapist come today, nurse said everything looks good, she showed Kayla how to do the dressing and the ace bandage on my leg.  The physical therapist showed me some exercises, she is gonna call the doctor to see what else I can do.  The nurse is done and doesn't need to come back anymore unless I call, and the physical therapist will be back on Saturday.

My next knee appointment with Dr. Weiss in Pittsburgh is on Wednesday March 26th.

From now to then, Kayla and the pups (Ellie and Hannah) will be taking care of me!

Here is some pictures, I will get some pictures up of my scars and surgery marks when I get a chance to take pictures of them.

Pre-surgery:

After surgery:

Patch behind the ear for my nausea:

On my way home from the hospital:

Came across my doctors Story

Came across my doctors story of how and why he started doing this, pretty interesting read:

http://www.upmc.com/Services/orthopaedics/patients/Pages/kurt-weiss.aspx

Patient Stories - Dr. Weiss Testimonial

From patient to practice: The story of Kurt Weiss*

Kurt Weiss wasn’t planning on going to the doctor’s that week. Like most teenagers, he had other things on his mind. Then at football practice, his leg started to hurt him terribly.

“My mother threatened to cancel my mountain climbing trip with friends if I didn’t go,” he explains. “So to humor her, I went.”

It was a good thing he did. After being diagnosed with sarcoma, Kurt was sent immediately to Mark Goodman, MD, who at that time was the only orthopaedic oncologist in western Pennsylvania. By the age of 15, Kurt received his last rites when his cancer spread to his lungs for the third time.

Then, in 1990, Kurt participated in a clinical trial that saved his life. Developed by researchers at the MD Anderson Cancer Center, the immune-based method was designed to destroy drug-resistant bone tumor cells. The trial worked, and with the help of Dr. Goodman, Kurt Weiss began the long road to recovery.

Unfortunately, fixing Kurt’s leg was no easy task. He developed repeated infections, and finally, Kurt and Dr. Goodman decided together that an amputation was necessary.

“Then, during finals week at Notre Dame, my leg was hemorrhaging every day,” remembers Kurt. “I called Dr. Goodman. He said, ‘Kurt, if I have to come up there and carry you to your tests, you’re going to finish your finals before we get this done.’ ”

Not only did Kurt finish his finals; he also made it to the 1996 Orange Bowl, where he marched as president of the Notre Dame band. After the amputation, he also marched, although he was able to do it even better than before.

“That experience really had a profound effect on me,” explains Kurt. “I had thought I wanted to be an engineer, like my dad and my uncles and my sister. But I really became interested in the pathologic aspects of my disease. And more than that, I admired the people like Dr. Goodman who were looking after me. I wanted to be like them when I grew up.”

And grow up, he did. In 2003, he earned his medical degree and won a Howard Hughes Research Scholars Award to do research on metastic bone tumors at the National Institutes of Health (NIH). Eventually, he joined Dr. Goodman’s practice at UPMC.

Now known as Kurt Weiss, MD, he is one of only a handful of surgeons who specialize in sarcoma. Dr. Weiss is also one of the very few physician-scientists searching for a cure for this disease, and the only one who is also a former sarcoma patient. Part of the orthopaedic surgery team at UPMC, he still spends at least two days in the lab, studying the science behind the disease and looking for the answer that will stop it for good.

At the same time, his colleagues — Dr. Goodman and Dr. McGough — are beginning a clinical research study of artificial limbs that actually hook onto a patient’s real bones, and look and act just like real limbs. Hoping to be a part of the 15-institution study, Dr. Weiss, who owes his life to a clinical trial, was one of the first to sign up.

*Adapted from the Shadyside Voice article entitled “I can help you. This is what I do.”

Well Monday is the big day!!

Five more days

So I will be having surgery on Monday March 10th.  I am ready for it because I can barely walk and my knee hurts like heck.

I already had blood work done, and now all I have left to do is the pre-surgery testing stuff this Friday.  Then it is off to surgery on Monday in Pittsburgh.

They will just be doing the back of my right knee, cutting me open I am assuming to the way they did it before.  They are not going to repair my meniscus as far as I know because of how it is torn, it isn't worth fixing.

Well I will update after I am done with surgery.

Here is some final pictures of my knee before surgery.

Surgery set for Monday 3/10

So I will have surgery on Monday March 10th on my right knee.  Not really too sure how they are going to do it, just assuming that it will be the same as last time opening up just the back of my leg.

This is the report from the doctors, whatever the heck this means I have no idea... Gotta research it...

Narrative

MRI RIGHT KNEE
HISTORY: 24-year-old male status post debridement of right knee
12/17/2012 for synovial chondromatosis, status post fall a few months
ago with hyperextension injury, increased posterior pain, decreased
flexion.
TECHNIQUE: Multiplanar multisequence MR imaging of the right knee was
performed without contrast utilizing the following sequences:
Sagittal proton density, sagittal T2 fat-sat, coronal T1, coronal T2
fat-sat, axial T2 with fat-sat, coronal proton density through the
ACL.
COMPARISON: Right knee radiographs 12/27/2013, 09/20/2013.
FINDINGS:


Menisci: There is a vertical tear of the anterior horn of the lateral
meniscus that extends to the anterior root. Medial meniscus is
intact. Mild medial meniscal extrusion is present.
Cruciate and collateral ligaments: The anterior and posterior
cruciate ligaments are intact. The medial collateral ligament,
lateral collateral ligament and posterolateral corner structures are
intact.
Cartilage: The articular surface is intact without evidence of
partial or full-thickness defects.
Extensor mechanism and tendons:There is minimal increased signal
within the distal patellar tendon. The quadriceps and patellar
tendons are otherwise intact.
Bones: No acute fracture. Bone marrow signals within normal limits
without evidence of infiltrative process.
Muscles: There is no muscle edema or atrophy.
Joint fluid/synovial: There is a moderate joint effusion. Lobulated
intra-articular masses are present about the posterior aspect of the
joint. These surround the posterior aspect of the femoral condyles.
Medially and centrally more focal rounded masses are identified.
These masses demonstrate increased signal on T2-weighted images,
hypointensity on T1-weighted images with areas of signal dropout
consistent with mineralization. The largest rounded lesion measures
approximately 3.4 x 2.5 x 2.7 cm in the transverse, AP and
craniocaudal dimensions. These findings are consistent with synovial
osteochondromatosis.

Impression

IMPRESSION:
MULTIPLE INTRA-ARTICULAR MASSES WITHIN THE POSTERIOR JOINT SPACE,
COMPATIBLE WITH SYNOVIAL OSTEOCHONDROMATOSIS.
MODERATE JOINT EFFUSION.
VERTICAL TEAR OF THE ANTERIOR HORN LATERAL MENISCUS.

So if I read this correctly, and from what my sister told me, I have a tear on the anterior horn on my lateral meniscus, and the disease is still there and if it is synovial osteochondromatosis, it is even more rare than the regular synovial chondromatosis.  My knee is really swollen and hurts like heck right now.  I can sorta feel a tender spot where I think it might be torn at.  Going to call the doctor tomorrow and see if I can get some answers on what is all going on with my surgery now that there is a whole new can of worms opened up...

And it's back...

Guess I never updated from my previous doctors appointment in December, but my knee has a lump on the back of it currently, I can't fully extend it or bend it back and it hurts like heck.  So my doctor told me to make a n appointment 6 weeks later and if it is still there and hurts to get a MRI.

So yesterday I went to the doctors, got a MRI and talked to the doctor.  The MRI was brutal, since my knee couldn't go fully straight, they had to "Jerry Rig" something up, and when they put padding all around it and positioned it the way it should be, the weight on my knee just hurt really bad, that was like 45 minutes of torture.  Then after that I went to talk to the doctor, he looked at the MRI and saw the lump.  It has come back really quick and he really doesn't know why.  So I need surgery again, and hopefully soon, on just the back of my leg.  The new lump is 1".  He is gonna go in a remove that, remove the other part of the disease that he missed previously, and take out the thing behind my knee that he says might be somehow reproducing it.  He said that he has to do some studying on it himself because he hasn't seen anything happening like this before and it wasn't showing up on the X-rays.

So I will update everyone on a date when I get that figured out.