View Full Version : ssi let downs

06-28-2004, 01:23 PM
i was told i had scoliosis when i was 13 yrs old., but my parents never thought much of it and never got it checked out. well now
im 28 and had no other choise to go to the hospital for complete body numbness in my body. severe pain through my lower back,shoulders and right leg and right hip. they said i had a spinal cord injury,scoliosis, lordosis, and kyphosis. i have never been told the degree and i have asked.the only say that its progressing and it will get much worse. the problem is i have no insurance and all the companys i have called want except me. so i dealt with the disability company and have been turned down three times and they have everything over the years from all the doctors and specialist. they feel that i should take it easy but go back to work in 9 months, but if cant call back. now i havent worked since 2001 because the pain has been to severe to tolerate. and all ssi says your fine. how can i get them to understand that im not a run of the meel person looking for a free hand out? suggestions please.:confused:

07-12-2004, 05:46 PM
You need to see an attorney that specilizes in SSI/Disablity. Choose one that takes payment only after you win. Also be prepared to wait.....SSI takes it sweet time. Also make sure you document every little visit/pain etc.
It took me nearly 5 years before getting it........

08-19-2004, 12:45 PM
Would you please tell me what was or is the condition of your scoliosis. I have recently applied for SSDI and just starting the game, I do understand the procedure, just curious on your disability and what SSA had to say about it.

08-25-2004, 03:44 PM
my condition in my scoliosis is i have levo scoliosis which is to the left and very rare.it is in the thorasic. reversal of lordosis in the cervical, cervical and lumbar radiculitis. torticolis in neck.

08-26-2004, 12:26 PM
Your application for Supplimental Security Income (SSI) should be approved, depending on your local state application and qualifications. Usually you need to show hardship and no income, it will be based on what your state average is for SSI and if other forms of assistance is available.
Social Security Disability Income is much more difficult to receive, depending on your credits, work history and disability. I too applied for Social Security Disability at the age of 42 because of my severe scoliosis and fusion. But was determine to be able to work, so I did for another ten years, now I'am unable to perform sedentary work or stand for any length of time so again I'm applying for SSDI. I believe that my age and the degenerative condition of my spine will assist me in obtaining SSDI this time around. Good luck.

08-26-2004, 03:40 PM
i have tried many times and have been denied. the last time was because the past doctor would not send x-rays and they sent me to their own which was big mistake. he new what i had by the records and was told to x-ray and mri me but instead he made me bend twist lay down and then sent them reply that saw anything wrong. im dealing with florida laws which is very hard to fight. but now i just got approved today for medicaid with share cost and the problem is that no one here or in surrounding counties except medicaid with share cost let alone ever heard of it. but i will say st josephs hospital for women is trying to find a speacialist who will except so i can get new x-rays and ect. long haul still to go.

08-26-2004, 04:21 PM
Having been thru the "SSI Fight", I'm a strong believer in getting an attorney. You can get an attorney that will deal with the system for you and won't charge you until you get paid by SS. The payment will be retro active. So the first check that you would recieve is minus the attorney's payment. It took me 5 years, but it was worth the fight.
Good Luck

08-29-2004, 11:36 PM
This SSI fight nearly cost me everything I own. But, I finally won after two years.
I started the process two years ago, went to the SSI ortho doc, was told most assuredly "yes, yes, you are disabled, I can see that", and then promptly received a letter in the mail two weeks later telling me I was denied. I was told the disability is not as severe as I believed it to be.
I have a thoracic curve of 56, lumbar l20. And, they think that is not severe. I immediately retained the services of an attorney, and the fight began.
Along the way the attorney was not sure I would get it. Which seems so absolutely absurd. You can see this curve a mile away, the hunch is severe, my sitting and standing tolerance extremely poor. It was documented that I was prescribed MS contin so I could continue work as an RN, but, that eventually caused a ruptured colon, with resulting colostomy. No doctor in his right mind would now ever prescribe any pain meds, so I live in constant, debilitating pain. SSI knew of many visits to pain specialits, orthopedics, was told at first it was inoperable, but, the fight persisted.
Yes, I finally won. But I am weary from the fight. I live in New York State, and I don't know if the process is much different here than elsewhere.
Good luck.

09-01-2004, 02:14 PM
I some what know what you are going through.. I am currently waiting for my ssdi.. I am having this feeling that they are going to turn me down on my claim.. but i am one step ahead of then just incase the decide to turn me down. I have already went and found me a lawyer. He told me that he doesn't think that they will turn me down but there is always that chance and he says that he will be able to help me get what i rightfully deserve.. Don't give up there is always a way..

09-02-2004, 12:10 PM
Will I guess we are not alone in our fight for our rights, it does seem that some medical experts do not understand our pain and discomfort. As for my fight with and for SSDI, it has just begun, but I already had a MRI that confirms the pain. I too will not stop until I win this one, at my young age of 54 I can not find a position that will provide the necessary work accomodations, I'm limited to four hours per day with sit/stand options, but again my walking and sitting is limited with rest periods necessary. So this will be interesting, so far, knock on wood, things are going pretty good. I glad we have this forum to discuss issues and concerns with peers, it make me feel not alone.

09-08-2004, 07:33 PM
Exactly150, there is an essential oil that will help the pain if you are willing to try alternative therapies! It's helichrysum. Just a few drops rubbed on the area helps pain a great deal. My dad gets debilitating pain from his neuropathy, and rod ends (herrington surgery) and the helichrysum reduces the pain up to 85%!! Helichrysum is expensive though, but it might be worth the cost.

For those doing ssdi, hang in there. SSI's first job is to prove how you aren't disabiled. Then to prove you can work. When you go to the SSI docs for evaluation request a copy of the doctor's notes. That way you have proof of what was put in the charts. (my parents have learned that the hard way!) Also be sure to document everything medical. The more info you have the is current the better are your chances. SSI also refuses the first time for almost everyone, so having an attorney is important. They know the rules and in and outs and can guide you correctly through this ssdi maze. There are other appeals as well. My mom's attorney has done a 2nd appeal, turns out the judge didn't look at the medical records. SO now she wait again!

09-09-2004, 12:06 PM
Thank you MaryK, appreciate your response and I will look into the helichrysum where would the best place to start looking? Also agree with yours and others regarding an Attorney, SSDI usually turns down over 50% of first applications for Social Security Disability Income. Since presently it is not totally necessary for me to receive SSDI, I have applied on my own behalf, I will contact an Attorney at the point that it will or might be necessary. Like I have said, my medical documentations and diagnosis, good or bad support my application, along with a MRI. But I understand the power of Big Brother and I will not hesitate to obtain an Attorney at my appropriate time.
Again it is so comforting to know that after all these years, that this forum exist and I'm not alone.
Keep up the fight and no surgery for this guy, I'm done with the medical model and specialists that want to play experimental games.....this is my own personal views, surgery is a personal thing and depends on the individual and their ability to handle the pain and discomfort.....

01-07-2005, 07:02 PM
I live in California and I was 19 when I won my SSI and Disability claim. But it was a long and tough process. One of the best thing's that I did for myself was cut out the middle man whenever I could. Any medical records or x-rays needed I picked up from the offices and made copies and mailed those to Social Security etc. I was denied for a year and a half before I got my claim and I did it without an attorney. Just keep at them, and make your case sound as painful as possible. We all devolp a threshold of pain that we are use to on a daily basis, but that is our norm because we are SO use to the pain. What I'm saying is tell them about the pain without that pain filter that we have all devolped. It is really tough to get SSI and besides insurence sometimes the benifits are a pain in the butt so make sure you can live by their regulations. But for me, it's helped me go to school and have an apartment (no that is NOT easy in California).

01-10-2005, 01:04 PM
SSDI is bettersweet news, if you receive the benefits because of your disability, it is an indication that your not expected to be resonably gainful employed again in your lifetime. Now don't get me wrong, it depends on the condition and motivation or abilities of the individual with the disability. Regarding if they wish to continue to work in any capacity (Part-time or Full-time), we also must take into consideration any financial benefits, longterm regarding SSDI and insurance.
I'm very pleased and happy to inform everyone that my SSDI was approved on my first try, that is why I consider it bettersweet news, I also eliminated any middleman or middleperson. Remember it is YOUR money and YOUR disability, each person must consider their own future and financial security. I have been blessed with an optomistic personality and a future.
God Bless.....

03-07-2005, 11:25 PM
Just happened to see teh post and see if any success. I had to hire a lawyer for a few reason mentioned. I also had my lawyer fight my credits they did want to give me. I was young and could not work as much during pregnancies so keep that in mind when going to court. If you get these credits in in the alloted time you are intitled to Social Security Disability, not S.S.I. It gives you Medicare benefits this way. I have learned the hard way so just passing it on to give someone a leg up. I hope all goes well. I am also in Fl. If you need advice don't hesitate to call a lawyer and get help. They don't cost as much as you imagine and it is made up for. ;)

08-15-2005, 06:35 PM
Hi, I understand what you are going through. I didn't start feeling the pain in the spine and lower back until about 18. I am also 28 and have gone to 2 SSI/disability doctors, both denied me, so now I have a lawyer and am headed to court Sept 1. I deal with lower back pain everyday and am on 2 meds. One for the pain and the other for a pinched nerve I had at the base of my spine at the talibone and this happened back in May and I'm still dealing with the pain. It is very difficult for me to stand for long periods of time and now it hurts to sit and even stand up from sitting. They claim I became disabled 2 years ago but in fact I have been since birth. I had to have surgery when I was 4 because I did not have the arch under my left foot and my left leg is about 2 inches shorter the the right. The unbalance of my body caused the scoliosis. I sympathise what you are going through.

08-17-2005, 07:35 AM
Hey Cajun,
I am so glad to hear you did not give up, and that you appealed. I had to appeal and they tried to discourage me in anyway they can. I now am trying the same for mu daughter that had horrible migraines and they turned her down to. Myadvice to anyone after all of my ordeal is to have cat scan done with dontrast (myelogram). I t shows so much and tellls a better story for te doctors to seee. i am one month out of surgery myself and if it wwasnt for me pushing I would not be on this road to recovery. Good Luck.

01-04-2006, 03:27 PM
I live in Florida also. I had to leave my job in September (it did not offer insurance) because of the numbness in my arms and legs. The pain was to much to sit and to much to stand. My younger sister is a real estate agent who let me work for her for a few months. I am so upset with the way things are right now. I am fifty, in constant pain and no job or insurance. I am alone so there is no other income. I was thinking of SSI but have been able to go to the dr for years. Any suggestions? I have been in pain since I was in the third grade, was not diagnosed until the age of 17 when my stepmom yelled at me to pick up head. i am trying to live by one simple rule, "And this to shall pass".

Karen Ocker
01-05-2006, 10:42 AM
Is there any way you could visit a nearby University Hospital adult scoliosis clinic and get free care that way?

01-05-2006, 01:36 PM
Perhaps there is one in Tampa, that is about 50 miles away. Thanks for the idea.

01-06-2006, 05:36 PM
Hey Robin,
Sorry to hear that you are having such a difficult time. I had to wait along time to get SSD, so my advice is keep trying. I also know doctors in the area of Orlando and Clermont that are really good about working things out as far as payments and so on. They are located Clermont Office
235 Citrus Tower Blvd #102
Clermont, FL 34711
Phone 352-242-2826
Fax 352-242-0877

Orlando Office

1131 Orange Avenue
Orlando, FL 32806
Phone 407-849-1200
Fax 404-841-6940

Davenport Office
40124 US Hwy 27 #101
Davenport, FL 33837
Phone 941-4191277
Fax 941-421-4247

Ocoee Office
10000 West Colonial Drive #483
Ocoee, FL 32861
Phone 407-849-1200
Fax 407-841-6940


They did my surgery and I was impressed. Orlando Regional is by far the best hospital maybe you can go there. At least call them and ask if they know of anywhere else you maybe able to go. Stephanie in the orlando office is a nurse that is resourceful and very nice. Good luck with the SSD as long as you worked and have credits in that they require you will get full SSD not SSI. Look on SS.gov website to get more info. Take Care. Krystal

01-14-2006, 04:33 PM
I live in Florida and was denied SSDI 3 times before I finally was granted this December 22nd 2005.
I applied for it in April 2002 and it took me all this time to get it but it is possible.
Fight for it.
Document everything. Go to your doctor every month for regular monthly checkups and pain management.
Get a pain manager doctor ASAP and make sure that you are very clear how much pain your are in all the time.
Do not let them get you on depression unless you really are depressed.
It will speed up your SSDI approval but you will also get a label for mental disability instead of just physical disability.
Keep all your own medical records and be able to copy them and fax them at any given time should anyone ask to see them.
Also, a few letters sent off to some state reps doesn't hurt. ;)