toomnyhats

Thanks much!! I think right after my suprapubic is placed, I will do just that. File for the neurogenic bowel/ileostomy, the suprapubic and increase pain which they can't find a drug that will control it. I suspect they may connect but if they don't calculate the SMC correctly, I'll appeal. One last question - you've been so much help and encouraging, do you know how the VA defines paralysis in the clause for SMC O? (2)Paraplegia. Paralysis of both lower extremities together with loss of anal and bladder sphincter control will entitle to the maximum rate under 38 U.S.C. 1114(o), through the combination of loss of use of both legs and helplessness. The requirement of loss of anal and bladder sphincter control is met even though incontinence has been overcome under a strict regimen of rehabilitation of bowel and bladder training and other auxiliary measures." Do they mean complete loss of motion or loss of use? I can slide my legs a bit, can't hold them up very long against gravity and certainly not at all against resistance. I can't bear any weight so they are pretty useless. Just wondering if that rating would apply to me or if you have have a complete - can move them at all or if my circumstances qualify. Many thanks!!!

Thanks for the clarification Buck52. It sounds like I was low balled on SMC. I require assistance to dress/undress, bathing/showering, Passive ROM, preparing meals which I must eat 6-8 small meals a day due to slow stomach emptying (I'm told by my doctor this is related to SCI). I have an ileostomy that came off recently at night and I was covered with muck. My husband was working nights and I had to wait 2 hours for him to get home to clean me up. I eat independently but require special utensils because of my hand weakness. My medications (way too many in my book) are set up by a home health nurse every three weeks and she will also eventually be coming every 2 weeks to change my suprapubic catheter since I don't have the dexterity to do it. I have a van with zero effort controls adapted to me but I have since worsened and can't leave home unless my husband drives me places. Next year we plan to use the Automobile grant to go totally high tech if I pass the driver's training at the VA. Our current van, we purchased before my decision came through so we had to pay for all the adaptive equipment except the ramp. I have Dragon for my computer so basically my days consist of being on my computer, interacting with my husband and children/grandchildren when they visit. I am unable to do much physically. I do still oversee how the household runs and finances since those items just require my brain not my body. I do have a service dog who helps with things like opening doors and picking up anything out of my reach or that I dropped but his capabilities are limited. He can tug my socks off but he can't put them on. Ditto with shirt sleeves. So would you recommend first filing for the items that were missed and new ones that have come up (neurogenic bowel w/loss of control-dealt with by ileostomy and colectomy, suprapubic, worsening weakness and definite worsening of pain) or should I just request an increase in SMC? To me It would seem more logical to get SC for the above mentioned items and then see how the SMC rolls out. There are times I need someone here with me for long periods and SMC M isn't enough for me to hire someone for that.

Thanks Buck52 but I'm somewhat confused. I thought aid & attendance was the SMC I receive...I am classified as SMC M. I may be misunderstanding terminology?? Is aid and attendance something entirely different. I also don't understand why I wasn't assigned an SMC of O (paralysis with loss of both sphincter control) or do they only look at paralysis if you are a complete versus incomplete SCI patient? And how would the 100% for suprapubic and 100% for neurogenic bowel w/ileostomy & colectomy play into things if granted. (I believe those are both rated at 100% from the regs I looked at). Just when I think I have it figured out...I realize I only know a tiny speck of the big picture!

Thanks vetquest! I am rated an M for SMC - is aid and attendance a separate thing? I definitely need it. I am receiving some help from the standard medical package (Homehealth/Homemaker) but it is not near enough. I need help with my morning routine and my nightly routine along with additional things like PROM, FES hook up, and the homemaking. My husband is definitely becoming over taxed (he is 60). We would consider him retiring early but don't have enough trust in the VA to do that.

My original decision is attached. I posted later regarding the lack of connection for my neurogenic bowel (ileostomy with colectomy). My VSO advised me not to rock the boat since my STRs didn't have any neck documentation. That was dealt with in the IMO I submitted and was successful in getting the neck connected and the cascade with it. My health has been up and down and I have not gotten around to filing for the neurogenic bowel. We're in the process of the Specially Adapted Housing grant right now...long process to get bid from contractor but not complaining at all!! Feel blessed to have it. However, I talked to my VSO once again, about my concerns of my neurogenic bowel not being rated and I was told not to worry because if I had a bowel obstruction, rupture and died from sepsis, the Death Certificate would link it to the spinal cord injury. I think that was a crock but...now I have other issues and am ready to take them on. Issues I would like to file for are: Neurogenic bowel requiring ileostomy and subsequent colectomy due to disuse syndrome. Gastroparesis. This has been brewing for awhile along with my GERD but it is to the point now where I'm losing weight too quickly and sometimes can't get anymore than 600 calories in a day even using high calorie supplements recommended by the dietician. I feel as if I've eaten a Thanksgiving dinner all the time. A few weeks ago, it resulted in a hospitalization and my small intestine had ileus for a couple of days where nothing moved. Not sure if Gastroparesis is a ratable and connectable condition to my SCI. I'm scheduled for a suprapubic catheter to be placed on November 14 because I leak around my foley. I can no longer Cath intermittently because my hand is getting to weak to manipulate clothing and I don't have 24 hour help. Am I correct that a suprapubic is ratable at 100% especially since I already have a 60% Neurogenic bladder rating (not related to my neck issues) Is is worth it to file. My husband is 60 and taking care of me is becoming very taxing. The VA covers some home care/homemaker through the standard care but not near enough. So I don't know if these issues, if granted would bump me higher than an M w/K. Also does anybody know if Loss of use of both bowel and bladder sphincter control plus paralysis requires the paralysis to be complete (as in ASIA A) or does it also apply to incomplete. I'm listed as a C1 ASIA C SCI. It is not clear in the regs which state, "(2)Paraplegia. Paralysis of both lower extremities together with loss of anal and bladder sphincter control will entitle to the maximum rate under 38 U.S.C. 1114(o), through the combination of loss of use of both legs and helplessness. The requirement of loss of anal and bladder sphincter control is met even though incontinence has been overcome under a strict regimen of rehabilitation of bowel and bladder training and other auxiliary measures." Any advice or thoughts would be greatly appreciated. Blessings, toomnyhats toomnyhatsRedacted.pdf

broncovet - thanks for the info. Both #1 and #2 are what prompted me to look further into this. My husband has been my wonderful caretaker for 15 years and he deserves everything he can get should I die before him. I've only been service connected since 2015 so I still have 7 years to get to that 10 year mark. I have an SMC of M. I'm kind of a control freak so going through my VSO was tough because they don't always want to share and share info alike But she calmed me multiple times and truly did do a great job, even though she scared me a bit about them coming back and taking a closer look at things. But from the beginning she was honest about this being a long shot since there was nothing in my str about my neck pain and from that long shot...here I am 100% P&T with full benefits for my family.

Berta, My SMC confusion. SMC's Pasted below. They did rate the upper extremity with loss of use of hand because it's my K. I have extremely degenerative shoulders (R worse than left) with partial rotator cuff tears from using a manual wheelchair and using loft-strand crutches. I thought I was mostly walking with my legs but was actually walking with my shoulders. Unfortunately nobody warned me about preservation of upper extremities. (It was not the VA - they are the ones that educated me on it but too late by then). We don't believe the loss of function getting worse in my right hand is related to shoulders. My hand started to deteriorate after a second surgery on C6-7 for radiculopathy on the left. Pretty sure the cord was compressed some and continues to be intermittently pushed on. I also don't understand why I didn't get additional K's (foot and and both buttocks). They way I understand it, those can be given even if rated in a higher category for LOU until it gets to R and then no K's allowed. My ratings confusion is 1) Why they didn't connect the neurogenic bowel and colectomy 2) Why they rated it as paraplegia when clearly all four extremities are involved, my level is cervical and I'm a C1 ASIA C according to my most recent annual. I initially started out as C5 years ago and it has been steadily creeping up (probably because I have no more room in my cervical canal) We've started the process of everything relating to 100% P&T (housing grant, higher tech hand controls and new van, retro for my daughter for Chapter 35 DEA, ChampVA for my husband, ID's) and I guess hearing someone say that they could go back and decide to take the ratings away is a scary thought, especially since I felt like I was flying by the seat of my pants with nothing in my str about my neck. But they knew that and still granted (I keep telling myself lol) Thanks for your help with this....you guys are awesome!! toomnyhats

Thanks Berta. Regarding my right extremity...both are actually going..hand and shoulder. I have to use special silverware to eat because my grip is minimal and I can't raise my arm above 60 degrees. Also, interesting to me is that we the original claim was filed, it included neurogenic bowel (ileostomy and colectomy) which was of course denied because they didn't connect the neck. When the NOD was file, nothing was put in about the bowel which it should have been included. That is the one that is really eating at me. toomnyhats

Thanks for all the information Berta! My VSO is the one that told me that. She said they could go back and reverse their decision. I don't understand that because from what I read, since I have 100% rating for loss of use of legs, don't I fall under the "5 year protection" where they can only reduce or reverse if there is clear evidence of improvement (that's not going to happen..been like this since 2003 and just getting worse). I'm also 56 years old and I read that they look at 55 as the age where it would be difficult to make a living with a veteran's disabilities if they are high enough. "Do you mean they awarded the 100% -as secondaries, and also awarded 60% for the bladder?" They awarded the bladder and tinnitus and then we filed the NOD and form 9. The bladder was linked because in my str there is a reference to bladder spasms a week or so after I had a c-section. To me that's a CUE but again...."not supposed to rock the boat". The bladder and the bowel should both be secondaries to the spinal cord injury in my neck...that is when both were diagnosed outside of the military. Plus it's a no brainer that those two almost always go hand in hand with the significant damage to my cord. I surmised that maybe they awarded because they felt the bladder could have been damaged during the c-section since they have to move/pull off the bladder in order to access the uterus but there was really no clear explanation. What level of SMC are you at now? I am at an M K for loss of hand l for loss of both feet l and a half for loss of three extremities m due to the separate 60% bladder and 100% loss of legs (again, they don't see them as related) And this is where I saw the supra pubic rating. I can't remember where I read that it should be rated at the higher rate but none the less, here is where it is mentioned: 7516 Bladder, fistula of: Rate as voiding dysfunction or urinary tract infection, whichever is predominant. Postoperative, suprapubic cystotomy 100 And I'm still not sure about the loss of use of legs with loss of sphincter putting me at an O. Thanks, toomnyhats

I have a few separate questions. I was granted 100% P&T, no exams required, along with the rest of the benefits (Chapter 35, Commisary, etc) based on cervical neck aggravation in service. We discovered later after discharge that I have a narrow spinal canal, I am now an incomplete tetraplegic with some remaining function in my left arm and not much in my right. They granted 20% for neck with the following secondaries: 100% loss of use of legs, 70% Right Arm w/loss of use, 30% on left arm radiculopathy. I also have an independent 60% on bladder granted almost immediately after filing my claim in 2015, because they found in my str where I had gone in for bladder spasms, however it is not listed as a secondary to the neck. I also have 10% tinnitus. I had to have my colon removed and an ileostomy placed due to neurogenic bowel. This was never addressed in the nod. When I mentioned it, I was told that they would see the secondaries automatically or we could file a new claim. My neck claim never went to the board because I had two good letters (IME and IMO) stating that aggravation was more likely than not caused by service. So after the Form 9 was filed, they eventually granted the items listed above. My question is should I file a new claim for the neurogenic bowel. I'm not looking at it from a monetary standpoint now, but looking at the future. If I were to get a bowel obstruction and die, my husband would not get anything since it's not service connected. Question number two relates to the bladder. I'm am deteriorating in my hand and arm function to the point that it is difficult to intermittently cath. My urologist thinks it is time to place a supra pubic catheter. I saw somewhere that this is rated at 100%..does anyone know if that is correct? If so, then I assume the 60% for bladder would go up. Question 3 relates to the fact that I have loss of use of both legs, loss of use of both sphincters. If they connect the neurogenic bowel, would that put me in the SMC O category? And one last comment, I'm being urged not to rock the boat because there was no documentation regarding my neck, however the IMO did a great job documenting clearly why he would not expect me to seek treatment for neck pain because it typically starts at a low level (as mine did) and most people just treat it at home via OTC and heat. There is also a steady stream of continuity of treatment starting 2 years after I was discharged. He also specifically said that my degeneration occurred at a much more rapid pace than it would have had I not been doing the strenuous work I was doing. I believe that, along with a great letter from my VA SCI doc plus full exam is what got me granted but I'm sure it was sitting on the fence and could have gone either way. I am, of course very happy we avoided having to take it to the board of appeals. So asking all the experts out there...would I be rocking the boat to request the connection of my neurogenic bowel? Thanks much!

Great idea! I did that with my DD214 when I first got out of service. Peace of mind. Thanks! toomnyhats

Thanks Buck! I got an M + a K which resulted in the amounted shown. Since our youngest just graduated it will go down slightly but I encouraged her to start going for her Masters in enough time to beat the 26 year age limit. She turn 22 in July. 1. Getting something from the evidence intake center today - not sure what that is (I have informed delivery so I can peek ahead) Maybe that's the "coding sheet") 2) Good idea...hadn't thought about the envelopes 3) Scanned it all in my computer and hard copy to go in our fireproof/waterproof safe 4) Check √ 5) Check √ Called St. Louis about retro and she said first thing is to fill out application. They will generate a letter where we will then put the dates in that the girls were in school which match my 30 month decision period 6) Check√ They actually do it at at the Army reserve unit right next the the VA medical center I go to so that's convenient. Also, apparently need spouse's birth certificate, our marriage certificate, spouse's social security card 7) Check √ Ready for mail today 8) Check √ Ready for mail today. They denied me the first time because I have a heart arrhythmia but it is treated only because I feel them (symptomatic only - no risks or disease). I'm being proactive and sending in my last cardiologist note stating no heart failure and echo showing excellent ejection fraction and function. 9) I'm going to call vehicle registration today but I think my state only offers tax exemption, not registration exemption but I'll take what I can get :) 10) Not many bases close to us but I look forward to a little R&R at Elsworth AFB in the Black Hills (about 8 hours away). A couple of lakes with cabins and rental equipment for kayaking and other things. Thanks much - I am thrilled and will pray that those waiting move quickly through. Thanks for the checklist - those help a lot :) toomnyhats

Yay! Finally got the envelope. I've attached the redacted version for any input, advise or comments. Your experience is valued!! Thanks! toomnyhats toomnyhatsRedacted.pdf

Holllie Greene - I totally agree with you and now that is has sunk in, I know that we'll have forms and paperwork to do but I'm feeling much more like everything will fall into place. I spoke with my PVA rep and we most likely won't pursue the neurogenic bowel because we don't want them to start questioning anything else. Mine was a complicated case because the aggravation started in service but because cervical degeneration comes on slow, as my IMO doctor pointed out, he would not expect me to seek treatment other than home remedies, thus nothing in str. He laid the entire case out very well in his letter and I think that was what tipped things in my favor. Apparently, there were quite a few docs involved in this decision. The granting of the bladder was probably a cue because they granted due to spasms I had 3 days after my c-section in 1988. Technically, it is related to the neck but I'll take it however I can get it. My PVA rep was extremely pleased and said the letter went out today which will include the automotive grant info, SAH info and Educational benefits. So, I'm just thrilled and ready to enjoy the reduction of stress on my family and I. Blessings!! toomnyhats

I believe it is an M or M-1/2 based on amount awarded. I don't have my packet yet. But once we connect the neurogenic bowel, I believe it will go up to O. In the meantime, while I've been waiting for my claim, for the last 2 years, I've had home care by contracted providers under the basic non service connected health care benefits. Can I keep those even though I'm now 100% P&T with an SMC assigned. I would like to keep those services and supplement by hiring additional help. Sorry to be so confusing :/ Thanks for you help! toomnyhats