Sadly one place we wanted to go before we headed home we didn’t get to make. We had booked a cabin at Lake Roper for a few days but had to cancel. None of us were happy about this. Since we live in a desert and were vacationing in a desert we were looking forward to a bit of water fun.
Unfortunately we got a call from my neurologist saying he received the second opinion on my papilledema. I had already spoken to the optometrist and discovered that the condition is a bit more serious that I thought. I know my normal eye guy said that it could lead to blindness but was thinking legally blind not for real blind. Apparently papilledema can lead to actual blindness. I had received the second opinion right before we left for vacation confirming swollen optic nerves. For now it’s recommended that I get my eyes checked every few months.
My neurologist wanted to redo the spinal tap to verify that it was indeed IH. So we headed home for that. Unfortunately the spinal tap didn’t go well. After listening to the UMC doctor go on about how he hated spinal taps unless the patient was under Valium and how the whole process was unreliable for IH diagnosis he got started.
I will share with you my experience not to scare you but to warn you of your rights as a patient. I did not find things out until well after.
The doctor started low in my back and after a few moments said he couldn’t get a sample. He had me press my chest into my legs further. He moved up a notch and tried a new spot for a sample. Unhappy with how it was progressing he kept ordering me to arch my back more, while my chest was pressed into my thighs. After a while he started talking about how he might need a longer needle. Then he had the nurse climb onto the bed with me and press her hand against my stomach to force me to arch further outward. I offered to change positions since the anesthesiologist got the sample from the first spinal tap with me sitting differently.
Digging about for a sample of spinal fluid he managed to hit a nerve. It felt like lightening shooting down my leg from my tailbone. The second time he did it I yelled at him to, “stop doing that”. My husband by this point had to leave the room for fear of hitting the doctor he was so angry. The third time he hit it my leg went numb, which was better than lightening.
After all this he said he was “close” but couldn’t reach it. He was going to move up another notch. After doing so he still couldn’t get a sample he decided to switch to a longer needle. He had me sit up, I could feel he left something still in my back but since I couldn’t see I’m not sure what, then lay back down. When I laid back down I got really sleepy suddenly.
Fighting to stay awake I heard him mention he was switching to a longer needle. I also heard him comment to the nurses, “Do you see how fast she’s breathing” several times. As sleepy as I was I tried to regulate my breathing through meditation. At one point I heard he need a BP on me before I left.
The experience took about an hour or so before he declared, “I’m not going to fight the diagnosis. Pressure went from 27 to 37 and back to 27.” My husband told me later he did get the sample he was after.
We got my BP, 121, and I went home as soon as I could walk; about ten minutes after the doctor had left. I had previously been told it was required that I stay there for an hour. We saw the doctor in the parking lot walking back with his lunch and he talked about me going back on Diamox and I went home. The next 24 hours were great. Other than having to lay down supine I was pain free.
The next day I got up, well after the 24 hour mark, and discovered I had a spinal tap headache. It’s its own ring of Hell. The closest I can come to describing it is that it feels like there is a space between your brain and skull and that there are explosions going on in that space. In reality your brain is, well, sagging, due to not enough fluid to support it.
After several days spent in bed and trying to build up my tolerance to the pain I talked to one of my sisters. She normally isn’t on FB but was due to recouping from a knee replacement. She was furious when she heard what happened. As an ex-nurse she wanted to know why I wasn’t given a blood patch right away since I had a history of spinal tap headaches. I had no idea what she was talking about.
Apparently they can use your own blood to seal the hole caused by the spinal tap. This can have you up and moving in minutes after the procedure. After my husband calling around we found that the only place to get it done was the ER. We’ve been told many times to never go our town’s ER. But after the five minute drive I was nearly crying in pain it was at a 10. There was no way I could have made it the hour to the next one.
Things get worse from here. I give the nurse my phone with my medical info. They ask me how much water I’ve drunk. I reply that I don’t drink water I drink caffeinated liquids to control my migraines. They decide to hook me up to an IV and give me a painkiller that’s “stronger than morphine”. A few hours later they said I was good to go since the pain was gone and that it was simply dehydrated. I asked again about the blood patch but was told it wasn’t needed. As soon as I moved I started puking. I already knew I couldn’t take Oxycodone since it makes me horribly ill and was wondering what they hell they gave me.
I make it home and spend the night puking. The next morning my husband hands me a prescription for oxycodone saying I was supposed to take it for pain. I broke down in tears thinking that’s what they put in my IV. No wonder I was so miserable! I told him there was no way I could tolerate this anymore I needed that blood patch; now!
After calling around again we were directed to the acute care clinic in town. After going there we were told no they don’t do it go to the ER. That trip lasted 8 hours. I finally found out that they gave me Dilaudid but that the nurse didn’t give me the correct anti-nausea medication; though it’s doubtful that it would’a done much good even if she had.
I finally got the patch. The doctor was the one who preformed the first spinal tap. He was disgusted that the neurologist had started so low in my back and had stuck me three times. The relief was almost instant. I still had a headache but it went from an 8 to a 5. Apparently it’s not uncommon for a stress headache to build up along with the spinal tap headache.
Post ER you’re supposed to go to see your normal doctor. So we did. The very next day I got in. My doctor is a former ER doctor who’s only working in the clinic to pay off student loans according to him. He told me he never wanted to see me at that ER again and to come to him first. He half seriously commented that the ER owned the morgue too.
He hooked me up to my third IV in three days and fed me a cocktail of old school drugs I can’t remember the name of now with a shot of coffee. It worked wonderfully! I was given instructions that I needed to have caffeine then water and to repeat that over and over. If I even feel a headache coming on grab a Monster or a chocolate bar.
I was finally pain free after two weeks. But then we started noticing other things wrong once I was up and moving. I had a list of side effects that was far too long. The problem was we didn’t know what was being caused from Diamox and what was being caused from the spinal tap. The thing that drew the line for my husband was when I started getting shooting pains down my leg that would cause my back to seize up. The loss of coherency was apparently funny for him but he wouldn’t let me drive.
I wound up back at the doctor. I showed him pictures of my back healing and gave him a list of what was wrong. He demanded to know why I was on Diamox at all. I explained that it was the mediation for IH. He said, “My little book of medicine says it’s a rare drug used for glaucoma and altitude sickness; when we need to lose a lot of water fast. It’s not meant to be used long term.”
I explained that my neurologist wanted me on it for two weeks to see what side effects remained. At this point it was nearly two weeks give a day or so and I had the following:
- Slurred speech
- loss of coherency
- shortness of breath after so much as walking from a parking lot
- shooting pains from tailbone down left leg
- lower back seizes up
- tingling in hands and feet
- tingling in my face
- lips and tongue tingle after eating sometimes
- loss of balance
- ringing in left ear
My doctor then said he was going to be calling my neurologist. Apparently what should have happened prior to the spinal tap was a picture of my lumbar should have been taken to see if it looked like a “road map” and that it’s best to use fluoroscopy. As my doctor said it’s easier to see where you’re going if you can see what you’re doing.
I was dumbstruck. They could use a scope for this? I wouldn’t need three holes in my back plus the hole for the blood patch? According my doctor it’s within my rights as a patient to demand the use of the fluoroscope.
Then my doctor dropped the other bomb on me. While a good bit of the side effects should clear up after getting off the Diamox he was concerned about the pain in my back and leg; especially since it’s the same one that was effected when the nerve was hit.
I was given three scenarios;
- nerve damage
- a piece of needle broke off and is in my back
- or an abscess developed
That earned me a STAT MRI of my lumbar and CTscan of my head.
It has been less than a month since my lumbar puncture. Right now we’re waiting for the results of the MRI.
There are obvious risks of a spinal tap but the knowledge that they could have been reduced and weren’t hurts the most. I’ve been off Diamox for a week or so now. I’m getting headaches again and I still have the pain along my leg that’s coming and going. I’m sleeping more than I should; from pain or my body needing to heal I don’t know. My doctor is talking about me having a shunt put in. He at least got me a new neurologist.
My husband wants to sue the neurologist but I talked him out of it; malpractice suits last years and rarely solve anything. If Tricare or the Army wants to sue then I wouldn’t stop them but it’d be on them. MOST lumbar punctures don’t end up this way. Normally it’s a one and done and 60% of people don’t get the headaches.
It was the lack of information given to me and the lack of a doctor making correct decisions that caused a lot of the problems. If you’re doctor wants you to have a spinal tap done he has a reason but go in better armed than I was. Know that you can request pictures of your lumbar and a fluoroscopy. Know that if you get a spinal tap headache you can have a blood patch so you don’t have to suffer like I did. I went five days with that headache before I got the patch simply because I didn’t know it existed.