Posted on: Nov 28, 2012 11:04 PM
Hi Everyone! This is kinda long . . . sorry about that. I am wondering if anyone out there has navigated through social security disability and can give me some guidance.
I was laid off from my job (working as a legal assistant for 5 senior partners in a large law firm). Three months later, I was diagnosed with Stage IIIc breast cancer and immediately began treatment. I have undergone 3 surgeries, chemo (ACT) and radiation. As a result of the treatments, I am now dealing with a lot of side effects that are not going away. I have neuropathy in both feet at the toes and balls of my feet, making it difficult to walk or stand for more than about 5 minutes at a time. I also have neuropathy in my fingers and wrists in both hands, as well as arthritis, carpal tunnel syndrome and tendonitis in both wrists, which makes it very difficult for me to use my hands for basic day to day activities. Additionally, I have terrible burning sensations in the arm where the nodes were removed and my right hand will begin to swell immediately if I try to use it just to perform basic chores. Add to this the standard issues with fatigue and chemo brain. As a result, I am not able to perform the same job I had before all of this began.
My oncologist listens sympathetically, but hasn't really been able to offer any relief. I have been to an orthopedist for the wrist/hand issues and we have done the cortisone shots to no avail. His only solution is to operate on the wrists, which for me is not an option at this point due to the lymphedema risk.
I went to see a neurolgoist who initially insisted that the neropathy could not possibly be caused by the taxol and there had to be some other explanation. He put me on a horrible anti-depressant that is supposed to block the pain receptors caused by nerve damage. All that did was give me terrible nightmares and cause me to be extremely exhausted to the point I could hardly walk. He also put me on savilla which has caused me to have heart palpitations. Neither of these drugs diminished the pain in my feet or hands.
What is causing me a lot of anxiety is that the neurologist insisted on performing tests to "prove" I have neropathy. I never asked him to prove this so I don't know why he was hell bent on "proving" this but according to him, the tests came back negative. He did an EMG on my arm and leg which was excruciatingly painful and he said it was negative. He then performed a skin biopsy on my hip and ankle and the test indicated no nerve damage. (On a side note, he did not test the nerves in my feet or toes because he said that it is not done that way. It does not make sense to me that the neuropathy in my toes would show up in my hip or ankle when they feel fine.) So, at the end of all of this, he concluded that my symptoms are in line with the side effects of taxol and that all he can do for me at this point is increase the savilla prescription and see me again in two months. At my last visit, the PA who was seeing me was not making a lot of eye contact with me and she seemed to be in a hurry to get me out of there.
I am not happy with the neurologist and his conclusions. All he has done is cause me physical pain and tell me that he can't prove I have neuropathy. I have an appointment to see another neurologist next week, but at this point, I am worried that it is going to be a repeat of a bad experience. My oncologist has no doubt I am going through this. In fact, he stopped the taxol treatments before we were done because the neruopathy was so bad that it caused me to fall and end up in the emergency room with a back injury. I have fallen several times and have documented my injuries from the falls. My pcp told me to go ahead and file and they will fill out whatever forms I need.
I have spoken with 2 disability attorneys. One won't help me until I am turned down by Soc. Sec. which apparently is almost guaranteed on my first round. The second attorney has indicated that the neurologist reports are going to be pivitol to my case. So, now what do I do?
Has anyone out there had to file disability due to neuropathy? If so, can you give me some advice about how to handle the neurologist? Any insight or advice would be greatly appreciated.
Posts 1 - 9 (9 total)
Nov 29, 2012 12:50 PM dlb823 wrote:
Lisa, I'm stopping back mostly to bump this thread for you, but I also wanted to ask if you'd considered possibly seeing if an integrative or naturopathic doctor might be able to offer you some more natural things to help with the SEs you're having from tx. There's a whole array of things like healing touch massage, acupunture, non-steroid shots and various vitamin and herbal supplements that often help. And sometimes diet changes can also help -- things like avoiding wheat and dairy products, both of which can cause a lot of inflammation that exaccerbates nerve pain.
I read through your earlier posts and you have really been suffering with what sounds like possible nerve damage from both your ALND and Taxol. Hopefully, you can find a really good integrative oncologist who can offer you knowledge and therapies beyond what conventional Western medicine does. There's so much more out there, but since you live in a rural area, you may have to do some searching to find it. (((Hugs))) Deanna
Nov 29, 2012 07:55 PM LisaBaker wrote:
Deanna, thanks for the advice. I would love to try a non traditional dr but my insurance won't cover it and since I am not working at the moment, finances are very tight and I can't afford to pay out of pocket. I have tried herbal supps without much success. I am so tired of going to dr after dr and all of the medicines they keep giving me. I have tried over 30 meds since April and every single one has caused terrible side effects and offered no relief from the pain. At this point, I am just trying to learn coping skills so I can manage my life and figure out how to keep a roof over my head while I am healing from everything. So far the thing that helps the most is exercising in a pool and letting the jets run on my feet and massage therapy when I can afford it. My biggest concern is getting through the disability hoops so that I can focus on getting better.
Nov 29, 2012 08:16 PM karen4u wrote:
Hi Lisa...your initial post was lengthy but the detail in which you describe your impairments is exactly how your need to complete your disability paperwork. Since your neurologist is not on board then I would suggest using your PCP. You will need the documentation from ALL of your doctors for the filing though. Just remember be very specific on everything....moving your arms, sitting, lifting, walking, fatigue.....EVERYTHING. I am so sorry you are having to go through this, it sounds like Taxol is most definitely the culprit. I wish you the best of luck.
Nov 29, 2012 08:23 PM Chickadee wrote:
When you apply for SSDI you are the one who provides the names and contact information for Doctors. Don't include the neurologist. Some specialists with no background in cancer don't know what they are talking about. Don't include contact for anyone who can't support your circumstances.
As an example I had some terrible pain in my shoulder. The onc thought it might help to see the orthopedic guy in house. He decided with little insight that I had a rotator cuff injury and gave me a cortisone shot. No help. Due to other painful areas of mets onc decided on radiation which solved my shoulder problem. The onc and I agreed the ortho guy would not get a revisit.
You will have an uphill battle because (Thankfully) you aren't stage IV which gets an expedited review and usually approval because of the terminal nature of the diagnosis. Howeve, it isn't impossible. It will depend on how well your disabling conditions are documented.
Include only contacts who can attest to your disabling issues. If you have your pathology reports you can send them after applying online. It helps a little with the time lag. The actual determination is not made at the social security office. They go forward after your states disability determination office (google them for contact info) makes a decision. Once you apply, if you have questions go to that office not SSA. SSA at that point has given many of us bum steers, so to speak.
The online app is fairly easy but do gather all the documents, names and addresses they advise you to before you start inputting info. It definitely helps not to keep stopping and starting the app if you have it in hand for reference.
Search a little further in this forum and you will find a lengthy thread on social security that had been monitored by an attorney who processes SSDI denials. His wife is one of us. He hasn't been on in a long time but you can find lots of info there on this issue.
Nov 30, 2012 11:54 PM ALLYSONPTL wrote:
I'm sorry you're struggling with neuropathy. That is one of my biggest concenr regarding the side effects of Taxotere and Carboplatin. At my first chemo cycle, today, they put my hands and feet into bags of ice! I was to keep them there for one hour! I nearly passed out from the burning pain. I made it for 45 minutes, but then the bags started leaking as the ice melted and they stopped the ice immersion. I do not look forward to cycle 2 and ice again. Supposedly, the ice treatment during chemo infusion decreases and often eliminates the development of neuropathy. So, I wonder if you can do something at this point that may impact your extremities in a similar fashion? Good Luck
Dec 1, 2012 01:13 AM dlb823 wrote:
Allysonptl, I'm not a doctor, but it sounds like what you went through was at the far extreme of the icing spectrum. Keeping your hands & feet in bags of ice for an hour seems like it could potentially cause frostbite. Perhaps next time you can hold the bags of ice in your hands without actually putting your hands in the ice for such an extended period of time, which should keep your extremeties cold enough to keep the Taxotere from circulating there long enough to do damage. JMHO... Deanna
Dec 1, 2012 01:45 AM SuperFoob wrote:
When I had Taxol/Carbo, I used frozen bags of peas for my hands and frozen gel packs for my toes. I bought four of each so I could rotate them out of the Infusion Center's freezer as they would defrost.
I would start 15 minutes before the Taxol and kept at it until 15 minutes after the infusion was complete. I would just dig my fingers into to pea bags (also make sure to keep your wrist on the bag as well to keep the circulation cold for the whole hand) and I used hair bands to keep the gel packs on my toes.
I never had any neuropathy or funky nails. I may have never gotten either one anyway but one never knows.
Dec 1, 2012 07:24 PM Chickadee wrote:
I wanted to add one other thought. The Disability Determination is looking for evidence that your disabling condition is likely to prevent you from working for 12 months or more. So it will be important to know if your onc or pcp thinks there is a chance they can get your difficulties resolved with further treatment.