I wrote the following story about the day I had to have my first lumbar puncture. It was a challenging day to say the least. I got through it because I researched it, and I trusted my doctor. Now, I’m not saying to put all of your trust in just any old doctor. This doctor had been seeing me for a while and deserved my trust. Not only did the research and the trust of my doctor get me through this challenge, but he support of my husband helped me so much. He was there with me every step of the way. Having that kind of support really helped me through this challenge. It also helps me to think about others who are going through the same thing I am at the same time and send out love and compassion to all of them, this will include myself.
This story was written about a procedure I had on November 3, 2010.
Wendy sat in the waiting room, waiting for her name to be called, waiting for another test, waiting for one of the scariest procedures she could think of having done. Her husband tried to make small talk, and he held her hand. She knew how lucky she was to always have him by her side, he always made things better just by being there. Could he possibly know how terrified she was? She wondered if she could be as understanding and supportive if the circumstances were reversed? Could she be so selfless? Could she simply do what was right? For him, she thought she could do anything.
Looking around the room, Wendy wondered how many people were going to have the same test she was having? How many people were unsung heroes like her husband? How many were there because they felt they had to be?
“We want to do a lumbar puncture.”, the doctor had said. “We have found that some patients with your symptoms have abnormal cerebrospinal fluid pressure.”
“Alright,” she said. Why did she believe this doctor so much? He is a specialist in vestibular problems, but it was more than that, he gave the impression that he really cared. She knew deep inside that he would never ask her to do anything he would not do if their situations were reversed. She quietly asked, “Is it painful?”
“A Lumbar Puncture is a Spinal Tap. However, your procedure will be done under a live CT scan, and you will be numbed. It is not scary like it used to be. Not when it’s done under such a controlled environment.”
The only words that Wendy heard were, Spinal Tap. When she was a small child she was scheduled to have a spinal tap, but the doctors decided to try different testing to see if they could find out the answers they needed without putting a small child though such a “painful” procedure.
This memory came flooding back. She could taste the bile in the back of her throat, the tears forming that she refused to let fall, she would not show the terror she was experiencing. She nodded, as the doctor spoke, hopefully at the proper times. After leaving the exam room and making the appointment, she couldn’t make it the car fast enough. She broke down.
She had been through so much this past year. The vertigo attacks often lasting hours upon hours, many days each week. The surgery on her right ear that helped the vertigo caused by that ear, but now the left ear was causing just as much trouble. The profound hearing loss. She’d simply lost so much, would this test help? Could it actually provide any answers? What if she refused? Could they do something else?
Her husband patiently listened, and told her, “You can always change your mind. Just give it a few days and see how you feel about it. Do more research. I know you. You don’t want to make a decision based on emotions, you will want to find out more, much more, before making that kind of decision.”
Of course he was right. A spinal tap! The fear stayed knotted in her stomach for days. She read as much as she could about a lumbar puncture performed under a CT scan. She also found out as much as she could about the doctor who was going to do the lumbar puncture. She found that a lumbar puncture preformed as hers was scheduled should not be a painful or dangerous procedure. She also found that the doctor performing the procedure was very highly respected.
She also found that many times a lumbar puncture is performed just like they always have been. This brought back all the fear. The poor patients that must undergo this test. It’s painful, it’s scary, and it’s dangerous; but she understood sometimes people cannot have a CT scan but need to have the procedure done, or it has to be done quickly. Relief swam over her knowing she would not have to undergo that type of procedure. She silently sent out love and compassion to all who were having a lumbar puncture that day.
“Wendy?’ Her husband pulled her from her thoughts….. “They’re ready for you.”
So…Yesterday I was having another icky headache day.
I hadn’t been able to hear well for days. The day before I had vertigo for hours. Not bad, throw up for hours vertigo, just a slow spin that made me nauseous and was most annoying, but was better if I focused up close. I could not find a position I was not having vertigo, I also had the other things that often go along with my Meniere’s attacks. Diarrhea, and those wonderful hot moments, and the complete exhaustion. So I’m thinking possibly it was a Meniere’s attack, not Intracranial Hypertension. Especially after what I realized next:
I was lying in bed and realized I can hear today. Not tinny sounds, no strange warp. just hearing! Clear sounds! I decided to take control! (and I have been feeling completely out of control of everything in my life, so this was a major thing!) I decided to dope myself up. I hate to take too much migraine medication or pain medication because I do not want to get dependent on it, or have rebound headaches. But yesterday, I decided to take a rescue medication, and a pain pill, and carried a second pain pill with me in case I needed it. I also carried emergency Meniere’s med’s so I was prepared, to venture outside.
Yes, I wanted to go outside to possibly hear a bird. After all, who knows how long this hearing will last? Unfortunately, it was the wrong time of day to really hear a bird. Some people were just starting to come home from work and things like that. It was such a pretty day. I sat on the porch, I’d told Stuart I’d bring my phone outside with me in case I needed him, he said “I’ll do better than that” and out he comes with me. I was a bit sad, all I heard were cars, and sirens. Human made sounds. Stuart said, “I think I may have heard a bird.” BIG MISTAKE! I said, in a much nicer tone than I was thinking…because I was feeling kind of raw about my hearing…”Ummm. Please don’t do that.” “What?” “Don’t point out to me things you can hear that I can’t. That’s not helping the moment, do you understand that?” He said he did, and we went on to do some other things. I will talk about…but may I say, he later did point out another sound he heard. I know at that time it wasn’t, ‘I know you are trying to hear this thing so I’ll point it out so you can listen and maybe hear it. It was more…Oh, I’m excited I’m hearing this, I grew up in a place where we didn’t hear sounds like this. So I over looked it. And I did hear it, but if I hadn’t, it would have hurt. Even if I have excepted it, there are little things that I’m feeling sad about. Just not knowing. Will I ever hear you again?
However, as I said, we did a little more. Stuart planned to sit out on the porch and work while I enjoyed the day. I asked if he could hand me my pots of herbs. I have 12 -14 pots. I can’t remember how many exactly. I know I grew 11 different herbs last year, but I had a couple duplicates, and one died. So I’m thinking somewhere between 12 and 14. He brought them to me one by one. Many had started to come back. Some I didn’t think were annuals. I guess we had such a mild winter they just didn’t die all the way. The Bee Balm (not technically an herb, but I grow it in with them, the bees like it.) is already 6 inches high and very, very full. It never bloomed last year, I think we’ll see some flowers this year. The mints are doing well. I cleaned out the dead branches in their pots and aerated the roots. So more peppermint, spearmint, and lemon balm (yes in the mint family) this year. The Lemon Balm has also taken off. There is a full pot of it already! YAY! It keeps the mosquitoes and other bugs at bay. I need to make sure it’s beside my Basil so the Japanese Beetles will leave it alone. I really hate those things. They aren’t very smart though. If they do find the basil, I just move it, and it takes them a while before they find it again, so I move it again. Stupid bugs, but they can strip a plant….oh they don’t like oregano either. so I put the Basil between the Lemon Balm and Oregano. Great deterrents! The Thyme came back! And of course the Rosemary never left. The lavender kind of went all gray and looked dead, now it’s looking like it’s turning green. I think I should have cut it back. I had a lavender plant before that stayed green all winter, this must be a different variety. So I have a few things to replace…like the Basil, and marjoram, think we may try Chocolate Mint this year, just because it sounds so decadent, not sure what else I may put in.
I may not be able to keep a garden, but my herb garden. I just have to do it. I have to feel that much in control. Just a little. (and please oh please, let me be able to start cooking again soon!!)
Stuart did take a break from working, and cleaned out the little flower bed, got the day lilies ready to bloom, and got the bed ready to add some compost. So he will add a little compost and some flower seeds this weekend, and we will have our little wild flower garden surrounding our herb garden pots. Minimal fuss, and muss, it just has to be watered. (and I’m thinking about paying the next door neighbors boys to do it when we are having a rough time. They should be 12 -14 now, I think they can be responsible, and she’d like it. One is her nephew/ adopted son, and one is her foster son. A great family. She was one of our sponsors when we were going to foster.)
OH….I did hear some insects making those noises they do. And a very big BUMBLE BEE thought I was very interesting, and buzzed me! REALLY! Oh Goodness Gracious, I had a Bumble Bee talk to me. I have an upcoming post about it.
So control. I’m working on feeling like I have a little bit more back.
I tried to start dinner today. I was feeling pretty good, and almost fell out in the kitchen. This bitch is weak! So how much is the head crap…granted I did start feeling like I had a very SMOOSHY HEAD, but how much is me just being so weak? We went by the grocery store on the way home from the doctor today, we left and Stuart asked if I could carry these two light bags, no problem…after a very short distance. BIG PROBLEM. I was soon swearing at Stuart, “I don’t know why you can’t ever roll the ($*%ing cart out to the car anyway!” He keeps telling me to give them to him. NO, he had enough, and I had them. I’m dying, the muscles in my shoulders are screaming. Then I think, well if I have to lift these thing put them to use, and start using them as weights to tighten muscles I need tightening.
And now it is about 8 hours or so later, and I am so sore I can barely move. From carrying LIGHT grocery bags, and cutting up a chicken!! what has my body been reduced to?
But I am determined to take more control over more of my life. I don’t like feeling like I’m not in control of anything!
Today I saw the headache pain specialist (neurologist specializing in headaches). She is changing up a bunch of medications. Taking me off 2, adding 1, and putting me on a round of steroids to see if we can’t knock this headache OUT, and give me a fresh start! I’m feeling good about the changes. Unfortunately, it’s going to take a while to ramp off the meds I’m on, ramp up on the new meds, and get it all sorted out.
Dr. Gray wants to do another Lumbar Puncture. I’ve decided not to go that route. I’ve decided to wait and see what this medication does first.
A little Control.
it feels good.
My new friend Mary, will be proud of me. (I know my many other friends will also be proud of me, but Mary and I were just talking about this yesterday.)
For some time now we’ve know that I may have a type of high Cerebrospinal Fluid Pressure, where it rises too high then blows out and goes too low.
I mentioned that they caught it in the high level this last time, and we have a name for it. Idiopathic Intercranial Hypertention (this is a link to a Wikipedia article if you are interested). I’m going to call it Intercranial Hypertention of IH while I’m talking today…Okay?
I won’t sugar coat it….I’m scared.
I’ve talked about some of my symptoms. They don’t know if they are being caused from the IH or from the medication side effects, yes they are that similar. Can you believe that? I will be going back in soon for another Lumbar Puncture.
So why haven’t I felt like this before. Some times I may have for short periods and just thought a Meniere’s attack was coming on, or any number of my problems, but remember, I’d have blow outs. Literally, my spinal column would start to leak in weak spots and my pressure would fall, often way too low and I would have those symptoms. If you’ve been following me for long, you know what that’s all about.
This time, not only am I having balance issues, but it’s affecting my vision. Remember, I’m losing my hearing at a pretty rapid rate. Now, I may be losing my sight.
I had not read much on this, I thought my pressure would have to be much higher for this to happen, then I read an article on the Intercranial Hypertention Research Foundation site last night that startled me. The person who wrote it could have been interviewing me. Here is excerpt from the article about visual symptoms,
“The most common visual symptoms are:
Transient Visual Obscurations (TVOs): These are often described as momentary grey spots, or a dimming or blackout of vision that occur in one or both eyes, especially after a change in position (such as standing up from a seated position). TVOs are the most frequent visual symptom but are temporary; vision generally returns to the affected eye or eyes after the TVO episode, which lasts approximately 30 seconds to a couple of minutes. They may also be accompanied by pulse synchronous tinnitus.
Blurred vision: Blurred vision may be a direct result of papilledema and swelling in the surrounding retina. It can also be the result of a retinal hemorrhage.
Double vision (diplopia): Double vision can be due to sixth nerve palsy.
Decreased contrast sensitivity: Over time, chronic IH may affect the ability to perceive changes in contrast. Some with IH report examples of this decreased ability, such as the grey or faded out appearance of black text against a white background. ”
It does mention that ” in many cases, the surgery successfully relieves optic nerve swelling and improves or restores vision.” That was very encouraging. I’m also very hopeful they will get this under control before things get too advanced, but I have not been feeling good for some time now.
We all know acceptance of a chronic illness is a big hunk of the battle. Once you accept it, you can do so much more to make your life more tolerable. But how can I accept this when I don’t understand it yet? When I feel so confused so much of the time? When I’m told, who knows, you may have to have a shunt. Oh, that’s great to hear. A shunt. More brain surgery to put a tube in my brain to drain fluid to my abdomen do they can control how much CSF I have all the time. So if I have a shunt, will this interfere with me getting a cochlear implant?
More questions to ask the doctors. And the new headache specialist hasn’t returned Stuart’s calls. Not feeling good about that!
So right now, there are so many unknowns. I had a strange vertigo attack yesterday. It was a positional attack, but it wasn’t really. If I got in one position it got much better but it was still there and everything was doubled. I was freaking out. In full panic mode. Sweating, and these little cries coming out of me, saying something is wrong, this isn’t right….stop, please stop….and trying to slow my breathing…but not doing a good job. Unfortunately, we were downstairs, and Chris witnessed most of it. I was mortified. Finally, I calmed myself down, if I can get to the point where I can just chatter, about nothing, just talk and talk…I can let it go and even if the world is moving I’m somewhere else.
Afterward, we came upstairs. For most of the night I was off. The walls are wavy, the floor it tilting, I’m living in a Fun House, but I’m the only one who sees it. For days I’ve been telling Stuart that I feel like something bad is going to happen, someone is going to die. Truthfully, I thought it was our dog. She’s 19, she is doing well, but in dog years she’s close to 100. Last night I broke down and was convinced I was dying. I told him how sorry I was, that I know I’ve talked about giving up but I promised I hadn’t given up on him that I was still fighting but I was sure I was dying. At first he tried to say no, but then he knew he just needed to talk to me. I told him what I wanted at my funeral, or rather who I didn’t want there…I want a party instead of a normal funeral where people remember me and have fun, I told him to display a photo of me when I was skinny, not a recent picture. I wanted a bouncer at the door, and everyone had to give their name, if someone gave their name who was on the NO list, they were to be told, “I’m sorry, you should have visited her when she was alive, you are not needed here now.” (Yes, I’m telling him all of this with slurred speech and I couldn’t focus well, but I was sure about all of it.)
So he asked, if you were possibly dying what would you like to do before you die? The only thing I could really think of was to renew our vows. I told him somewhere near the water….a nice lake, or the beach, or a water fall (I bet that would make me dizzy though). He was all for it. He didn’t realize that I wanted to renew our vows so I could point out to him that they were until Death Do Us Part….and I wanted him to carry on without me.
Let me say right now, I DO NOT think I’m dying. (Well, no more than anyone else is.) But sometimes lately, I feel like I must be. My brain isn’t working quite right and that is the only thing that makes sense to me, but then again….my brain isn’t working right!!!
I have been in touch with both my psychologist and my psychiatrist….I’m making sure everyone is looking out after me through all of this because I know my brain isn’t working just right. One shouldn’t see things, or forget things, or not know where they are….it’s kind of freaky. I’m so grateful Stuart has the type of job he does so he can be with me all the time right now.
So I’m in a holding pattern right now…about everything
Right now, there are no good days. I may have some decent moments, but no completely good days. (I even told Dr. Gray that I feel like shit!) – actually Stuart was on the phone with her and she heard me in the background. I was trying to stop cursing, my therapist said, it’s probably not a good time for that. People under this much stress tend to feel better if they curse more. Alright!!! Stuart can no longer bitch at me for my language….but I am trying to tone it down..I do get a bit out of control….can you believe it? Me?
Titty Sling Update – I got too tired again trying on bras…and they let Stuart come in and help me, I’m sorry to all of you ladies who have to do it alone! Finally I begrudgingly picked one. I didn’t like it but it served the purpose. We walked out of the dressing room, and I pointed to a bra, and said, I wanted that one, but they were out of my size. Stuart looks up on the top rack…thank goodness he’s over 6′ tall!! and found one in my size. Once again I said, I’m just buying it! So we did. And it fits like a dream! I love it! But it’s white. ick. I can’t wear white with let’s say…..white. And it was on clearance – $9!!!! but no more in stock *sad pouty face*. We will be scouring other stores tomorrow to see if they have any left!
OH…when I was in the store, an employee, ran into my walker with her shopping cart TWICE! She was picking up clothes people put in the wrong place. She saw me, looked me in the eye, and bam! I have been hit! She said something I could not understand. The next time, same thing. I thought….I’m so glad this store will hire the mentally challenged. (Wow! a big difference from the $.02 that pissed me the other day huh?) I admit she did annoy me, but I just let it pass. The only thing that really bothered me was that she was also the lady who was in charge of the fitting room. I asked if Stuart could help me. Yes, but he had to leave his things outside. (his things were, his sweatshirt, and shopping bags – not store merchandise) He asked where, she mumbled something and pointed to a shopping cart full of stuff. Stuart said, “I wonder if I’ll see that stuff again?” We did, but we had to dig for it down in that shopping cart. How bizarre. But I really felt, mentally challenged, not just lazy like the $.02 lady…. I think that made a huge difference.
So…I’m scared, that’s normal right? I’m a bit off, somehow I have to hope they can make it better….somehow.
Going to start talking to doctors about disability, afraid about that too. If my doctors said they don’t think I’m disabled I think I’d fire them. Oh, I’d be wayyyyy too angry to speak. I know I’d have a break down right there. Yep! So I have an email to my therapist about how to talk to them about this before I actually do it. I’m way too touchy right now.
The new baby should be here no later than Thursday. (they are inducing if she doesn’t go into labor before then). I’ve barely seen the mama. She has been in the guest room with the door closed in the dark for most of the time. Chris has been around. It’s been kind of surreal. Especially with all the new stuff going on with me, and she was diagnosed with this same thing with the pregnancy, but she seems to just have the headaches. I deal with the headaches very well, I’ve been having migraines since I was 11. Poor Penelope has never been sick. This past 6 weeks has been hell on her I think. I hope things are easier after Rowen is born.
Forgive the look of the blog….I’m working on it. I’m still not there yet, but I’m playing. It’s hard to read a lot because things are blurry so forgive me if I don’t make it to your blog a lot, or if I have many misspellings. But the graphic stuff is kind of fun (if they would just tell me what size it needs to be)…I’m playing…It will turn into something we all love I hope!!