Attorney Wants Diagnosis for Secondary Complication to Rated Condition; Must it be through VA?

[Cat4Christ777]

Originally, this secondary condition was claimed as 'migraines,' but while it may begin as a migraine with a complication, the VA can--and has, more than once--made it so much worse (pain-wise). If it does not qualify as a migraine, then my attorney and I need to come up with a different diagnosis. It's definitely a neurological issue, possibly 'occipital neuralgia,' as the condition meets the criteria of its definition, here: https://medical-dictionary.thefreedictionary.com/occipital+neuralgia.

Yes, VHA has been my provider, but they have also been the ones triggering my secondary condition; and once they bring on the extra pain, they IGNORE the cause and focus solely on finding a drug to stop it. I am afraid to ask them to diagnose a condition they cause; and they won't volunteer to bring it up, themselves. They prefer not to deal with issues they cause. The VA Northern California Health Care System (at Mather) has even destroyed medical records associated with one of these episodes they caused.

And, if I ask them to diagnose the secondary condition, they may cause the pain just to 'study it,' and that is UNACCEPTABLE, as that pain is a death sentence for me (as, in my first experience, mentioned above, I was in that severe pain for at least 12 hours, and if VA had not eventually found a drug to treat it, I would definitely have ended my life that night). In fact, after that first episode, I never called, nor went back to, that VA hospital for over 14 years. When I finally called, I discovered that they actually thought I had killed myself. They were surprised I was still alive.

So, I am wondering if I can go to a civilian Neurologist to have them diagnose this condition, instead of letting the VA 'try' knowing they could fail, and that would end my life.

The original, rated condition is 'Right Upper Extremity Radiculopathy Associated with Cervical Spine Degenerative Arthritis Status Post Discectomy and Fusion, C6-7, with Inter-vertebral Disc Syndrome,' rated 30%.

So, what do you guys think: Should I get a private Neurologist to diagnose my secondary condition? I found some local, quality doctors in town (Clarksville, TN).

[Whodat]

Well Cat, I do understand your pain and frustrations. Did you specifically filed as migraines? Is your claim still open? Did you appeal?

 

Stay away from Clark Vegas. 

I was stationed at Campbell twice. 

[broncovet]

Your attorney is correct, to get SC you need a current diagnosis.  And, that has to be made by a medical professional.  

EXCEPT for PTSD, which VA is convinced "only VA docs can diagnose PTSD", ANY medical professional (aka "doctor") can make a diagnosis. 

Dont end your life!  Pain is often temporary!  Even if its permanent, it can often be controlled!  As you already noted, there are alternatives!  Call the Hotline, instead!  https://www.va.gov/health-care/health-needs-conditions/mental-health/suicide-prevention/

 

Dont ask why VA must diagnose PTSD, I have wondered that myself, as I am equally puzzled.    Apparently the courts (CAVC) lets VA get away with that one. 

An alternative that may be less expensive, if your local VA doc wont diagnose it, then another nearby VA doc may.  

I have found a wide variety of skill levels and competence of VA docs.  Some are great, others not so good.  

Its even possible that VA may pay for your medical bills for your private doctor, but usually only when VA can not get you an appointment with VA's neurologist for 30 days.  

There are many, many alternative treatments you can try besides traditional medicine for pain relief.  Find one that works for you.  

 

[shrekthetank1]

So I had to do this with my Dercum's disease and with my Fibro.  I went outside the VA as they would not say this is what I have or not.  I was getting the run around, so I called a local doctor and they scheduled two hours and at the end they diagnosed me with both of the conditions I thought I had.  They also gave me a drug that has helped me a lot.  

I had to reach outside the VA for these two issues.  As for the rest the VA did diagnose me inadvertantly.  

As Bronco stated above the VA is the only one to do PTSD.  

[Cat4Christ777]

Thank you all for your prompt answers! You have helped me decide to 'go ahead' and contact a private Neurologist. If the VA was going to diagnose this issue, they would have done it back in 2001/2 after my first experience at the VA in Northern California; but they did nothing, preferring to hide their culpability--proving they're NOT about helping their patients.

Whodat, yes, we did claim for migraines, but it was denied. Thought that was weird, since I reported migraines as 'common' in my first experience w/VA in Northern CA; but I suspect (owing to their belief I had committed suicide after that experience), they did not follow up, nor pass on that information in my records, and it appears they destroyed those records (apparently to cover their butts).

Yesterday, I found three possibilities by searching for 'Neurologists in Clarksville, TN' and found these: https://threebestrated.com/neurologists-in-clarksville-tn

Already called the board-certified physician, but his practice refuses to take private patients (require a referral and insurance), so today, I'm calling Dr. Gretchen Campbell of KCA Neurology. I especially like her statement on her 'about' page:

"What we believe

In everything we do we believe in challenging the status quo. We believe in thinking differently. The way we challenge the status quo is in our holistic approach to the practice of neurology in a way that uncovers root cause issues resulting in symptoms.

If you’re the type of person who likes getting to the bottom of things in every aspect of your life, we have the neurology practice for you."

That statement really spoke to me, and happily, her practice accepts private, direct-pay patients. I'm calling her this morning, to see if I can schedule a consult for later this month. I would appreciate your prayers (or crossed fingers, whatever) to help her say 'Yes!'

Thanks again, and I will come back and update with her answer!

--Catherine

Edited June 3, 2022 by Cat4Christ777
forgot to respond to a question. (see edit history)

[Cat4Christ777]

When I called Dr. Campbell's office at about 8:45 a.m. this morning, their phone lines were busy, so their machine suggested texting them, which I did. As of 10:20 a.m., I have not received a response yet. Off to do some grocery shopping, and will update if anything changes in the meantime.

--Catherine Bird

[broncovet]

Catherine...not "all" private doctors know how to do exams "that the VA will (favorably) accept.  

There is certain wording VA needs to service connect you.  Let me try to help.  

Begin with the Caluza elements, required for SC:

1.  Current diagnosis,

2.  In service event or aggravation. 

3. Nexus, or doc opinion that your (current diagnois) is "at least as likely as not" due to an in service event.  

    A favorable medical exam (for va) would contain most, if not all, the following:

1.  CV of the doctor, showing he/she is an expert in his field.  (Medical training and experience), along with things like Board Certifications.  

2. The doc needs to state, "he reviewed your medical records".  Necessary.  

3.  The doc needs an opinion "very close" to Your condition is at least as likely as not due to an event in military service.  (naming diagnosis, and describing the event you think caused your diagnosis).  

4.  He has to have a medical rationale as to "why" he renders such an opinion.  

5.  You need some documentation of symptoms.  

     A favorable medical example "does not" have:

    ...ambigiuos terms, such as, "your diagnosis  MAY be related to service", or "your event "could" be related to service.  

     It really needs to say that, in the doc professional opinion, there is a greater than 50 percent chance its related to service.  No maybe's or could be's.  

     If you are using this to refute a VA doc negative opinion, then it may be a good idea to show the doc the report, and the doc should opine why his opinion is more probative.  Example:  Dr. J, (VA doc) did not test the blood, while your neurologist did blood tests, confirming the etiology and or diagnosis.   

[Cat4Christ777]

OK, Broncovet, let me clarify some things for you:

This diagnosis that I need is NOT A C&P EXAM, nor is it a NEXUS LETTER.  I am JUST getting a civilian Neurologist to examine me--with medical tests--to receive their diagnosis.

The VA had all the evidence to diagnose this back in 2001, but chose to HIDE it, and not follow up. So, I need to go OUTSIDE the VA to get a long overdue diagnosis.

By the way--and honestly, I don't know why so many people here ignore this fact, despite me repeating it over and over--I HAVE A VA-CERTIFIED ATTORNEY, who requested I get a diagnosis from a qualified physician, so we can use that diagnosis to get a CIVILIAN DOCTOR TO PROVIDE A NEXUS LETTER.

The people who would be providing such a letter are the https://vetresourcegroup.com/nerve-and-neurological/

But they don't do diagnoses, they just do medical records review and NEXUS letters. You are not my representative, so I don't have to use YOUR recommendations, nor use the same people you used. Please allow me to do what I need to do for ME and MY CASE, which you are not familiar with, so cannot give advice about.

Please do NOT make assumptions about my case. That does not help anyone, least of all me.

[Whodat]

I had claimed migraines before, the VA scans your medical records for migraines. If they do not see it, expect a denial. I claimed headaches. They saw that in my records, now they are reacting differently.  

[Cat4Christ777]

Whodat, my original filing was immediately after getting out of the military, in June of 1998, but at the time, I was only concerned about 3 things (regardless of any military medical records, of which there was MUCH more). I do have military medical records regarding migraines, but did not file for them until 2021 because that was the work of my attorney.

I did have migraines in service, but was forced to work through them (as I was never given the option to take time off, as a cop), regardless of the pain. As such, I never bothered to file for them. However, once I hired an attorney, she went through all my copious amounts of in-service medical records and filed for every issue she found, which included migraines.

I CAN--and do--wake up with migraine pain, but because I HAVE worked (i.e. gone to work) through it, I do not consider them important. Even back on December 20, 2001, I would not have even called the ER, much less gone there, if I did not have a complication that prevented me from working (inability to read). It is ONLY when I have complications with the migraines that I get VA involved (to try to find out WHY the complications happen).

And for me, migraine pain is not a death sentence; it was only when the VA started giving me a much WORSE (nerve) pain out of those migraines (i.e., The Worst Pain of my Life), where it is impossible to function--even as a human being--much less consider continuing to live or try to work through. For that first experience, the VA kept me in that pain for a good 12 hours, so I had a LOT of time to believe they were not going to be successful in getting the pain down.

Literally, for that entire time, all I could do was hold my head together (because it felt like the lower left side of my head was going to explode), cry, and BEG people--anyone, even the VA police, when I saw them--to kill me, to end my life, because I could NOT 'live' with that pain. It was well and above any mere migraine pain, and completely destroyed any concept of 'quality of life.'

As a Christian, I am very pro-life (even to the point of working to criminalize abortion, because it is murder); but THAT PAIN changes everything. Unless you've BEEN THERE, yourself, and have experienced it for yourself, you cannot tell anyone else how they should deal with it.

I know why veterans commit suicide: it's because they are in a condition that is untenable for them, and the VA either cannot, or will not, help them. When 'quality of life' becomes a negative integer (like -10), you don't have any other option.

[Lemuel]

On 6/2/2022 at 6:30 PM, Cat4Christ777 said:

Originally, this secondary condition was claimed as 'migraines,' but while it may begin as a migraine with a complication, the VA can--and has, more than once--made it so much worse (pain-wise). If it does not qualify as a migraine, then my attorney and I need to come up with a different diagnosis. It's definitely a neurological issue, possibly 'occipital neuralgia,' as the condition meets the criteria of its definition, here: https://medical-dictionary.thefreedictionary.com/occipital+neuralgia.

Yes, VHA has been my provider, but they have also been the ones triggering my secondary condition; and once they bring on the extra pain, they IGNORE the cause and focus solely on finding a drug to stop it. I am afraid to ask them to diagnose a condition they cause; and they won't volunteer to bring it up, themselves. They prefer not to deal with issues they cause. The VA Northern California Health Care System (at Mather) has even destroyed medical records associated with one of these episodes they caused.

And, if I ask them to diagnose the secondary condition, they may cause the pain just to 'study it,' and that is UNACCEPTABLE, as that pain is a death sentence for me (as, in my first experience, mentioned above, I was in that severe pain for at least 12 hours, and if VA had not eventually found a drug to treat it, I would definitely have ended my life that night). In fact, after that first episode, I never called, nor went back to, that VA hospital for over 14 years. When I finally called, I discovered that they actually thought I had killed myself. They were surprised I was still alive.

So, I am wondering if I can go to a civilian Neurologist to have them diagnose this condition, instead of letting the VA 'try' knowing they could fail, and that would end my life.

The original, rated condition is 'Right Upper Extremity Radiculopathy Associated with Cervical Spine Degenerative Arthritis Status Post Discectomy and Fusion, C6-7, with Inter-vertebral Disc Syndrome,' rated 30%.

So, what do you guys think: Should I get a private Neurologist to diagnose my secondary condition? I found some local, quality doctors in town (Clarksville, TN).

Cat, look up the "community care number" for your area.  They may refer you to an outside neurologist because the VA has so few and the one you are seeing is exacerbating your medical response to treatment.  I see an outside neurologist who has been very helpful to me.

[FloridaNative]

I don't know where you are in terms of getting a diagnosis. Thought this might be helpful. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7831134/

[Cat4Christ777]

Lemuel, I wanted to go to a private, civilian Neurologist for a diagnosis, because I don't trust the VA--with good reason, as their employees (I have trouble calling them 'medical professionals') don't listen to me, and tend to put me in excruciating pain (making me want to die). I wanted someone who understood nerve issues, to diagnose me (not treat, just diagnose).

However, over the past couple of weeks, I have been calling several private Neurologists in town, but no one has even called me back, and I have not been able to even speak with a human being. So, I have no choice but to go through the VA at this point; and made an appointment with my PCP for her earliest available date, which, unsurprisingly is 2 months out (August 12th). In that meeting, I will provide her with my evidence as to why I think it's a neurological issue, so she will provide a Neurology consult. That's up to her, of course.

I do not know whether that will be from within VA or via Community Care, but I am not going to call Community Care directly, as I have to go through my PCP (Primary Care Physician) for that authority.

I just think it's strange that professional medical offices would not even return calls from potential customers, who are willing and able to pay for service. And this is not just one office, it's more than half a dozen offices, all who do not return calls when customers leave messages.

Thanks for your input, though; every insight helps, even a little bit.

 

[Cat4Christ777]

FloridaNative, thanks for the link. Interesting read, but I think the issue with my neck is caused by a pinched nerve, or something irritating a nerve (possibly the remaining disc debris that was not removed in the intentionally-botched 1995 surgery). After all, if I manage to stay on my left side while sleeping, I don't have any reading issues, even if I wake up with a headache. It's only if I fail, and wake up on my back or right side that I wake up with a migraine plus complications.

While I do have Osteoporosis, it's not directly related to the discectomy. It was caused by Primary Hyperparathyroidism, diagnosed in 2016, where all of my parathyroid glands grew tumors on them, so had to be removed (in 2 separate surgeries, that just happened to have their incisions in the exact same place as my 1995 surgery. Weird, huh?) And, yes, I DID try to claim the Hyperparathyroidism was caused or related to that original surgery; VA denied my claim. Of course, now I have surgically-induced Hypoparathyroidism (no parathyroid hormones).

I should have just gone with the endocrine issue mentioned by the doctor who diagnosed my menopause in service; she stated in my service medical record that the menopause was likely caused by an endocrine issue, and put a consult in for it, but it was never acted upon. If it had been, I can only imagine an Endocrinologist could have discovered the Hyperparathyroidism early enough to save some of my glands.

Thanks again, everyone!

[Lemuel]

13 hours ago, Cat4Christ777 said:

Lemuel, I wanted to go to a private, civilian Neurologist for a diagnosis, because I don't trust the VA--with good reason, as their employees (I have trouble calling them 'medical professionals') don't listen to me, and tend to put me in excruciating pain (making me want to die). I wanted someone who understood nerve issues, to diagnose me (not treat, just diagnose).

However, over the past couple of weeks, I have been calling several private Neurologists in town, but no one has even called me back, and I have not been able to even speak with a human being. So, I have no choice but to go through the VA at this point; and made an appointment with my PCP for her earliest available date, which, unsurprisingly is 2 months out (August 12th). In that meeting, I will provide her with my evidence as to why I think it's a neurological issue, so she will provide a Neurology consult. That's up to her, of course.

I do not know whether that will be from within VA or via Community Care, but I am not going to call Community Care directly, as I have to go through my PCP (Primary Care Physician) for that authority.

I just think it's strange that professional medical offices would not even return calls from potential customers, who are willing and able to pay for service. And this is not just one office, it's more than half a dozen offices, all who do not return calls when customers leave messages.

Thanks for your input, though; every insight helps, even a little bit.

 

No you do not have to go through you PCP.  And you can demand a change of PCP.  Talk to your "case manager".  You should have gotten a letter identifying that person.  If not just call the operator at your VA treatment facility and ask to speak to your case manager or a case manager if yours is not available.

And you do not have to have an appointment to get a consult.  A telephone request to speak to your PCP should be sufficient.

And not getting an appointment within 30 days is sufficient to be assigned a PCP in the community care service.  The limitations are within 40 miles or 30 day window.

Ask for an urgent appointment from the neurologist.  They are in short supply and you may have to take a video appointment from an out of area neurologist to get a timely appointment.  

I am in a very rural area.  My neurologist is out of area and I see him by video in a community care physicians clinic for my temporal lobe epilepsy follow ups.

I have a case manager who intervenes with my PCP problems.  My pain is from the spine not TBI or head related.  Your case manager can get the "consult" from your PCP or some other physician or PA or NP.  

I was able to get an orthopedic consult quickly when I fell and fractured my knee cap.  Blocks away from my home is an urgent care clinic which we are authorized to go to 3 times a month.  They are staffed by NP and PAs.  But they cannot write consults.  They are limited to independent duty medic type treatments but cannot write consults the way I could as an independent duty Navy hospital corpsman.

Your case manager should be a social worker.

Sounds like you have a problem PCP.  I would ask for a change.  You do not have to see someone that treats you negatively.  

[Lemuel]

CAT, just read your response that followed your response to me.  So, your pain problems are from your neck and spine the same as mine.

I have an electric adjustable bed and a pillow made from a 6" tube stocking and buckwheat husks from a buckwheat pillow from Japan.  This enables me to sleep with the proper lordosis in my neck on my back without turning side to side.  Sounds like you may have similar problem with curvature of your neck and some neural foramen stenosis.

Do you have metal in your neck from your surgery?  I have always avoided surgery because I have never seen anyone who had surgery on their spine that did not say they were worse off after surgery than before.  I use traction methods such as wearing a hard cervical collar and exercising my neck against the collar to stretch the spinal disc space and relieve the stenosis.  This might be useful to you if you have no metal clips or bars in your neck from surgery.

If the surgery was done by the VA or military, you can claim SC for your pain and residuals via 38 CFR 3.154.

The osteoporosis is more likely caused by the change in your spinal disc fluid chemistry which happens to dissolve disc fragments in the spinal canal.  My first one was on the sciatic nerve from the S-1 disc caused by a T-bone accident from the left side which hyperextended me to the right while I was held into the impact by the lap portion of the seatbelt.

I was scheduled for surgery for the removal of the fragment but the spinal surgeon was out of town for two weeks.  In that time I was on crutches because of the paralysis of my left leg.  The paralysis improved and the pain lessoned.  

When I went for the pre-surgery appointment, the resident who saw me said, "I have good news and bad news for you."   The good news was I did not need surgery.  The bad news was that the spinal fluid had changed chemistry to dissolve the disc fragment and would weaken the rest of the disc sacks in the spine causing further ruptures over the next 10 to 15 years and the pointed to the osteoporosis display as my future within 15 years.

In our discussion it was decided he would order me Canadian crutches and I would use them to take the pressure off of the disc sacs until the spinal fluid changed back and the disc sacks had a chance to toughen up again as a trial to see if it would help.

It did except for the neck because I did not also wear a hard cervical collar when walking to get traction from the shoulder push up from transferring some of the weight from the lower back to my shoulders.

I describe the above for anyone having a recent disc rupture or herniated disc surgery.  The newer herniated disc surgery is just to lance the disc sack and allow the disc fragments to float and dissolve in the spinal canal which is apparently what Cat experienced in 1995.  That was the surgery suggested to me in Japan in an exacerbation in 1994. 

In 1991, if a fragment settled on a nerve foramen causing severe pain, urgent surgery was done to remove it if a surgeon was available.  I was saved from Cat's experience by a delay in surgery.

If you are in the position of only one disc problem, ask your doctor about using Canadian crutches and a hard cervical collar when walking any distance more than 50 yards without a sit down. 

The walking bounces the spine and puts pressure on the disc sacs.  Use them for at least 15 years before feeling confident to stop using them.  I did not.  At times I thought I was OK and would stop using them until another disc fragment ended up on my sciatic nerve. 

I did not and although my lower back does not have as many desiccated discs as my neck, I think there are more than I would have had if I had followed the program discussed better.  Now I have to use the Canadian crutches and a cervical collar to prevent excruciating pain from nerve foramen stenosis.

Copy this and show it to your spine clinic treatment professional for an opinion about the cause of your pain and osteoporosis.  Although the cause of your osteoporosis may be from your endocrine system, the stimulus was more likely than not from the immune system recognizing the disc fragments in the spinal canal.

[Lemuel]

Also, I have to purposefully exercise using the crutches and hard collar as I should have done for those 15 years in the hopes of avoiding the situation I am in now.  I will never know at this point if it would have worked as discussed as a possibility.

[Whodat]

I also am experiencing all of the pain that all of you are discussing. Both cervical and lumbar. I see that most of you had mri's x rays etc. That does identify some of the smyptoms. Have any of you had an emg test proving that your symptoms are also affecting the nerves? The emg will show that you either have nerve damage. Nerve damage may be the reason for migraines. 

[Cat4Christ777]

I am sorry for your pain and other issues, Lemuel, but our injuries, and our issues, while similar, are not the same. It gives me comfort to know there are people with similar issues to mine; I don't feel so alone anymore.

I can say that my Osteoporosis has improved slightly (2.9% in my left femur), per my most recent Dexa scan on June 7th. I think it's due to taking K2 vitamins, which helps the body remove calcium from soft tissues and put it into the bones, where it belongs. In case you're interested, I take Bronson (brand) Vitamin K Triple Play, a supplement (I get it from Amazon) consisting of three types of Vitamin K (K1, Phytonadione 100 mcg.; K2, Menatetrenone, 400 mgc.; and K2, Menaquinone, 50 mcg.), for a total of 550 mcg. (458% daily value). You only take one per day, and the supply is 180 capsules, which ought to cover around 6 months, if taken daily.

While most of my parathyroid glands are gone (my last surgeon claimed she left half of one behind, but a whole one is the size of a grain of rice, so half it hardly even there), and it's only been 4 years since that surgery, and it can take 7 years before that tiny half-organ to 'wake up' and produce parathyroid hormone. A recent blood test says my PTH is still 'low' (4.9 when it should be at least an 8).

I also switched to buying Irish butter (Kerrygold brand) instead of American (the cows are grass-fed, so there's more natural K2 in it).

My bed works great for me, I am thankful to say. It's all memory foam--from the mattress, to both head pillows, and even knee pillow. Knee pillows are important, as they help prevent lumbar pain, which can make walking even more painful than it already is. I am more than glad I no longer have to sleep on an old, unsupported love seat, as that really sucked, and I did not get much sleep that way.

And, just in the past 24 hours, things have changed, thanks to my attorney (she's an absolute pit bull!): She filed for the neurological issue just a couple of days ago, and LHI called me just this afternoon with a neurological C&P exam set for June 24th! I may not even need the August appointment with my PCP, but I have plenty of time to cancel, if necessary.

I have never received an appointment with VA with less than a 2-month wait, and I've used VA in 3 different States now (CA, CO, TN). Heck, when I first moved to TN, if I wanted a local PCP (in my community), it would have been a 3-month wait, so I opted to allow my PCP be located in Nashville.

Anyway, I will update this thread as things change.

 

 

[Cat4Christ777]

Whodat, I looked up the EMG exam, and it sounds like I might have received such a test if I could have gotten a private Neurologist to take me on as a patient. Sounds like something I could probably use, diagnostically.

I hope you received an accurate diagnosis from that test, and are receiving the appropriate treatment, to minimize pain.

Again, I will update here, as I find out more information.

[Lemuel]

6 hours ago, Whodat said:

I also am experiencing all of the pain that all of you are discussing. Both cervical and lumbar. I see that most of you had mri's x rays etc. That does identify some of the smyptoms. Have any of you had an emg test proving that your symptoms are also affecting the nerves? The emg will show that you either have nerve damage. Nerve damage may be the reason for migraines. 

I did not have an EMG to my memory.  I have had abnormal EEGs.  Both are very difficult to come by these days.  Shortage of qualified readers.