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Monomelic Amyotrophy


DonH

Question

ALS Variant?

 

I'm a Vet Wife. I post on behalf of my husband, I'm his note taker at doctor's appointments and consults.  I'm his support system and all around cheerleader. Lord knows we have had our VA battles. All these years after Vietnam, the onset of my husband's emerging illnesses, obviously percolating internally has emerged  one after another. We've seen subtle signs and some not so subtle. But didn't; know what those sign meant. The VA didn't do a very good job of educating the older veterans about what to be aware of regarding SC disabilities,

My veteran husband's a Purple Heart Vietnam Veteran  served in US Marine Corps. My husband  has several service connected disabilities. My husband diagnosed with Monomelic Amyotrophy recently; it is a Motor neuron (MND) disease that is the umbrella covering all type Motor neuron diseases and variants. To which ALS/ Amyotrophic Lateral Sclerosis and variants falling under the same umbrella as being classified as Motor Neuron Disease (MND). As exhibited in cases of muscle loss: Monomelic Atrophy.

ALS causes degeneration of nerve cells in the brain and spinal cord that leads to muscle weakness, muscle atrophy, and spontaneous muscle activity. The VA Doctors pondered whether my husband had ALS or MS. Yet, the Neuromuscular Head Physician conceded that my husband's illnesses was an ALS variant because his illness fell under the umbrella of Motor Neuron Diseases as did ALS......is a Motor Neuron disease. ???? We don't know how VA will decide.

Other complicating issues:

*Spinal issue (S Curve of spine)

*Multi focal motor neuropathy associate with Diabetes 2 is a part of the mix/entwined as well. 

 

However, most severely is the inability of identifying the exact reason for the monomelic atrophy.

Although it was hoped a more exact finding will be determined when all results of updated blood tests were in.

On May 2017: *Blood test are in; determination that no immune diseases are present

Possible treatment of an intravenous treatment once every three months or medications with steroids would be beneficial. No effective treatment available.

 

MMA

Diagnosis. 

Inflammatory Arthritis is Part of the neuropathy (Special kind of neuropathy)

As well as severe spine problems. Very rare complicated illnesses intersecting and exacerbating primary and/or secondary with veteran's service connected disabilities.

 

Monomeric atrophy......Veteran has lost the use of his right hand and right forearm weakened and wasting away.

One limb atrophy

See notes…..described as one limb muscle atrophy

 

Spinal cord (S curve of spinal cord) compression on top on addition the monomeric

 

Toxic agent like Agent Orange could more likely than not" a contributor for neuropathy.

 

Immune diseases (no)

 

Deterioration. Of bones on vertebra

Spondylosis...inflammatory arthritis 

Acts like spinal cord injury 

 

(Findings of EMG) EMG to confirm the diagnosis ( Neuromuscular VA Physician at Michael E. DeBakey VA Medical Center, Houston, Texas)

Table of Rated Disabilities

Disability

Rating

Decision

Related To

Peripheral Neuropathy, Left Lower Extremity

 

Not Service Connected

Denied as…. early as 2011… Yet, D to pinpoint as severe symptomatic complexities of Monomelic Amyotrophy variant of ALS in 2017….should be cued.

Peripheral Neuropathy, Right Lower Extremity

 

Not Service Connected

Denied as…. early as 2011…  Yet, ID to pinpoint as severe symptomatic complexities of Monomelic Amyotrophy variant of ALS in 2017….should be cued

Agent Orange - Vietnam

Neuropathy, Left Upper Extremity

 

Not Service Connected

Denied as…. early as 2011…  Yet, ID to pinpoint as severe symptomatic complexities of Monomelic Amyotrophy variant of ALS in 2017….should be cued

Bilateral Hearing Loss (claimed as diminished hearing)

0%

Service Connected

 

Tinnitus (claimed as ringing in both ears)

10%

Service Connected

 

headaches

 

Not Service Connected

 

depression

 

Not Service Connected

 

skeletal arthritis aching of the joints (unspecified)

 

Not Service Connected

Arthritis denied as…. early as 2015…  Yet, ID to pinpoint as being symptomatic complexity of Monomelic Amyotrophy variant of ALS in 2017….should be cued

post traumatic stress disorder (PTSD, also claimed as depression and anxiety)

30%

Service Connected

PTSD - Combat

Hypertension

0%

Service Connected

 

Neuropathy, Right Upper Extremity

 

 

Rectal carcinoma claimed as rectal cancer, a soft tissue cancer)

 

Not Service Connected

Agent Orange - Vietnam

Still on since  12/11/14 appeal

Remand 5/15

scar, shrapnel right knee

10%

Service Connected

 

09/18/2013

diabetes mellitus type II

10%

Service Connected

Agent Orange - Vietnam

07/06/2015

prostate cancer

100%

Service Connected

Agent Orange - Vietnam

07/06/2015

erectile dysfunction

0%

Service Connected

 

07/06/2015

 

Neuropathy, Right Upper Extremity Denied as…. early as 2011…  Yet.ID to pinpoint as severe symptomatic complexities of MonomelicAmyotrophy variant of ALS in 2017….should be cued Agent Orange – Vietnam

 

Edited by DonH
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The long list of soft tissue AO sarcomas are available here under a search.

It would have an exact medical term.

Did the Rectal cancer metastasize from the Prostate cancer? Probably not but one more way to try to get it SCed. if it did. 

Prostate 100% ratings can be lowered.

Matt Hill ( vet lawyer and member here,) has a brief article on this and the VA has proposed to reduce many AO Prostate cancer vets with 100%.

https://www.hillandponton.com/video-blog-prostate-cancer-ratings/

I hope the Agent explained that and there might be more to his cancer rating than we know here.....

Can you give the BVA Docket # and Citation #? We can read the remand and hopefully help more.

Is he employed? If not does he get SSDI and is it solely for an established SC ? If not employed has the agent suggested filing for TDIU?...Unless there is medical evidence that would continue the prostate 100% rating.....

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Did the Rectal cancer metastasize from the Prostate cancer? That's a possibility when considering the nearby location of both organs. A good IMO could argue that point to make the of connection.. However, the rectal cancer was discovered first.  HIs high PSA was not noted until afterwards. It was his psychiatrist that noted his extremely high PSA. And from there began the testing/bioscopy for Prostate Cancer.

I have read BVA Opinions affirming the relationship between Colorectal/rectal cancer and the Prostate with equipoise (spelling) justification; usually an IMO making that argument. Our argument in appeal is that rectal cancer is a soft tissue cancer and its particular type of soft tissue is not in dispute as being excluded from the listing of soft tissues cancers that were excluded.

My husband was sent to an outside C & P Exam---but, doctor confirmed that the 100% should continue.

No, my husband is not employed. When he became ill to the point that something was obviously wrong, he was retired by then. Upon retrospect, his job was actually a sheltered environment....that's a concluding reason as we reflect why he was able to last on the job until retirement.--because his attitude could be unreasonable when he experienced flair ups in temperament.

I don't have the BVA Docket # and Citation # at hand. However, I will work on trying to locate it before the week is over. We are leaving to go out of town for family reasons so I will update later.

Thanks for all the insights!

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With the Butt Cancer DX predating the PC SC Award, you're attempting a reverse Nexus. I'm not aware of any such successful Claims. As Always, I could be wrong but I don't think so. What was the date of his PC DX?

Any chance you could post a redacted copy of the C-Rectal C & P DBQs and the actual Rating/Denial Decisions? I take it that C-RC is not a listed AO presumptive, so in your husband's case, it has to be Secondary to a PRIOR Awarded SC Condition.

Generally speaking from what I've read, once a person has a DX of a certain type of cancer, is treated and the Cancer goes into remission, any future Cancer DX of another organ or internal body area is still referred to as being a metastasis of the Original Cancer DX.

Your husbands PC SC was based on an AO Presumptive, ergo, no need for a Direct or Secondary Nexus.

A good friend 70, is in Hospice with PC, maybe a week left at best. He had Radiation about 6 yrs ago, everything good till about 12 mos ago when PSA went off the charts. The PS has since metastasized to his skull, spine, lung, Bladder, Stomach, and LIVER. They tried hormone therapy, another round of chemo and even an experimental drug, no help.

Remind your husband that as of last weeks Cancer Clinicians Periodic up-date, no real (1) procedure has been determined as any better than another for treating PC, as far as Morbidity and Mortality. That being the case, especially at 75, removing the Prostate would result (besides the Physical Side-effects) in his 100% SC being reduced after about 6 mos to his actual CSC which would include a 20 or 30% PC Rating.

Semper Fi

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Prostate removal not possible due to no spinchter/ butt hole is stitched ....,it/the spinchter had to be removed during the surgery to remove the cancer from his rectum; however, what began as a Laproscopic surgery went bad..,, the laparoscopic needle went haywire and off course because of running into a build up of scar tissue and my husband's colon was punctured.....they had to change course in midstream to do traditional surgery. He bled profusely and lost a lot of blood so they had to do blood transfusions. The surgery lasted way longer than it should have. My husband went into surgery about 9:30 or 10 am and the surgery ended  around  9:45-10 pm. My husband is, now, anemic as a result of having lost so much blood and takes a medication for it.

It was a horrific ordeal! Even though they/VA Doctors had cautioned my husband of the possibility of losing his spinchter... but the odds were good that he may not.

To add insult to injury, upon follow up consult after surgery, we found out that the radiation prior to surgery had zapped the cancer. My husband and I were dumbfounded to  learn this information too late. My husband was upset because he stated had he known that the radiation had gotten all the cancer, he would have liked to be given the opportunity to weigh in to thereby not move forward with the surgery. To that effect, he would still have his spinchter and not have to wear a colonoscopy bag!

We are dumbstruck that the VA doctors would schedule a laparoscopic surgery after a patient has been given radiation. Radiation builds up scar tissue so the doctors should have known my husband wasn't a good candidate for high tech surgery and just stick with traditional surgery. Although, it was obvious after the fact that the right hand didn't know what the left hand was doing to pursue surgery when the radiation had already done the job! 

Upon further reflection my husband remembers feeling a premonition that something was not going to go well because the operating doctor had become extremely upset because the operating room had not been prepped timely for the surgery that morning so surgery was late getting started. My husband stated he almost asked the surgeon for a rain check a postponement due to the surgeon's angered upset mood.

Regarding Rectal Cancer being determined for a presumptive......reading over BVA cases, it can be logically connected if not presumptive via direct causation of AO exposure.

Having no spinchter makes any further surgery on the prostate risky to cause my husband to not be able to urinate without assistance of a urine bag. So, the doctors don't want to risk that occurrence nor does my husband desire to be a candidate for another bag.  

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Obviously his prostate cancer residuals will remain at 100%.(in my opinion)Thanks for this info.

I think there is a potential basis here for a Section 1151 claim.

These 2 BVA cases contain the provisions of 38 USC 1151.

Something seems wrong here----but only an independent oncologist could determine that.

Has the Agent suggested any IMO/IME doctors and the need for an IMO/IME based on the AO STS claim as well as for input into this surgical procedure?

 

"Upon further reflection my husband remembers feeling a premonition that something was not going to go well because the operating doctor had become extremely upset because the operating room had not been preped timely for the surgery that morning so surgery was late getting started. My husband stated he almost asked the surgeon for a rain check a postponement due the surgeon's angered upset mood."

I know that feeling well.

I asked a VA cardiologist why-(after he had told me not to tell my husband he would be in a wheelchair for the rest of his life and I might have to consider a nursing facility)

why he had said ' because of his PTSD and his heart----he would be too upset'...I said 

I was going to tell him anyhow and the doc said it was going against his professional recommendation, but then I asked what about his heart? The VA had never mentioned any heart disease at all and he had just had an ECHO.." There was a long pause from the doctor....

Finally he said "Nothing, nothing is wrong with his heart."

After a brief battle the VA gave him a few weeks of  rehabilitation and sent him home after he could walk 3 steps without falling. He taught himself how to walk again.No wheelchair, no nursing home.

That pause bothered me but I didnt know why....after my husband died, I got his VA medical records and proved this was part of a cover up at the Syracuse VAMC of the malpractice (6 years of it) that VA had done at the local Bath NY VAMC.

The medical records revealed heart disease that progressed as untreated for 6 years ,the ECHO showed the extent and 2 EKGS and his autopsy revealed significant damage to his heart and brain due to the VA's failure to properly diagnose and treat his IHD, CVA, and then I re opened and they awarded for malpracticed DMI to his death as well. FTCA settlement 1997, 1151 award 1998, DMII award (AO 2009) AO IHD award 2012, HBP 1151 award 2015 contributing to his death.

My point is your husband had a bad feeling, a 'premonition' about this surgery and I think the VA made medical errors when they did it. It was the same feeling I had when I talked to the cardio doc.

If you obtain an IME for this claim (which I think  you will need) ,there doctor should also consider whether or not malpractice occurred. I am sure your Agent thought of that as well.

Have they advised your husband to file a Section 1151 claim?

Do you have a complete copy of all of his VA medical records?

There is more info on FTCA and Section 1151 claims in our FTCA /1151 forum here.

If the radiation treatment had worked I dont know why they even performed the surgery on your husband .....then again I am not a doctor, just the surviving spouse of a Vietnam vet the VA killed, and I know how low the VA can go to cover up malpractice...and their public malpractice statistics are manipulated to be  lower than the public and Congress thinks. I told the Secretary where to find those hidden stats.

 

 

 

 

https://www.va.gov/vetapp97/files4/9735546.txt

In part:

"ORDER

Compensation benefits under 38 U.S.C.A. § 1151 for bladder 
disability due to prostate surgery are granted.  

Evidence of a well grounded claim not having been submitted, 
the appeal for compensation benefits under 38 U.S.C.A. § 1151 
for prostatectomy, claimed as prostate disability due to 
prostate surgery, is denied."  

https://www.va.gov/vetapp05/files5/0530337.txt

6.  The criteria for entitlement to disability compensation 
under the provisions of 38 U.S.C.A. § 1151 (West 2002) for 
urinary incontinence, residuals of radiation treatment, post-
prostatectomy, furnished by VA in 1987, are met.  38 U.S.C.A. 
§ 1151 (West 2002); 38 C.F.R. § 3.361 (2005).
Edited by Berta
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