Hi , I am new to the group. I have enjoyed reading the many positive stories here and have been saddened by others not so positive.
My neurologist referred me to a neurosurgeon who seems to just do Gamma Knife procedures. Now I don't know if its right or wrong for me at this stage of the game but I am going to hear what the man has to say about my situation. I am hoping to get a better diagnosis than my neurologist gave me ( it's TN , we'll use carbamazepine, if it doesnt work consider Gamma Knife) Since then Ive read about MVD which to me, seems the best solution(maybe) and Rhizeotomy(sp)
Carbamazepine( 1000mg daily) has really spaced me out and the breakthroughs are becoming more frequent.
So..what questions should I ask and what should my expectations be?
Hi Rick, Good luck with the appointment. Doesnt seem right if he only specialises in GK as you want to keep your options open for what is right for you.
I have never been to a surgeon but my neuro took my notes off me and asked me to explain without them, i then forgot to ask him half the questions i had, maybe thats why he took them away!
Let us know how you get on, but dont let him pursued you into anything until you have had time to think and research.
For others who may not have read the Face Pain Info pages, here is an extract concerning questions to ask a neurologist or neurosurgeon when you first interview them. And lest I be mistaken, I repeat "When you first interview them". THEY are being evaluated, much more than you.
Who trained you and how long ago? Have you had (or have you taught) recent training in a hospital setting? Continuing education? May I read your Curriculum Vitae? In what local hospitals are you accredited?
How many facial pain patients do you see in an average month? Of these, how many are Trigeminal Neuralgia patients?
For someone with my reported medical issues, what steps will you take to confirm a diagnosis and evaluate me as an individual? How can I help you?
Do you encourage patients to keep and share with you a pain journal? Will you use patterns of pain reported in journals as an input to my pain management plan?
If I am later having a pain crisis or severe breakthrough pain, will you be available for telephone consultation? Will I be able to talk to a triage nurse if you are engaged with other patients?
[for neurosurgery] Which surgery (or surgeries) do you do most often for this kind of pain -- and how often do you do such procedures (a few times per year is not enough)?
[for neurosurgery] Based on what you know about me, am I a good candidate for the treatments you most often provide? Explain why or why not. Do you have literature I can read?
[for neurosurgery] Describe the procedure briefly. What equipment will you use? Who will assist you? How much will this surgery cost before and after insurance?
[for neurosurgery] What is the likelihood this surgery will relieve my pain completely? Partially? For how long? How do you know? Can you refer me to on-line literature that confirms these statistics?|
[for neurosurgery] What are the possible side effects of surgery, and for someone like me how often do they occur?
How will you follow the outcomes of my particular case over the next five years?
I intend to be an active and participating member of my own medical treatment team. Are you comfortable with my participation? Are you willing to take time to explain to me your recommendations or to hear my concerns?
Not all physicians will answer these questions thoroughly or fully. Their time is limited, and some will not be inclined to accept cross-examination. The latter sort of doctor probably shouldn't be in practice, but that's a judgment you don't need to share with them. You need only to look for a better doctor if you feel you're not being heard or respected.
Hi Rick, i totally understand...i am also on Carbotrol 1000mg daily, sometimes more if needed at night to sleep. I feel as if i continue to take the meds that it will only increase and at this point it will only get worse. I too have had it for 2 years 2 months...my neurologist told me i could be on these meds forever...well i don't want to be...so i sought a second opinion. I will be having surgery this friday. I am really excited . My surgeon told me that i was young enough and the chances of it working was 95 %...that was good enough for me. I would rather take a chance then no chance at all. The Gamma knife only last for 3-4 years. Please do your research there is so much information out there... I live in Houston and my doctor is from Baylor he specializes in face pain and TN. Please don't settle and keep on searching. May God Bless you and keep you pain free...
The attached document is the current practice standard of the International Association of Radio Surgery, of which Gamma Knife is one variety. My only reservation about this document is that it may be weighted somewhat to the positive side by the financial interests of the hospitals where several of the author committee work. Hospitals that have invested four to six million dollars in a Gamma Knife Center don't want to hear anything negative about the procedure, and they wouldn't appreciate their accredited doctors registering negative comments about GK.
One of the most important things you should do before seeing a neurosurgeoon is to know as much as you can about this condition and especially what type of TN you have.
There are different procedures with different success rates for the different types of TN.
It’s also important to know there is no 100% success rates, no cures and no guarantees. If you hear those promises from a neurosurgeon, then you have a dangerously uninformed or unethical neurosurgeon. Even if your type of TN has an encouraging success rate for a procedure doesn’t mean you will have success. Additionally, what may seem to be a success could be temporary. The pain could return days, weeks, months or years after the surgery or procedure. There are many here who, desperate to get off medications, underwent a procedure only to have the pain come back and have to return to the medications. Many here were excellent surgical candidates only to have their futures ruined by permanent or even life threatening surgical complications. The surgical permission form that we are required to sign protects the surgeons from all but serious mistakes that are very hard to prove and impossible to fix.
Also keep in mind that this condition is rare enough that many neurologists and even neurosurgeons are sadly lacking in training, experience or both. This makes it all the more important that you learn as much as you can.
I always take two sets of notes, one for the doc and one for me. My first nuero did conduct a memory test through out the appointment so maybe that is what he was doing. But he should have still addressed all your questions.
Scott
elstep said:
Hi Rick, Good luck with the appointment. Doesnt seem right if he only specialises in GK as you want to keep your options open for what is right for you.
I have never been to a surgeon but my neuro took my notes off me and asked me to explain without them, i then forgot to ask him half the questions i had, maybe thats why he took them away!
Let us know how you get on, but dont let him pursued you into anything until you have had time to think and research.
Thanks for that Rick, I did wonder why he took them from me! Red why did hospitals invest so much money into GK if it is not yet proven to be successful over the long term? Is GK is used for procedures other then TN where it is more successful?
Gamma Knife (like Liniac before it, and Cyber Knife after) is used against otherwise inoperable brain tumors, Arterio-vascular malformations, and acoustic neuromas. The procedure can be life-saving in these cancer-related disorders. Though this is a speculation, I'd guess Hospitals invested in GK Centers to attract patients and revenue, as well as to treat problems that would otherwise become fatal. The procedure was generalized to TN with good intentions, but simply hasn't worked out as well as hoped.
My first visit to a neurosurgeon happened during burns received from the medication you mention, Rick.
Any doctor who (Doctor Who) suggests a SPECIFIC surgery 'right off the bat', is not looking out for YOUR interests.
I was "haloed" for radiosurgery until the last minutes-that-seemed-like-hours, when whatever number MRI/CAT was read; and only THEN, the neurosurgeon(s) decided to do an MVD.
Then, as they say, "Talk to your doctor". They are "YOUR" doctor(s).
Treatments haven't been successful, though I know where I stand.
I am not in constant pain and never have been, it's just that something happened to me on January 15, 2007 at about 5:43pm , as profound as watching my two children being born.
Being part of the unnatural part of the natural part of aging, my charts also show a "Pleasant", "Tentative demeanor", for that I am Grateful, bob
My wife and I met with the Neurosurgeon today. I thought it was a good meeting.
He confirmed that I do have TN and said the pain was in an atypical spot, the pain centers between my temple and forehead ,above my eye. I do not believe he meant it was atypical, type 2, TN. Why didn't I ask? I dont know, I simply didn't. I miss alot these days, because of Tegretol, even if its written down.
He went over Gamma Knife ( which he specializes in) RFL, which he also does and MVD which he does not. Thought he did a good job going over the relative merits/drawbacks of each ( he did refer me to another neurosurgeon who does MVD) it was clear that he prefers Gamma Knife and that makes sense since that is what HE does.
All in all it was a good experience. I am very glad my wife accompanied me. She is very sharp and an excellent judge of character and motivation. Given my current condition ( fogginess and lethargy from the medication) it is imperative I have her with me to pick up on the MANY things I miss. ( Thank goodness I was able to choose well 24 years ago)
The Dr. was empathetic and realizes it's a big decision. Not pushy at all.
Next stop for me is The Massachusetts General Hospital to discuss with them my situation. They perform MVD and RFL, and if I am not mistaken, frequently. I'll keep you posted.
I just heard back from The Massachusetts General Hospital. I have an appointment with a neurologist there on January 25. YES!!! Longer than I care to wait but what can I do. I am excited by the prospect of progressing things along to the point where I feel I've done enough due diligence to make a decision.
Hi Rick. Welcome. I joined the group fairly recently myself… Great support andi information to be found here.
I will be visiting a neurosurgon for the first time on Feb. 1st. so your title grabbed me. From everything I have read MVD seems to be the way i might be headed. I’ll be 51 in march and my diagnosis was made very quickly. I am very scared. I don’t know what I am more scared of, the surgery or the pain attacks. It does look like I am also scheduled for a second opinion at Johns Hopkins in Baltimore with the husband of my mother’s best friend just after though so we shall see I guess. My GP doesn’t want me to keep taking all the meds I currently take and my neurologist says that my symptoms are unusual. I always have to be different, oy vey.
Good luck with the neurosurgeon visit. I hope it makes you feel better having additional information
Johns Hopkins has a stellar reputation so lets hope you have the info you need to make your decision soon
Surgery is scary but more predictable than these TN attacks which for me are very scary and then there is the lousy way I feel on Tegretol. I am leaning strongly towards MVD but will not make any decision until after I get to Mass General Hospital
May I ask how old you are and what kind of surgery?
bet6252@yahoo.com said:
Hi Rick, i totally understand...i am also on Carbotrol 1000mg daily, sometimes more if needed at night to sleep. I feel as if i continue to take the meds that it will only increase and at this point it will only get worse. I too have had it for 2 years 2 months...my neurologist told me i could be on these meds forever...well i don't want to be...so i sought a second opinion. I will be having surgery this friday. I am really excited . My surgeon told me that i was young enough and the chances of it working was 95 %...that was good enough for me. I would rather take a chance then no chance at all. The Gamma knife only last for 3-4 years. Please do your research there is so much information out there... I live in Houston and my doctor is from Baylor he specializes in face pain and TN. Please don't settle and keep on searching. May God Bless you and keep you pain free...