I’m a 32 year old sufferer for 2 years headed to Neurosurgeon next week. What will the first consultation be like? I see people have had the MVD and gamma and I’m unsure which one and would be best, and a lil nervous about the first consultation. Any advice for first consult and MVD vs. gamma knife
Do your research before you go hear are the questions I had for the doctor and take your last MRI films I asked a lot of question do not be afraid to ask the question that you might be insulting I apologized to the doctor indvance that some of my question might be insulting and I was sorry good luck
Gamma Knife
What is Gamma Knife? / Cyber Knife what is the difference
How is the Gamma knife performed & just what does it actually do?
How long does it take?
I am claustrophobic how long are you in MRI tube and can I be sedated a lot
Is there difference between Gamma Knife and Cyber Knife?
Where does the nerve get radiated at & what damage does it due?
What is the success rate?
How long does it take to work after Gamma Knife?
Do you get full or partial relief?
How long does a Gamma Knife it works for?
What are the complications?
The damage that it does will it affects the success of future MVD?
How many Gamma Knife’s can you have before it caused too much damage?
How many have you done?
What proportion of your patients get full relief versus partial relief?
What proportion of your patients get facial numbness, tingling?
MVD (Microvascular Decompression)
What is an MVD?
How is the MVD done? What area of the brain is the MVD performed? (Pics)
What material do you use to pad nerve with?
Do you usually find the compression with an artery or vein?
If you find it in a vein what procedure do you usually do padding or sealing them?
How often do you find multiple compressions?
What procedure do you use to cover the skull opening?
What are the complications?
How many days in hospital?
How long is the recovery period?
How long before pain goes away?
Doctor
How many do you do and how often?
Do you do follow-up surveys of your patient outcomes, and if so for how long?
What percentage of your patients are pain free initially or within six months after MVD for conditions similar to my presentation?
How long are your patients usually pain free for?
What proportion of your patients have had to have multiple MVD
What proportion of your patients have developed cerebral spinal fluid leaks?
What proportions of your patients have had permanent Hearing loss?
What proportions of your patients have had permanent facial numbness and vision problems?
What proportion of your patients that developed infections, meningitis, brain swelling or bleeding, strokes or seizers?
What about the development of scare tissue and adhesions?
I just had my appointment with the neurosurgeon a couple of weeks ago. He looked at my MRI asked some questions about the pain where at and how it felt what side was it on was it on both how long ect. then explained the options for me Cyber knife Gamma Knife or MVD and explained in detail what they were and what his opinion was. If you do not have a MRI he will probably order one he also did a few neuro checks that was all appointment lasted about 40 min.
I saw a neurosurgeon about a month ago. He instisted I have the MRI done before the appt, so he could look at them. He explained what the MRI showed and went through all my options. He was careful not to emphasis one over another, just told me the pro and cons of all of them. He said some patients would do anything to avoid getting major surgery while others want to jump into the surgery right off the bat. He said he wants the patient to really think about the options and normally doesn't do the MDV until the patiernt had tried two or three medications first. It is always up to the patient in the end. This Doctor spent 2 hrs with me, with someone else in the waiting room waitng for him. I felt really guilty when the time was up, because I don't think I will be using him. He does about 15 MVDs a year, but there is a Doctor a few hours away that I believe does them more often. After reading 'Striking Back' I want the Dr that does more of them, as long as he is good.
I was 55 years old when I had my MVD surgery. I did my research and traveled to another state to go to an experienced neurosurgeon. I went asking about the Gamma Knife or MVD. He told me since I was in good health that the Gamma Knife was not an option for me. That procedure would damage the nerve. His recommendation was MVD surgery because it is non evasive to the nerve. If the Gamma Knife was done first then MVD may not work later because the nerve is damaged. I went in with a long list of questions. He took his time and answered every one. I had dealt with TN for eight years and was on a lot of meds. I really felt the MVD was my answer to having a chance of being pain free. I scheduled the date for my surgery before I left his office. I had never had any surgeries before so this was scary. Three weeks later I had the surgery and have been pain free now for five years.
The doctor I saw only did 10 a year there is a doctor at the Barrows Neurological Institute he does around 15 or more year I did not think that was many either but he is the go to guy in our state I have to try to change insurance to go to the second doctor I was not so sure about the first doctor because of his numbers then the doctor at Barrows said he only does about 15 but I gues the question is how many years have they done them for I know it is not a common surgery but how good is the neurosurgeon other wise Barrows is one of the top Neuro hospitals in the US my other choice is to go 2000 miles away that is if Dr. Casey would even take me I have not asked yet I am not sure what I want to do yet 15 may not be a bad number I know a person who has had the surgery by the doctor at Barrows and had done really well he we was fully recovered in 2 weeks But I am not so sure about the doctor that has done only 10 a year
I think Kat covered all the important questions. Based on my MVD experience (9 months ago), I'd ask not just how many patients are pain-free after 6 months/1 year, but do any continue to need meds. I am still taking 100 mg. of Tegretol. I have an occasional "shock" about once every 2 weeks or so, even with the meds. (I think of it as a reminder that the beast is still within.)
I saw 2 neurosurgeons, both from the same practice. The first did the Gamma Knife. I went in thinking I would definitely want that because the idea of having brain surgery terrified me. However, the thought of being in a halo for a day for Gamma Knife, made me want to vomit. Anyway, based on my age (55) and general good health, he strongly recommended the MVD. After my appt. with the second surgeon, who specialized in MVDs, I realized it would give me the best chance of being pain free. And after reading everything I could find on it, it did seem to be a very low risk operation (for brain surgery, that is!) I still have hope that I can be totally off the Tegretol at some point.
Good luck, and let us know how it goes! Suzanne
Maybe I am skeptical, but I do not trust doctors to be honest about their complication rates. If this is a concern, I would suggest you contact your state medical board, and see if they have had complaints filed against them
KATTHOMPSON4 said:
Do your research before you go hear are the questions I had for the doctor and take your last MRI films I asked a lot of question do not be afraid to ask the question that you might be insulting I apologized to the doctor indvance that some of my question might be insulting and I was sorry good luck
Gamma Knife
What is Gamma Knife? / Cyber Knife what is the difference
How is the Gamma knife performed & just what does it actually do?
How long does it take?
I am claustrophobic how long are you in MRI tube and can I be sedated a lot
Is there difference between Gamma Knife and Cyber Knife?
Where does the nerve get radiated at & what damage does it due?
What is the success rate?
How long does it take to work after Gamma Knife?
Do you get full or partial relief?
How long does a Gamma Knife it works for?
What are the complications?
The damage that it does will it affects the success of future MVD?
How many Gamma Knife’s can you have before it caused too much damage?
How many have you done?
What proportion of your patients get full relief versus partial relief?
What proportion of your patients get facial numbness, tingling?
MVD (Microvascular Decompression)
What is an MVD?
How is the MVD done? What area of the brain is the MVD performed? (Pics)
What material do you use to pad nerve with?
Do you usually find the compression with an artery or vein?
If you find it in a vein what procedure do you usually do padding or sealing them?
How often do you find multiple compressions?
What procedure do you use to cover the skull opening?
What are the complications?
How many days in hospital?
How long is the recovery period?
How long before pain goes away?
Doctor
How many do you do and how often?
Do you do follow-up surveys of your patient outcomes, and if so for how long?
What percentage of your patients are pain free initially or within six months after MVD for conditions similar to my presentation?
How long are your patients usually pain free for?
What proportion of your patients have had to have multiple MVD
What proportion of your patients have developed cerebral spinal fluid leaks?
What proportions of your patients have had permanent Hearing loss?
What proportions of your patients have had permanent facial numbness and vision problems?
What proportion of your patients that developed infections, meningitis, brain swelling or bleeding, strokes or seizers?
What about the development of scare tissue and adhesions?