Time passes so quickly..

Jan 24, 2009

Wow, it's been a while since I last posted. My bad.

Let me do a brief re-cap since there's been a lot that's happened in the last 5 months.

On Septemer 26, 2008 I went into USC University Hospital in Los Angeles, CA for my Duodenal Switch. Sandy (Samaro) was my angel, and she was AMAZINGLY WONDERFUL. I had issues with my insurer (Anthem Blue Cross Medi-Cal) in getting the necessary tests authorized, and found out THE DAY BEFORE SURGERY that they still hadn't authorized my hospital stay (idiots!) but I made one phone call to DMHC and that was resolved. I still stressed about it, but it was fine.

Dr Crookes was amazing (as usual) and did my DS later than originally scheduled due to a woman getting a LapBand before me. Her "easy" surgery lasted longer than my "hard" surgery.. she also was STILL in the hospital when I was discharged. So much for the ease of the Band! LOL 

My surgery went perfectly. There was some (HA! - tons!) difficulty in getting my lines started in the OR, and it actually took nearly as long for them to place my arterial line as it took for Dr Crookes to do my surgery. While he was in there he fixed a hiatal hernia I had for decades, and he also fixed an unknown but suspected incisional umbilical hernia that happened when I had my gallbladder removed in Feb of 2002. 

I spent the first two days in ICU not because of my DS but because of my IH which had spiked out of control. I received amazing care, and while I was in ICU I had a neuro ICU nurse who kept a close eye on me (half the time she was sitting next to me, I hate to think about any other patients she had responsibilty for!), I was visited by an Ophthalmologist, Neurologist and two Neurosurgeons who were concerned about my ICP spiking out of control and seriously messing up my vision even more, causing 10 out of 10 head and back pain, nausea and neurologic issues (slurring, forgetfulness, lethargy, etc.) and they were threatening to put an ICP bolt monitor in or possibly do an emergency shunt placement, which was the LAST thing I wanted since I had just come out of major surgery.

I did avoid the shunt and the bolt monitor (for the time being), and was moved to a regular room the evening of Sunday, Sept 28th after I had my leak test in the morning and Dr Crookes felt that I was stable enough to be moved. Stefanie came to visit me that evening and made everything very comfortable. By this time I was off pain medication, but still had the On-Q pump in my incision area and it was doing a wonderful job. I had started walking and was doing well.. and looking forward to going home :) 

Monday was a great day, and I did more walking. I was able to start on liquids and tolerated everything well,  That first day back on liquids I managed 34 ounces of fluid, and felt great. Pretty much no pain, and I was walking 2 laps around the nurses station on the 4th floor. Monday was also the day I had an unexpected visitor: Lisa who stopped in to see me while seeing Dr Crookes for her follow up. It was really nice to see her, and see how terrific she looked :) I love the SCADS folks, and it was super awesome to see her!

That evening I was able to finally have a bowel movement and then I knew I was going to be able to go home the following day! I was SOOOO missing Lunea (my daughter) not having seen her since very early Friday morning.

Tuesday morning I was okayed to go home as long as I could manage to urinate on my own once they removed the catheter. That was no biggie. Dr Ken (resident of Dr Crookes' who kept an eye on me while I was in the hospital and a real sweetie) took out my central line, took out the On-Q pump catheters, and made sure the discharge paperwork was ready to go. The lovely and laughing Leslie came to keep me company and take me home! And it really was a wonderful thing :) :) :) 

The ride home wasn't bad, and we stopped at the grocery store so I could pick up a few things to eat now that I was cleared to eat "whatever I wanted".. that being yogurt, cheese and some sliced meats and of course my Champion Nutrition Banana Scream protein shakes.

On day 6 after surgery I went with Leslie to the Anaheim PacLap DS Support Group meeting. I weighed in at 332 pounds! That was a loss of 13 pounds from my day of surgery! I was very pleasantly surprised since I had expected to be the same or even more than on my surgery day.

My first month was beautiful! I had TONS of energy, I felt awesome despite the stupid IH head issues and I dropped down to 325 pounds.

Second month was great, too, but I started having some random pain which I suspected was adhesions, and Dr Crookes confirmed this. We were also having a LOT of really bad wildfires raging all across the southland, including just a couple of miles from my home, and my asthma kicked into overdrive. My PCP put me on steroids to help my lungs, and my weightloss slowed down significantly. I ended the month at 308 pounds.

I also STAYED at 308 pounds for another 6 weeks and I was feeling very nervous about that. But with all of the steroids, it was also amazing that I hadn't GAINED any weight, either.

In late October, early November I began having an increase in what we found out was seizures. I had been having them since December 2007/January 2008 but didn't know that it was seizure activity, I just thought I was extremely tired and lethargic. On Thanksgiving, while sitting at the table at my sister's family's house chatting with the other adults, I had a seizure that lasted over 40 minutes. It scared everyone, including me. The next day I was on the phone to my neurologist, and I was started on an anti-seizure medication (I had been taking two other ones for IH issues, (phenobarbital and Topamax) and was started on Tegretol, and my neurologist told me in no uncertain terms that I needed to be shunted as soon as possible.

Two weeks later, I went for a follow up with my neuro-ophthalmologist and discovered to my utter dismay that I had lost more vision and was down to about 5% of my vision in each eye, and of that vision I wasn't able to see anything that was dim. He told me that he felt I needed to be shunted ASAP, and that I needed a lumbar puncture (LP/Spinal Tap) before the end of the week. 3 days later I had an EEG, and that night I began vomiting, and when I would vomit, I would lose all of my vision.. completely. The nausea and vomiting continued into the next day despite taking Zofran every 4 hours, and the neuro-ophthalmologist instructed me to go to the ER.

Leslie, being the epitome of awesome, picked me up, took me to the ER and stayed with me. It was determined that I needed to be admitted, for treatment of the headaches, pain, neurologic symptoms and pressure. It was a huge fight, and the ER doctor (Dr Lee) fought with my medical group for FOUR HOURS to get me admitted. Once I was admitted the neurosurgeon I had seen back in April 2008 for a second opinion on a shunt (he felt that I needed one at the time) came to see me, and attempt an LP at the bedside. He tried for about an hour to tap the CSF but wasn't able to. Apparently my medical group refused to authorize the neuro-radiologist to do my LP until after the neurosurgeon tried and failed to get it. This was Friday night.

Saturday nothing happened.. I was waiting for the medical group to authorize an MRI and the LP under fluoroscopy. Sunday I went for the MRI, and for the first time in my life I was able to fit into the normal hospital MRI machine! When they weighed me that morning I was 299 pounds. It was the first time I was under 300 pounds in nearly 10 years (other than a very brief period of time right before and after my daughter was born in 2000).

Monday, the neurosurgeon came to talk to me. He said he received and reviewed my MRI results and it wasn't what he (or I) was expecting. My MRI's which had always basically been normal, was now very NOT normal. The MRI showed widespread moderate to severe cerebral atrophy. My brain had been damaged, and had shrunk more than an inch in diameter. He was concerned that I could have a neurologic brain wasting disease.. Words like Multiple Sclerosis, Huntington's Disease, genetic disorders and even early onset Alzheimers were tossed out there. He didn't think the IH pressure was the cause, especially because my brain had become "so very small" and my ventricles were now "slit ventricles". He said he was going to have the neuro-radiologist I had been seeing for the last year and a half come in to do my LP to check and see if I had any increased ICP, but he didn't think it would be elevated. If there was elevated ICP I'd be scheduled for a VA shunt, and if it wasn't elevated I'd be scheduled for a brain biopsy to find the cause of the atrophy.

Tuesday morning I was told that there was a problem with the LP. My medical group wouldn't authorize the neuro-radiologist who I had been seeing, and who knew me, my condition and my spine, to do my LP. Instead they wanted another neuro-radiologist to do the LP.. someone who had a lot of experience, but none with IH, or with me.  My spine was not easy to deal with in over 20 years because not only do I have arthritis in my back, but I also had a total compression injury to the entire length of my spine in 1989 and the spaces between my vertebrae were not much larger than the thickness of a needle.

The two neuro-radiologists fought over who was going to do my LP for hours.. Finally my neuro-radiologist sent his guys to "steal" me off of the ward and bring me down to his fluoroscopy OR. As usual, Dr Rappard managed to do my LP with absoluted NO pain. I barely even felt the needles go in. He was able to get the tap on the first try, but the fluid came very slowly.. but it showed my pressure was over 30.. which is twice the high normal pressure. He tried to drain 70cc's of fluid out, but he couldn't get more than 5cc's. He placed a second needle at a different angle and still nothing would come out. He was stumped as to why my pressure would be so high, yet nothing would come out of the needle. He suspected that I had a, or many, dermoid cysts or Chiari I malformation, but suspected it was probably dermoid cysts from the number of LP's I'd had up to that point, and how many of them were totally unsuccessful.

I was glad to have the information that my ICP was elevated, but I was depressed that I had no relief because he couldn't drain any significant amount of fluid.

I was returned to my room, and then I was promptly taken back to MRI for an MRV and MRA which are MRI's of the blood vessels (veins and arteries) in the brain.  Once they were done (about an hour and a half later) I was returned to my room. My nurse came in a few minutes later crying because the idiot hospitalist had given instructions to have me discharged. She had been fighting with him and with her charge nurse the entire time I was gone trying to get them not to discharge me.

Oh god, it was a horrible night. My step-mom was on the phone for hours with the hospital administration who agreed that they wouldn't make me leave, but technically I was already discharged. The hospitalist had lied to my neurosurgeon about my LP and the opening pressure, and he hadn't even discussed my case with my neurologist. The stress of that night, of having the LP, and the MRI's and then being discharged and having to fight with administration, and then finding out that the hospitalist wasn't even employed by the hospital, but rather he was employed by MY MEDICAL GROUP directly, caused me to have two massive seizures. The first one was really bad.. probably the worst I had to that point, and it left me unable to move, completely disoriented and soaked in my own urine from the nape of my neck to past my toes. I had been out from the seizure for nearly 5 hours, and then an hour later, while I was on the phone with a good friend, I had another seizure that lasted about 20-25 minutes.  This was not the first time the nursing staff had witnessed me having seizures, and it wouldn't be the last.

In the morning my neurologist came in and yelled at the nursing staff and wrote on my chart "DO NOT DISCHARGE THIS PATIENT", and I was started on 3 new anti-seizure medications. He also told me that they were going to get me in to the OR to place the shunt ASAP.. they were waiting on an auth. The neurosurgeon came to see me, as did my neuro-radiologist's PA. The two guys, along with my old neurosurgeon (who worked in coordination with my neuro-radiologist) had discussed my MRI's, the LP and the findings and felt that the brain atrophy was most likely caused by severe ICP pressure for such a long time. They wanted to do a brain biopsy anyway, to see if there was any kind of disease process going on, but also to see the extent of the atrophy. That night the neurosurgeon told me I would be having the shunt placed on December 18th in the late night.

On the morning of the 18th I was taken to MRI and CT to have brain mapping done. I had dots placed all over my head, and part of my hair was shaved in patches over the top central line of my head. Then the MRI/CT tech took permanent marker and traced around each foam dot just in case one of them happened to fall off prior to surgery.

I was NPO from the previous night.. not something a new DS stomach was keen on. The neurosurgeon then came in to tell me he was trying to get me into surgery earlier.. hopefully around 5pm. They ended up coming for me at just after 6pm.

I was taken to surgery, and talked for a long time with the anesthesiologist. It was a pleasant surprise because she knew what a DS was, and she pre-treated me and my stomach so I would be less likely to have nausea post-op. We talked and she was a really nice woman who really knew her stuff. Right before she was about to position me for sedation prior to the intubation I had another seizure. She said I was talking and then all of the sudden I stopped and went totally limp and my oxygenation tanked.. dropped like a rock is what she said,, and went down in the 60's. She tried to rouse me, but was unable to so she intubated me and then sedated me. They had been waiting for my neurosurgeon and my old neurosurgeon to arrive before they intubated me, but she felt I was too critical. My surgery lasted about 2 hours or so. Everything went pretty much according to plan. They drilled the hole after shaving the right side of my head and making the incision which followed along my previous scar from being hit by a truck in 1989. The took my ICP and it was 57.. more than 4  times the normal high pressure, and what is considered deadly. Because of the seizure right before surgery they ran a direct EEG which came back showing slow waves in some areas, and high waves in others. Then they did the full-thickness brain biopsy, and then inserted the shunt into my right ventricle through the same hole that was created doing the brain biopsy. Instead of going from the front, over the eyebrow, Dr Tiwari and Dr Salem went through the back because of my slit ventricles. The shunt was placed via CT and computer guidance, and then everything was sown in, and sown up.

I woke up about a half an hour later and felt amazing. My head felt very heavy and sore, but the headache that I had had for the last 25+ years was GONE. In fact I could hear things I hadn't heard in AGES and I could see colors I hadn't seen since I was a young child around 6 years old.

It was like a miracle! I called Sandy and talked to her since I wasn't sure if Dr Tiwari had called her (he did). It was really an amazing time.

The next morning I was taken for a CT and I relished the turn of every corner so I could see what new colors I could see. It was a beautiful day.. cold but clear and the sun was out.. and I loved it! I loved seeing the purples and blues.. colors I hadn't been able to really see in nearly a year, and I certainly hadn't been able to see them this bright in decades.

That afternoon Stefanie came to see me, and we visited for many hours. It felt wonderful, and my head didn't hurt, and I could really hear.. I was feeling so much closer to my old self. I was still having issues, but I could deal with everything. Then later that night the pain came back.. and it was truely horrible.

I found out later that I became mentally altered that night, and it worsened over time. I also found out that I had developed a very large blood clot in my brain and around the shunt. I had blood in my CSF. The next day the neurosurgeon came in and did a shunt tap and withdrew 5 very large tubes (50cc's) of CSF.. and all of it was dark pink.. full of blood.  I felt so much better as the fluid was coming out, and then about 6 hours later the pain was back with the pressure.

I stayed mentally altered, but I convinced my neurosurgeon to let me go home on the evening of December 23rd. Leslie came to get me and take me home.

BUT.. the DS Renegades had a HUGE surprise in store for me! Leslie and Laurie gifted me with a cash gift for Lunea and myself that was donated by many Renegades from across the country, and they donated beautiful clothes, as well.. and when  I got home there was a huge stack of boxes sent from many people all over the country to Lunea and myself for Christmas holiday. It was amazing.. and touching and so generous. I cried and cried, and even know it brings tears to my eyes and a lump in my throat. What an amazing gift and it just bowled me right over!

Leslie then took me to the pharmacy) who wouldn't fill my prescriptions, and then home where I got to give my beautiful girl a big hug before she went off to bed.. and to gaze into her gorgeous blue eyes :) 

The next week is a blur. I didn't really participate in much of anything. I was far too messed up mentally. I was still mentally altered, and I pretty much was sleeping constantly due primarily because I was weaning cold turkey off of the anti-seizure medications as well as several other meds.

The following week after I was discharged I went back to the neurosurgeon who checked things out, and took out the stitches from my head and neck. He also explained that he wouldn't be able to adjust my shunt down for a month to make sure my ventricles didn't completely collapse. I wasn't really excited about the prospect of having to wait for a month to have my shunt adjusted, but I didn't really have much choice, did I?

Following my neurosurgeons instructions I tried to make an appointment with my neurologist, but the medical group refused to authorize it. In fact they denied it THREE TIMES!!

I went to see my PCP on January 5th of this new year, and my weight was 290 pounds!!! OMG!! I can't remember the last time I was at this weight! Despite the HUGE amounts of steroids I was on.. even at the time.. I had continued to lose weight. Only with the DS is this possible!!

I have seen my neuro-ophthalmologist and my PCP since surgery, and there are still issues to get through, but I don't feel unable to handle them. I do get sick and tired of having pain and being tired.. but I understand the the shunt adjustment process could take some time.  I  need to get better with accepting this.  The one thing that bothers me a LOT is that I've started having seizures again, and I've had 4 in the last 24 hours. Very NOT cool. So, I finally have an auth to see my neurologist on Tuesday (it only took a freaking MONTH to get after the THREE DENIALS!!), and the neurosurgeon on Wednesday. Hopefully it'll be something good.. like a shunt adjustment! LOL

Anyway, that's what's been going on. Lots and nothing at all.

Oh! - and about 2 weeks after my discharge I went to the PacLap DS support group meeting with Leslie so we could hear Dr Crookes speak. It was something special, and it was really terrific getting to hear him speak about the DS and about what he's learned and what's going on with DS's in general. We took a picture with the other DS patients of Dr Crookes that were there, and it was really sweet. I figured I should be on the end and that one of the skinny gals should be next to Dr Crookes since he's such a tiny man himself, but no, he wouldn't hear of it, and I was next to him with Sandy on my other side.. here's a picture of us:
Dr Crookes and some of his DS girls
Sandy......               me....     Dr Crookes.... Leslie..    Lisa....   Aimee

So, that's it for now. I don't know where my weight is at since I don't have a scale. I hope on at the neurologist's or the neurosurgeon's and see then. All I know is my body is shrinking and I've been wearing a 20/22 but now they are too large, and I have been fitting into a size 2X or 3X depending on the cut and style of outfit. It's hard to believe at times, but I am thrilled.

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About Me
North Hollywood, CA
Location
41.1
BMI
DS
Surgery
09/26/2008
Surgery Date
Nov 11, 2006
Member Since

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Latest Blog 12
Overdue update
Finally..
a lot's happened in the last 4 months
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Last week was just awful
Monday, March 12, 2007
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