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feeling helpless after hearing I might have TN

Posted , 11 users are following.

cary14293
cary14293

After I went through an initial visit with my Periodontist and all signs were pointing to TN, she went ahead and performed surgery on me to remove all the extra bone growth underneath my gums. It’s been a month pain is now worse my life has completely changed. Being sent to a Neurologist for what they thought in the first place. The surgery has made the 10,000 times worse. Symptoms have become worse and now just this last week I cannot even go anywhere that has air conditioning, teeth are sensitive, all in right side of face cannot touch my mouth or it feels like someone is stabbing and sharp pains up through my eye and around my ear. I talked to one person who said she should have never done any surgery on me if she even thought I had TN that she should have referred me immediately to a Neurologist 

0 likes, 17 replies

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  • army183
    army183 cary14293

    Posted

    Your friend you spoke to is completely right. You should have been referred to a neurologist in the first place if you had been diagnosed or suspected of having TN. Nevertheless, you’re going to a neurosurgeon now so things should start moving forward properly. When is your neurology consultation? 

    Cheers

    Big D

    • cary14293
      cary14293 army183

      Posted

      Still waiting to hear, had my very last visit with the Periodontist today. Should be next week sometime. Absolutely ticked off with them. $4000 in the whole from them when ultimately i needed it for a Neurologist since I have no insurance except dental and eye. 
  • janna1981
    janna1981 cary14293

    Posted

    I'm so sorry to hear your pain is intensified.....I am terrified of seeing a dentist just in case...the thought of someone near my nerves/face/teeth makes me cringe.

    Have you looked into alternate therapies to try and manage your pain in the meantime? I always feel the most hopeless when in the middle of an attack, but it's important to keep fighting.

    Hopefully you get your appointment with the neurologist quickly, and get a treatment plan on track.

    Hang in there.

    • cary14293
      cary14293 janna1981

      Posted

      No there is no one out there to treat this except a Neurologist who has to diagnose it, then give there recommendations on a treatment plan
  • Nascar1
    Nascar1 cary14293

    Posted

    I smell a lawsuit. Well sorry to hear what you're going through. That sucks! I can tell you magnesium glycinate 400 mg three times a day has helped me a great deal. It's going to be an uphill battle but don't give up. You going to want to throw in the towel but don't quit. I would like to hear what your neurologist have to say. I would be very careful with medication because it's not going to help you a great in the long run. This is coming from someone who has trigeminal neuralgia for over 20 years

    • cary14293
      cary14293 Nascar1

      Posted

      I am talking to a disability attorney, will be finding out one if I qualify and secondly if in fact there was any negligence due to the Periodontist not referring me out right away. The pain is just excruciating. Had to leave the grocery store the other day with my husband. Walked in and the air conditioner hit my face and I was in tears. The whole right side of my face instantly shooting pain, teeth have now become sensitive can’t drink have anything cold to drink or eat. I hardly talk anymore afraid of just the least bit of cold or just the wind hitting my right side sets it off. Before the surgery it was somewhat live able now after what she did just enhanced everything to the utmost extreme 
    • marilyn39866
      marilyn39866 cary14293

      Posted

      Hi Carey

      Sorry to hear about your pain ,my TN has always been sensitive to cold so what I do is I have a warm soft scarf I carry everywhere to cover my left cheek and jaw when i go grocery shopping or restaurants i try to get patio places mostly to eat out. It helps not to trigger the pain i also keep small fit in your hand hot packs for emergency pain flairs they are too hot at first let cool till comfortably warm to your tn spots. I had the mvd it did not work for me but now i just find ways to live with my TN my meds I take keep me pain free all day and they are the last ones I can take so I pray not to get side effects everyday. It's been 2 years so far for me with TN trial and error is how I figure it out. I accept I have to live with this as there is nothing that works permanently so far. Some people get relief for a few years but then it comes back. I won't allow any dentist work as this really makes your pain 3 times worse. I hope I've helped you a bit it's he'll I know but accepting it has made my moral so much better. My employer w/o t let me come back to work unless it can be in the air conditioned office but before surgery I worked from home for a year so I am also getting a disability lawyer to see what I can do.

  • luanne72699
    luanne72699 cary14293

    Posted

    Hi Cary...I too have TN. Yes the pain is just unbearable! But there is light at the end of the tunnel. There are some surgeries that can help and some medications that are very effective. The neurologist will probably try medication first. Feel free to ask me any questions. I have had TN for over 30 yrs and though on disability am managing pretty well on medication. I actually have anesthesia dolorosa. It’s a painful condition that was caused because I had a  MVD (micro vascular decompression) surgery for TN meant to correct the problem. Instead something went wrong and left half my face partially numb and with a new kind of pain. This normally does not happen with that surgery. I’m just one of the unlucky ones. My daughter had TN, had the same surgery, and has been pain free ever since. You can google it to learn about it. Take care and again feel free to ask me any questions.
    • esther48415
      esther48415 luanne72699

      Posted

      Thank you Luanne for being very upfront about how, even though your surgery was less than successful that that is not the usual outcome.  It is really hard for individual to make it clear that, with TN, there are so many factors all outcomes are not the same.  Sorry that you did not have the outcome that your daughter (and mine) did.  I don't know your circumstances but felt like this is a good time to let people know that there is a strong correlation between the frequency a surgeon (and his or her team) do a paticualr type of surgery and the outcome.  This, again espically with TN, is only one of many things that effect outcome (the pattern of symptoms and response results of high resolution MRI also have a great deal to do with success rate).  With TN, being fairly rare it is more challenging to find surgeons with a great deal of experience, but it is possible.  My daughter was diagnosed in Wisconsin but we had her come home to Boston for surgical consults.  We found a surgeon who had done about 1,000 MVD, and 1,000 of the gamma knife type of surgeries...  We are privileged to have access and choices in where we go with our insurance.  Individual stories are important but it helps when speaking with a doctor to look at statistical outcomes and feel free to ask about their individual experience!

       

  • sarah66119
    sarah66119 cary14293

    Posted

    I'm sorry hon! That sounds awful! So did your Periodontist tell you she thought you had TN ? Is she the one who referred you to the neurologist? That seems backwards to me.  I have TN too and I literally have to be knocked out for a teeth cleaning....so painful.  Hang in there and keep us posted! 

    • cary14293
      cary14293 sarah66119

      Posted

      Yes when I first saw her she thought by my symptoms it was TN. I never heard of it I didn’t know it was so bad. I also have to be sedated when it comes to anyone touching my gums. She did the surgery on me to see if that would help but only made it 10,000 times worse. Reading so many people’s comments she should have known better and sent me straight to a Neurologist. Angry doesn’t even describe how I feel 
  • saaz79347
    saaz79347 cary14293

    Posted

    Sorry to hear that. A lot of posts I've read have been of people going to get work on guns and teeth when the real diagnosis is TN. I suffered through TN before finally getting MVD surgery. Please click on my user / handle and read my posts to see if anything maybe be useful to you. Feel free to ask anything. I hope you find relief soon.

  • seema_savi08419
    seema_savi08419 cary14293

    Posted

    I feel ur pain. I had MVD surgery 1 year ago and recently found out that it wasnt a total success. I cried in my doctor's office. But now I have learnt to just accept that it is here and find ways to deal with it and cope. I have been doing acupuncture and massage for a month now and I have felt a bit of relief to some extent. I couldnt sleep at night before and now i sleep the whole night. And with pain killers and the therapy it makes it a bit bearable. Some people cannot stand to touch the area but for me massaging the area helps even though it hurts. Just dont lose hope . Try whatever measures that works for u.even heat compress helps at times. Try avoid coffee and sugars. And eat watermelon. It cools the nerve and drink lots of water

  • marilyn39866
    marilyn39866 cary14293

    Posted

    I'm so sorry to hear your in so much pain.

    I agree your pediodontist should of let you go to a neurologist before doing the surgery. Anything done to your teeth greatly affects the TN. I had the MVD surgery and it did not relieve my pain either and I have a great deal of sensitivity to cold as well so far no meds have stop that sensitivity but I have learnt how to live with it by keeping myself indoors at home in a temp control enviorment makes a difference using a scarf i hold against my TN side of my face to go outdoors when its cool or going grocery shopping short list in and out as soon as I can helps. The fact that the who,e side of your face hurts means all 3 branches of the TN nerve are being affected. The MVD surgery may possibly help you everyone is different but the statistics of success in any of the procedures is low and

    Very disappointing. Some people it just goes away but then it returns so far none of the procedures are a cure.

    Please see a neurologist asap they have medications that can help I have been through 3 types of meds they keep my pain away except if I get cool breezes or air conditioning.

    • cary14293
      cary14293 marilyn39866

      Posted

      Thank you Marilynn. Went and saw the Neurologist it was confirmed I have TN so the pharmacy has begun, in absolute brain fog with the meds. Sadly I knew more the the doctor did I asked him if I had TN1 and TN2 he wasn’t aware of it. Wish I had my “ Striking Back “ book or I would have thrown it at him. Since I live in NC I will be going to the the top specialist at Duke. The electric shocks are gone although whole side of my face still throbs all the time and feels like someone is is sticking a knife in my ear and eye and have migraines. After I get used to this crappy medicine I was referred to a highly recommended malpractice attorney. Seeing as the Periodontist knew from the beginning I was showing signs of TN but never sent me to a Neurologist right away instead did surgery on me sending me into full blown TN. It’s my fight to sue her for negligence and to be able to get in front of the AMA or Congress that each dentist and Periodontist should be held accountable if they even suspect a patient showing signs of TN to not even touch them without sending them to a Neurologist. Because this disease is rare I am now wanting to shed light so no one has to go through the agony we suffer on a daily basis.. sorry if this was long 
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