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My son has since April has been having pressure on the top, back and behind his eyes. He describes it as pulsing sometimes and traveling pulse sometimes.. It is accompanied by he says its like a spike into his brain from where his spine joins his head. It is very painful. This makes him anxious and afraid. It last for hours and has increased to days and now going on for a week. His eyes are dark and sunken. His color is pale and he just cocoons and hides to deal with the pain. No appetite. He went to urgent care a few times they said sinus and gave him flonase nasal spray. We also started zertec on our own. This helped initially a ting bit but the frequency and duration has increased over time. He is in a constant state of pain. Also he since the start has felt like he is exhausted, no energy. This was a very active working young man.
Ended up in the Emergency Room on July 30th 2019. They did a spinal tap that came back negative and a CT scan without contrast and sent him home with no answer. He had a followup at a MD who they arranged and he basically said nothing except let me know if it continues and I will see you. My son called and the office said there was nothing they could do for him and said go to the ER.. No one will look into this. Its frustrating. Treated like they are doing you a favor . He also had wisdom teeth out after this ER visit. We were hoping that is what was causing all this but that was not the case. He is loosing weight and stays alone in his dark apartment because the light bothers him and lays down which helps a bit till he falls asleep from exhaustion. He pulls himself up in the morning and takes Tylenol and Motrin to take the edge off but its not really working anymore. We found a chiropractor who uses a gentle method . He did an Xray first and said C1 was out of alignment. radiology said it was normal. Chiropractor initially seem to help because pain was a little less but then headaches came back worst than ever. He gave us the name of a MD he said would listen and try to find the cause. MD was busy so he ended up with the nurse practitioner. They gave him a referral to neurology. He received a phone call from the Neurology office setting up an appointment for Oct 11th with their headache clinic.. His By is running a little high at 140/90 .He is 27 years old. He is now depressed ,feeling hopeless and afraid.
I thought they would have done an MRI because of his history. When he was a child around 7 he would stretch his spine backward in like a reverse C as opposed to going forward and he would loose balance and go blind and fall down. This happened in school in 2 nd grade and we ended up first with them thinking seizures but after workup they were saying not much on EEG but still could be seizures and wanted to start him on dilantin. I kept saying it only occurs with the backward stretching but o one listened. They did a Ct scan and referred him to a neurologist. First hospital wanted to operate and we ended up in Boston for a second opinion and that MD was saying we need to observe this because its the earliest we have seen this mass and is may reabsorb. It did. I do not recall the name but my husband does of the type of mass. They said it it grows it then outs pressure and gives bells palsy and hearing loss and eventually vision loss. We went forever repeating MRI\’s and then every year and then every two years till we stopped. It has been a long time since he had an MRI. He has learned not to stretch backwards because he will loose balance and lose vision. We never started the dilantin. It would be 20 years now he would be on it if we did.
I recently called his neurologist in Boston. We live in a neighboring state so his insurance will not carry over because its out of network. He is self employed and therefore we asked hospital to bill him rather than insurance because the cost would be higher if they billed insurance. He ended up paying just under $4,000 for the ER visit. We would sell everything to make him well or just feel better or get a definitive diagnosis. We have an appointment Nov. 4th with the Neurologist in Boston. No one would order an MRI of the 3 MDs and one ARNP we saw. With the history and headache for days. I am worried about an stroke, aneurysm and of course a mass. I was an RN for 37 years and retired and moved 4 years ago to the center of the state and I can say it feels like no one really cares anymore. Its all about keeping cost down. If you ask a question like how long do you have to lay down after a spinal tap the answer was I do not know. I said I thought it was 2 hours and when she came back she said she would get the answer but forgot. The nurse then asked the MD and she said about ab hour or an hour and a half. I was nor sure they knew so we did wait the 2 hrs but they were annoyed. We left with no answers. How about putting the patient first and exhausting all measureless to help them. It is such a long time away and he is just suffering. He is barely able to function. Stays in bed laying down as much as possible. Sorry I am rambling on. We are desperate.
Does anyone have any suggestions or thoughts?