I am feeling so helpless. My primary doctor is fantastic. Yet the neurologist was frustrating. She didn't seem to have a clue on how to handle treatments. I began getting handed off to other doctors and I am feeling pushed around and a hastle to these doctors! I was finally sent to a pain clinic. The tegretol is still not working well, and i am taking 4 oxys a day. The pain is a constant 7/8, yet with the oxy my pain dropsto a gentle stabbing at a 3/4....grrrrrr! So i got to the pain clinic and they arranged an appointment with a dentist. At first I tried to be open minded about this, until he wanted to begin from stratch with me. This includes all the xrays & tests i have already done! What do you think ... Should I start over for a 4th time with a different doctor? How many times should i go through this?! As if TN isn't stressful enough!
Thanks for hearing me rant and vent <3
Knottytree
That's ridiculous...Easy for them to say, NOT easy for us to do!!
It is not a rant or vent, seems a valid statement to me. Could it be because of the charges involved that all the tests are being re-arranged.................?
@Min C: so true!
@Jackie: I am definately not an expert when it comes to the cost & ins. However, my husband and I have decided to gather copies of all medical and dental records for the past 4 years. This way we can have everything on hand and whichever doctor I am handed off to next will not to repeat tests…hopefully. I know that this stress definately adds to the pain attacks…good side to this: I have discovered just how much of a trigger stress is!
Thank you for the comments,
Hugs
I have trouble with doctors too. I had a neurologist who listed TN as a specialty, when I got an MRI he said that analyzing it was not within his specialty, he only prescribes drugs for TN. He also only referred me to doctors at his medical center. Another issue I had was when I went to a surgeon at a NY hospital who had relatively little experience with TN because he only does about 12 MVD operations a year on the Trigeminal nerve. He could have told me that another surgeon he knew in the hospital deals with TN and especially Atypical TN on a daily basis and does over 100 MVDs a year. It took me 4 months to find the more experienced doctor. I saw many doctors before getting an MVD, and I wish I had seen more and asked more questions. A problem I find is surgeons rush you through appointments and are not forthcoming with information unless you ask a series of very well thought out questiions. Please, if you have insurance that pays for the appointments, do not feel bad about seeing as many doctors you can until you are comfortable having surgery. There are doctors who actually concentrate a majority of there practice to TN, but they are hard to find sometiimes.
Boy, Have I ever gone thru exactly the same thing! Because I did not want anything invasive - yet - I was handed off so many times, I lost count. Even the neurologists handed me off to someone else or gave me the wrong meds for ATN. One neuro refused to accept the diagnosis of ATN - that a neurosurgeion had already done. It is extremely frustrating. The only doctor that has been empathetic, listens carefully, taken notes during the visit and deals with the emotional as well as physical side of this has been a "former" DENTIST. This doc specializes in facial pain now and he is great. When I have told the other neurologists and neurosurgeons that this DDS has prescribed this or that, they look at me like I must be crazy to consider this guy as a "doctor". Well, I am thru with all the neurosugeons and neurologists now. No more for me. I am staying with the facial pain specialist and on my next appointment, I plan to tell him that he can never retire as I will be his patient for the rest of my life.
D; I believe there are many on here that would like to be treated responsibly as you are now with this former dentist. If you don't mind, consider giving this doctor a thumbs up on this forum. He/she could have more work than they can handle ;)
Goodness, Dale, I feel bad that you were not directed to the doc with the expertise in the first place! I flew across the US to Maryland to see Dr.Carson. He is a pediatric neurosurgeon who makes exceptions for adults with TN. He was amazing. His PA, Carol James was equally thorough, professional and caring. I had called the TNA site for doctor suggestions for MVD and he was one on the list.
Don said:
I have trouble with doctors too. I had a neurologist who listed TN as a specialty, when I got an MRI he said that analyzing it was not within his specialty, he only prescribes drugs for TN. He also only referred me to doctors at his medical center. Another issue I had was when I went to a surgeon at a NY hospital who had relatively little experience with TN because he only does about 12 MVD operations a year on the Trigeminal nerve. He could have told me that another surgeon he knew in the hospital deals with TN and especially Atypical TN on a daily basis and does over 100 MVDs a year. It took me 4 months to find the more experienced doctor. I saw many doctors before getting an MVD, and I wish I had seen more and asked more questions. A problem I find is surgeons rush you through appointments and are not forthcoming with information unless you ask a series of very well thought out questiions. Please, if you have insurance that pays for the appointments, do not feel bad about seeing as many doctors you can until you are comfortable having surgery. There are doctors who actually concentrate a majority of there practice to TN, but they are hard to find sometiimes.
I'm sorry this has become frustrating. If our country had a management person who had an expertise in TN as well other, long term conditions, we, as patients would benefit AND doctors would benefit as well.
If I were you, I'd gather my records and put them in order of services, like: Medications; Treatments; Doctors; etc. Then w/in the services, place things in chronological order. This is what I did when I had to fight the insurance for payment for the botox treatments I paid for out of pocket prior to the FDA approving the med for Migraine. I also had a brief, one page overview of the history of this disease from when it began to date. Also, I put the outcome of the meds/treatments on this first page. It was really hard to gather and order the info, read through it and write a letter stating the history of this problem in my life. I was so down that it took a while to do the task. I think if my hubby was helping, he could have been more objective for me or joking with me to bring me through it.
Lastly, my dentist knows more about the head, neck and mouth than any other medical professional I see. If you gather the info for the new dentist and have a one page "treatment/outcome" page showing the test results, etc. perhaps it would make it easy for the dentist and new test may not be in order. If your pain is changing though, I could see why a new MRI or X-rays might help.
Take good care, Knottytree (I like your name :-).
It seems as though we are all having difficulties with the medical industry! The Neurologist I saw 2 weeks ago made a jump from “if the tegretol doesn’t work, we may need to talk about the gamma knife.”. Those are her words…seems kinda fishy. As soon as she said that I was sure that this was not the doctor for me. Are there any suggestions as to how to find a quality doctor? Is a dentist the way to go? Stay with a Neurologist? Or a face pain specialist? I love advice…
Hugs,
Knottytree
LyndaS said:
I'm sorry this has become frustrating. If our country had a management person who had an expertise in TN as well other, long term conditions, we, as patients would benefit AND doctors would benefit as well.
If I were you, I'd gather my records and put them in order of services, like: Medications; Treatments; Doctors; etc. Then w/in the services, place things in chronological order. This is what I did when I had to fight the insurance for payment for the botox treatments I paid for out of pocket prior to the FDA approving the med for Migraine. I also had a brief, one page overview of the history of this disease from when it began to date. Also, I put the outcome of the meds/treatments on this first page. It was really hard to gather and order the info, read through it and write a letter stating the history of this problem in my life. I was so down that it took a while to do the task. I think if my hubby was helping, he could have been more objective for me or joking with me to bring me through it.
Lastly, my dentist knows more about the head, neck and mouth than any other medical professional I see. If you gather the info for the new dentist and have a one page "treatment/outcome" page showing the test results, etc. perhaps it would make it easy for the dentist and new test may not be in order. If your pain is changing though, I could see why a new MRI or X-rays might help.
Take good care, Knottytree (I like your name :-).
That is great advice! I am actually excited to see all my medical records. I do see what u’re saying about retesting due to possible pain changes. It was just difficult to see the positive in going from a Neurologist performing MRI’s and MRA’s to a dentist who wants to take xrays…
However it seems as though many of you have had luck with a DDS.
Knottytree
(thanks for the name complement :))
Knottytree,
I'd call the TNA about a list of docs, use the doc list here and think about calling Carol James at Johns Hopkins. Having too many docs involved caused me to go into a drug interaction due to the added melathion injections the homeopathic doc thought would help the insane pain coming from the Gamma Knife #2. The melathion made seritonin in my gut, shot it up to the brain and this is where paxil kept the seritonin. I had a seritonin overload. So, be cautious, and think through your steps w/ docs carefully…please :-)
Blessings to you, my Friend!
Knottytree said:
LyndaS said:I'm sorry this has become frustrating. If our country had a management person who had an expertise in TN as well other, long term conditions, we, as patients would benefit AND doctors would benefit as well.
If I were you, I'd gather my records and put them in order of services, like: Medications; Treatments; Doctors; etc. Then w/in the services, place things in chronological order. This is what I did when I had to fight the insurance for payment for the botox treatments I paid for out of pocket prior to the FDA approving the med for Migraine. I also had a brief, one page overview of the history of this disease from when it began to date. Also, I put the outcome of the meds/treatments on this first page. It was really hard to gather and order the info, read through it and write a letter stating the history of this problem in my life. I was so down that it took a while to do the task. I think if my hubby was helping, he could have been more objective for me or joking with me to bring me through it.
Lastly, my dentist knows more about the head, neck and mouth than any other medical professional I see. If you gather the info for the new dentist and have a one page "treatment/outcome" page showing the test results, etc. perhaps it would make it easy for the dentist and new test may not be in order. If your pain is changing though, I could see why a new MRI or X-rays might help.
Take good care, Knottytree (I like your name :-).
That is great advice! I am actually excited to see all my medical records. I do see what u're saying about retesting due to possible pain changes. It was just difficult to see the positive in going from a Neurologist performing MRI's and MRA's to a dentist who wants to take xrays....
However it seems as though many of you have had luck with a DDS.
Knottytree
(thanks for the name complement :))
I understand everyone’s frustration. My pain management doctor claimed he knew all about TN because his mother has it. Turned out she has Type I and he didn’t know ANYTHING about Type II and even believed that Type II doesn’t exist. He’s been such a source of frustration and unfortunately I’m stuck with him because of the way my medical group is set up.
It got so out of hand that I paid one of my attorney friends, who specializes in medical law, to come with me. The PM doctor recognized him from a medical hearing, and was on his best behavior. As soon as my friend wasn’t with me, he was back at it.
This condition is difficult enough without throwing uninformed, uncompassionate doctors into the mix.
Good instincts, Knottytree.
Any doctor who would jump from Tegretol to Gamma Knife, without adjusting the dose or trying other meds, is grossly uninformed about TN…and I would encourage you to RUN, not walk, to the nearest exit!!!
It’s very unfortunate how some doctors are too quick on the trigger without taking all factors into consideration.
Knottytree said:
It seems as though we are all having difficulties with the medical industry! The Neurologist I saw 2 weeks ago made a jump from “if the tegretol doesn’t work, we may need to talk about the gamma knife.”. Those are her words…seems kinda fishy. As soon as she said that I was sure that this was not the doctor for me. Are there any suggestions as to how to find a quality doctor? Is a dentist the way to go? Stay with a Neurologist? Or a face pain specialist? I love advice…
Hugs,
Knottytree