Portrait of an Invisible Illness

08/01/2023

Hey guys, please read this in its entirety (even though it is a book 😂). I have decided to listen to the advice of others and go ahead and open myself up to accept donations for my brain surgery on September 26th. These donations will solely go towards expenses associated with the 3+ weeks of treatment. This will include: travel to Los Angeles, hotel stay, food, and any unexpected surprises that could come our way. We don't expect anything to happen, you just never know if insurance will refuse to cover a med or I will need medical equipment insurance won't pay for fully, stuff like that. An example is, during the first surgery, Eric ended up admitted as well. I couldn't drive after my dischqrge so needed Ubers which was an unexpected added expense.

If for some reason all of the money is not used for this trip, it will go directly towards my 3 month post-op visit back down to LA to see the surgeon for testing and such(which is a required visit). I will also be having to see a jaw specialist in Portland (years overdue) at some point next year, so the money could go towards that as well.

At any rate, the expected cost of this trip for my (hopefully) last brain surgery for many, many years is around $3,500. This estimate is based off of the previous two brain surgeries. Any and all help is, as always, more appreciated than you will ever know. I hate that I am even posting this, I do NOT like to ask for help and there are so many people who literally begged me to do this. I feel there are so many more people out there far more deserving of help, especially after all the help you have given in the past.

The only reason I agreed is because I am desperate for remission. The disease of Trigeminal Neuralgia is horrific, aggressive, and degenerative. The longer I go without this surgery the worse it will get and the smaller the chance that I will attain remission status. At this point my doctor is extremely hopeful and confident I will attain full remission and have a decent chance of spending 10+ years symptom-free. If/when I do relapse, I will sadly have to do this all over again but all of us are hoping I could be one of the lucky ones who makes it to 20yrs.

No, this will not cure my Complex Regional Pain Syndrome that resides in my face. Unfortunately, there is no cure for it but there are non-invasive treatments that can help with symptoms and for some put them in remission. The sad reality is, according to all of my doctors, I will always have some level of facial pain. Between both of these diseases as well as the serious trauma to my jaw, intercranial hypertension, and serious structural issues with my neck, it is just the way it is.

Even with all my problems though, this last brain surgery should be the catalyst for getting me back to work, back to real living. I will still have several more steps to get my pain tolerable, but all of us (myself, Eric, and the docs) fully believe within the next 3-5 years I could be back to serving in the pulpit or as a chaplain at least part-time. To have hope in a future like that is a drastic turn from where I was a couple years ago. Before meeting Dr. Linskey in California, I really didn't believe I could have a life worth living again. My surgery in December proved anything is possible, I cannot wait to have trigeminal neuralgia in the rear view mirror for a while (a helluva long while).

I am not using gofundme this time just because of the amount of money they take from the donations. However, if this is the way you do prefer to help, please let me know and I will open one. For now, I can provide you my vemno and PayPal (or address if you prefer to mail cash or check). We are also very open to gift cards if you prefer to help that way. The visa ones are the best as we can use them at any gas station or grocery store. The only downfall is hotels sadly will not accept them.

If you are able, please, please share this post on your page. Like I have said, any and all help means the world. I love each and every one of you. Your support means everything to us, whether it is financial, spiritual, emotional... all we really care about is having you in our corner. To say we are both a nervous wreck about doing this again is an understatement. This will be my 5th surgery (3rd brain surgery) in just over 14 months. I am really emotionally struggling with doing it again. Medical care is becoming more traumatic for me every. single. time. Surgery in particular tends to send me into panic attacks now. The last brain surgery was really delayed and I was practically begging them to give me the versed (they give it to you as you are being wheeled in to calm the patient down). I needed it much sooner than normal. Surgery number 29 will hopefully not be as intense for me!

Vemno: -Lynn
Paypal:

05/07/2023

I honestly feel selfish for this post but I just need your love and prayers today. It has been one of my worst pain days in a very long time. This past week has been one of my busiest and honestly I felt the best I have in a really, really long time. I have been making a lot of goals for myself to help overcome some heavy depression and anxiety I have been experiencing. It comes with the territory that when you have chronic pain and illness you will have mental health difficulties (how could you not really).

I have been making a point of trying to grow in self love and care, part of this is simply focusing on what I eat, I would say exercise but that is tough when you can't bear weight on your foot, dressing nicer (aka don't be such a slob), and even wearing a little make-up each day. I use to do this more and miss the way it makes me feel. I am also working on not missing doctor appointments (I have been bad about that lately) or any appointments for that matter. I have been so overwhelmed the last couple years with all the surgeries and procedures that I just mentally couldn't handle it anymore. I know some will understand what I am talking about with this. I am also prioritizing getting out of the house for stuff that isn't medically related but rather nurturing my relationships and interests. I cannot wait until I can walk again and will be able to add mental health walks and taking the pups to the park.

This week I reached every single goal. This included a lot of appointments, my usual procedure, going out to eat with my sis Katie McClellan Parks , and picking Kylee up from school for a little Auntie/Uncle/Kylee time. Usually I would say it was simply an auntie/niece dates but Kylee LOVES Eric so he is always a part of a date when we come to the house as she insists on being wrapped up like a burrito and such. She hates when he wears out as that kid has the energy of 20 grown men lol.

Anyway, I woke up early this morning just paying for everything I accomplished this week. I think I slightly over-exerted myself which is sad to say. Most people wouldn't bat an eye at my schedule, they would look at it as a vacation 😂. With all my problems though, I just cannot do it. Every single condition I have is flaring like hell. My face is fire hot from the CRPS, my intercranial hypertension is causing an insanely strong migraine which is accented by my neck being so tight, my jaw will barely budge due to the dysfunction iand arthritis in the joints and my trigeminal neuralgia is of course flaring. And shoot, that is just the head.

I genuinely feel like a whiney brat for talking about all this, I just feel so alone all the time. I have people in my life who genuinely are present for me, especially Eric and Katie, but that doesn't take away from the feeling. No one lives in another's body so with anything no one will ever truly know another's joy nor their suffering. Anyway, please pray this gets better soon. I don't know how much longer I can take it.

06/16/2022

Okay, I really, really hate posting this. Due to some unforeseen issues, I need some help raising money to pay for my surgeries. I honestly estimated the expense to be much lower than it will be. With gas prices, hotels for up to a month, dog sitter, food, and so many other things I really need help. BTW it looks like we will be doing the stimulator removal and the brain surgery close enough together that it just makes sense to do them in the same trip and save both energy and money by doing so. Anyway, I wrote a lot more about everything on the gofundme page. Please, if you can donate it will be appreciated but more than anything please be praying. July is going to be very tough on my body and Eric always goes above and beyond for me, almost to a fault where I wonder if he is practicing self-care. He especially shows his love when I have surgeries, doing all the driving, holding my hand when I get anxious before surgery, is the best advocator for me, and he does this all without complaint. I hope soon our health balances out so we can start focusing more on our life together and preventative medicine instead of crisis medicine.

Anyway, I apologize immensely for doing this again. If it wasn't absolutely necessary I swear I would not do this groveling for help. I miss being the one who offers help and not always the one who takes it. These 3 surgeries (stimulator removal and two brain surgeries) have got to work, I am aiming for a much better 2023.

Btw, I did make this post public with the hopes some of you might share it. Love you all, thank you for being an incredible support system!

Hi everyone, I feel ashamed to come on here and ask you for help but honestly, I need it. F… Laura Lynn needs your support for Laura Needs Brain Surgery

06/14/2022

Here is part of an update I gave to my support group and figured instead of having to write everything over I would just do some cppy/paste action. 😃 Today went well, I could not be happier or love the new neurosurgeon, Dr. Paff, more. I am so grateful she is willing to remove the stimulators.

So yup, I am definitely having her do the surgery, I just don't feel good about going back to Dr. Baralot (the surgeon who placed the stimulators). I cannot move past the fact he basically stalled everything for the 2.5 months, leading to my not being able to do the MVD on the 23rd like was planned. Even if he believes he was doing it for my benefit, 1) he never called to talk to me and hear my reasoning for not using the stimulators regularly (made pain worse except the first few months with the 1st one) and 2)it does not sit well with me he suddenly is willing to do the surgery the second he hears I am having someone else do it.

It irritates me as I did do a telehealth with his PA right after my appointment with Dr. Linskey in March. I talked to the PA twice about removing them which he seemed cool with outside of the fact he believed the MVD's would fail due to my having TN for 12 years. After that the PA left me a message when I called back later that day with a question. The voicemail said that they would not take the stimulators out without my pain doctors go ahead (which he gave, he just wanted me to keep trying new settings on the stimulators while I waited). The physicians assistant also said even if they did remove them it would be after the scheduled MVD date. That is when my pain doc jumped in and talked to Baralot and they decided I should keep trying the stimulators for a while as it might drop my pain a little (the lowest I ever got was right after the 1st surgery in 2020 and that was only a 7/10). A 7/10 still sucks and again, the last time I was that low on the crappy pain scale was I think January of 2021.

So, Dr. Baralot just kept solely communicating with my pain doc instead of me. My pain dude has actually apologized and owned up to his part like a grown up. I know my pain doctor was well intentioned, he just didn't think and thought he was being helpful without realizing he had become the go-between. He fully supports getting the stimulators out and moving forward with the 2 MVD's.

Anyway, Dr Paff, the neurosurgeon Dr. Linskey recommended, was amazing today. She places facial stimulators herself but recognizes they are usually only successful about 30% of the time at offering long-term relief or any relief at all. For me I think due to the fact I have bilateral TN, severely damaged TMJ's, plus bilateral CRPS...I was kinda doomed to start. Putting those stimulators in I think really irritated a very broken face (gorgeous, but broken 😆) and my face just can't handle foreign bodies well. I sadly do not feel comfortable going back to the original surgeon and think Dr. Paff will do a great job. She is personable, honest (even sharing her limitations), and has confidence she can get these suckers out.

I am supposed to hear from her scheduler tomorrow or Wednesday. I will be flying tomorrow so may miss the opportunity to talk to her, the sucky part too is Wednesday I have one of my two weekly stellate ganglion blocks I have been doing since 2013. I really hope the MVD's work and I can finally stop having sedation twice a week. These have been my saving grace though and I am grateful for the option of doing them. They lower the number of attacks I get and lower the severity for a few days each week.

So, another great experience thus far at UCI Medical Center. Oh, I also had xrays done to map my stimulators better than my old ones. My old ones also showed what used to be mild degenerative disc disease is now severe in my L5-S1. Yay, I am so happy to have more problems lo. I have noticed for a while my back has been worse but I just figured it was the way I slept, poor posture, and my gardening. I know those exacerbates it but it is good to know it isn't just me being a big baby. It hasn't been a real concern as I have so many bigger problems. Does anybody else have to basically ignore other health issues as your face takes up all the attention?

Thank you all for caring so much. I am constantly touched by your comments of support and helping me decide what to do with my stimulator issues. I love that several of you have messaged me to check in and make sure I am okay. Things are moving again which gives me the much needed hope that relief may hopefully be in sight, even if it doesn't take all of the TN pain away I will gladly take some improvement, any at all really. I am tired of being bedridden, (or couch ridden on decent days) the majority of the time. The quality of life 80% of the time is abysmal, I need the help that looks to potentially be on the way. Hallelujah

Oh! I actually took a picture of myself as, even though it feels like daggers, I put a little makeup on to try and feel good about myself and not look like I feel; anyone else been feeling like death? It is 2am and I have had maybe 3 hours of sleep since leaving Idaho on early Sunday morning. I have to leave for the airport at 8:40am so am wondering if I should give up trying 😴 💤 🛏

06/12/2022

Hey guys,

I am getting ready to hop the shuttle to the airport in Salt Lake in the morning. I am doing a very short, arrive around 6pm Sunday and leave Tuesday morning type of trip to Los Angeles. My goal is to do the trip as inexpensively as possible. My ride from LAX to the hotel unfortunately didn't work out (for a very legit reason) but it was so understandable; he is a fellow pastor who was so gracious as to offer to help a total stranger. So, adding a car rental added to the expenses but I must say, having a car will definitely help.

This trip is to meet with a different neurosurgeon who is open to taking the stimulator out. It of course will depend on how the appointment goes. Once she gets a chance to really look at my x-rays and hear more she will be able to decide if this is a surgery she can comfortably perform. I am unbelievably grateful to Dr. Linskey who called in a favor to not only get me in with her but also to do so this quickly. I literally only emailed him to ask for help about 2 weeks ago.

The crazy, almost frustrating part of this is I met with Dr. Poulter (my incredible pain doc) on Thursday and he dealt a bombshell. Dr Poulter called Dr. Baralot, the doc who put in the stimulators and has been refusing to take them out, to tell him I found a surgeon and am moving forward with the removal. After filling Baralot in on this as well as more detail as to why I need them out and how they don't help (actually cause more pain just by being in).

Apparently, Dr. Baralot is now saying he will take them out, how he knows where all the anchors for the wires are and such, making him the best person to remove them (which is true). I truly don't know what to think or say about this; to be frank I am a bit pi**ed. He has stalled my brain. Surgeries for months by refusing to take them out and he waits till I am a couple days away from leaving to meet the other surgeon?! I mean come on! Eric and I decided we will talk with both doctors, weigh the pros and cons, and see who could get me in the quickest.

My big fear right now in all honesty is the cost of all of this. I have some money saved up but with gas prices, 2 weeks out of state for one surgery than 3 weeks for the next two (both in expensive parts of the country), I am literally feeling sick about everything. I do want to have to beg for donations on gofundme if I don't have to, I just don't have any good ideas. I am too sick to bake dog cookies right now or do work of any kind. I feel so helpless.

If any of you have good ideas I would love to hear them. Ultimately I know I may end of begging again which is so humiliating but every day it becomes more challenging just to survive the day. We are at a point we must find something that lowers my pain levels. I know that sounds super dramatic but I cannot explain well enough what it feels like to live in this severely broken body. I understand why it is called the su***de disease.

Trigeminal Neuralgia is called that because it has the highest rate of su***de of any other chronic pain diseases. Before anyone worries, I am not suicidal right now but I do have suicidal ideation sometimes when the pain is too much. Thankfully I have a great support system which includes not only loved ones but my doctors and therapist as well. I am open about it, never hide my feelings, and when I feel like I need help I ask for it. This is why the surgeries have to happen soon, I can't handle this level of pain for another year.

Alright, enough of that. I love you guys and thank you for being an incredible support system. Wish me luck on this trip! I made Eric stay home for financial reasons plus, it is simply a consult. He really wants to go but it is ridiculously expensive. Yay for the high gas

06/01/2022

I noticed some people were interested in hearing an update from me. Thank you for caring guys, it means a lot! I am still having some swelling and additional pain from my stimulator, the surgeon who put it in (out of state, I am in Idaho, he is in Denver) doesn't seem concerned even with my pain doc sending him pictures and video of the swelling around the wires (my one eye even almost completely swelled shut). Thankfully the swelling is down considerably but the wire is still noticeable to others, including my therapist who asked why it was out of place. Mornings are the worst as my wires tighten so much in my neck it is at times nearly impossible to turn it without stretching exercises, they definitely swell at night.

I wrote Dr. Linskey about the situation, and how I don't believe the Denver stimulator surgeon will ever change his mind. I explained why my surgeon refuses to take it out, that he wants me to keep trying the stimulator. I said the stimulator hurts just being in my face, even without the stim being on. I told him about all the conservative treatments I have tried over the years that have failed. I cannot hang out in this level of pain with the hopes the stim will start to work someday, alleviating maybe 20-30% of my pain,at times, if I am lucky.

I am willing to take the risk of the MVD's not working simply because, if they do, I could potentially attain remission. I would give my wholeself, risk my life, to have the experience of no nerve pain in the face. I have CRPS and a few other chronic pain diseases but to have the big one under control...that is simply life-changing to even consider. I deserve the right to remove the stimulators and give an MVD a go, ya know?

Oh, so I heard back from Dr. Linskey today and he and his staff are going to try and find me a surgeon to take the stimulator out. I am thrilled by that, I hope they find someone for me. I already have to push the MVD back to later summer. I could definitely use some good news, I need the surgeries!

05/14/2022

Well, so the night brought with it more swelling on/in/around the wire. Again, it looks much worse in person. My eye is starting to swell which isn't good and that area of my face is definitely more irritated. If it gets any worse, at all, we are going to head to the ER.
I have been hoping it either goes away or it would be stable enough to wait and talk to my pain doc and the neurosurgeon in Denver on Monday but it isn't likely based on the progression. We are watching it like a hawk. Eric and I are both concerned it could be an infection but at this point I don't have a fever.
The only positive thing about this is maybe it will get the neurosurgeon off his butt and have the stimulators removed.
BTW these pictures are definitely poor quality, you can barely see anything. I think the reason for this is that side of my face has swelled up enough to cover up the swelling of just the stimulator (the way it looked yesterday) if that makes sense. I took these this morning and my eye looks worse. Anyway, all that to say the pictures are really no help in showing what my face looks like lol.

05/14/2022

This is from yesterday:

So you know how the surgeon in Denver is refusing to remove my stimulator? Well now today I have this new swelling of one of the wires in my face. This is completely unique unto itself, never have I seen one of the wires showing up like this so vividly. I am posting some pictures, let me know if you spot it. In person it is very noticeable, Eric was able to see it from across the room, in the pictures not as much.
Yay for having a stimulator that doesn't help but does cause additional pain and heartache. I now know why on my typically lowest pain day (thanks to procedures)my face is angry. Actually, my whole being is angry and so over this nonsense.
BTW we are working on finding a surgeon who has the ability to take the stimulators out. If Dr. Baralot changes his mind and will do it, awesome. If not, we are going to have to start over with a new surgeon which is very challenging to do. Either way surgery is not happening in June nor probably this summer due to this mess. I am trying to not focus on the things beyond my control but this has just reignited everything.

04/19/2022

Came in to get a nerve block for one side of the face and even though it was risky left with two. Normally these paralyze half your diaphragm so you can only do one side. When I woke up I had a major attack on the right side (other side of the nerve block) that was so bad I couldn't break the cycle. I guess it went a couple hours which I didn't realize so Poulter thought it was worth doing the other sides. Being two hours out gave the chance for the left side of the diaphragm to strengthen enough the risk was lower. I told Dr. Poulter they get worse than this which shocked him. It us good in a way this happened as he needed to see just how bad I am right now. Dr Baralot has been trying to convince him we should just keep trying the stimulator and not do the MVD yet (apparently he is also trying to talk my neurosurgeon in LA into not doing the MVD (thankfully doubt it will work). I am a tad angry with Baralot for trying to push his agenda on my other physicians. I know he believes in the stimulators which is great, but it obviously isn't working in my case. They need to come out so we can treat the compressions on my nerve branch while also looking at my jaw to see if it is time to pursue further treatment with it. My life doesn't exist anymore, this is it. Extreme attacks that scare people, including Eric and I. They do not see the half of it. The timing for this flare was great though as Eric and I have a clinic visit with Dr. Poulter tomorrow. We are hoping he can work some magic, get on board with us, and find a local surgeon here or in LA who can take the stimulator out in time for my big craniotomy. Please pray guys, I am scared. Here is how d***y the face looks following two stelllates. It tends to paralyze not just your diaphragm but your face and occasionally down your arm. This is why it is used for people with Trigeminal Neuralgia and Complex Regional Pain Syndrome (if you have it in the face or a specific arm). I am really hoping this enlightens Dr. Poulter that the stimulators need to go so we can pursue the brain surgeries and potential jaw joint replacements. This is a really, really scary time in my life. I am now suffering bad panic attacks which I haven't had since 2008. I am so scared this is what my life will be like forever, or even worse than the pain is now.

04/12/2022

Okay so this is humiliating but people are asking so I am sharing my gofundme again. Any money raised will be put towards the travel, pet sitting, food, etc to have my next 3-4 out of state surgeries. I also have venmo and PayPal if you prefer. Please do not feel obligated. We are anticipating the costs to be over $12,000 dollars which is frightening if I am being honest. The surgeries must happen so we will somehow make it work. Like I mentioned in an earlier post there is a small chance we can stay with Eric's side of the family but we do not anticipate being able to as the doctor wants us within 20min of the hospital versus the hour it takes to get to Manhatten Beach. We also have family now in Denver as Eric's dad now lives in Denver so when we get the stimulators out we can stay with him.

We are hoping after talking with Dr. Baralot (Denver doc who put the stimulators in), Dr. Linskey in California will decide we can keep the stimulators in. The way though Dr. Linskey made it sound during my appointment with him, the chance are slim as they are right where he has to cut and he wants to get a new MRI (my stimulators are not compatible with MRI's).

Anyway, I share all this with you simply to give you the details before I share this again. Please. DO NOT feel like you have to give. I have already done 2 fundraisers for my surgeries and never wanted to ask again. As people have asked, though, I will share it. I have learned the hard way after the last 12 years of significant decline of my health, it is okay to accept help from others. If people really want to help and you are in need, let them. It can make the donors feel good and relieves a heavy burden for the receiver. This is probably the most desperate I have ever felt physically, emotionally, spiritually, and unfortunately financially. I am fine with the normal bills but being disabled, big expenses like this I of course have no additional funding for. I do have one option for funds I know I will have to take out (which is private) but I will just say, the less the better. 😊 So, if you want to help just know it will be incredibly appreciated and 100% will go towards my surgery costs.

Thank you everyone, God bless you and please know how much I love you. Whether you pray, send good vibes, whatever you can give I love you for it.
BTW, for those who may prefer to give via venmo (people have asked) it is: -Lynn (it is an upper case I in front of my name). Again. Please don't feel like you need to, you all have done plenty to support me. If you do though, both Eric and I are beyond grateful. ❤ 💙 💜

https://gofund.me/981dc37f

04/12/2022

Wow. I just had to book hotels for the brain surgery and it cost a little over $4,000. I knew being gone for 25 days was going to cost a lot but damn! The reason we may be staying in a hotel is the doctor wants us within 20min of the hospital just happens to be down the road from Disneyland. Here is to hoping he is willing to consider letting us stay an hour away with family 👪. With Eric's sister-in-law being a doctor we are praying he is willing to consider it, though we doubt it.
With the risk of developing a complication like a subdural hematoma the risk may be too great. We thankfully believe we can cut the hotel stay down a week during the pre-surgical scans, tests, and appointments if family is able to do it (we are waiting to ask till we hear from the surgeon). I am so thankful hotels allow people to book before paying. I needed to go ahead and book now simply because hotels are going fast (yay Disneyland lol). It is scary knowing I am going to also need to cover the costs of surgery in Denver and a second MVD (craniotomy) in LA but we are going to make it happen!
BTW this post isn't for pity or anything, just had to share some of my shock over all of it. I am still trying to wrap my head around the fact I may potentially be having a lot of surgery on this broken body. By the end of this I may be up to 25 surgeries which is a lot to grasp. I am hoping I don't need them all but if it gets me to having a quality of life again so be it. I will not ever use a surgeon again unless they are the best, I don't care what it costs me I have to get back to living again. And who knows, maybe, just maybe I will be able to work some again. This is the first time I have allowed myself to dream about it again. I honestly am always fearful of allowing myself to think that way but like my therapist says, I need hope to make it through all that lies ahead as it will help me heal.

04/02/2022

For those interested, this is about as close to a description of my trigeminal neuralgia as I have heard. Cathryn is a hybrid (mix of type 1 and 2) like myself just she is 1 side of the face, not both. She describes the surgery, microvascular decompression, that I am about to have. I know many others for whom it was a failure which scares me to death. After 12 years of living like this though, it is time. Having days where I wake up at an 8 out of 10 on the pain scale, sometimes 10 which is why I woke up at 3am, I cannot continue without giving it a shot. If for some horrible reason it doesn't work I will do Gamma knife followed by the Glycerol Ryzotomy she discusses. I have saved these 3 options for when I have exhausted other methods which scarily enough is now. Thank you for all the prayers everyone. Your comments and messages have brought me to tears. I genuinely love each and every one of you.

Right now I have a telehealth on Monday with my surgeon in Denver to discuss getting the stimulators out in preparation for the surgery in LA. After that I will call and see if the doctor in LA can submit the paperwork for the MVD (the big surgery) so I can get on the schedule or if I have to wait till the stimulators are truly out. I am praying we can do it now so I don't have to wait months and months on end to get it done. I will update everyone once I know more.

The story of my beautiful sister-in-law Cathryn...Every year, October 7th is Trigeminal Neuralgia Awareness Day. To support the research given to TN, and how...