I try not to rant about my life or the people in it but I just had to get it out before I implode.
Been dealing with facial pain and invisible neuro symptoms for about 6 years, had a craniotomy 2.5 years ago for trigeminal pain of unknown etiology (never actually got a diagnosis), seen countless specialists without answers. Pretty sure I had a brainstem/spinal cord stroke just over a year ago and was referred to Mayo only to be denied. Now have symptoms of intracranial hypertension. Diagnosis on my chart includes āpossible MSā but it is definitely something vascular. Finally got a second opinion at Barrow, where they actually took the time to read my story and all my images/reports and will be having a dynamic angiogram next week and see Dr. Lawton the day after.
Wife ticked off Iām always āseeking out all these doctors and surgeries all over the placeā Not like I havent tried. I even gave the second opinion from Dr. Lawton to a local ENT thinking I could have them help me here, and he said huh whoās this guy? your jugular veins are fine on the CT. (I can assure they are not)
Anyway Iām sure many of you have also experienced the hypochrondriac accusations, to which my wife went a step further actually accusing me of having Munchausen syndrome, telling my mother in law even. Iāll admit I definitely spent too much time energy searching for an answer, but as if I could go in a make up a story and have my neurologist send me to Mayo (if anyone has Munchausen it is her sister faking stroke symptoms). She comes from a family of just ignoring things and hoping they go away and complaining about everything ie. I found a small benign brain tumor on her MRI and she would not/has not even mentioned it to her doctor, but sure to tell you about daily headaches. Has all these other symptoms and POTS, and EDS runs in family and I suspect she has a CSF leak, denies she has EDS and wonāt look into it or ask her doc about CSF leaks.
I rarely ever complain. Yet she is so sick of my āsymptomsā we agreed to not talk about it anymore so I said she also needs to not ask about my appointments. So I went ahead and got my appointments at Barrow before I stroke out and ruin my career/life (graduating medical school next year). Told her Iām going to be out of town next week a few days. She asked how much it will cost/how im paying for it (typically her only concern) and how I havenāt paid off the last test that had ānegative resultsā yet (my parents will pay because they actually believe me). She stormed off and went to bed (we sleep in separate rooms due to my snoring, the irony of the left side of my face and throat swelling from the Eagleās syndromeā¦ you canāt make this stuff up).
I guess I need support sticking up for myself. I feel so lonely in this. Iāve had this opinion from Barrow for over 5 months and just now acting on it, thinking I could somehow show her Iām not lazy etc. but now at the point my health is going downhill and have to do something about it. I feel like a sad excuse of a human being for not looking out for myself but Iāve had enough.
Iām so sorry that youāre having such a hard time, itās tough enough dealing with constant pain & other symptoms, without not having family support Good at least that you have support from your parents, lean on that as much as you can, & of course weāre here to listen. Sadly youāre not alone, we do hear of other members whoāve not been believedā¦hopefully others will give you some support too. I do remember when my symptoms were bad that I was constantly searching online for answers, the pain & confusing symptoms get you like that.
I hope that your appointments next week go okay & that you get some answers. Rant as much as you need!
Thinking of you & sending you a hug, let us know how you get on
I have to agree with EVERYTHING Jules has said here. Pain is a strange bedfellow, others often canāt see it, canāt feel it and have no comprehension of it and Iām sorry to say but until the have to endure constant pain, they never will. AND unfortunately often the worst offenders can be medicos. Once that label of hypochondriac gets applied it follows you everywhere. I say this as I too have been given that label, so I ignored my symptoms until things progressed to an emergency situation and I was rushed to hospital via ambulance. Donāt be letting it get to that point.
You are not the first (and you wonāt be the last, I can assure you) to get mixed messages from Drās. It is not unusual for differing dr to have totally differing views and seem very quick to dismiss any other view that doesnāt equal their own. For many years (20+) I was told there was nothing wrong. Saw all sorts of drās, specialists and wizards, it was all āa figment of my imaginationā then they do this scan and come out with the line āā¦ohh look what WE foundā¦ā like it was all something new, I wanted to scream.
I think you should follow through with your appointment with a medical professional with the relevant medical experience and take familyās advice with a grain of salt. Family can be VERY quick with judgement, especially when itās invisible to the eye. Iāve often said sometimes I think itād be easier if Iād lost a limb, people would be able to see why.
Now, my situation is neurological and intercranial hypertension is something I have an issue with. You say you āā¦now have symptoms of intracranial hypertensionā¦ā Can you explain your symptoms? A CT would show signs of intercranial hypertension and a radiologist would recommend neurological follow up as there can be a few causes and therefore a few differing treatment options. These options would need to be discussed with a neurologist.
All I can say is Iām so sorry. My heart is crying for you. Youāve worked hard to get through med school in spite of horrific pain, & now, when you need her support most, your wife is fully bailing on you. Iām so glad your parents are on your side (HOORAY for Mom & Dad!! I applaud them!!). Theyāre at least trying to understand what youāre going through & offering financial support is the icing on the cake. All those doc visits do add up even w/ medical insurance.
Iām actually thrilled to know Dr. Lawton has taken an interest in your case. The only reason we donāt suggest him more often is because he seems to be pretty picky about who he will take on as a patient. The fact that he has reached out to you & offered to help you is fantastic!! Iām so glad youāre following up w/ him. He has helped at least one of our members who had significant vascular ES. Also, knowing that heās doing a dynamic angiogram is great. We often recommend those be done in a dynamic way as too many docs do them in a static/neutral position & the results come out normal whereas a dynamic test checks out all positions to look for compression outside of neutral. Iām sure you know this.
I am very hopeful that youāll get confirming results & surgery scheduled to take care of the problem(s) that exist. It would be so great for you to be able to finish out your last year of med school feeling good & ready to go into residency as opposed to feeling totally dysfunctional all the time. I think youāre amazing for doing what you are doing & putting up w/ what you are on the home front. Iām so glad youāre finally taking the necessary step for ultimate self care.
Iāll be praying for you over the next week. Please let us know what you learn from Dr. Lawton.
So sorry you are going through this. I can relate somewhat. My first surgery was in 2014, I had over 5 years of complete relief. Symptoms returned. One of the doctors I saw trying to get surgery on the second side actually accused me of the relief from the first surgery being due to a placebo effect. I was so insulted. I ended up finally being able to see Dr. Lawton, who agreed to do my second surgery, assisted by a Barrow ENT. It took over 2 years from onset of symptoms until I had surgery. I recently saw my neurologist and told her how much better my headache was since surgery, she asked didnāt I want to yell āI told you soā to the rooftops. Hopefully Dr. Lawton will be able to help you as well.
Good at least that you have support from your parents, lean on that as much as you can, & of course weāre here to listen. Sadly youāre not alone, we do hear of other members whoāve not been believedā¦hopefully others will give you some support too. I do remember when my symptoms were bad that I was constantly searching online for answers, the pain & confusing symptoms get you like that.