Sunct-wrong diagnosis?

General General TN & GPN (Old Site)
1

Hi everyone,

I joined this group to try and help to find possible answers, knowledge and support on behalf of my sister. Here is her story, I would love some input to see what others think of her situation.

In October 2011, she had sinus surgery for severe sinusitis on the left side of her face and they also took a polyp from the right side and corrected a deviated septum. After the surgery she was having trouble with headaches and a little bit of facial pain. Her ENT told her that this was normal and that they would go away. By December 2011, she was having more pain and she saw her ENT and he scoped her and told her everything looked fine and there was nothing wrong. The pain kept getting worse and by the summer of 2011 her husband took her to the University of Pennsylvania Hospital and she was admitted through the emergency room. They gave her some pain medication which helped her a little and gave her a follow up appointment with the neurologist. She was first diagnosed with TN and was unresponsive to medications. she was then diagnosed with Hermicrania Continua and once again she did not respond to the medications. They kept mixing up her meds and she was on so many that I can’t remember them all. She had put in a request to be seen by a well-known headache Center. They diagnosed her with SUNCT In February 2012. Again more medications and lidocaine treatment to which she was nonresponsive. They also send her to see an ENT in their associate hospital and they told her that she had scar tissue from the sinus surgery but there was no way that the surgery had caused the pain she was in. Her current neurologist has all but given up on her and they told her there’s nothing more they can do. They have now referred her to her primary M.D. for shirt short-term pain medication and also to a pain center.

I have always felt that the surgery had something to do with her problems but no one will take responsibility for that or even look into the possibility that it could’ve occurred. She cannot look at a computer, read a book, talk on the phone, bend over, she doesn’t sleep because she is woken up from pain, she has a difficult time eating and has an average of 75 to 90 episodes a day with 2 to 3 of those episodes lasting 20 to 30 minutes of excruciating pain. It is so difficult to sit there and watch her suffer without being able to help her. I have a hard time excepting the diagnosis of SUNCT because her condition has continuously gotten worse over the past three years and her episodes are not short. They have gotten worse and intensity and length of time and she is in pain 24/7 with no breaks. The only thing that seems to help her a little is Tylenol and she’s currently taking 3000 mg a day. She also recently had an occipital nerve block that did not help.

Is there anyone who has had sinus surgery and suffered with facial and head pain afterwards? I am at a loss of what to do and my heart is broken. She has two children that are young and need their mother. She has not been able to work in over 1 1/2 years, her husband has an autoimmune disorder that has left him unable to work, and she has no quality-of-life. I have encouraged her to seek another opinion with someone who is willing to think out-of-the-box. She has a hard time with this because traveling is extremely difficult for her- even a half hour car ride is crippling. She has begun praying for the pain the end and this scares me so much. She’s my best friend and can’t imagine life without her.

Any input is appreciated.

Praying everyone is having a pain free day.

Blessings

2

I don't have any advice but I just wanted to say that I am sorry your sister is going through this. It sounds horrific. I looked up SUNCT and it sounds similar to TN pain. I have TN pain around my left eye and it sounds like what I go through sometimes. The article I read says it can be related to TN.

It sounds plausible to me that whatever happened with her surgery could cause this. Nerve injury happens with dental work that causes lasting and some permanent damage to the trigeminal nerve causing TN or ATN like pain. The difference is only in the cause of the pain and the types of treatments that can bring relief.

Many of us struggle with finding proper medical care, treatment and diagnosis. It took me a year and a half to find a helpful neurologist. So NO never ever give up. Read, learn and ask questions. And keep on going until you get some answers. NO ONE should have to live with that kind of pain. Keep looking for specialists. At the top of the page click the tab that says Face Pain Info. There is a list of DRs in there that have been recommended for TN. Maybe you can find someone close to you.

I am 38 and have a young daughter so my heart goes out to her and her family. It is heartbreaking. She is lucky to have a sister that cares and is stepping up for her.

Hopefully other members will chime in with some experience and advice.

Jane

3

Thank you Jane. I have been researching like crazy. Including reading the stories in this group for different meds/treatments. She has another appointment tomorrow and I found a few new meds that she hasn’t been on yet. Hopefully they will give something a try.

I am so sorry that you suffer from TN and am hopeful that you also have support from family because I know at times it’s the only thing that keeps her going. I pray every day for everyone affected by any facial pain disorders.

Lori

4

Hi Helping Sister,

I am a frequent visitor to the site, but rarely post. I do, however, have some info related to your query about your sister's condition, that you both may find helpful.

I suffered for several years with chronic, severe sinusitis, in conjunction with extensive areas of nasal polyps, resulting in major bacterial infections often necessitating weeks and weeks of daily IV antibiotic treatments. Over the course of 1 1/2 years to "fix" these problems, I underwent four FESS (functional endoscopic sinus surgery), with the final surgery being performed by an out of state ENT. It was very invasive, but I was desperate. That last surgery was in June of 2011.

In August, I began experiencing what I thought were more sinus infections. My nose, forehead, eyes, upper teeth, cheeks alternated between being jolted, shocked, or poked with what felt like an ice pick that had been placed in a blazing furnace. Like your sister, I returned both to my local ENT and to the out of state ENT, and both times scoping showed no signs of any infection. I now believe the out of state ENT suspected what the problem was as we were concluding the visit, he asked me if I was sleeping alright. I said that despite the pain, I was sleeping OK...He wrote a prescription for Amitriptyline to take at bedtime and sent me packing. I did not take the medication as a quick review online suggested the medication was for depression...and I thought..."What the heck? I am not depressed." and so, did not take the medicine. I now know differently about the role of Amitriptyline in TN, of course, which leads me to believe he knew very well what I had, but perhaps out of fear for what I might do, did not raise the possibility of TN.

By November, I was beside myself with constant pain and the horrific jolts most of us suffer with. I finally went to see my GP, who suggested the pain description sounded neuralogic in nature and tried several medications, one of which was Lyrica. By December, I investigated medical pictures of the nerve system in the skull and brought them to him, explaining the V1 and V2 nerves of the 5th cranial nerve led across and to the exact areas of my pain; to his credit, he listened to me and agreed this might well be the problem. He explained the condition is very rare, but oddly enough he has another patient who has had TN for 15 years (who is now using a Butrans patch, he explained) With his referral, by January I saw a neurologist who took me through all the start up "tests" on my face for feeling, cold, movement, etc. After about an hour, he officially diagnosed me with bilateral, atypical TN. It was his opinion that in fact, the TN condition was a direct result of the sinus surgeries.

My TN has shifted somewhat in the way it affects me, but essentially, I am in pain all the time...it is a burning, aching pain, with the worst of it in my eyes. I still have daily bouts of the lightning pain in various places on my face, but they aren't quite as frequent as when this started. I am so tired of dealing with this, and I remain on the hunt for a better way to control the pain. I believe the Gabapentin and Amitriptyline have ceased their efficacy to help reduce the symptoms; so, I rely primarily on pain medications. The Butrans patch worked wonderfully for a short while, until I developed a significant allergic reaction.

As with your sister, I have had this condition, a direct result of my sinus surgeries, for over 3 years now and have been through a variety of medicines and treatments, including 6 weeks of acupuncture (which did not work). In January, I am on my way to Shands, via my neurologist's referral, at the University of Florida to see a neurologist who specializes in TN.

Like Lori and Jane, I urge you to encourage your sister to never stand still in her quest for help. It can be a rocky road, as we all know, but the key is to help her keep rays of hope alive and to know she has your support. Seeking out good sources of information (such a journal articles from medical sources), support groups like this one, and staying on a quest to find doctors who are knowledgeable, helpful and most of all, supportive, are all key to staying sane, in my humble opinion.

Perhaps my story will give your sister some relief in knowing her belief in the surgery as the TN culprit is valid and will give her some impetus to continue to seek out people and treatments that can help her emotionally and physically.

Warmest Regards to You Both, Melanie

5

I have bilateral ATN as a result of a previous brain surgery. I was diagnosed by, Dr. Jeffrey Brown in NY. Dr. Brown performed all four of of my surgeries in 2013. I am now pain and med free. Dr. Brown is a neurosurgeon who is an expert in TN in all its forms, and is dedicated to relieving his patients pain. I highly recommend your sister consider consulting with him. I traveled from Georgia to see him, and would not go to anyone else!
Best of luck to you!
Christine

6

Thank you Christine. That gives me hope of a permanent solution. May I ask which hospital Dr Brown is from? I would really like for my sister to have another opinion. Truly appreciate your reply.

7

Dr. Brown is affiliated with Winthrop University Hospital in Great Neck, N.Y.
I am happy to answer any questions you or you sister may have.

8

Hi helping sister, it’s so good to see a carer come on the site, that’s unusual? I can’t help much either, as I don’t know much about SUNCT, but I’ve learned over the years that once nerves are disturbed they never seem to be the same, I think you’ll find most of us on the site had tooth extractions or similar and then our TN started.

My advice would be to see a Neurosurgeon, he will have an MRI done, and things will go from there.

It does sound like TN my only thought is, that TN does not wake you up (as far as my knowledge goes) as most would say that only when they are sleeping does the pain go away… People might challenge that?

Good luck with your search, love and hug your sister close, having someone understand is worth the world.

Love to you both x