Is it ok to "muddle" through?

[Baffled]

Hello to everyone,

I notice that I go through phases where specific spots in my back are sore, especially near my right shoulder blade. Lately, the pressure was moving up to my neck and head. I try to take things slow. This is my first leak. I leak between T8 & T12. I have had 2 blood patches and 6 weeks of solid bed rest. The first patch met with more success than the second. The patches took place in July and August. My doctor has told me that I am fixed, although I know that I am still not right. I am scheduled to see Dr. Mokri in January.

To those of you who are "repeat leakers", do you notice your aches and pressures sooner and then take things slower? or will this this just come on full speed and then you just deal with it as you are forced to do? I am trying to determine when it is ok to "muddle" through some of the pressure and when I just need to take a break. Do you believe that you can compromise your own health or do you think that this is totally out of your control and it does not matter what you do? or do you believe it is a combination of both? I have so many things to do physically that I have put on hold. If it truely does not matter how physical I am, I would like to just "muddle" through them. However, I do not want to hurt myself. I am not taking any medications to manage any pain or symptoms. I do drink alot of coffee these days. I try hard to listen to my body. (Sometimes, I do not want to listen to it, if you know what I mean.)

There was a time when my brain went goofy and I would get lost while in stores, going to the dentist or to a friends house. I would constantly misplace items in our home in ways that fortunately my family could laugh at. At times, I would speak random thoughts. I do not want to go back to the days of excruciating headaches or of days where I did not trust my brain to function correctly. Thank God my husband and 3 boys are supportive of me.

I had an incredibly awesome day last week. My husband helped me work on a large project in the house. I was more physical than I have been in a long time. It felt awesome!!! (I use to be a very physical person.) This week, I am not right. Before my patches, my doctors nurse told me that once you turn the corner, you just get better and better. (I am aprehensive to believe everything that she has said, but it sounded good.) I thought last week was that corner. This week, I feel just kind of bummed with the reality once again. Is there anything a person can do to get better and stay better? Was I silly to listen to my body and think that I could be somewhat physical again? I am so much better than I was when everything came on in July.

Just curious to hear what has helped you manage through this and to be proactive to avoid more leaks. Oh, one more question. Do you experience slower leaks now in comparison to what you have had initially?

I appreciate having the opportunity to access this forum. It has provided me with support and insight that I was not able to find before. Thank you!

[PainInTheNeck]

Hey Baffled....

I am glad you are at least some better but I can totally relate to how some better is still not good enough!!! I will see people and they will say "Oh I'm so glad you are up and about" and ask how I am. Truth be told I am not ok but if I say something to that effect then people like give me little lecture type talks about that I should be positive, blah blah blah. I am positive!! I am positive I will not tell myself I am ok when my functional level is not anywhere near where it should be and where it was the day before my symptoms started! I am positive I am going to get better!

As to your question about "muddling through". I had that discussion with my Neuro-surgeon yesterday and he was adament that I lay down as soon as symptoms start. Muddling through is the worse thing to do according to him. Muddling through will most likely cause your leak to become bigger! Makes sense..pain is our bodies way of getting our attention to make sure we know that something is wrong.

I remember before blood patch when I was in the worst way that I felt sicker in the morning and better as the day went by. Now I find I am real good, almost normal in mornings but by about 3 or 4 pm I start getting the pressure and neck and headaches back. I am trying to make dinner early in the day to heat up at night.

One thing I have noticed that I hope is going to change is that I still am not comfortable holding my head high. I still keep my chin somewhat tucked in. I am not a shy person, lol, never have been. I bet strangers think that of me now because I only look down. It is weird how some of you say you can only look up. I guess it is just which nerves become involved when our brains sag.

Well that is my sharing for now. Hope you are feeling better again!

[Baffled]

Dear PainInTheNeck,

Thank you for sharing the information you obtained from your Neuro-surgeon. I can't tell you how much I appreciate it! My neurologists office brushed me off in such a bad way that they didn't take me serious even from the beginning.

My leak was confirmed using a mylogram followed by a CT of my spine. At that time, my worst days/weeks were when I could not sit up or walk. To use the rest room, I ran as fast as I could all hunched over. Within 2-3 seconds, my headache was more than I could stand. I would lay on the floor, steps or where ever I was able to manage to make it, in that 2-3 second window. I would hold my head, get control of my breathing and wait for my head to settle so that I could run some more and eventually make it to the bathroom. (I hated using the bathroom! It was a huge painful ordeal for me.) Anyways, I am better now than I was then. Back in September, I had an array of syptoms which scared me. I requested a doctors appointment but was denied. (I am very disappointed with the neurologists office.) When I shared my symptoms of heat sensations in my head, trickles of fluid, being lost, confused, random thoughts, left ear fills with fluid but my right ear is bone dry, hearing a pulse in my head...all odd things for me, I was told, "Kristina, some patients say they have an ax or a railroad tie sticking in their head." Thats all that was said. It was clear that they either A) thought I was crazy or B) because I did not describe my pain with a weapon, it wasn't a concern.

From that experience, I have questioned which of my symptoms to listen to. At this time, I am baffled and try to make sense of everything without the advise of my doctors office. I have listened to each and every symptom I have; however, I have honestly not rested each time. If they were not concerned, I wasn't sure if I should be or not. Maybe my symptoms needed to be worse to require rest. Hmmm,...I bet that is why it is such a slow recovery! I will do my best to rest, as you suggest at the onset of symptoms.

I did go through a phase that you are in with trying to time things so that you know that when things 'hit' you can call it quits for the day. There are better days ahead for us! Again, thank you so much and I wish you the best.

Kris