Neuro wants to keep pumping me with meds that make it REALLY difficult work / think / enjoy life. He IS NOT LISTENING!
I asked him (my husband said I was too nice) to refer me to a neurosurgeon. He said for me to 'increase my meds, call him in a week or two, and then we'll see.' I'm not going to increase the meds...NEED to function without being a complete vegetable! He wants to refer me to radiation (Gamma Knife) - I asked him about MVD and told him I would prefer the surgery; get it 'fixed' the first time. He looked at me like I was totally uneducated and of course he knew the BEST course of treatment... (wish I could trust him; just don't know him well enough nor do I think I want to!!)
UGH! How do you suggest I approach him? Do you have an opinion toward GK vs MVD???
Do you have to have a referral for insurance reasons? I found my Neurosurgeon on my own. The neurosurgeon that I was refered to didn’t even do the MVD surgery. I pulled up a list of Neurosurgeons from my insurance a started calling and searching the web. Turns out it was hard to find one who does this surgery and has experience, for me at least. One receptionist even asked me how to spell Trigeminal Neuralgia! I learned so much about different treatment for different types of TN from this site and from the book “Striking Back”, which I bought used from Amazon. I totally feel the same way about the Medications. I was bearly a functioning level by the time the combination was starting to work. If you can find your own neurosurgeon without needing a referral, that is what I did and would suggest you do. If you have to have a referral tell him you want to gather all the information about your options so you can make the right choice for you. Maybe take your husband with you to help push the point you are tring to get to. If that doesn’t work the FIRE the neurologist and find a new one!
Thanks Alyssa
It is so difficult to NOT be too ‘aggressive’ when I ask, and then I’m not listened to! I appreciate your feedback and suggestion… I guess we are unique in this situation, huh…
Sorry, was using weird computer. FIRE that doctor!
Learn all you can as fast as you can and your life has a better chance of getting better quicker.
Look under the Doctors Tab above -- I actually flew to Michigan from Missouri to have my MVD done by one of the best.
Those meds drove me to it!!!!
for now - find a neurologist who has TN patients - or find a neurosurgeon --- unless you need a referral as AlyssaBella said
read that book and all you can on the Face Pain tab
I had to lower my meds to study TN for my MVD.....SO my wonderful neurosurgeon gave me topical Rx Lidocaine patches for breakthru pain AND 1 Bottle of Ritalin to focus on what I was to study....... I got these Ideas here and put them together
Your right KC!
I am a nurse ( for 12 years - about 15 years ago) and at that time, a nurse gave the doc the ultimate respect… OK, NOW I AM THAT PATIENT AND I’M JUST DONE W/ THAT MENTALITY!! …guess that’s why I am no longer in that profession, huh.
I do have to have a referral, but I have a family doc that referred me to my neuro… I am gonna do what you guys suggest and find my OWN neurosurgeon that’s on my insurance - ask my GP (which has known me ALL my adult life and I trust completely) to refer me. I have mentioned the lido patch to my neuro and he gave me that look … The one that says ‘…If I didn’t mention it, then it is automatically wrong…’
KC, how was the trip to and from the hospital? I have been in a plane one time since this all started almost 17 months ago and it took me a while to stop having really bad flare ups.
Thanks! I always appreciate what y’all say and really take to heart your recommendations.
I have already made the decision that if mine gets to the point that meds aren't working, I am going for the MVD. I know it's more invasive, BUT it has the highest success rate and if I am going to go through anything to get it fixed, I want the highest chance that it will work the FIRST time. I don't want it to come back in a year and have to go through some other procedure! Maybe print off the list of all possible procedures and their success rates and take that with you and tell him WHY you want the MVD. Best of luck! (((hugs)))
If you so not trust your doctor in the beginning you will not later. You need to find a new Neuro that you can trust and know in your heart that he is their for you.
I flew there but we spent 2 days driving home -slept a lot at the hotel - like 20 hours!
Most people on here have had MVD / waited a couple of days / flew home and had no issues on the plane
I had hubby drive because I was too afraid of issues - but I have high anxiety at times so I would have worried myself to death probably for NO reason!
I would have flown to Australia to feel this pain free life....... be aware MVD can only last sometimes months or years, but some of us always keep the door open for a second round! Also, many many people with MVD come back here on pain and need help - most that are successful -come back and report - then don't come back because they don't need to have the support anymore
I only had TN for ONE year and it changed my life so profoundly (and because I'm a Social Worker in life and in personality) I come back to give hope and help to others - MVD 14 months ago
cris said:
Your right KC! I am a nurse ( for 12 years - about 15 years ago) and at that time, a nurse gave the doc the ultimate respect... OK, NOW I AM THAT PATIENT AND I'M JUST DONE W/ THAT MENTALITY!! ...guess that's why I am no longer in that profession, huh. I do have to have a referral, but I have a family doc that referred me to my neuro... I am gonna do what you guys suggest and find my OWN neurosurgeon that's on my insurance - ask my GP (which has known me ALL my adult life and I trust completely) to refer me. I have mentioned the lido patch to my neuro and he gave me that look ... The one that says '...If I didn't mention it, then it is automatically wrong...'
KC, how was the trip to and from the hospital? I have been in a plane one time since this all started almost 17 months ago and it took me a while to stop having really bad flare ups.
Thanks! I always appreciate what y'all say and really take to heart your recommendations.
Thanks KC
I live in Tenn - and need some people who have doc’s in the south (SW, SE, S, MID SOUTH, etc) to suggest too. Driving would be a much better alternative, I think, for me…but am DEFINITELY open to the possibility of going farther to have it done right.
Your success is directly correlated with the experience of your doc; I believe that whole heartedly!
How was your recovery - any thoughts to help someone else that will / maybe will be traveling for the MVD?
I babied myself after MVD - stayed in bed most hours for 2 weeks -- every time I had asked Dr Casey " when can I do_____" his answer on everything is "when you feel you can"
I was terrified of having my staples taken out of my head - I took a pain pill then went to local dr. -- did NOT hurt at all....
I think my pain tolerance is less than others and my anxiety higher than others -- Another plus is that the TN Assoc. has an in-person support group here that my hubby and I still go to.
I picked my surgeon based on videos, the book he wrote, and the fact that he emailed most of my pre-op stuff back and forth - extra bonus - there was a 2 bedroom apartment that the hospital rents out - cost $90 per night -- we went 1 night early, went to Canada for lunch - met the doctor - had surgery following day - 2 days in hospital---(One in ICU and One in regular room) - 1 more day in local apartments "just in case" - and started the drive home.
I had a relapse - emailed him quite a few questions - connected with my good neuro here - and got thru it.
Wow…thanks for the info! Your story makes me FOR SURE want THE doc that is the BEST and that my hubby and I feel RREEAALLYY comfortable with.
Do you mind messaging me with the docs info? THIS is exactly what I am looking for and hope to find someone here (maybe a little bit closer) that your doc KNOWS and recommends…or if my insurance cooperates, maybe travel that far… Praying for guidance to get out of this pain - been really bad for the last few months… Thank you!!
I know you've had several replies but wanted to add my comments and experience. I was going to the sweetest, kindest neurologist and she always hugged me and was so compassionate, BUT she wanted me to go down a path I don't want to go down. I'm a woman with young children. I have to function all day. She was increasing my meds to find a balance between not being knocked out and getting my pain to a manageable level. This is not living. It's my life she and I were talking about, not HERS. When I looked at this objectively, I called and did the intake questionnaires for a surgeon that specializes in TN in a nearby state and am traveling there next week. Look at your relationship with your Dr like ANY other relationship. If I was dating a guy that really loved me but wasn't meeting my needs, I'd have to end it. Find somebody else.
I am at the point I am gonna have to do it...he is the head of neurology at St Thomas Hospital in Nashville...I am hoping that he will not take it out on me that I want to move; but it is something I am gonna have ot do...I don' t trust him at all - at first, he reassured me and my hubby that 'you will not hurt; I will make sure of it!' - well...his idea of 'not hurting' is simply drug me up and then give me the look like I am totally stupid when I mention anything about my own treatment! I appreciate y'all and your support; as it is hard to change docs...but harder to keep a bad one! ;)
tippy said:
I know you've had several replies but wanted to add my comments and experience. I was going to the sweetest, kindest neurologist and she always hugged me and was so compassionate, BUT she wanted me to go down a path I don't want to go down. I'm a woman with young children. I have to function all day. She was increasing my meds to find a balance between not being knocked out and getting my pain to a manageable level. This is not living. It's my life she and I were talking about, not HERS. When I looked at this objectively, I called and did the intake questionnaires for a surgeon that specializes in TN in a nearby state and am traveling there next week. Look at your relationship with your Dr like ANY other relationship. If I was dating a guy that really loved me but wasn't meeting my needs, I'd have to end it. Find somebody else.
You must be your own advocate. I found my surgeon through hours of my own research and corresponding with others on this and other TN support forums. My neurologist wanted to keep upping/changing meds that were not working anyway and thought any surgical options were a last resort. I have children at home and have to be able to function! I had surgery done by Dr. Fukashima at Duke 6 months ago and have not had electric shock pain since. My surgeon was also not in favor of Gamma Knife. Do not give up on finding a physician who understands this disease and is willing to find a cause, not just drug you into oblivion to mask symptoms.
I understand your frustration totally. I was diagnosed with TN last November 2011, after having pain in neck, jaw & gums on and off for 10 years. I even had surgery on 2 prolapsed discs in my neck in 2005 which proved to be a misdiagnosis in the end. Prolapsed discs were definite but not the cause of my symptoms. Last November, I had very severe attacks of TN following my scalp becoming numb. My GP finally diagnosed TN whilst I was having a severe attack in the consulting room and I was prescribed Tegretol and then increasing doses of Lyrica.
I am an experienced nurse but at that time not much knowledge of TN, I started doing research on TN. Whilst the meds helped reduce severity of attacks they did not get rid of it. I told my GP in March 2012, I wanted to be referred back to the neurosurgeon who had done the op on my prolapsed discs in 2005. I had a special MRI scan that concentrates on the base of the skull just behind the ear, which is known as the root entry zone. Scan showed Trigeminal nerve being compressed. I had MVD following month in May 2012. Best decision I have ever made. Whilst the TN has not totally gone & I still have tingling around my eye I have not had a single severe attack since the MVD. My advice is to inform your knowledge as much as you can about treatment options & discuss with your Doc. I guess its easier for me being a trained nurse to have taken the bull by the horns so to speak, but my advice is that you need health professionals that include GP, Neurologist & Neurosurgeon with expertise & experience of TN treating you. This condition is rare but there are probably lots of people suffering from it who are not correctly diagnosed until the condition progressess in severity. All the research advises that TN is a progressive disease.
I have much sympathy and empathy with all sufferers of TN having got the disease myself. Its a terrible condition that wears you down physically and mentally and can be life limiting. Only sufferers can truly understand what its like. Good wishes to you all and a Happy New Year.
Bless your heart! I am glad to hear you have doc's that are familiar and experienced with TN...I have a neuro that 'says' he knows about it; but I think his expertise extends to meds only! His idea of a 'fix' is to GIVE MORE MEDS first, then do the gamma knife and will not listen to anything else I say; he even looks at me like I am an idiot when I say "TN" or 'MVD"!! He refuses to diagnosis me with type I or II; he actually sits with his back to me most of the time typing on the computer instead of looking at me...I know - FIRE HIM! Believe you me, I am looking on my own for a neurosurgeon to help with this and will be going to my GP (who has known me forever) to refer me. I appreciate all of the success stories and look forward to being able to say my own; as this TN is taking a HUGE toll on my quality of life; just like it did all of you guys... Thanks so much for taking the time to tell me your story!
Cris
OH Nurse said:
I understand your frustration totally. I was diagnosed with TN last November 2011, after having pain in neck, jaw & gums on and off for 10 years. I even had surgery on 2 prolapsed discs in my neck in 2005 which proved to be a misdiagnosis in the end. Prolapsed discs were definite but not the cause of my symptoms. Last November, I had very severe attacks of TN following my scalp becoming numb. My GP finally diagnosed TN whilst I was having a severe attack in the consulting room and I was prescribed Tegretol and then increasing doses of Lyrica.
I am an experienced nurse but at that time not much knowledge of TN, I started doing research on TN. Whilst the meds helped reduce severity of attacks they did not get rid of it. I told my GP in March 2012, I wanted to be referred back to the neurosurgeon who had done the op on my prolapsed discs in 2005. I had a special MRI scan that concentrates on the base of the skull just behind the ear, which is known as the root entry zone. Scan showed Trigeminal nerve being compressed. I had MVD following month in May 2012. Best decision I have ever made. Whilst the TN has not totally gone & I still have tingling around my eye I have not had a single severe attack since the MVD. My advice is to inform your knowledge as much as you can about treatment options & discuss with your Doc. I guess its easier for me being a trained nurse to have taken the bull by the horns so to speak, but my advice is that you need health professionals that include GP, Neurologist & Neurosurgeon with expertise & experience of TN treating you. This condition is rare but there are probably lots of people suffering from it who are not correctly diagnosed until the condition progressess in severity. All the research advises that TN is a progressive disease.
I have much sympathy and empathy with all sufferers of TN having got the disease myself. Its a terrible condition that wears you down physically and mentally and can be life limiting. Only sufferers can truly understand what its like. Good wishes to you all and a Happy New Year.
