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| by Dawn Irons |
Heart to Heart With My Readers
Can I see a show of hands of those who love medical drama? I prefer my medical dramas to come in the form of Dr. House or Grey’s Anatomy rather than my personal medical issues having the potential to make the next plot of a reality show such as Mystery Diagnosis!
Since Christmas I have been having non stop issues with the pseudo tumor cerebri (PTC) and have been rapidly losing my hearing. As we have all experienced and understand all too well, mainstream doctors are very uneducated when it comes to Lyme disease and related illnesses.
In dealing with the PTC, I went back to my neurologist who was willing to do a spinal tap in January to remove the excess fluid off my brain. This brought great relief from the migraines and projectile vomiting that came from the nausea associated with the headaches. Within 3 weeks of the spinal tap, I was back where I had been with the pain and vomiting. I could tell the problem was getting worse.
Shortly after this, I noticed the constant ringing in my ears had returned so I went back to my ENT who has been monitoring the hearing loss. He examined me and said the hearing loss that I was having in my “good ear” needed to be addressed immediately because the longer it went unchecked, it had the potential to become a permanent hearing loss. He said the problem was too much fluid in the cranial space that was putting pressure on the hearing nerves in my head.
I thought, wait a minute! That excess fluid problem is the same thing as the PTC! Could they be related? I quickly explained my history of PTC and asked if this could be the cause of the hearing loss. He said it would be a rare presentation of PTC, but that he had seen it cause hearing loss.
Finally! I felt like we were on the path to solving this problem! The ENT told me to return to the Neurologist as I would need another spinal tap to remove the fluid. In the meantime, the ENT wanted to put me on high-dose diuretics and steroids while we waited on the spinal tap to prevent further hearing loss.
Immediately, a red flag went up for me! Steroids?? That is completely contraindicated for Lyme patients. So I called my LLMD and explained the dilemma I was facing. He warned me of what could happen with steroids but also understood that I was facing the risk of going completely deaf. We spoke about the pros and cons of steroids use in Lyme patients and then he finally asked me the dosing info on the script. The steroid had been prescribed at extremely high doses, such a high dose that I believe it even gave him pause to reconsider the options before me. I chose to forego the steroid option and get back to the Neurologist for the spinal tap.
When I contacted the Neurologist and explained what the EST had said about needing another spinal tap, he flat refused. He said he did not feel comfortable doing another tap so soon after the last one and that he prefers to not do them more than once a year. This is when I knew I was in trouble!
As the fluid pressure increases, so do the headaches, nausea, vertigo and hearing loss. Then the Neurologist further explained that he had been in practice almost 30 years and had NEVER heard of PTC causing hearing loss. I explained that the ENT, who deals with hearing loss all the time, said it was a presentation of PTC, just a rare presentation-- but that he had seen it before.
The Neurologist was not convinced. He sent me off to an ophthalmologist because he believed that most people with PTC had visual disturbances. Yet the fact that I had been diagnosed with PTC without question by 2 MRIs and 2 previous spinal taps did not seem to sway his opinion. I have not had visual problems, only hearing problems!
The ophthalmologist confirmed what I already knew. I had perfect vision! He did several different tests including field of vision and a few more. He said that there was some scar tissue near the optic nerve that shows the eye has been affected by the high fluid pressures, but that it has not been high enough to affect my vision at this point. So I told him what the ENT had said about the PTC in relation to the hearing loss. And as if he was reading off a badly written script, he told me that he had been in ophthalmology for “X” number of years and that he had never seen anyone with a hearing loss presentation, only vision! Imagine that! An ophthalmologist only being familiar with the vision side of PTC presentation!
At this point, I had 4 doctors working with me and refusing to consult with one another! My ENT knew exactly what was going on but the Neurologist and Ophthalmologist refused to accept his expertise in that he had seen and dealt with PTC causing hearing loss before. My LLMD was on board to caution me about the steroid use the ENT wanted me to use. Four doctors and not one of them could agree on any aspect of how to treat me. All the while, my hearing was deteriorating and my migraines were taking over my life.
At a point of exasperation, when I kept insisting that the ENT needed to be respected for his area of expertise, the Ophthalmologist, frustrated too, referred me out to the University of Texas’s Southwestern Medical School. He said there was a doctor there who specialized in Neuro-Ophthalmology and had a special interest in PTC as his focus in practice.
I was less than thrilled at the idea of adding a 5th doctor to this existing nightmare! I am so glad that I went! I told this new doctor up front that I had no hope that he could do anything to help me and relayed the story of the ENT, LLMD, Neurologist and the Ophthalmologist. I was awestruck when he did not even flinch when I mentioned Lyme. He had seen it before in PTC patients! He did not seem surprised when my vision was perfect! He did note the scarring on the optic nerve. I told him my main concern was my hearing. He said it is not the most common presentation of PTC, but he has seen cases of PTC where it causes hearing loss! I thought I had died and gone to Heaven!
I further explained my intolerance to the medications used to treat the PTC and how it would cause me to sleep for days on end and be completely non-functional for taking care of daily life responsibilities. He had heard of that before as well! All the other docs told me that it was strange that I would have that side-effect to the meds and they’d never heard of that before!
I left this PTC specialists office with an appointment to see a Neuro Surgeon and get ventricular shunts put in my brain that will control the fluid pressure from building up! I am scheduled for surgery in the next 4 weeks.
What does this mean for the PHA? My surgery is supposed to have a 2 week recovery time. Depending on how well I heal and recover, there may not be a PHA put out that month. But do not fear! If you have a subscription, I will just add a month to the end of your subscription so you will receive a full 12 issues for your cost.
For my advertisers, I will invoice you as normal, but if it turns out that we cannot put a paper our that month, then I will hold the funds for the next issue and not send an invoice for that issue but rather just use the funds for the previous paid invoice.
My hope and prayer is that I will recover quickly and the PHA will not miss a beat in how we operate. But I do need to have a backup plan in the event of unforeseen circumstances and delays in recovery.
I am forever grateful for all the letters and words of encouragement that my readers have sent me over the last three years in telling me how much the PHA has made a difference in their lives. It helps to know that on those days I get so discouraged and wonder why I am doing what I am doing.
I appreciate our readers, subscribers, doctors and support groups who go to great efforts to get the PHA out in their communities as a means of Lyme disease awareness!
There should be one more issue if the PHA out before my surgery date. Please keep me in prayer for a quick recovery! I look forward to being back in the saddle again!
