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Is this normal?

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Old 07-16-2003, 09:41 AM   #1
Join Date: Jul 2003
Location: Everett, WA, USA
Posts: 2
GreenGene HB User
Post Is this normal?

I'm hoping someone on this message board has had some experience with trying to schedule surgery and can offer me some advice.
In October of 2002 I found myself in the emergency room with abdominal pain. It turned out I was passing my first kidney stone, but the CT scan turned up an abnormal mass along my spine. An MRI and biopsy in November confirmed the diagnosis that this was a Schwanoma, a benign tumor of the Schwans cells that insulate the spine. I was told that it's "fairly large", 2cmx3cmx4cm. I saw a neurosurgeon on Dec 26. She said that I had a 10% chance this would become cancerous and begin to interfere with other tissues in my body. At the time I wasn't sure I wanted surgery, but I called back the next day, Dec 27, and asked to be informed of the risks.

To make the rest of this long story shorter, for the last seven months I have been calling and calling this hospital trying to schedule surgery. I haven't heard from my doctor since that appointment Dec. 26. In May they scheduled me for an MRI ostensibly in advance of surgery. I had the MRI on June 20. I have not had any instructions or contact from the doctor since, despite my many calls.

Has anyone else had an experience with a doctor like this? Is this normal? Does anyone have some advice for me?

Thanks in advance for your responses.


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Old 07-16-2003, 05:42 PM   #2
Join Date: Jul 2003
Location: Arlington,WA USA
Posts: 85
mesueminna HB User

GG I do not have cancer but I can tell you. You need to get a different doctor and do it fast. Like I said. I dont have cancer but have also had a simular situation. I am a transplant paitent. I have had two livers and a kidney. I just recently moved from Virginia to Washington. They are suppose to have one of the leading transplant teams here in the United States. Well I have had nothing but problems with them. I managed to get a appointment and saw a doctor. He was suppose to get me the names of a kidney doctor who dealt with transplants and a liver doctor who also did. When they did not call back I found my own doctors. That was a year and a half ago. I went up to the hospital and had to get a little nasty with them in order to be seen again. You have to be watched at least once a year with a transplant team. They wanted me to give up all communication with my old transplant facility and turn it all over to them. Yet they cant call me back or give me a referal. I lost all trust in them because of this. As you should have with your doctor. Your going to have to get another doctor on your own. And you should also contact the board of health in your area and report him/her. There is no call for waiting this long to get back with you. Or go sit in their office and demand the doctor see you. And calling the media is a good place to get your story heard as well. Just my 2 cents.

"Every experience God gives us, every person he puts in our lives, is the perfect preparation for the future only he can see."
I am 35 years old. I have had two liver transplants and a kidney transplant.
Just diagnoised with thyroid cancer.
Married for 16 years.
One son deceased now.

Old 07-16-2003, 05:44 PM   #3
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No, this is totally not normal! Despite the fact that your situation is apparently not considered an emergency, or even "grave", it is not normal for a doctor to not get back to you for months after you've had a scan. The doctor also should be talking to you about your options: if you delay surgery, the risks are-----: if you have surgery the risks are-----; what I as your doctor would recommend is-----.

Do you have a regular internist? I would call that doctor and ask him/her to speak to the surgeon.

Another option is to find another surgeon (to get a second opinion) and gather all your medical records to take to this second doctor.

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