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-   -   Burning and Swelling 9 mo. after surgery (https://www.neurotalk.org/arnold-chiari-malformation-and-syringomyelia/183529-burning-swelling-9-mo-surgery.html)

Twyla 02-05-2013 02:28 AM

Burning and Swelling 9 mo. after surgery
 
I just registered with this site and found it while looking for answers on the internet. I am 56 years old and had my decompression Surgery May 2012. I complained of pain, burning and swelling on the left side of the surgical scar when I went back for my check up at the post 6 week appt and was told I was still in the healing stage. My insurance expired and I was signed off as a successful surgery.

It is now 9 months since my decompression and I have continued to have problems. In the last 2-3 weeks it has gotten so bad that I can't function. The left side of my scar is burning and swelling, I ice the area and lay flat for hours. I have a cronic cough, vertigo, dizzyness, can't remember certain words when speaking, pain in limbs, continued sever sharp head pains, nausea, spasms, back of head neck and spine inso much pain, I can't be active without paying for it later, etc. I also have Occipital Neuralgia and Gerd. I have become a recluse out of shear pain and fatigue. I take both prescription medications and over the counter medications that I was instructed to take. I am coming to an end of the prescription medications I have and don't have any more refills.

I am concerned there may be a spinal fluid leakage and without insurance I just don't know where to turn. My neurosurgeon office staff told me when I was signed off that if I had any further issues I could be seen as a new patient. I was told to just give them a call if I needed to come in. I have called and haven't been able to get past the person that answers the phone. My neurosurgeon is a top notch surgeon but without insurance I can't seem to get an appointment.

Can anyone tell me if my symptoms are normal or if I need medical attention? Or any help finding someone that can see me without insurance.
Thanks

razzle51 02-10-2013 06:55 AM

sorry that happened . It is not a fix.. are you elegiable for ssi or ssd

Twyla 02-10-2013 08:29 AM

Quote:

Originally Posted by razzle51 (Post 955960)
sorry that happened . It is not a fix.. are you elegiable for ssi or ssd

Thank you for your response. I have tried to research if I am eligible for ssd/ssi/Medicare and so far I have been told because I am not working I do not qualify for ssd. I am not old enough to collect ssi. And according to the eligibility form for Medicare my husband makes too much money for me to qualify, but our only income is his monthly social security. I don't know if I am just not asking the right questions or not finding the right connections or what. I'm at a loss as to what my options are at this point.
I was also just starting to be tested for fibromyalgia when my insurance ran out so the diagnoses is not in my file.
Please, if there are any answers, options, ideas, help, I would greatly appreciate any advise available.

razzle51 02-11-2013 06:45 AM

how can your insurance run out?? Since you are not working is it your husband plan... they just cant take you off... sorry I am confused

Twyla 02-11-2013 10:08 AM

Quote:

Originally Posted by razzle51 (Post 956231)
how can your insurance run out?? Since you are not working is it your husband plan... they just cant take you off... sorry I am confused

My insurance was from my previous job and I was on Cobra. This particular plan did not allow for the extended California Cobra extension so the insurance expired. By law the insurance company must give me a proof of insurance letter good for 60 days to find another insurance. They sent me the letter 32 days late and I had 28 days to get another insurance. I tried to get insurance from several companies and although they can not deny you insurance, they can by law review your medical history and increase your premiums up to 71% which puts any insurance policy way out of reach.... but they are not denying you. My husband only has medicare that comes with his social security. His previous job did not offer medical insurance.

razzle51 02-12-2013 11:37 AM

Oh ok I see . Cobra is soooooo expensive . Have you worked at all thru your life . If so you might want to try Allsup..

Twyla 02-12-2013 11:44 AM

Quote:

Originally Posted by razzle51 (Post 956566)
Oh ok I see . Cobra is soooooo expensive . Have you worked at all thru your life . If so you might want to try Allsup..

I worked from age 17 thru 53. I have never heard of Allsup. I will try to look it up on the internet. Thank you.

Twyla 02-12-2013 12:03 PM

Still burning and swelling
 
The back of my head is still burning and swelling, I am continuing icing and laying flat for hours every day. My cronic cough continues to send explosive head pains from my neck into my head. I'm sure my Occipital Neuralgia is partly the cause of the neck pain but I feel this is still a Chairi issue.

Anyone else having this burning and swelling? What are you doing for the pain? Is there another treatment that has worked for any of you?

brainiac 03-04-2013 09:55 PM

Quote:

Originally Posted by Twyla (Post 956573)
The back of my head is still burning and swelling, I am continuing icing and laying flat for hours every day. My cronic cough continues to send explosive head pains from my neck into my head. I'm sure my Occipital Neuralgia is partly the cause of the neck pain but I feel this is still a Chairi issue.

Anyone else having this burning and swelling? What are you doing for the pain? Is there another treatment that has worked for any of you?

The swelling sounds like you have a small leak,I recommend you get a MRI with Gadolinium, I had a bad leak and the symptoms were, I was very sleepy,groggy, always tired and slept 12-14 hrs a day until eventually I had a Grand mall from it then I had a shunt put in, but sorry I can't help with the insurance, and yes you are right about the Occipital Neuralgia.

Twyla 03-05-2013 10:00 AM

Quote:

Originally Posted by brainiac (Post 962882)
The swelling sounds like you have a small leak,I recommend you get a MRI with Gadolinium, I had a bad leak and the symptoms were, I was very sleepy,groggy, always tired and slept 12-14 hrs a day until eventually I had a Grand mall from it then I had a shunt put in, but sorry I can't help with the insurance, and yes you are right about the Occipital Neuralgia.

Brainiac, Thank you for your response. I am working on finding insurance so I can get back into the Dr. I feel that there is a tear in the mesh also and it seems to be getting worse. I don't know if I am going to be able to wait for insurance availability that I can afford. I appriecate your input more than you could possibly know.


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