It inspired me to write my own instructions for a hospital stay...make sure to visit the "How to prepare for a hospital stay" page. The information there can be used as a guide.
Below are a few of the questions that I sent to my surgeon prior to my brain surgery. I’m proud to say that he answered every one! These questions can be used as a guideline for any procedure.
- What is the number of this type of procedure performed by you? How frequently? When was the most recent?
- What is the size of my CA? Is it considered small, medium, or large? Discuss the significant risk for me.
- Is my condition life threatening now and/or as I age?
- What is the exact % of risk at this time for a re-occurrence? During our discussion, you mentioned significant, what is meant by significant? Is it more significant due to the fact that there is a VM and a CA?
- What is the % risk increase per year?
- If it does bleed again, what, if any permanent damage is possible?
- Would it/ is it like what I’ve already experienced or could it be worse?
- Would there be a metal plate used to close the skull? If used, does it prohibit a future MRI/CAT scan for any reason?
- Exactly what areas of the brain would be affected?
- What are the REAL risks associated with this surgical procedure?
- What are the possible complications that could occur?
- What is the possibility and % of risk that any or all complications would be permanent?
- After surgery, what do you estimate as the amount of time before I would be “normal” again? For example: Speech, strength, daily functions for work, memory, driving, etc.
- What are the pros and cons as you see them?
- Is the closure done with sutures or staples?
- Exactly how much hair would be shaved and in what pattern.
- Is it possible and/or do you recommend speaking with a patient who has experienced this same procedure in the same location in the brain? Why or Why not?
- Are you currently treating any patients that have had one bleed and have not chosen surgical removal at this time? Is it possible to speak with her/him?
- How many patients and what % of them have a surgical removal of the CA after one bleed? How many decided to wait? How long has it been since their 1st bleed? What % had surgery after two?
- How many patients are you currently treating for this condition?
- What makes me a good candidate for a successful procedure?
- Would the surgical procedure be viewed or videotaped as part of a training or case study?
- Are there other alternatives besides surgical removal or do nothing and wait?
- Is removal prior to another bleed better/preferred? Why or Why not?
- Is there more of a risk since there is also a VM? Can it be easily seen/detected and left alone during the procedure? What is the chance that the VM could bleed on its own? What % of VM’s bleed? Exactly where is my VM located in relation to the CA?
- What would be required pre-operatively? Post-operatively?
- During this type of procedure are blood transfusions usually needed or necessary? Why or why not?
- How much follow-up is required after this surgery?
- If you had an AVM/CA and needed surgery, who would you want to be your surgeon? Why?
- Who would you recommend for a second opinion? Why?
- What is the ideal time for surgery for this? Now? 6 months? Longer? Does the sooner the better apply?
- What % and/or number of your patients have experienced any permanent damage as a result of a hemorrhage and/or as a result of the surgery?
- What drugs/medications will be used prior to, during, and after the surgery?
- Are there any medications or supplements that I need to discontinue prior to surgery? If there are, how soon can I return to taking them after the surgery?
- What music do you listen to during the procedure?
To learn more about AVM’s and CA’s and other rare disorders visit NORD - The National Organization for Rare Disorders. A NORD resource guide lists detailed information on national support groups, patient organizations, government agencies, and foundations that serve the needs of people with rare disorders and disabilities. Contact them at 203-744-0100/ www.rarediseases.org or email them at firstname.lastname@example.org
I view the patient/physician relationship as a partnership where communication is the key. Prior to all doctor appointments, read and research information on conditions and treatment options that pertain to your health issue. Write down a list of questions that you need answered and tests that you believe should be performed. Discuss them with you doctor during your time together ~ it will make a difference.
"Surviving Hospitalization", a personal account written by Dr. R. Mayer, can be found in the September 2004 and October 2004 issues of Our Toxic Times. To order your copy of the article, contact CIIN 406-547-2255/ www.ciin.org. This article contains excellent information for the chemically sensitive individual!