It's been quiet

It’s been kinds quiet around here huh? Well sorry and shame on me.

Without the shunt in I am a mess with head pain at times to say the least.

The craptastic Doctor that I walked out on did do me on favor though, he got my appointment with a pain management Doctor moved up by nearly three weeks. So for that I do thank him. In fact, I walked out on him on a Tuesday and had my first meeting with the pain management Doctor on Friday.

Now this Doctor is very well….interesting. I guess that’s a good way to put it. He is definitely not a stuffy clinical type. One of the first things he asked me when meeting him was did I mind if he cussed, I said no, he said great because he was a in the Navy and had the mouth of a sailor. LOL

Before meeting with him I had to sign a contract, yep a contract. Some of the things it stated are that at each visit I will bring all medication and he or his nurse will count pills. I also had to write down the name and telephone numbers of two pharmacies and only use those. I also had to store all medications in a safe, which is not a bad idea. The reasoning for all of this I suppose it the type and strength of medications he is prescribing..there is no fooling around here, none whatsoever.

My first appointment was great, heck it should have been being that it lasted two hours. He was absolutely wonderful to talk with, like talking to an old friend. He is not just about prescribing pills but also about using books, relaxation and meditation to manage the pain. His goal, as well as mine, is to get me to a 3-4 on the old proverbial pain scale that I loathe so much. That is what he considers functioning. Right now most days I stay at a 5-6 with spike to 7-8 and on a really bad day stay at an 8. So for now he has started me on two new medications, one of which I had to stop taking because it sedated me way to much. But as he has said we have just started and we will find the right combination. Did I mention that I really like this Doctor!!! He is one of the few that have not taken a look at my medical issues and run for the hills.


Did you know it is possible to gain 22 pounds in 14 days? Yes, it is.
Did you know that your legs, ankles and feet will swell up like balloons? Yes, they will.

That would be what happened to me.

It started out with some mild swelling then got worse. So I went to the Clinic and unfortunately for me was not able to see my regular Doctor. The Doctor I saw put me on lasik and said if the swelling was not better go to the Emergency room. Yes, I kid you not. That was on Friday. On Saturday, it was not better but way worse. So Mom and I headed to the E.R. at Rex. After blood work, X-ray, CT w/contrast that determined that it was peripheral edema- swelling due to accumulation of fluids. Well duh!! Still no one can figure out why this is happening. By this point I have gained 15 pounds. They put me on Bumetanide along with the lasik and told me to follow up with my primary Doctor. Ahhh yes, me the boomerang.

Well, all is not going well and gets worse Tuesday night. At this point I have gained 22 pounds and the swelling has become pitting edema. That is when you press on my foot the mark stays there. Well Tuesday night every time I would lay down it felt as if someone was standing on my chest. I also had a very wet cough. I would try laying in different positions but nothing seemed to help. It was a tight gripping feeling in my chest and the pain was tingling down my arms. It scared me to death.

So off the the E.R. we go again. (at about 4:00 am) They take me back pretty quickly and at first they are pretty sure I have congestive heart failure, as all the tell tale signs are there. They threaten to admit me and run test after test after test. Finally the E.R. doctor comes in and lets us know that they have ruled out congestive heart failure but that I will still need an echo cardiogram because of all the strain that has been put on my heart by gaining 22 pounds in 14 days. He also calls my primary Doctor and between the two of them they decide not to admit me. Thank Goodness. They also think they may know the culprit of the swelling, Neurontin.

Neurontin is a pain medicine that I have been on for about a month and one of the rare side effects is extreme swelling. Ahaaa!!! Sure enough I stop the medicine and within two days the swelling is completely gone and 17 pounds too!!! Unfortunately I will still need to have the echo cardiogram to see if any damage was done.

Now onto the Meningitis front. I had the spinal tap on Monday. Boy are those things not fun. I mean really how can anything involving a needle going into your spine be pleasant? My opening pressure was 31. Way too high. A normal pressure would be 12-17. The Doctor doing the spinal tap was very nice and wanted to try to drain me down to 25 but for some reason was only able to drain me down to 27. Oh well, that is better than 31.

So that fluid was left to be cultured and I also went and had blood work done to see if it looked clear.

Guess What? I have good news for a change… Can you believe it?

Both the spinal fluid and the blood work came back clear!! The infection is gone. YIPPEE!!!!

So what’s next?

Back to Baltimore of course.

I will head back there for 48 hours of IPC monitoring.

What is that?
Well that is where they insert a probe into my head that will continuously monitor the pressure in my head. This will hopefully give them a better idea where to place the next shunt and what type of shunt to use and what setting it should be on.

After this testing I will then have surgery to place a new shunt.

As of now things are still a little shaky on when I will head to Baltimore. It will either be on the 24th of this month or the 7th of next month. I should know more definite details Monday. Everything depended on my spinal fluid, bloodwork and swelling issues and now that they are all clear we just need finalize with Dr. Williams (we have been in contact with him almost daily, God bless him!) The reasoning for the possible date in October and not the week before is because that is a major Jewish holiday and Siani is a Jewish hospital and they do not do any elective procedures during that time period.

So I think I am all caught up for now and I know I have probably left a ton of things out. I will try to get back to posting more regularlly.