I am about 6 weeks after initial symptoms for what I think is a CSF leak. 3 neurologists and 2 ENTS so far. None think it could be a leak because I don't have typical symptoms. They have changed over the weeks. I definitely feel better lying down, and if I take it easy and just get up some, I feel decent. But when I try to go to work, I get head pressure, tingling. Today, for the 3rd time, the tingling, pulling at top of head went down to nose, then lips feeling numb. Eventually it is a tight throat feeling with heavy tongue where I feel like I have to concentrate to not slur some words. While driving home, the pain goes to my neck, shoulders and down arms like a burning pain.
I had a normal MRI 2 weeks after initial symptoms, but I am starting to think that due to the leak now, my brain is sagging and causing this issue that makes me feel speaking is difficult. It isn't noticeable to others, but I can feel like I am not talking correctly.
I am in Chicago area and have had NO luck being taken seriously in regards to a leak. Although I know better, from reading medical articles for the last month talking about the varied symptoms of a CSF leak. But this shoulder, throat, neck pain has me currently terrified of brain sagging. there are SO few success stories regarding repairs of spontaneous leaks, I feel hopeless.
Originally I tried to blame this on TMJ or migraines but now leak seems like the only possible condition.
Now that I am reclining, the jaw tightness, throat pulling is better. Arms and shoulders still burning some.
I don't know what to do anymore. I begged my primary doctor to just admit me for testing, but they won't.
I don't want to die.
I am sorry to hear that you are suffering and do not have a diagnosis. Do not lose hope please. I am sure there is an identifiable cause to your symptoms.
You need to find a neurologist and discuss the following:
1. Yes, spinal headache is a possibility. A headache that worsens on standing up and improves or disappears on lying flat is a spinal headache. This happens when the CSF pressure in the brain falls. This usually happens after spinal anesthesia, spinal taps, or spinal injuries. However in some people this happens without a cause. This is known as spontaneous intracranial hypotension.
A procedure called an epidural blood patch, if is successful, even temporarily, it generally means the patient does indeed have a spinal headache. A small amount of the patient’s own blood is injected into the space between the dura and the bony spine known as the epidural space. If this causes temporary or permanent cure of headache, the diagnosis of spontaneous intracranial hypotension is confirmed.
Other tests are a spinal tap and measuring the pressure. Although spinal fluid pressure is usually low in patients with spontaneous intracranial hypotension, it can be occasionally normal due to variations in the spinal fluid pressure. A dye can be injected into the spinal fluid and entire spine’s CT scan is taken to locate the leak. Please discuss this with a neurologist.
2. However, there are other possibilities as well. Tension headaches too present with a tightening/pressure like symptoms in head, neck, upper back and jaw. Tension headache is a likely diagnosis since the pressure goes down to nose bridge and you have other anxiety symptoms like tightening of throat and jaw and upper back pain. It can be treated with medications and relaxation techniques. Along with that it could also be TMJ. The pain is worse when you are standing because the jaw relaxes when you lie down.
3. You could also be having ‘benign intracranial hypertension’ (BIH). This happens due to impaired CSF absorption. A generalized throbbing headache worst felt in the morning and last thing at night. This headache is generally relieved on standing (consistent with raised intracranial pressure). It is aggravated by straining, coughing or a change in position. Diagnosis is by spinal tap. The MRI is likely to be normal.
4. It can also be herniation of tonsil, but since you have a normal MRI, this possibility is ruled out.
I sincerely hope you will find this information useful. Hope you get well soon! Good Luck and take care!
Hi! This is carzy my first time reading this forum and I come across this. I have a condition called idiopathic intercranial hypertension. My symptoms are just like yours. You need to get a doctor to do a spinal tap (lumbar puncture) to get a pressure reading. If they wont do it go see an opthamologist and get them to look at your optic nerves in your eyes. If they are swollen they will definatly do a spinal tap. I have had this condition for years and its finally under control. Its very hard to diagnose. I now have a vp shunt fitted as medication didnt work for me. I hope your better soon.
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