It has now almost been 2 months post Gamma Knife for Abbie and she continues to suffer from her Bi-lateral trigeminal pain on a daily bases. She continues to attempt school every day and most of the time she makes the whole day, but there are times of flare ups the school nurse has to call for me to pick her up because the pain shows on her face. There have been times I have had to take her home kicking and screaming with Abbie telling me I've been dealing with this for almost 4 years now. It's not far and I can handle this, while in tears from her pain..
Abigail was talking to a new TN friend the other day, my son came out and said Abbie was crying. So of course as any mom would do. I go and and see what's going on?
I thought Abbie's in pain right?
No ... she is texting with her new TN friend who is also suffering from this monster and will be having her first MVD surgery on June 30th with the amazing surgeon in California. I ask her if she is in pain? No. I ask her if something is wrong? And she just burst out crying even harder, looking at me. "Mom, this isn't fair, I want to be normal teenager, I want all this to just go away, like a bad dream"
Many many children with this condition have had great success with MVD surgery. Unfortunately my Abbie hasn't responded to that surgery and we still must fight to find what is going to work for her. Still requiring us to fly her to California every 3 months to see a specialist and surgeons that soecialize in her condition.
I have continued to search near and far to find alternative treatment. Such as acupuncture, homeatherapy. But none close to me wants to treat a child under the age of 18 years old. (I thing I'm living in the wrong state)...ugh.
New pain management doctors and new pedi neurologist just tell me every time "your daughter doesn't have TN" she has PTSD or oh, it's a tooth. Take her back to the dentist.
We return to California at the end of June. 3 months post op visit.
I pray everyday to take my daughters pain away.
Last night I asked abigail to sit down and put down questions she wanted to ask Dr. Linskey at her appointment this morning with him. I am so proud of my daughter, she came up with her own questions and was able to ask him, Why she continues to be in pain? Why has surgery worked for others and not for her? What else he can do to help her? What procedures would he consider next? One proud TN mama here.
So let me tell you how her visit went, Dr. Linskey as usual is amazing he does all the talking to her, explaining to her everything that is going on. Dr. Linskey stated that Abbie is in the 1/3 of the people that her redo MVD on the right side didn't work and in the 20th percent of those the surgery didn't work on the left side. The way to understand this in Abbie is. 1 out of 3 people will not respond to a re-do MVD surgery that Abbie had on the right side and 20 out of 100 people won't respond to a first time MVD. Dr. Linskey is still hopeful that the left side could still possibly work seeing she is still within the healing time for that side and that her pain is not as bad as it was before going into her MVD surgeries. Abigail pain is about 20-30% better on the right side and about 30-40% better on the left side prior to surgery.
So this is what will happen now. We will be extending our stay here in California due to Abigail will be having a new MRI done sometime this week to make sure everything is still good and to make sure nothing crucial shows or was missed. Abigail will also have an LP or what you may know of as a Spinal Tap on Monday to rule out another demyelinating condition such as MS multiple sclerosis and Then on March 25th Abbie will undergo a Gamma knife procedure. This procedure is palliative and has the least destructive damage on the nerve. Unless something shows on the MRI which would warrant going back in for another MVD. Those answers won't come until we get the results of the MRI.
We will continue to update everyone on Abbies tests and procedures while we are here.
PLEASE, Post Abbies page to all yours and your friends pages. Even if you have church groups that can help Abbie. We can use all your help with raising some more funds to keep us here in California for more treatment.
Ok, So here we go again. We leave for California in just a little under 48 hours, Going back to see the famous Dr. Linskey for Abbie's one year follow up. I wish I could say we are headed there with her Pain Free, but we are not. Abigail as of May 2014 has had 3 MVD surgeries with no success.
Abigail still suffers with TN pain pretty much on a daily bases. Abigail has found several ways of dealing with her pain. She has also learned to keep a journal of her pain and when her journal isn't around she has started to log it in her smart phone until she can get home from school and log it into her log.
Abigail has seemed to develop a new pain in the back of her head, it started out just on the left side but now has moved to the right side also. Abbie also wakes up most mornings with a sever headache. Since October we have seen several doctors her in our area with no luck of any new good information, but many suggestions.
We seen her Neurologist 2 months ago, I was told by him, "it's like you want your daughter to be in pain".... I could not believe what I was hearing, and My poor Abbie was just devastated, to know he doesn't believe her that she is in pain. Never a less she and I both walked out of his office in tears. Then we see the pain management doctor the Neurologist referred us to see. I'm going to follow his lead and see where it takes us, Very nice many as everybody has been. But wants Abbie to see a psychologist, So they can help Abbie understand her pain ... ???? and thinks Abigail is suffering from PTSD...??? .... I still don't understand. I went to school and asked her teachers, nurse and guidance if they seen any signs of Abbie having PTSD. They all thought I was joking.
What am I hoping to get out of this visit... Some answers to why Abbie hasn't responded to the decompression of both the left and right trigeminal nerve.? What else could be causing her to get worse, than getting better..? And what tests can be done while we are there, even if it requires us to stay out there for a longer period of time.... And if there is a collage of his that would see us, and give us some possible answers that we aren't getting here at home.
We will see Dr. Linskey at 9:30am Wednesday March 18th. Wish us luck.
Well it's been 7 months since Abbies last MVD surgery in May on the left side. I was just thinking I should do an update.
Abbie continues to recover, and is pretty much back to a reasonable life style. Abbie continues to be on medication due to Abbie continues to have pain. We have tried lowering her dose, and we have been able to get her down off of 200mg of Tegretol, but struggling to get her any lower without the pain returning. Abigail continues to be on 800mg of Tegretol and 900mg of Neurotin a day.
School; Abigail is a freshman in high school this year. She requires a lot of extra support to keep her on track and work up to par. She loves school and is very excited to gomtomschool now. I worry about her grades, but as long as she is trying her best that's all that counts. I finally have gotten the school to understand her condition. In the first quarter of the year several teacher were failing her. But this TN Mama put them right in there place. She has a current IEP in place and must now follow that, which they were not doing at the beginning of the year.
Home; Abbie still doesn't do much.. She has a few friends that come over every once in awhile, But mainly stays to herself. She loves to video chat with friends from school and play video games. She seems to be happy though. During the school week she goes to school at 6:30am and returns home at 2:40pm. She comes home from school exhausted and ends up sleeping from the time she comes home, sometimes sleeping through dinner until the following morning. On school vacations or holidays. Abbie is a little more active and will stay up as long as she can.
This condition still requires a lot of effort for her to carry on through her day. Abigail is a trooper. To this day she hardly ever complains that she is in pain. tells me mom I have this. Most of the time the only way I know she is hurting is the redness in her face or some swelling. She still has some triggers, like chewing gum ( that's out of the question) we don't even think about buying it anymore, and she pretty much stays clear of it and never asks for it anymore. Cold rainy weather is another trigger and forget about any type of cold or illness. Just a month ago Abbie had a ear infection in which we didn't know. And that set her back and she missed school for a week and a half.
Abbie has developed a few medical issues which is requiring some other doctors visits. She has developed joint swelling and pain. So we will be seeing a rheumatologist to figure things out. And she will also be seeing a endocrinologist for another issue. I don't know if any of these other conditions is effects from the TN or the medications. But Imjust wish my daughter could have a normal teenage life.
We had a follow up visit with the neurosurgeon in October and made out very well. And will have to go back in February for another visit. This will now happen yearly for a long time. I continue to have to pay for Abigail's insurance through the Obama care plan so she can see dotors who know what they are doing and not doctors the state of Connecticut tells me I can take her to. Boy I hope I could claim all these expences on my tax return.
Thank you everyone for your continued support, love and God bless you all.
Well I know I said I would update so here it is, Abigail had her surgery 4 days ago to have the cavities filled and ended up having her 4 wisdom teeth taken out also due to 2 of them were already impacted and they thought this Maybe the Reston for the increase of her TN pain.
Abbie's recovery is going as expected. She is and has been in a TN crisis since the surgery. Her medication has been increased 2 times since. So know she takes 900mg of Tegretol a day and 900mg of Neurotin a day. We are hoping for relief soon as the swelling continues to come down and stops causing pressure on the Trigeminal nerve.
Abbie was suppose to start her freshman year of high school this past Wednesday, but that didn't happen due to her scheduled surgery. And we are hoping to get her pain under control so she maybe able to go to school Tuesday the day after Labor Day. All her friends have been messaging her asking her. Why aren't you in school?
Abbie doesn't answer them anymore. She has become very down and has finally after 31/2 years battling this monster TN, asked me WHY ME.?
My hearts breaks for my child. Every time I watch her in pain, it feels like someone is ripping my heart out of my chest. I'm suppose to help her, support her through this pain. Take it away. Do you know what it like to be a mother and not be able to help your child? Or take that pain away?
Abbie's ,wonderful doctor in California (Dr. Mark Linskey) has been amazing. We travel every 3 months right now from Connecticut to California to see him. Trying to find a neurologist here to treat my daughter is impossible. Pediatric neurologist don't know what they are doing, they have never seen a child with Trigeminal neuralgia never less bi-lateral Trigeminal Neuralgia. And no adult neurologist will see her. They won't see anybody under the rage of 18 years old.
We are flying to see Dr Linskey on September 30th with a post op visit on October 5th. God I hope she is feeling well for that long flight. Wish us luck and I will post an update after we see him.
I know it's been awhile since my last update on Abbie, so here we are. In just 2 weeks we will be at our one year mark from her first surgery that took place in Boston, that doctor messed up. 5 months out since her second surgery redo Dr. Linskey had to go in and fix. And we are right now 10 weeks and 3 days out from the 3rd surgery for the left side. Abbie has been doing really well since coming home from California on Memorial Day. Things of course ended up being crazy and rushing to get back to Connecticut due to my dad, Abbie's grandfather passed away while we were out there. With in a couple weeks home Abbie's was down to a very low dose of her medication and thing were going in the right direction for her. She was back in school for the last couple of weeks of what was left. She wasn't in a zombie like state. And like any other teenager she found her mouth .... Lol, and graduated from 8th grade. She now officially a freshman in high school. I told her how proud of her I was because, NOT MANY KIDS CAN GO THROUGH 3 BRAIN SURGERIES AND MAINTAIN THEIR GRADES AND GRADUATE.....all with in a years time.
Well I guess all good things come to an end, Right?
Of course Abbie had not been to the dentist in 3 years since she was diagnosed. So I thought and Dr. Linskey gave us the clearance to go to the dentist seeing all the compressions were off both Trigeminal nerves. Well that didn't turn out great.because the cleaning set Abbies TN off, and then she ended up with strep throat and an upper respiratory infection in which made it worse. Abbie has so many cavities, she will not be able to go through the multiple office procedures. The dentist will be taking Abbie to the OR and doing it all at one time.
Abbie is now back on the Tegretol dose she was on right before her first surgery, And Dr. Linskey has just started her back on the Gabapentin (Neurontin) to try to settle this flare up down. Abbie is already feeling the effects of the medication. She is very forgetful, and is extremely tired and Abbie starts her freshman year of high school in just 4 1/2 weeks.
We go back to see Dr. Linskey September 17th. I wish it was sooner and I wish we live closer because this mom is in panic mode and I haven't been in this mode for awhile. One day at a time, One step at a time. I keep telling myself.
Update ... Abbie has recovered very well from her second MVD in California. She continues to be on medication to control the pain on the opposite side. Due to she was diagnosed with bi - lateral TN while we in california back in February. Abbie is now requiring a 3rd MVD which unexpectedly is now happening on her follow up visit back to California on May 6th. We can really use some help with funding this trip back to california. We have depleted our current funds on her monthly health insurance and copay for the hospital from the previous surgery and our first 5 weeks we spent in california.
It has been 2 weeks and 3 days post surgery for Abbie, things have been going well so far. Abbie had to go back on one of her meds to control the TN residual pain that has come back. But the doctor is optimistic that it is all from the swelling and irritation from the work he did in there.
We will have to come back in May for her 3 month follow up and in August for her 6 month follow up. We will discuss her MVD on the left side on her 6 month follow up visit seeing continues to have TN pain on the left side. But being on Tegretol is controlling that pain, so we will play it by ear and see what happens.
We are scheduled to fly home monday evening from here and arrive home early Tuesday morning.
We will be following up with the neurologist and her primary doctor when we get back, Abbie will be allowed to return to school 1 week after we get back and has gym restrictions for many months following, but I don't see that to be a problem with her.
Please continue your prayers that this is just from the swelling and that the surgery worked. We can still use everyones support. That we have to travel back and fourth to California for the next year and possibly longer if she requires another surgery for the left side.
love to all for your continued support and prayers.
love Abbie and Dawn (Mom)
Abbie had her surgery one week ago yesterday. She had come off all anti-seizure medication on Sunday. Her pain returned, I spoke with the surgeon last night ams she will need to go back on one of her meds for awhile. Dr. Linskey is hoping the nerve is just very irritated and just needs to settle down.
This was not something I was expecting. My heart is breaking for my Abbie.
Please continue the prayers and support.
We went to see Dr. Linskey today. Went over what to expect in surgery and the risks of everything, Pretty much the normal run of the mill pre-op visit.
Dr. Linskey is shocked how she is so confused and unable to respond to simple requested questions he was asking her. Of course this is the effects of the Tegretal and the Gabapentin.
Then we go on to discussing her MRI results from yesterday.
Abbie has Bi-Lateral Trigeminal Neuralgia!!!!!! The MRI shows a small flow void that was not on her MRI back in October...... :(
Abbie will have surgery on Tuesday. I was hoping to get her off these meds, But now that is out of the question. Dr. Linskey is hoping we will be able to lower her doses, but doesn't feel we will be able to remove them all together, due to the pain she is having on the left side of her face now.
Will she need surgery on the other side? Yes.
She must recover from this surgery for at least 6 months before he will consider doing the other side. Said we need to get through this one first.
Just to let you know, Bi-Lateral TN is very, very Rare. It almost never happens. especially in a child.
My poor daughter has been through so much already. To find out today she will require another surgery down the road.
We arrived safely in California, Doctors appointment today for blood work and hearing tests. Hearing test is so they can monitor her hearing through out the entire surgery, due to the Trigeminal Nerve sits right next to the hearing nerve. There is a chance she can have significant hearing loss in the right ear the side her condition is on. But the risk is low.
Abbie will then have the rest of the week to have fun with her friend Ktrose, Who arrive 4 weeks ago to have the same surgery Abbie will have on the 18th.
We will see the doctor on Friday for her pre-op and go over everything with him and ask many questions.
Abbie continues to have pain on the other side of her face, SO this is one big question that we will be asking, Does she have Bi-lateral Trigeminal Neuralgia? and if we can get an MRI while we are here so he can take a look further into it.
Thank You all for your continued support, I love you all.
Will post again soon.
Well we are scheduled to fly to California on Monday February 10th, And we get a phone call last night Stating, The private insurance (Obama Care) I signed Abbie up for has denied it, due to it is an out of state surgery and they would pay only if it was urgent or an emergency case.
I have been in contact with several news stations this morning and trying to reach government officials but due to our wonderful snow storm I am unable to reach anybody.
I am planning on being on that flight Monday morning, No matter what. They have 1 week to figure things out. They better get moving.
I am NOT denying my daughter the surgery she needs. ....
Abigail's surgery is scheduled for February 18 in California at the UCI medical center. .... yay
The hospital refused to sign the contract with the CT State insurance, So I took it on myself and signed her up with her own Insurance policy through the new Obama care, Abbie has her own private insurance policy through Blue Cross/Blue Shield which is costing me $250.00 a month for her premium. There will be a 3000 Dollar out of pocket deductible also.
Our stay will be 5 weeks in California, while she recovers and the Ronald McDonald house will be letting us stay there for the entire time.
The hospital is 20 minutes by car from the Ronald McDonald house, So this will cause us to have to rent a car for transportation, Due to she will have several doctors appointment for testing prior to her surgery. This causes us to have to be in California 1 week prior to her surgery date.
Please continue to donate, I would love to give Abbie a day in Disney Prior to her surgery.
Well looks like we will be paying for Abbie's surgery ourselves. So I had to increase her goal amount, will know in a few days how much of a down payment will be needed for her surgery. Will post soon.
Thank you to all who have already made a donation, every little bit helps.
Brief update, Abbie had a tentative surgery date for Janurary 21st, 2014 in California,.....which we know will not happen. The hospital in California is refusing to sign the contract with the insurance company and fighting us all the way. My husband has a new insurance policy through his job which will pay a small portion of her surgery, but it is not a major medical plan so we are going to be responsible for most of the surgery unless they work this out.
I have sent an email to the governor of California looking for some help or some direction.
How ????? Can a hospital deny a child the surgery she needs????
But I am her mother and they don't know who they are dealing with!!!!!!!!!!!!!!
I will fight to the bitter end, so I can get my daughter the surgery she needs.
Hoping to have contact with the hospitals social worker tomorrow, fingers crossed we have some answers.
So I suppose her surgery will most likely happen sometime in February now.
Update to come, soon as I hear.
Thank you everyone from the bottom of my heart (Abbie's favorite saying)
Love to all.
Abbie's pain has returned again with sever facial pain. We were given almost 3 good weeks with very little to no pain at all with the increase of both of her medications. But just a few days ago the pain has returned. she is already on 800mg of Tegretol and 800mg of Gabapentin a day and I don't know how much room we have to go up on it again, this is more than most adults take. I just don't know as her mother how she does it, most kids her age probably would not be able to handle this monster and continue her schooling. She is such a trooper.
I finally got a call back from the hospital in California today, Because I wanted to know what was going on with getting Abbies surgery set up and scheduled.
Well I'm told we just filed the prior approval 10 days ago. What the hell are they doing? We were there to see him on October 7th..!!!!
And then I'm told "you know its going to be denied" because its an out of state insurance! WHAT? You told us at that you work with out of state insurance companies prior to us flying across the other side of the country.
And then I'm told "well you can consider paying for her sugery yourself". WHAT?
So I called the insurance company (Abbie's case manager) and she is planning on calling the hospital in california and try to figure out what is going on. .... ugh.
If I have to pay for this surgery myself I will need as much help as I can get. I can't imagine what this surgery would cost. But I will do what I have to do to get her the surgery she needs. I can no longer see my daughter in the pain she is experiencing on a daily bases.
I will update hopefully at the end of the week once I know something and know what this surgery would cost If we have to pay out of pocket.
Abigail is currently 15 years old. At the age of 11 she was diagnosed with Trigeminal Neuralgia (a.k.a. suicide disease). This condition causes severe facial pain to the right side of her head and face on a daily basis. Abigail was very active in the community and played softball, attended school functions, and was an active cheerleader. Abbie can no longer do these activities due to the daily pain from which she suffers. This condition is very rare in children and, according to research, should only affect people over the age of 50 years old. Doctors who know about and treat this condition are very few, and usually not local, which requires travel to see them or to have surgery to try to relieve the symptoms of this condition. After many appointments with neurosurgeons and phone contacts, we found a wonderful doctor in the UCIMedicalCenter in Orange County, CA by the name of Dr. Mark Linskey who agreed to help my daughter. For 9 months we fought our insurance company to approve Abigail's surgery with Dr. Linskey. That attempt failed due to our insurance company and UCIMedicalCenter not coming to an agreement of the cost of the out-of-state surgery. Our insurance company found us a doctor in Boston, and agreed to pay for the surgery to help relieve Abbie's symptoms. On August 1, 2013, Abbie and I traveled 4 hours for MVD (micro vascular decompression) surgery on her brain, leaving our family behind and spending 2 weeks in Boston. Immediately after her surgery I knew something wasn't right! Abigail continued to have the facial pain she had experienced prior to surgery just days after brain surgery to relieve these pains. Many times since the surgery, her neurosurgeon would tell me "She is fine," and that I should give it time. I knew he was wrong and continued to look for answers. Abigail, only days following surgery, developed a CSF lead (Cerebral Spinal Fluid) and I took her to our local emergency room, only to be told again everything was fine and I was overreacting. Then we took Abigail to another new doctor who confirmed the leak. Since speaking with Dr. Linskey after the surgery, he agreed that the surgery Abigail had on August 1st was not successful. He has agreed to see Abigail for a Pre-op/Surgical evaluation to provide a basis for which we can once again fight the insurance company and UCIMedicalCenter. I just want to relieve the horrible pain Abigail is experiencing and get her off the high doses of anti-seizure medication used to "control" this pain. As of today, Abigail's high doses of medication are still not taking her pain away, affecting her school work and her ability to attend school on an everyday basis. Abigails 2nd MVD surgery will now take place in California and will require Abbie and myself to spend a minimum of 5 weeks of recovery time before traveling across country to return home. Funds will be used for meals, medication due to insurance restrictions and transportation.
Abbie's pain tolerance amazes me. To be so young and to be so reticent to complain about the most painful condition known to medicine is absolutely incredible. I hope others will give to the extent that you, Dawn, can meet your goal, and that Abbie will receive the care that she needs. I am heartbroken that you did not meet your prior goal. Please, people, give so this girl may recover. Trigeminal neuralgia is the most painful condition known to medicine. No prescription medications have been developed to target this condition. TN is an orphan disease; the only medications used to treat it are ones accidentally discovered by people with comorbid conditions to help alleviate their TN pain. The surgeries available can leave the patient deaf, with permanent numbness, permanent pain, or even worse, with a stroke. My own daughter died, not from trigeminal neuralgia, but by medications used for its treatment. Emily had not had a chance to take her prescriptions the day she died. In the time between typing a text message and pressing, "Send," Emly died. Please do not let this nonlethal ailment kill another innocent victim. I wish to point out that my daughter was one of the founding members of the Young Patients Panel of the National Facial Pain Association. Emily wished that, if she had to endure so much pain, someone else would benefit from it. Please donate, so that Abbie can benefit from Emily's pain and death.
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