Lunea gets Student of the Month x 3 with picture(s)

Feb 11, 2009

January 2009 Student of the Month awards

Here's a photograph of Lunea and I in January 2009 at her Student of the Month Awards assembly where she received THREE Student of the Month awards, PLUS a certificate from the State of California Department of Boating and Water Safety for a art poster contest that she entered and WON!!!

And here's a reference picture of Lunea and I from about a year ago when she received Student of the Month, prior to my having the DS..

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4 month progress picture

Jan 30, 2009

4 months out - surgery way 09/26/2008 and my weight was 345 lbs at the time of surgery (down from 467 lbs)
Currently at 274 pounds as of 01/27/2009.. down 71 pounds from surgery and 193 pounds from my highest weight.



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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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Overdue update

Aug 12, 2008

Yeah, an update is pretty overdue..

Back in May DMHC overturned Anthem Blue Cross' denial of my request for a Duodenal Switch (Thank God!). I received the auth to see Dr Crookes for another consult in June and saw him on June 30th at which point he gave me the go ahead and put through the request for the actual auth for surgery. Blue Cross and my medical group dragged their feet and verbally refused to authorize it for over a month until I told them I had hired an attorney and I was going to have DMHC impose sanctions on them for every day they had delayed authorizing services. Suddenly I had an authorization. Amazing how that works isn't it? LOL

On Thursday, August 7, 2008, Espy at Dr Crookes office at USC Bariatrics called to give me my surgery date:

Friday, September 26th, 2008 at 7:30am

Dr Crookes is leaving for his yearly teaching trip for a month and so I'll be having my DS once he returns. All good by me.

In the process of all this happening, I have been losing my vision and fighting with my medical group to get authorization to be seen by a neuro-ophthalmologist (a specialist for the nerves in the eyes). My ophthalmologists had told my medical group that it was an emergency.. and incredibly urgent that I be seen by a neuro-ophth ASAP because I was going blind, and could become permanently blind if I wasn't treated quickly. Well, it took them 12 weeks to approve something that should've taken less than 3 days. Now I am permanently blind. I have very limited peripheral vision and my central vision is nearly gone.. my color vision is damaged. I have a lot of problems reading, cannot drive, cannot cross a street, read a street sign, or read my daughter a bedtime story.. or even do homework with her. The work I've done I can no longer do (I was a software developer for many years and then worked in visual effects and graphics design).. nor can fall back on my old work because I can't rely on my eyes anymore (accounting and high level mathematics).

My neuro-ophth was pretty blunt with me and told me that I needed a procedure called ONSF or ONSD (Optic Nerve Sheath Fenestration or Decompression) where the membrane that surrounds the optic nerve is cut open to allow the CSF that surrounds it to spill out so it doesn't crush the nerve. Even with the ONSD I wouldn't regain vision.. the damage was done and had been too long standing. If I had been seen earlier when it first started there may have been hope.. but now there wasn't. Nerve damage isn't fixable.

So, again I had to fight with the medical group to get authorization for the ONSD surgery and had to threaten them for that, too.. and had ONSD surgery on 7/30/08 at USC University Hospital by Dr Peter A Quiros, MD who's an amazingly gifted ophthalmologist and neuro-ophthalmologist. The surgery was successful, in that it reduced the pressure behind the optic nerves, but my vision hasn't improved, in fact, over the last week my vision has gotten worse in the eyes that had the ONSD (left). It's still red and hurts quite a bit, and the pressure in my head hasn't gone down at all. In fact, it feels worse because Dr Quiros took me off of my pressure medication so I've been under huge huge huge amounts of intracranial pressure for over a month now, and only have been starting on small doses of Topamax since 8/06/08 which is doing absolutely nothing for my head pain.

I'm very glad to have a DS date FINALLY after SIX YEARS of fighting with various insurance companies, but right now I'd give almost anything for 24 hours without a headache.. *sigh*

Now, something happy and that I'm very proud of.. Cubankitten9 has asked me to be her surgery angel which I am so honored by! She'll be having her DS with Dr Gagner on Monday August 12, 2008 in Miami and I am ABSOLUTELY THRILLED for her!!!

I am also nervous as all get out that I do everything just right for her as the perfect angel should. If anyone has any suggestions please let me know.. I'm always open to suggestions and improvement!

Also.. please stop by Cubankitten9's surgery support page and give her some love and support.. she's just all kinds of awesome and she so deserves the best DS ever! I want her to have pages and pages of messages so she never gets bored reading or responding between sleeping and walking.

Thank you to everyone who's been so supportive of me.. and thanks to anyone who's even read through all this jibber jabber. It seems like I'm always going through some kind of horrible drama no matter how much I wish I wasn't. I'm hoping the drama is coming close to an end.. cross your fingers for me, will 'ya? ;)

Finally..

May 25, 2008

On May 21, 2008 I received a call from Mr Regan Wong at the Department of Managed Healthcare informing me that my Independent Medical Review had been completed, and the resolution of which was that DMHC determined to overturn Blue Cross' decision and instruct Blue Cross to procede with my Duodenal Switch.

The phone call stunned me. I wasn't expecting the news, and honestly, as much as I felt that they had to find in my favor, I still felt somewhat fatalistic that I would be denied .. I was simply too afraid to hope too much in case I lost.. the let down would've killed me. So, my reaction (or non-reaction) took the nice young man from DMHC by surprise. I was calm.. cool.. totally deadpan. And then I hit the "end" button on my phone and it hit me.

It was finally happening. I was going to get me DS.. after SIX YEARS of hoping, and fighting, and praying, and lighting candles and jumping through hoops and writing appeal letters and compiling data.. it was over. I was finally going to regain my life and leave this prison that I've been living in behind me.

I squealed and literally jumped in the air (something I didn't even think I could do anymore!) and did a happy dance. And then I called everyone in my contacts that had supported me and been there for me during this process to tell them and thank them.

The Friday before (May 17th) I had spoken with my neurosurgeon and decided to procede with placing a shunt to drain the fluid from my brain. My neurosurgeon had decided on a VP shunt (from the ventricle in the brain to the peritoneum or belly).

Later in the evening the day I won my IMR, I received an email from my bariatric surgeon stating I wouldn't be able to have a DS performed if I had a VP shunt. This email crushed me.. but I thought, "okay.. I'll tell my neurosurgeon I need a VA shunt instead". (A VA shunt goes from the ventricle in the brain to either the jugular vein in the neck, into the atrium of the heart or the pleural cavity near the lung.)

I faxed off a letter to my neurosurgeon and I sent a response email to my bariatric surgeon, and I settled in to wait for responses.

It's been 3 days with no response from either of them. I know it's a holiday weekend, but it's driving me nuts.

I've talked to people with shunts who've had WLS, and I'm hearing the same thing over and over. I either have to have a VA shunt and then a DS, or have my DS and then a VA shunt. Or, I can have a VP shunt and never have anything other than a LapBand (which is completely unacceptable), or I can have a DS and wait a minimum of 5 months and then try to have a VP shunt placed.. but with the likelihood of adhesions and the issue of scar tissue and staples in the abdominal cavity, the shunt probably wouldn't work or could lead to infection which could spread to my brain.

SO, I'm trying to press my neurosurgeon into switching to a VA shunt, but he was so against it when I saw him. But I have no choice. I can't wait a minimum of 5 months to have a shunt placed, and I NEED the DS badly, as well. I can't live with one and not the other. I simply have too much going on to have to choose one or the other.

*deep sigh*

Anyway, Mr Wong at DMHC said Blue Cross has 5 days to begin making the arrangements for my DS, and that the detailed findings of my IMR and the resolution would be mailed to me. I haven't received it yet, but I expect it in the next couple of days (what with today being a Sunday and tomorrow being a holiday). I think things will seem more real when I get the resolution in my hands and a surgery date.

It still seems unreal most of the time.. but when the reality does hit me, it's a wonderful feeling! *smile*

a lot's happened in the last 4 months

May 13, 2008

I wish I could say I was switched, but I can't. I wish I could say I had an approval and a surgery date, but I don't.. on both counts.

No, in fact I was denied.. twice.. appealed twice, and again denied. I was approved for an RNY with Dr Peter LePort but there's no way on God's green earth I would allow that to happen.

I've been fighting tooth and nail since my last post in January. Fighting with my medical group (Glendale Physicians Alliance is the spawn of satan I tell you!), my health plan (Anthem sucks hardcore!) and now with my State's Department of Managed Health Care. I had planned to request an IMR (Independent Medical Review) for my DS, but apparently Blue Cross/Anthem submitted that for me.. grrr.. which took away about 18 days of my IMR time before I was notified of the IMR being processed and getting MY documentation to DMHC. I ended up sending 467 pages of documentation including a 14 page rationale letter, 12 individual professional studies showing the superiority of the DS over RNY in the super-obese (which I am), and my reasoning regarding my compounding heath issues which would be directly impacted by any WLS.. but more negatively impacted by the RNY or LapBand than the DS. I'm hoping that the giant binder I sent them convinces the reviewer of the importance of my having a DS rather than an RNY.. and that they find in my favor and I win my IMR against Blue Cross/Anthem. I simply can't keep waiting.

And yet, if they find against me, I'm not going to agree to the RNY. I'll keep waiting.. this time for my SSI to kick-in, and then for me to be covered under Medicare. Once that happens, I'll get my DS as a Medi/Medi case. I'm clear that this may realistically take years to accomplish, but I figure I've already waited 6 years, what's another 1 or 2, right? LOL

I should probably catch up on time and occurrences.. Let's see.. Since my last post in January, I have been in the hospital 5 times for issues directly related to or caused by my IH/PTC (high intracranial pressure). I've had multiple lumbar punctures (aka LP's or spinal taps or "taps") to drain the fluid out of my brain. The relief lasts less and less these days. Then after my LP on Valentine's Day (2/14/08) the medical group refused to authorize anymore LP's, despite the fact that they are the ONLY thing that bring me any relief from the pain, nausea, disorientation and neurologic problems.. oh and the visual problems.

On March 27, 2008, after waiting for nearly 8 months to get an authorization to see an ophthalmologist (I'm supposed to see one every 3-5 weeks) I found out that I had lost 40 percent of my total vision in each eye. I had known for a while that I was having trouble, I just didn't realize it was quite so bad.. Two weeks later I had lost 75-80 percent of my total vision and was now bleeding inside of my eyes. The pain kept getting worse along with my vision, and I was facing the very real fact that I may be permanently blind. I am now legally blind, in peripheral vision and central vision, with severe deficits in both areas.

During one of my hospitalizations in February, I was scheduled for a VP/VA shunt surgery, which ended up being cancelled at the very last minute due, once again, to my medical group refusing to authorize it. Instead they authorized an RNY! LOL.. 'cause brain surgery and bariatric surgery are comparable, don't you know! ROFLMAO!

Well, now I'm looking at shunt surgery again. Except now I can't see much of anything anymore.. mostly just a snall area of grey and a tiny area where I can see colors.. but they are all distorted and the images I can see are distorted and blurry.

It's been very depressing. Somedays I wonder if it's worth it, and then I see my daughter and realize I can endure pretty much anything as long as she is a part of my life. It may seem trivial or shallow, but it's the truth. Without her, my life would be nothing. So, despite the excruciating pain I'm in day in and day out, and the fact that everything I have loved and take pleasure in personally and professionally has been stripped away from me, I'm still keepin' on keeping on.

I will admit that there are days when I just ant to drill a f***ing hole in my head.. or chop my head off entirely.. but I know it won't last forever.. no matter what it may feel like at the moment.

The other thing is that I'm lost more than 100 pounds from my highest weight which was 467 pounds (which is also the same number of pages in my IMR). At my last weigh-in back in March, I was 346 pounds. I'm not sure what my weight is right now. It fluxuates with the amount of physical activity I can, and can't, have. It also fluxuates depending on how much medication I'm taking, and the weather, and my crazy hormone laden reproductive system. My lega are retaining a butt load of fluid despite all of my diuretics because I haven't been able to lay down in a bed, or even on a couch or sofa since before August 2007, which has caused my legs to swell profusely like gigantic BallPark franks. In this case the plump when you .. do anything at all. :/

Anyway, this friday (5/16/08) I'll be meeting with my neurosurgeon again to discuss scheduling my shunt placement. I'm praying that it'll do the trick and give me back my vision -- even if it's only a portion of it. It'd be nice to have less pain in la cabeza, tambien. My ophthalmologist, Dr Sherif El-Harazi, who is a living SAINT, is concerned that I may not even get my vision back because my optic nerves may have been crushed under the pressure of my CSF within my skull. It's very scary to be faced with the possibility of permanent blindness, especially when everything I've been trained to do heavily involves my vision.. software development, graphic design, digital effect design, tattoo art, painting and drawing in general.. even my astronomy and flying. Even the little pleasures in life like doing sudoku puzzles and reading a novel have all been stripped from me. I can't hardly bear to sit in front of a computer anymore. I can't see the television, either. I do all of my internet everything on my web-enabled phone (like a PDA), and I have to hold it right in front of my good eye to see the words that are on the largest print setting.

I feel like I'm being tortured.

I have done one thing that may pay off for me. I hired an attorney. A big whig attorney: Mark Garegos. By the time he's done with my medical group, I'm going to own them! Maybe I'll be having a DS as a self-pay! LOL

So, this is a big week for me.. tomorrow I'm moving back in with my parents since I can't manage on my own, then my IMR is due on Thursday (05/15/08), neurosurgeon on Friday (05/16/08), SCADS lunch in Ontario on Saturday (05/17/08) which I am *really* looking forward to, then see my neurologist and therapist on Monday (05/19/08), my PCP on Tuesday (05/20/08) and somewhere in there get ready for shunt surgery, and talk with my attorney. All in all a busy week, overall.

Oh yeah, and I was asked to possibly go on the Dr Phil show to talk about my IH/PTC and the horror of the current healthcare system and how it's tearing people's lives apart.

I'm living with fingers and toes crossed on a permanent basis these days! LOL

And, if you made it through this giant diatribe, you deserve a medal! Thanks for reading (and sorry for any typing errors.. what can I say.. I'm blind!) ;)

Long time no post..

Jan 06, 2008

It's been a long time since I posted here.. nearly 9 months.

I've been still persuing getting my DS. Fighting for months and months to get my medical group to get their head out of their arse, and see things for what they are, and for seeing this surgery as life saving and necessary. I finally received the auth to have my consult with Dr Crookes back in July. And then came all the pre-op testing and consults. That took forever and was very stressful. I ended up having to have more pre-op work ups than the average patient.. even for someone as super morbidly obese as myself, because on March 23rd (a few days after my last post) I was diagnosed with Pseudotumor Cerebri or Idiopathic Intracranial Hypertension, which is a rare neurological disorder that causes increased pressue inside of the skull for no apparent reason. It can also cause blindness, and it most definitely causes pain.. lots of pain.

I've actually had IH since I was about 6 or 7, when the symptoms first really began in earnest, but it took 26 years to get diagnosed. Apparently I've been lucky because my body has grown to compensate for much of the pressure over the years which has kept me from going blind. But it hasn't kept me from the horrible headaches. I've spent a lot of time in the ER and the hospital being treated for my IH, and I'm on about the same amount of narcotics that end stage cancer patients are on to keep my pain level bearable. Fentanyl patches, morphine, percocet and tons of diamox and lasix, and now phenobarbital because the pressure in my head has been so high it's literally squeezing my brain to the point where I'm having seizures. Things really have gotten pretty bad. The only thing that really helps are repeated lumbar punctures (aka spinal taps) to drain the excess fluid out of my brain.. but I've had so many that I've developed scar tissue on my spinal column. The neurosurgeon and neurologist say I need a VP shunt (a tube that goes from inside of the brain and then into the abdomen to drain the fluid) but I'm too heavy to get one because the tube for the shunt will collapse under the weight of my abdomen and therefore won't allow the draining. So, I've been told I have to lose at least 100 pounds before I can have a shunt put in and until then I'll just have to bear the pain and keep having LP's. That's easier said than done, I can tell you. Saying the pain is excruciating doesn't do it justice.. it's so bad you wish someone would either chop your head off or kill you.. just something to kill the pain. As much as LP's hurt, there are days whe I beg for them.. even if it only gives me a few days of relief.

So, it's been a rough road.. I had all of my pre-op tests and consults done and then the cardiologist I saw turned out to be 100% against bariatric surgery, and even more against obese people. He was rude to the n-th degree, and ordered more tests than I needed.. took forever to get them scheduled and then took weeks to get the results. When I called to get the results I was told I was going to need to have an angiogram and at least stents but possibly heart bypass because I had a huge blockage in my heart. WTF?!?

For weeks I was a basketcase worrying about the angiogram, and stents or bypass.. I'm only 33 (32 at the time), and other than being extremely obese, I had really taken care of myself.. ate healthy food and kept active. None of my health problems were cardiac related.. I even had LOW cholesterol! - so this was very upsetting. I had my angiogram in November with the cardiologist's partner, who was a very nice young man who was very upbeat, optimistic and caring. He said I had a pristine heart.. like I had just been born, and not only that, but I had better than normal heart function! He couldn't believe that an angiogram had been ordered for me.. and said that if my heart was any sign, tha I would probably be one of those people that live into their 80's or 90's with no problems.. provided I get my WLS.

As soon as I received the report from the nice cardiologist I made another appointment to see my surgeon, Dr Peter Crookes at USC. We went over everything, and we talked for a good long time. He anted to make sure I completely understood what the risks and possible complications were, and whether I was prepared to live with the consequences. I said yes, and that I was more than willing to.. that I couldn't think of anything I'd rather do. That there was no way I would EVER consider having the RNY, and it was the DS or nothing, and nothing wasn't an option.

We talked about my IH and how the DS was my only hope for any relief with that.. and that I had a lot of hope invested in this procedure, and in him. I know Dr Crookes is a great surgeon. He's an amazing man, and from the people I know who've been his students, he's a great teacher as well.

Dr Crookes told me that he really enjoys doing the DS.. that it's a beautiful procedure, and he doesn't get to perform it very often, but it's his favorite of all of the bariatric procedures. I'm hoing he enjoys doing mine :)

I was told that the office would submit the authorization request to Blue Cross Medi-Cal the monday after I met with him.. so December 15th.. and that they should hear back within about 2 to 3 weeks. Well, I figured I'd give them the full 3 weeks what with the holidays before I called. So, tomorrow I'm calling.. and I'm praying that there'll be news.. GOOD news.

I also need to ask Mary (Dr Crookes' nurse) about this rumor I heard on the DS messageboard from a patient of Dr Ungson, that because of my BMI they would split the DS into two surgeries. I need to make sure that this is NOT the case.. I can't do 2 separate procedures.. I don't think my insurance will pay for that, and I don't want that. I don't want two open procedures when I can have it all done at the same time.

So tomorrow (or I guess later today) I will be calling and asking questions and hoping for some good news all around.

I guess that's all for now.. I'll try to update more.. and not wait 9 months anymore! LOL

Last week was just awful

Mar 19, 2007

Wow, last week really sucked.  I mean.. it really sucked..

Wednesday I went on my happy way to the optometrist to get new glasses.. the first in 3 years.. only to be told that I have "bilateral pappiledema" and that I need to be seen by an ophthalmologist and a neurologist ASAP because I could go blind.. at any moment.  I was told not to do any kind of exercise, lifting, anything that could put additional pressure in my head (like sneezing or moving too quickly).  So, I called my PCP and faxed over the referral letter from the optometrist, and I was told by the receptionist at my PCP's that she'd let him know but that it wouldn't be an urgent request. 

When I called on thursday to check up on it, she hadn't even shown the doctor the referral from the optometrist!  OMFG!!  So, I faxed a letter directly to my PCP, and I'm hoping he received it, because he wasn't even in the office on friday.  

Oh, yeah, speaking of friday, I received a denial in the mail from Blue Cross.  I looked at it and just started to cry.  WHY?  The denail says that it's because the surgeon is not contracted with Blue Cross / LA Care and that he's not in Los Angeles County.  Well, the IPA was the one that chose him, me and my PCP chose Dr Crookes, who IS contracted with Blue Cross / LA Care and IS in Los Angeles County.  So, why are they penalizing me because my IPA is a f'ed up?

Friday night I got a killer headache, that hasn't quit yet.  I haven't been able to sleep, mostly because of nerves, I'm sure.  I had an online test that I had to take by 6pm on Saturday, but of course I was out of it from lack of sleep and my head killing me that I completely forgot about it until last night (sunday).   After I got Lunea to finally fall asleep last night I thought I would take a nice hot shower and then soak my legs in the hot bathwater, only to have the hot water run out about 45 seconds after I put shampoo in my hair. Ugh!  Nothing like rinsing your hair in ice cold water to wake you up in the middle of the night when all you want to do is go to sleep.. 

What a week.. and it's starting pretty badly this week.  I can't seem to get anyone to answer the phone at my PCP's or the IPA.  I definately need a Calgon moment (or 10).

Monday, March 12, 2007

Mar 12, 2007

I called my medical group again this morning.  They haven't even attempted to find another surgeon for my consult, and they have no idea whether or not they are going to consider Dr Crookes.  I'm so frustrated!  At least I was able to talk to someone at the medical group today.. and I'm sure they are hating me even more because my PCP just put through 6 more auth requests for various meds and items for my CPAP unit.  I can tell I'm very popular over there. LOL

Tomorrow is school.. ugh.. I have SO much homework to finish!

Sigh..

Mar 09, 2007

Well, I was approved for my surgical consult.. but not with Dr Crookes, as I was hoping I would be.  In fact, I was referred to a Dr Peter LePort in Fountain Valley, CA which is REALLY FAR away for me.  There is no way that I can get to him.  I can't drive that far, not to mention my car probably couldn't make it that far if I tried, and I don't have anyone who can take off that much time to take me to appointments so far away.  So, lest I say it, I was disappointed, and that's sad, because I should've been so happy about finally getting the approval.

Then it just got worse.. turns out Dr LePort, he has "issues" with Medi-Cal.. like he wants it to be abolished, and he thinks that state and federally funded healthcare is bad.  Wow.. definately not the doctor for me.  Then when I tried to make the stupid appointment, his office said that he refuses to accept me as a client even though my medical group authorized me to see him.  This just sucks.

So after a week of constant calling and wrangling with Blue Cross Medi-Cal and with Glendale Physicians Alliance (GPA) (my medical group), I finally figured that I should have my PCP get involved, because he is the only person that they seem to listen to.  So, he's asked the medical group to switch the authorization from Dr LePort to Dr Crookes.  I don't know if it's going to work, but it's worth a try.

Dr Crookes is the only doctor in my area that performs the DS, and that's definately what I need.  A RNY isn't going to do what I really need, and at least my PCP understands that.  Now I just have to hope that everyone else can figure that out.

My auth expires on March 28, 2007, so I hope that they figure it out soon!

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

Friends 53

Latest Blog 12
Overdue update
Finally..
a lot's happened in the last 4 months
Long time no post..
Last week was just awful
Monday, March 12, 2007
Sigh..

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