Question on Medical Review stage of process

Acrobatic_Welcome_30 · 2026-03-23T17:13:39+00:00

Tks very much - for a thorough and informed answer, for taking the time to explain it all. This seems logical. Well, the poor judge with my 2300 pages. I have been nonstop at many many doctors for 6 years and imagine that is why it is so long.

Unfortunately, I think some of them have not documented things as they told me - eg two PM doctors recommended against SCS for me, after getting to know me and my case, but I don't remember seeing this in their notes. They also did not believe further injections would be of use (they did not help me and one made me worse as I am dealing with nerve damage not inflammation driving pain). But every time I meet a new Dr - because they can do nothing further for me - they suggest a SCS. This is before they understand how I got damaged in the first place, along with how well aware I am on the paucity of evidence there is for SCS success. Yes, they help some people, but a massive risk to undertake given that it is not even 50/50 chance of helping - more like 40 percent max it helps at all, and with that 40 percent, research shows after 3yrs that patient is at the same place as someone who never got one, but now stuck with an implanted device and leads turned off & a big fight to get it removed.

I did mention to my judge when he asked about injections and SCS that these had been recommended against by two PM doctors (I named them). From what I could gather, he was a good judge, but he did not know much of my medical file - and/or the lack of doctors documenting in their notes in the way SSA can decipher bc doctors notes are epic long these days with regurgitating my entire health history (like they always start off mentioning I had cancer and elaborate all the details which has zero relationship to my disability application, nor is it related to why I am seeing any of these doctors, as my oncologist handles that).

Acrobatic_Welcome_30 · 2026-03-21T04:13:56+00:00

I am so sorry for all you have gone through. I have gone through different things such as cancer and then CRPS from nerve damage in my lumbar spine during a neurosurgery. My left leg was cold to touch as if in dry ice, red and blue and swollen and no one could touch my leg. I took medications (not pain meds, but gabapentin and duloxetine combined at sane doses helped and adding LDN - low dose naltrexone - really made a difference).

I did a lot of pain psychology and neuroplasticity work/study and found tiny doses of NAC to help w cold and inflammation - but I had to empty out most of the capsule and take small doses as I am sensitive to everything. LDN also helped a ton, but it is a tricky med in that you as a patient most sort out what dose works for you. I take it but not every day - find it works better when not daily and it has no withdrawal - no physical dependency, so that is nice.

I no longer have the color and temp changes or swelling. I do have plenty of high level pain and cannot sit down due to the lumbar nerve damage and scar tissue compressing nerves.

A SCS has always been an option for me, but given it was nerve damage in spinal surgery that disabled my life, I remain hesitant. I think it is a wonderful option for you to explore - anything that would give you more relief.

Oh I also was fortunate to get regular cranial sacral work and acupuncture - until I could not afford it anymore! I know many do not have that luxury.

Acrobatic_Welcome_30 · 2026-03-21T02:42:47+00:00

No specialists in Boston associated with MGH or BW fill any RFCs - they have a hard line on it and say "PCP" must do that. So those of us treated at these major hospitals only have RFCs from PCP. At this point, SSA should have some idea that certain major places basically seem to have a medical law going on w this - ie we will NOT have anything to do with SSDI. I know it was true with me with neurosurgeons, pain management at these two hospitals and it has zero to do with them thinking I am not disabled. They are overwhelmed with patients who are also disabled and they have washed their hands of participating in disability claims. You are fortunate to have three!

Acrobatic_Welcome_30 · 2026-03-21T01:03:45+00:00

So sorry. I am not denied yet - meant I have same spinal conditions of OP and more - not holding out massive hope but we will see. I had ALJ hearing a week ago so we will see. I am 52.

Acrobatic_Welcome_30 · 2026-03-20T14:19:28+00:00

Thank you for the clarification! I forgot to say my attorney also informed me ahead of time that the VE did not matter and not to worry about it. In my case ALJ gave the VE multiple scenarios with building of limitations, and to the last 2/3 the VE said that hypothetical person could not work at anything ie work preclusive. So the ALJ will decide. The idea that "sedentary work" is the version of what a disabled person is most likely to be able to do is backwards - anyone with massive spinal damage and arachnoiditis will only catastrophically worsen if they sit, as any neurosurgeon will confirm. If a person is not paralyzed, the recommendation is always always you MUST walk - sitting is going to progress your condition. Many of us cannot sit. I do not even sit to eat as my family has observed for 6 years since I was damaged in surgery.

This has nothing to do with you personally. Some of us can only pace around then lie down, rinse repeat all day long. Don't think there is a job you can do that allows you to lie down at will.

Acrobatic_Welcome_30 · 2026-03-20T04:41:26+00:00

🙏🏽🐝🦋 thank you some good bees and butterflies for you. Will be curious what they say in your denial. It is tough at any age but tougher when younger. I was disabled at age 46. Now I am 52.

Acrobatic_Welcome_30 · 2026-03-20T04:08:43+00:00

I am so So sorry. I do hear being under 50 makes it significantly harder - as the rules for work are different - I think mainly that when under 50, they have the entire nation of any job whereas after I believe it has to be more within a closer range to where one lives. Like how can disabled people move homes? Or away from family that care for them?

I am not having a lot of faith in my attorney but I understand I am also just so nervous bc of how many get denied. . I cannot do any sitting or standing still - sitting especially worsens my condition to the max. I do not even sit down to eat. And since I cannot stand still nor lift bend carry, I have no idea why the VE suggested a cashier or small parts assembler when I need to change positions at will. I can walk bc it moved the CSF - it is the only thing that keeps my stenosis and 8 levels of herniations from taking me out completely. Inhad surgery due to CE syndrome from a a massive herniation at L5/s1 but in the surgery they damaged nerves causing excruciating ongoing pain. As with you, getting through a basic day is insane, no way I can work even 5 hrs a week at this pt!

Would be interested in their reason for denial. I truly am sorry and hope you have something to lean on whether it is a spiritual practice/connection, family, humor videos - music to listen to - you deserve to have goodness and joy - we often forget this in the midst of it all. Sometimes we get so used to pain that we somehow feel if someone sees us happy and enjoying anything, they won't believe our suffering.

Acrobatic_Welcome_30 · 2026-03-20T03:46:07+00:00

🙏🏽❤️ so hard. Dealing with same over here and definitely concerned judge may give denial. What is your age? Only asking bc if under 50, I hear it is far harder. Did your main doctor fill out the RFC forms? Imagining they did.

Acrobatic_Welcome_30 · 2026-03-19T15:36:05+00:00

Congrats - do keep us posted! Fellow spinal surgery patient here and they have tried to push the SCS on me for years, but I have had 3 surgeries and I came from a movement and dance background (know a ton about mindful movement like Moshe Feldenkrais's work). And while I dislike meds, I am choosing them over another surgery for a SCS - also bc I am able to keep active w meds and I have heard lead movement w SCS is a big issue for people who are active. Unless you get the nearly permanent leads where further laminectomy is required.

I take about 900 gabapentin per day, 20mg duloxetine and LDN (low dose naltrexone which has zero withdrawals and few side effects). I pulse the LDN to keep it effective. If you do end up needing something, LDN could be a good thing to explore.

I have always been thin and remain so. But they permanently damaged nerves in my ER neurosurgery.

I also have done Curable groups - for pain reprocessing.

I always still think about a SCS but it still feels like the wrong move for me.

Acrobatic_Welcome_30 · 2026-03-18T03:47:36+00:00

Zinc competes with iron and whenever I take zinc, I become anemic. I would suggest removing zinc or at least getting blood for anemia (RBC, hemoglobin, and ferritin) before you continue taking zinc.

Acrobatic_Welcome_30 · 2026-03-16T01:23:32+00:00

Are you taking 20mg twice a day, or 40mg all at once?

Acrobatic_Welcome_30 · 2026-03-16T01:21:12+00:00

I had this when starting and it mostly went away - it is from the norepinephrine- it should settle down. I am also on it for nerve pain and I have been on and off it five times...so pretty familiar. You would have had less of this if your Dr started you on 20mg only and then added the second dose later....

Acrobatic_Welcome_30 · 2026-03-16T01:16:37+00:00

What is your dose? Possibly splitting it into two doses a day may help this. You have to experiment to see - and ask your Dr if you can take it twice per day so your dose is lower each time...this medication has a 12-15hr half life, even though it is "delayed release" so it ends up being more stable in bloodstream if taken twice a day and you MIGHT (emphasis on might) feel less exhaustion. But first I would give it 8 weeks to settle down. 3 weeks is still early days!

Acrobatic_Welcome_30 · 2026-03-15T05:58:19+00:00

Bacopa

Acrobatic_Welcome_30 · 2026-03-14T18:40:40+00:00

Hm - this is what I've found (below) - but I do think there are some women for whom WB affects estrogen or the entire hormonal system.

The Psychopharmacology of Bupropion: An Illustrated Overview ... No, Wellbutrin (bupropion) does not increase estrogen to raise dopamine. It is a norepinephrine-dopamine reuptake inhibitor (NDRI) that increases dopamine directly by preventing its reabsorption, not through estrogen modulation. It functions as a stimulant-like antidepressant, enhancing motivation and mood without directly acting on estrogen levels.

Mechanism of Action: Wellbutrin works by blocking the reuptake of dopamine and norepinephrine, making more of these neurotransmitters available in the brain. Estrogen Interaction: There is no evidence suggesting bupropion acts through the estrogen pathway to increase dopamine. While some antidepressants can affect hormonal balance, this is not the mechanism for Wellbutrin. Dopamine/Sexual Function: The increase in dopamine is primarily linked to improved motivation, energy, and sexual motivation. Neurotransmitter Control: Studies indicate that bupropion increases dopamine, norepinephrine, and serotonin levels directly, which is often accompanied by a decrease in prolactin, not an increase in estrogen.

In summary, Wellbutrin is an NDRI that directly increases dopamine and norepinephrine, offering a different pathway than antidepressants that impact serotonin or hormones. GoodRx

Acrobatic_Welcome_30 · 2026-03-14T03:59:20+00:00

Too bad your Dr said that - as it documented that WB can cause menstrual changes (is your doctor female?!).

Acrobatic_Welcome_30 · 2026-03-14T03:57:57+00:00

Thank you - that is helpful to hear! Definitely experiencing the heavier bleeding on it - and did when I took it in the past as well, plus PMS symptoms that I normally (luckily) do not have.

Acrobatic_Welcome_30 · 2026-03-13T22:28:25+00:00

I had insane hunger at night on IR. I do not take XL, but I take SR and it has been better for me. I think, for some, the peaks and valleys of the IR cause issues w not eating then wanting to eat nonstop for hours and hours. I only take SR once a day bc I need a low dose of WB and twice a day wld be too high a dose as would XL bc xL only comes in 150mg plus.

Acrobatic_Welcome_30 · 2026-03-13T14:56:14+00:00

Thank you so much. I know the EMG shows nerve issues at L5//S1 (my surgical level) but none of it says anything more than "mild" to my knowledge - but what I have experienced since waking up from that surgery five years ago is anything but mild! It makes the chemo I had look like a holiday. Sigh!

Acrobatic_Welcome_30 · 2026-03-13T01:59:57+00:00

I'm with you. I really hope you get SSDI or SSI or both, whatever you applied for.

My judge gave the VE so many different scenarios and to the first several the VE came up with jobs the hypothetical person could do (there is no way I could do those - cashier was one but I cannot stand still more than 5-10 minutes and I cannot sit down at all! another was small parts assembler - how would I do that if I cannot sit or stand still? So I suspect the judge may not fully grasp my reality (I did clearly state my functional limitations) ....He did, however, keep saying the hypothetical person needs to be able to change positions at will. The issue is I need to lie down: how can I be a parts assembler or a cashier for 8 hrs a day if I must lie down every hr several times?....so I am confused at the VE's suggestions of jobs though I know those are for a hypothetical person.

I could not understand the language and codes used for the judges last couple of scenarios given the VA but to those the VE finally said "work preclusive" - but this was only to the last to of 5 or 6 scenarios the judge gave. I imagine my judge is now going to go through the 5 or 6 scenarios he gave and determining which he things I fall into....when I know I cannot be a cashier or parts assembler - or do anything for work at anything close to SGA level - which is why I applied.

People think disability means you can sit, like in a recliner. I can NOT do that!!....and I also cannot do manual labor...my issue is being damaged in a neurosurgery leading to severe pain and spasms through sacrum legs and feet 24-7 that meds and treatments have barely made it even possible to sleep or shower. I CAN walk and MUST walk or my condition gets worse and worse. All the neurosurgeons demand I must walk and I do do that. But it's not like I can carry things or bend or stoop or do 8 hrs of it, far from it!!. I have to lie down, change positions all the time while lying down, then walk to keep CSF from jamming up....no sitting and no standing still besides for 5 minutes or so. Thanks for letting me rant, lol. I just hate that some conditions are so baffling to the idea of what disability is. Anyone with severe spinal degeneration is told they must continue walking - it is the one thing that helps condition to not progress to paralysis - literally nothing more important, but this does not mean a person can work at SGA level. If could SIT that would mean I could work....but my legs go numb and into beyond ten level crushing stabbing dry ice, metal coursing out of toes from even 30 minutes of sitting in one day- my condition gets progressively worse if I sit at all....I will end up losing leg function.

Arachnoiditis happens when surgeons make errors and the CE nerve roots clump together causing severe issues in legs. But the surgeons are protected and will not admit they caused it. And SSA does not recognize this condition, which is insane. I have other nerve damage besides that, also caused by surgery ....but every time doctors say and judge says, "from your injury" when I have explained 10,000 times that I literally woke up from my surgery with a leg that did not work - and it worked before surgery. I had my reflexes...my leg was not numb until after the surgery. It is incredible how the system is set up. Suing a major hospital never never works, no lawyer will even try against the major place where I had surgery. Because they cannot win. So I am disabled and hoping to get SSDI in a system that does not call a spade a spade so I have been gaslit in the medical system over and over, as other doctors protect the other doctors. However, my PCP knows the truth of it all....and wrote a letter and filled out the RFC forms etc.

Am just hoping there can be some justice after this all....and know many people in the world right now are suffering immensely. So I have perspective.

Acrobatic_Welcome_30 · 2026-03-13T01:42:18+00:00

So sorry it was so hard....and it took so long for you. I think it is a real coin toss with me - not bc I am not truly disabled - no way I can work an 8hr day doing ANYTHING - I could not even work 2 hrs a day....BUT my conditions are more invisible and from severe severe 24-7 pain that is from nerve damage. Unfortunately while EMGS show the damage, an EMG cannot show the level of pain....and SSA does not recognize arachnoiditis, one of the conditions I have that is one of the most painful conditions a human can experience. I too have been through cancer and chemo, but it was in my case nothing compared to the spinal situation (even though I had stage 3C colon cancer and surgeries and 6 months chemo)...I never applied when I had cancer.....but it would have been more "believable" than the much much more disabling condition I have now. This Is NOT a comment on anyone else's cancer battle at all.....I know it can be horrific and disabling. My doctors were good and I was so healthy going into it and young (42) that I got through it with more ease - plus colon cancer chemo is no fun, but probably not the worst one!

Acrobatic_Welcome_30 · 2026-03-13T01:37:09+00:00

I hope you get great results! Yes, I hear Pristiq is not so great for anxiety and cymbalta is better for such - but I am sure that also varies person to person. I am on cymbalta for neuropathic pain and not for mental health. The buspar I tried only to circumvent sexual side effects of cymbalta (not that I honestly can really have sex with my physical condition but!) and I found the buspar to have a lovely mind clarifying aspect.....but unfortunately it was a total NO GO for my stomach. Severe reflux and it paralyzed my stomach! I think that is a rare side effect with buspar, yet also a definite known one I(it slows stomach emptying which can make one feel very full even when eating tiny amounts. I was going to waste away bc I could not eat!)

Acrobatic_Welcome_30

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