Niyani Swartz’s Story

My story starts on April 25,2013.

We were living in London,UK. at the time. I was at a school board meeting at ASL my daughter’s school. 

I normally had a spot I always sat for the meetings but on this particular morning I went and sat by a friend that I had worked on different projects with. 

The meeting starts we get through a few things and then I get in a little bit of a heated discussion. I few minutes later I don’t feel so well. I felt like one of those cartoons you see with their head on fire. My friend noticed I was acting a bit different she asked if I wanted some water so she got me a glass of water. I few minutes went by she was like let’s go to the nurse’s office. I didn’t even know we had one. My daughter was in high school and I had never heard of her going. So I actually walk down the stairs to the office she gets me in a room and asked me a few questions which I dont remember. After that she’s like let’s call an ambulance to be safe. I’m like sure. The ambulance gets there I actually walked into the ambulance and after a few minutes sitting there while the lady filled out the paperwork I started getting sick. My friend who is British had went and got our belongings and came back. I finally got annoyed and said can we go now thinking that’s not how it works in America.

We get to the hospital I’m sitting out in the waiting room and I start to get sick again. That was thing that made them move and get me to the back. They do a few scans and say you need to go to our Neurological hospital we can’t treat you here. Thank goodness my friend came with me. She called my husband who was two train rides and a walk away. He gets to the hospital she fills him in and so do the doctors. I really don’t remember much. I never lost consciousness. The last thing I remember at the first hospital is ask to go to the bathroom. 

My husband said he had to get angry to get me to the other hospital because they couldn’t move me without an open bed. 

Sometimes I get a bit angry because I’m like how long was my brain bleeding and did that make things worse but my husband is like let’s not focus on things we can’t change. They did an embolization with onyx glue. They were only able to get the one feeder of my AVM. I would have to get through this and we could decide what would be my next step. I would be in the hospital for a month. I was in ICU for 4-5 days before they moved me to the regular ward. I don’t remember any of that. I remember getting a sponge bath before they moved me. 

The ward was one big long room and broken into sections. I was in the section right by the nurses station. Each section had 6 beds on the right side and 6 on the left between each you had a  partition. Definitely not any privacy or quiet. 

There I would start my journey back. It was hard to deal with all the noise because my head hurt. I hate saying headache because it feels so different. I would also need to learn to walk on my own and the physical therapy was a bit different. I remember going to the area where they want to make sure you can make yourself toast and tea. I found it to be odd but I guess it was more about being to see if I could care for myself. They also gave me an aptitude test. It was great they gave me morphine before my test for pain and still sent me down to take the test. Let’s say I didn’t do so well. I’ll be honest and say I stink with any kind of math problems blown up head or not. Reading the evaluation later was hard. Yes a little hit to the ego. I had passed my taking care of basic stuff. They tried to get me to stay longer for more physical therapy but I just couldn’t stand the noise and I was losing weight. I was down to 78 pounds. I was never that big to being with but I was in the best shape of my life. I had run a half marathon in Bratislava almost exactly one month before. They decided I could go home and they would send a physical therapist to work on my motor skills to help me walk alone and also another therapist to work on my language and cognitive skills. I had also had what they call a SCH stroke on my left side. My left arm has issues but I deal with it pretty well my fine motor skills not so good. My left leg does really well. Unless you are someone who deals with physical therapy it would be hard for you to notice.

I get back to our flat and I have two different people come once a week for almost 2 months. I finally get to being able to walk by myself and the other stuff is coming along and really it’s just me needing to keep working on my fine motor and cognitive issues. Plus I think unless you have major issues the NHS will only let you keep getting assistance for so long. 

We met with 3 doctors to go over my options on my AVM.

1. Have surgery and take it out ( we were not crazy about the odds)
2. Gamma Knife surgery ( better odds but longer time to see if it worked. In that time you take a chance of having another bleed because there are too many feeders to fill.
3. Leave it alone and monitor it.Again you take a chance on a bleed.

We choose the Gamma Knife. We felt it was my best option. It would help to get rid of the AVM without opening my head. The only problem was in the UK when you are no longer considered an emergency you go on a waiting list. I was very clear I did not want to be waiting.

The people at the NHS suggested I write to my “Lord” (that’s like a Congress/ Senate person). We did that, waited, and come July we made a decision. My daughter who was going to be a Senior in high school and I would return to the states and stay with my brother and his wife, while my husband went back to London to wrap things up and hopefully move back with his job and our son would finish university the next year since he could get a student visa and no longer be attached to my husband’s visa like we all were.

We come back to Lexington, Kentucky where our family was and also a wonderful Neuroligst at the University of Kentucky Hospital who only deals with AVM’s. We meet him in July and my husband comes back and we do the surgery on September 30,2013.  Our daughter started school in August and didn’t want to do it then.

The gamma knife surgery is a process from the attaching the metal head frame that weighs 11 pounds to your head with screws. They numb where the screws are going in. They do several scans with the head frame so they can determine where to deliver the radiation. “Your head frame is attached to the machine so you will be completely still. During the session while 192 small radiation beams are focused simultaneously at the target. The size of the focal spot can be adjusted and multiple focal spots can be combined together to deliver a high radiation dose precisely to one target or to multiple targets of almost any shape, anywhere in the brain.” Mine was in the  cerebellum. So your Neurologist is there but you also have another doctor who is the one familiar with the machine that is going to be zapping you. My procedure was a hour and 20 minutes. After that is done they take you out and take off the head frame. Wrap some bandage’s on you keep you awhile and send you home with a list of things to keep an eye out for.

Overall I would say I did okay. I still have some issues because the doctor who attaches you to the machine did not support my neck and my head attached but no neck support did not exactly have my head aligned with the rest of my body. Being in there so long and being my size has caused some issues. I have continuing head pain.  Since then I have tried so many different things to help with the pain.

After that a month went by. My head pain was not getting any better. The neurologist had me go to the pain guy in their office. He had me take a drug called Topamax that was the worst. I literally did not get up from the sofa. I was like a wilted vegetable. I was also on about the lowest dose possible. So on to the next drug. That was gabapentin. It is used for several different things but in my case for neuropathic pain. We came to the conclusion that we needed to lessen the pain signals my brain was shooting to my head and right eye. Originally I took 600mg three times a day. I found it took the edge off. It did not resolve my problem but it definitely made life easier. I would continue to try several other things as well. Nerve blocks (shots in my head) that did not go well. Next I would try the hyperbaric chamber. That was a long treatment like 20+ sessions in the chamber. The thought was the pure oxygen would help my brain heal some. I felt little relief from that but definitely worth trying.

After that I took 2016 and part of 2017 off. I was diagnosed with stage 3 triple negative breast cancer. It was another fight that was 50/50 according to the surgeon. I later meet the Oncologist and I get no your going to beat this you have great odds. We could tell he was being positive because you know mind over matter positive thoughts… at that time they also saw issues in my Thryoid but he was like we will deal with that later it’s not going to kill you. Just what you want to hear yes the delivery was not harsh. What we found is the chemotherapy caused additional problems because of my head/stroke. My left arm would shake so bad. I have issues now but it’s usually when I am really tired or stressed it flinches but during cancer it was out of control. No one really knew why. My head pain definitely increased but not much else could be done about that. I went through several MRI/CAT scans to make sure no cancer in the brain that was fun. Cancer definitely set me back on the progress I felt like I was making.

Emotionally it was hard for me to understand how this illness was perceived so differently to the world. My head stuff is so much harder to deal with. Til’ this day when someone hears I had cancer they respond differently than if they don’t know that but they know about the aneurysm. I guess you can’t see it or they can’t really imagine it like the cancer. Not that I ever want to deal with cancer again but boy the head stuff is so much harder!

I start trying to get my health back in some kind of order. I tried a procedure that is used a little differently A spinal cord stimulator is an implanted device that sends low levels of electricity directly into the spinal cord to relieve pain. In my case it was sent to my brain. I went through a psych test and evaluation.

After that we did a trial for a week the wires were put into back near my spinal cord but went to my head. The battery was outside on my back and my back was all taped up. I was able to send the electrical impulses using a remote control. It was set at a level that they thought would be best. They encouraged me to try and see what level worked best for me. It was the first time in years I felt no pain.

We were all excited to have the smaller battery put in. Well we did the trial it went great then I waited for the big day to get to the small battery in. Well they would insert the battery and when they turned it on I would have a seizure. We worked on it to figure out why. Till this day Abbott Industries has never told us if was a faulty battery or was I just an expectation to the rule. I was the only case where the trial went great but the procedure didn’t work.

The next day I would go through the surgery to remove the battery that was turned off and wires going to my brain. That is probably one of the hardest things to go through. Even my doctor was saddened. He had really wanted this to be the thing that worked since the trial went so well. I took a little step back after that.

We had moved to Florida and my neurologist found a pain management doctor here. He is very honest after looking at my file. He’s like I can’t fix it but maybe we can figure out a good mix to help you live life with as little pain as possible. The steroid shots around my eye were amazing but only last 10-12 days and you can only get them 3 times a year. The steroids can cause heart problems and we don’t need that. He had me try CBD/THC oil an hour before bed. It helps me sleep restfully. I take a 1 to 1 and I take the weaker kind of THC the indica. The other kind is more energizing it’s called sativa. The other thing we have found that helps is Botox shots in just the back of the head and the sides the top front of the head. It doesn’t get rid of the pain but it definitely reduces it. So with the Gabapentin which is now only 3 pills a day at 300mg. I cut the dose in half. I talked with the doctor and we did it in a safe manner. So I have found with the meds and the shots and sometimes when I get very bad pain I take Fioricet. That’s only as needed.

I also go to the chiropractor every now and then. He does an adjustment to help that gets my head on straight as I like to say. It’s basically where your head doesn’t sit on the atlas and gets adjusted so it does. There’s also alignment to help with the ice pick/ shooting pain I feel in my right eye.

I have found with this cocktail of things I’m able to do things and even start running again because the pain is not at the for front. It’s still there but I can mange it. I continue to read and search but it’s no longer all consuming.

Outline

1. April 25,2013- AVM brain aneurysm and SCH stroke 
2. April 26,2013
3. Discharged from hospital in London May 17,2013
4. Another month of at home PT.
5. August 16,2013 first appointment with AVM Neuroligst 
6. August 21,2015 I would meet Dr. Jay Grider he’s a pain specialist (after having gone through several) he actually listened to what I was saying and truly till this day say he is by far one of the most amazing doctors I have had to deal with. 
7. September 30,2013 Gamma Knife surgery in Lexington, Kentucky 
8. February 20,2015- Showed signs of edema 
9. October 29, 2015 went to see sports medicine doctor 

Had adhesive capsulitis of left shoulder (frozen shoulder) probably caused by me protecting it due to stroke on that side.

April 1,2016 records show I have tried 

• Topamax
• Fioricet 
• Steroids

1. April 19,2016- Occipital Nerve block 
2. May 27,2016- Facet Medial branch block cervical 
3. August 4,2016 – We found a disc bulging with rather significant neuroforminal stenosis at C6/C7 with a component of ligamentum flavum hypertrophy posteriorly 

October 13,2016- It was official that I had stage 3 triple negative breast cancer.

The rest of 2016 and a good chunk of 2017 I was focused on that. I found that my head issues would cause things to be even more difficult when dealing with the cancer. My left side that suffered the stroke wound shake and it was very difficult to control. The head pain was increasing. 

I had radiation on the right side after my double mastectomy I also had 21 nodes removed on the right side. I would also take drug called Xeloda after the radiation. I was only able to finish 4 cycles. 

1. Come June 8,2018 I would come back and try to focus on my head pain again. I had a Behavioral Medicine Pain Clinic consult
2. July 9,2018 discussing Spinal Cord Stimulation but my wires  would go to my brain.
3. Due to the severe right eye pain I would get evaluated my Nero-Ophthalmology ( worried about cancer or something else might be causing that pain) The results showed I was good. I believe the pain is from the aneurysm but also when my metal head from was attached to my head for the Gamma Knife I believe the The trigeminal nerve, also known as the fifth cranial nerve, cranial nerve V, or simply CN V was hit when drilling in my head. My right eye brow dropped for awhile after my surgery that’s why I believe it was hit. I know when my neurologist was attaching it he tried moving it around before he drilled it. 
4. October 1,2018 – Trial for Abbott Spinal Cord Stimulation  ( The trial was the first time in years I felt true relief) I was so excited to actually get it imputed.

July 16,2018 Ultrasound multinodular goiter 

July 20,2018 -Thryoid biopsy (also my wedding anniversary)

November 19,2018 I would get my Thryoid removed because the biopsy was inconclusive. We were told about the Thryoid when we found the breast cancer but the oncologist was like that’s not going to kill you right now so let’s take care of the other one first and focus on that. 

1. December 20,2018 I would have the stimulator put in and the battery put in my body this time. I would have a seizure when the battery was turned on. We tried really low voltage they even tried turning it on without me knowing but my body started to react so they turned it off.
2. December 21,2018 the Spinal Cord Stimulator and wires to my brain were taken out. 

It was one of the most disheartening days of my journey. We all felt that way. We truly thought we had found the thing that was going to help handle my head pain. 

1. April 24,2019 – Lumbar puncture under flourosocopy
2. October 30,2020- MRI shows growth in area where they did my Gamma Kinfe 
3. February 19,2021 we did another MRI to compare the October scan it showed the edema is stable so I will go every 2 years unless I feel I need one before.

I have come to find out I have Osteoporosis ( December 3,2019)

Still treating this with Prolia 

 Treatment’s I have tried

1. Hyperbaric Oxygen Therapy ( 2015 I need to look up the length of treatments) I believe it was 15-20 but not sure. 
2. Acupuncture
3. Chiropractic 
4. Medications ( still use)
5. Medical Marijuana (oil)
6. Different vitamins and herbal remedies. 
7. A band on my wrist to help with the head pain someone told my mom about it in India and she brought one back for me to try. (no help)