i think i am confused. what exactly is the neck problem. it sounds like your problem is spinal. mine is not. the scar tissue is on neck muscle and that prevents movement and causes cervical and spine issues. did you see anyone in new york. that surgery does sound risky. can i obtain your book. weather really effects me. the pressure increases upon the muscle and nerves when its humid and tighten when its dry. can any friends help. i am discussing pain options. miamis plastic surgery called for an appointment. i also have a skull base surgeon appointment coming up. i have letters going out all over ny to the best surgeons. what exactly are you using for pain. yes carol, it is difficult! you are quite a trooper.
i will be starting massage therapy and i do meditate. the problem is that it is effecting circulation, causes muscle fatigue, and i am wiped out. i do try to bounce back. i have just recieved these callbacks so it is a start. be well.
Hi Elaine48
I f you are sitting on a cushion while meditating and having pain,, you might try sitting on a chair. I had a knee problem and couldn't sit on a cushion so I sat on a chair and it worked ok for me.
Yikes. That is incredible. For the pain, you have a brain implant, is that correct? Does scare me a bit. My spine is OK its the tissue loss and muscle loss. I know who Brisman is, since I am a New Yorker born and bred, but he works on classic TN, I believe.
You must know some of the famous Plastic Surgeons, Dan Kaker, Aston, etc. I need a good one to adjust the midface jaw, ear, nape. How did you do so much research and I thought I was good. You have me beat. The tissue loss is making the spine uneven and irritated nerve roots are doing a number on the cervical region. You have been through hell and back. I shrink and expand as the weather changes. Just releasing the compression would make a big difference.
Wasnt there anyone at Columbia or Cornell who could have helped. I thought I traveled. The surgeons are nervous about making the areas worse. It is even illogical for a facelift to be so close to the vagus nerve. Glosso is a definate. Pinched nerves too. Plastic surgeons do not enjoy doing grafts on their patients. bad publicity.
I am in tears in the morning. I wait until the edema lessens before I can get out of bed. My walk is uneven and then as the fluid lessens, I look and feel better.I actually look normal and most people dont know. Im not advertising this. It is causing PAD because of all of the edema. I didnt need whole body neuropathy. Baker will call back when he decides where to send me. Thats. if Im lucky.
Its ironic. I was cute and I just wanted to look youthful without any drama. I got drama!
Three top fifth avenue surgeons had the same p lan for the revision. I never thought it could be such a mess.
How did you go about doing your research. I am not as skilled as you at this. Why Jefferson.
Still confused about the brain surgery unless it was for the face pain. Its not very comforting that the neck went as a result.
Who said doctors cant kill the patient??/
This is not very supportive for my marriage. Definately buying the book. are you in New York now?
This is exhausting emotionally and physically.
Your situation is mindboggling, but as long as it helped. Thank God. You have given me some hope. Thanks.
I saw a decebt neurosurgeon today. He feels that the scar tissue on the right side of the ear is definately causing the cranial nerve involvement and there is Tn involvement. Yet the test was negative. The issue that the scar tissue is on muscle and causing painfully tight muscles must be dealt with. Back to a plastic surgeon if I find one. I have a lot of pain on the right cheek and right ear as well as neck muscle. Do you think there is someone of value to see at Jefferson. I have never heard of a brain implant. I definately have TMD not TMJ. The surgeon wants my MRI . He no longer does skull base surgery. I still need reconstructive plastics and better pain control. I also went back on neurontin and it seems to be helping. I just hope I dont gain weight. I am interested in sending my records and pics to someone I can trust. I dont trust many surgeons anymore. I would like to call Jefferson and any referrals would be great. Pain Dr. appt friday. They are specialized but i have a feeling its not facial. This surgeon was more helpful than anyone else ive seen. Its also effecting the ears. Thank you for your help; Many hugs back. You are right, people assume you look normal so nothing is wrong. Its maddening. There must be some procedure for the pain.
Do you get out. I have been out more this week. so strange. i actually cooked and did ebay. very odd!
Who does reconstructive work in Philadelphia?
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i cant get over what you have been through. You wont find many top plastic surgeons in Florida. especially reconstructive. They are very nervous about operating near the cranial nerves. Im at Miamis plastic surgery on Monday. Im resting friday. Im wiped out. The result of the MVD caused the reason for the reconstructive work, I assume. Your story belongs on TV as well as many others. Ocular is in place and visionis good. Still getting pulled down by malar scar tissue. Shands neuro is aug 3 and reconstructive sept 1. He did not sound extremely elated, which concerns me. He said he does have to meet me. I still have others to call. Hugs! Im wiped out.
Lucy. I can not even pluck my facial hair on my face. When it is windy are cold. My face hurts so bad. I had radio surgery. It does not seem to help. Well do the procedure in a few months again. My teeth hurt all the time. I have to take vicodin for pain. All the meds I took stopped working. I wish you could luck. Just hang in there. Write back to me if you need to talk. Be blessed.
Oh, Catlover! Heat helps me, for some reason. The cold is not nice to my face. Do you find heat helpful? I know this sounds strange, but sometimes, packing my mouth full of warm oatmeal is just the ticket between meds. Not only is it low calorie, it has fiber, which I can use being on the medications I must take to control my pain.
What I wanted to tell you is, though, that it may be beneficial, if you can handle it facially, to pamper yourself with a nice warm wax for facial hair, as I do for my brows. I have very blonde, fine hair, so I must pencil in my brows. I have to maintain an arch to guide the pencil. So, I treat myself to a $10 wax at my local salon. Most people who do hair also do brows, or any other facial hair which needs removing.
Just a quick tip. All facial pain patients may not be able to withstand the little jerk (which is painless for me, because she's just that good at it) at the end whenever the waxed paper is removed to get the unwanted hair up.
Although, it is written in some medical literature that only classic TN sufferers are sensitive to temperature, from what I read sometimes, and from the way my teeth respond to cold, I do not believe that is always altogether true.
I hope this helps.
Best wishes,
Stef
Smaller doses of Amitriptyline are used for neurological pain. I have been on it twice for my TN. I think it is a good medication to start with. The side effects of being really tired and having a dry mouth do get better as you get used to it. Other medications used to treat TN can have some pretty nasty, lasting side effects.
The first time I used it I was on 25mgs. This time I am working my way to 30mgs, I am at 20 mgs and it seems to be helping.
When doing research on the internet about TN I am surprised not to see Amitriptyline listed in the medications used.
Richard A. "Red" Lawhern said:
To answer your questions, Lucy:
(1) The common dose for Amitriptylene is about 75 mg per day in divided doses, at least for the primary condition which it treats which is depression. What surprises me is that this seems to be the first drug he tried. It would be more common to try you on a short course of Tegretol or Trileptal, and add in a tricyclic antidepressant like Amitriptylene only if the primary drugs of choice don't work.
(2) Yes, there is a blood test for active Shingles (Varicella Zoster) virus. In the literature I've read on the subject, there doesn't seem to be a lot of support for the belief that contact with someone who has active Chicken Pox is a frequent initiator of Shingles. I don't think anybody is entirely sure what causes an outbreak. Obviously, if your body system is worn down by fatigue or other factors, you may be more vulnerable to a good many disease processes -- and you can be more sensitive to pain. This is one reason why pain and depression are thought to be "co-morbid" disorders, since they play off each other.
Feel free to come back with other questions. There are many good people here with a wealth of experience to offer.
Go in Peace and Power
Red
My pain is a bad tooth ache in every tooth on my left side. Plus I have a burning diamond of pain at the end of my left chin. I have a "tight" muscle around my left mouth, tingle inside my mouth and left tongue, sensory loss and dry eye from my failed MVD surgery. My pain is about a 2-4 out of ten with meds. It's not stopping me from living a normal life so far.