Friday I went to see a new neurologist who specializes is treatment of both TN and Chiari Malformations (I have both). He was very kind and thorough, the appointment lasted almost 2 hours. I have been trying not to get my hopes up but of course I was expecting the "here's how I can fix this" moment. His diagnosis was chronic migraines (caused by the Chiari) along with other neurological issues caused by the CM and TN type 1 and 2. For the last year I have lived every day with horrible headaches (to the point I can't touch the base of my head on the right side), muscle spasms in my neck, shoulder, chest (right side) and constant searing pain in the right side of my face along with the bolts of lightning that can strike at any time.
I was told that no TN surgery will help because it is caused by the Chiari, even if I tried surgery, because of the TN type 2 and the Chiari I could still be faced with the constant searing pain. The CM is "only" causing mild to moderate symptoms and therefore he would not recommend going to a neurosurgeon to correct because the surgery is so invasive - there's no guarantee that if the CM was corrected that the TN would stop. I was given a new prescription for Gabapentin (on top of the Tegretol and others) and was told to get something to help with depression.
He then told me there was no sense in coming back because due to the nature of the issues there was nothing more he could do to help, that this is extremely difficult to treat and "you are going to have to learn to live with this". My 37th birthday is at the end of the month, I can't imagine how I can live with this my whole life, nor do I want to. I'm so discouraged right now. I don't want to live a life full of drugs and pain. I've already done PT and acupuncture, go to a chiropractor on a regular basis, nerve blocks, etc. I don't know where to go from here - any suggestions?
I feel your pain I just went through the worst nuero appt today im 30 my bday is next month and not looking forward to it or anything really . so miserable and feel like im so depressed and disappointed I dont have much advice but I can sympathize have u had a detailed MRI?
Its time to get to another neurologist or a pain management specialist. I don't want to be on a bunch of drugs either but its better than being in pain. Keep looking for a good neurologist till you find the right fit. When he told you there is no sense coming back......It kind of sound doctor talk for "I don't know!" Find someone that knows.
I've had so many MRI's over the years I'm surprised I'm not glowing! There are no compressions shown on the MRI's, I brought the films which he did look at before the appt. I think it's just scary to think about feeling like this for a long period of time. I've tried to keep a good outlook but recently I just can't seem to do it anymore. Hope you have a better day
My advice to anyone who has a doctor or neurologist say," no need to come back" OR " there’s nothing I can do for you" is this>>>>>>>>>
Find a NEW doctor!
I know it’s hard, I know it’s stressful, having to keep trying to find a doctor/neurologist, BUT it’s worth it! There are doctors who care, who will be honest and say, I’m not sure what to do but let’s try this or that, or maybe I can refer you to my colleague etc etc…it is THEIR responsibility to care for you, or at least monitor you, rx meds, etc.
Ten years ago I was being investigated for MS, as I had many neurological symptoms that were unexplained…I saw many neuros, rheumatologists, internal medicine docs etc…by the time the 5 th one said " I don’t know, I can’t help you, take antidepressants, ( I was not depressed) implying it was in my head.
I found my voice, I replied something along the lines of this>> " if I was your mother, sister, daughter ? What would you say? Would you send them on their way? Antidepressants? Despite my being evaluated by a professional psychiatrist who said I am NOT depressed?"
I left with my head held high. I would not want to be under the care of a doctor who behaved like that.
My tests were all negative for MS, Thank goodness. I stuck with my GP who treated me with meds for my various symptoms, diagnosed the TN eventually, and I saw him every 3 months…
He really cared, and did all that he could to try and find answers. We still don’t know why I experienced all that I did.
Please never listen to anyone who says there is nothing more they can do. There is always something…we must advocate for ourselves and research as much as we can so that we can make informed decisions regarding our well being.
Sometimes it’s a wait and see approach, as long as you are being treated, so that you are not suffering more than you should be.
Having a doctor/ specialist in your corner when you are dealing with disease or disorders is imperative!
Don’t let this recent visit discourage you. HOPE and persevere , ((( hugs ))) Mimi
I agree with Mimi! Keep trying. Do your research on these docs and go to as many as you need to until you get ANSWERS and a PLAN for all of this. ((((((((((BIG HUGS)))))))))))))
Oh sweetie,
I’m so sorry. I know this type of news can be crushing to hear and go through. Although not the exact same way, I’ve had that type of info given to me. You can do a couple of things. Depending on how many you have seeOne is look for another expert with your conditions and see what they say. I will warn if given the same info as the last one, the news can be just as hard if not more hard to deal with. This is not to say you shouldn’t or that you will be given the same answer. I just don’t want to give false hope. But this doctor should follow and keeping checking up on you. even if nothing can be done. The reason why Im saying depending on how many youve seen, is if this your first dont all hope is not lost, on the hand if this a long line of doctors who are VERY knowledgeble with your conditions then you may need to think hard if this the conclusion they will come to each time, KWIM? The other is to find a very good pain managment doctor, and build a good relationship with. They will not be able to find that magical take all for you, but help you get to being functional again. It might take a bit to get there. But you may want to think on this.
Hugs to you and I’m sorry you’re having to go through this. It may be rough but try to find the positive if you can. Such as at lest you did not go through surgery only to have more damage done. This might be hard I know.
There are remissions, I would think, and a positive attitude never hurts, towards getting a remission??? There is always a possibility for a new drug or drugs too. Don't listen to him!!! Bah humbug he's just a scrooge!!!! Have a better day hon.. Just take it one day at a time. :)
I’m sorry that you have had such bad news, Stephtotoffey, but even though this guy might have reached the limit of his knowledge, there are MANY other practioniers out there who have NOT reached the limits of their expertise-- or are willing to research or try other treatments. This is his issue, not yours. We are so hopeful, and often so vulnerable and yes even beaten down from living with this horrendous condition that sometimes one more piece of bad news feels like the final blow. Don’t let this guys limitation be your own. OK, I’m climbing off my soapbox. Hang in there, don’t give up.
I love the support you all give one another. I don't yet have a formal diagnosis myself - hoping that's coming soon - but, I really needed to read these responses myself. Encouraging reminders to press on. Thank you.
For what it is worth, I do want to share my experience with you, as I also have a Chiari Malformation and TN. My TN Is bilateral atypical .( I have both the constant burning and boring pain, along with the intermittent flashes of pain on both the right and left sides) my story is long but I will try to make it as brief as possible
In the fall of 2002 I started to experience a number of unusual neurological symptoms that despite visits to several NEUROLOGISTS, and many different tests for MS, Lupus, Lyme disease went undiagnosed. It was not until a family friend offer to read my MRI films that I was diagnosed with a Chiari Malformation and advised to see a NEUROSURGEON. I saw a doctor who confirmed the Chiari, and within three weeks underwent decompression surgery, which was largely successful. ( my biggest problems prior to surgery were extreme numbness and tingling on my right side, balance problems, and some hearing and vision issues)
Fast forward to 2011. Although I have had periodic episodes of burning in my scalp, and a feeling a pressure in my upper teeth, which I had always attributed to the Chiari,those feelings became so severe in December of 2011, I went back to see the doctor who had done my Chiari surgery to be sure it was not a surgical problem. He could not find a reason for my problem and referred me to a neurologist ( who I could not get an appointment with until April) While I waited the three months to see that doctor, i began to experience the classic “shocks” of pain that are TN.That Dr. Thought all my pain was related to the Chiari, despite my telling him that i was pretty sure i had TN, and put me on Topomax. The Topomax did nothing but make me dopey, and help,me lose weight! after a few months of that, I found a different neurologist who finally diagnosed me with TN, and prescribes the appropriate meds.
Unfortunately, I am not having much luck managing the pain from TN with meds, and sought the opinion of an extremely knowledgable neurosurgeon. I saw Dr. Jeffrey Brown in NY in November, and I will be having MVD on Friday of this week. Dr. Brown does think there is a relationship between Chiari and TN, but does not think there will be any issues with the success of my procedure because I have both disorders.
I understand your frustration and am sure you are sick of going to doctors, but I do think if it is at all possible , that you see a neurosurgeon who is well versed inTN. In my experience, neurologists are not all that keen on surgical procedures. Having Chiari and TN is unusual, but I would like to think that that does not mean there is no help out there for you.
I wish you all the best, and please feel free to contact me if I can answer any questions you might have.
Best regards,
Christine
Thank you to everyone for the words of encouragment. I don't post alot but am on here almost everyday. I think I've just "hit the wall" as far as doctors and meds and so on. This month is a year with this pain every day so I guess I'm just feeling bad for myself for awhile!
I do have a good pain management doctor who is willing to try almost anything, it's just such an awful feeling to hear a doctor who is supposed to specialize in both of these disorders say sorry I can't help you. I guess it's back to the drawing board. Sometimes this awful thing makes me feel so alone
Thanks for the reply and for sharing your story with me. I did see a neurosurgeon years ago when the Chiari was discovered but was told because there was no blockage of CFS and due to the size he wouldn't do anything. At the time I wasn't experiencing all these symptoms either, just severe headaches. I think I've had it my head since then that it couldn't be a big enough deal for a surgeon to address so why bother!
Christine said:
For what it is worth, I do want to share my experience with you, as I also have a Chiari Malformation and TN. My TN Is bilateral atypical .( I have both the constant burning and boring pain, along with the intermittent flashes of pain on both the right and left sides) my story is long but I will try to make it as brief as possible :) In the fall of 2002 I started to experience a number of unusual neurological symptoms that despite visits to several NEUROLOGISTS, and many different tests for MS, Lupus, Lyme disease went undiagnosed. It was not until a family friend offer to read my MRI films that I was diagnosed with a Chiari Malformation and advised to see a NEUROSURGEON. I saw a doctor who confirmed the Chiari, and within three weeks underwent decompression surgery, which was largely successful. ( my biggest problems prior to surgery were extreme numbness and tingling on my right side, balance problems, and some hearing and vision issues) Fast forward to 2011. Although I have had periodic episodes of burning in my scalp, and a feeling a pressure in my upper teeth, which I had always attributed to the Chiari,those feelings became so severe in December of 2011, I went back to see the doctor who had done my Chiari surgery to be sure it was not a surgical problem. He could not find a reason for my problem and referred me to a neurologist ( who I could not get an appointment with until April) While I waited the three months to see that doctor, i began to experience the classic "shocks" of pain that are TN.That Dr. Thought all my pain was related to the Chiari, despite my telling him that i was pretty sure i had TN, and put me on Topomax. The Topomax did nothing but make me dopey, and help,me lose weight! after a few months of that, I found a different neurologist who finally diagnosed me with TN, and prescribes the appropriate meds. Unfortunately, I am not having much luck managing the pain from TN with meds, and sought the opinion of an extremely knowledgable neurosurgeon. I saw Dr. Jeffrey Brown in NY in November, and I will be having MVD on Friday of this week. Dr. Brown does think there is a relationship between Chiari and TN, but does not think there will be any issues with the success of my procedure because I have both disorders. I understand your frustration and am sure you are sick of going to doctors, but I do think if it is at all possible , that you see a neurosurgeon who is well versed inTN. In my experience, neurologists are not all that keen on surgical procedures. Having Chiari and TN is unusual, but I would like to think that that does not mean there is no help out there for you. I wish you all the best, and please feel free to contact me if I can answer any questions you might have. Best regards, Christine
There are some surgeons that don't treat Chiari due to,the size, but then again there are those who go by symptoms, not size of herniation, to determine whether or not surgery is indicated. My herniation was 10mm, and I was never even tested for CSF flow. I had decompression surgery by a doctor well versed in Chiari, and will have MVD by a surgeon who is an expert in TN. I do hope you can find a good doctor, but I also hope you consider seeing a neurosurgeon.
Best of luck to you!
Thanks for the reply and for sharing your story with me. I did see a neurosurgeon years ago when the Chiari was discovered but was told because there was no blockage of CFS and due to the size he wouldn't do anything. At the time I wasn't experiencing all these symptoms either, just severe headaches. I think I've had it my head since then that it couldn't be a big enough deal for a surgeon to address so why bother!
Christine said:
For what it is worth, I do want to share my experience with you, as I also have a Chiari Malformation and TN. My TN Is bilateral atypical .( I have both the constant burning and boring pain, along with the intermittent flashes of pain on both the right and left sides) my story is long but I will try to make it as brief as possible :) In the fall of 2002 I started to experience a number of unusual neurological symptoms that despite visits to several NEUROLOGISTS, and many different tests for MS, Lupus, Lyme disease went undiagnosed. It was not until a family friend offer to read my MRI films that I was diagnosed with a Chiari Malformation and advised to see a NEUROSURGEON. I saw a doctor who confirmed the Chiari, and within three weeks underwent decompression surgery, which was largely successful. ( my biggest problems prior to surgery were extreme numbness and tingling on my right side, balance problems, and some hearing and vision issues) Fast forward to 2011. Although I have had periodic episodes of burning in my scalp, and a feeling a pressure in my upper teeth, which I had always attributed to the Chiari,those feelings became so severe in December of 2011, I went back to see the doctor who had done my Chiari surgery to be sure it was not a surgical problem. He could not find a reason for my problem and referred me to a neurologist ( who I could not get an appointment with until April) While I waited the three months to see that doctor, i began to experience the classic "shocks" of pain that are TN.That Dr. Thought all my pain was related to the Chiari, despite my telling him that i was pretty sure i had TN, and put me on Topomax. The Topomax did nothing but make me dopey, and help,me lose weight! after a few months of that, I found a different neurologist who finally diagnosed me with TN, and prescribes the appropriate meds. Unfortunately, I am not having much luck managing the pain from TN with meds, and sought the opinion of an extremely knowledgable neurosurgeon. I saw Dr. Jeffrey Brown in NY in November, and I will be having MVD on Friday of this week. Dr. Brown does think there is a relationship between Chiari and TN, but does not think there will be any issues with the success of my procedure because I have both disorders. I understand your frustration and am sure you are sick of going to doctors, but I do think if it is at all possible , that you see a neurosurgeon who is well versed inTN. In my experience, neurologists are not all that keen on surgical procedures. Having Chiari and TN is unusual, but I would like to think that that does not mean there is no help out there for you. I wish you all the best, and please feel free to contact me if I can answer any questions you might have. Best regards, Christine
