12 days post op

Well, I decided to update my blog, because my journey is not over yet and I do send people that ask about my disease to this blog, so I thought I should post how my recovery is going from time to time.

The first 10 days were so far the hardest, being at home and wanting to do things, but not being able to do things is hard. This last week, I have cried alot, I guess I had unrealistic expectations of what it would be like when I got home. My brain tells me one thing and my body tells me something else. I can't bend down for anything and it seems like I am dropping more things :) I can't lift more than a gallon of milk, I can't drive and I can't twist. It is easier said than done, especially with two kids and a husband whom has only done laundry a handful of times. He is a fast learner lately. However, I must say that something happened for me at the 10 day mark. I woke up and started feeling better, I can tell my body is healing. I can also tell when I am doing too much. I certainly don't want to undo anything that was done with this surgery, but you can only look at that piece of trash on the floor so many times before you have to pick it up.

I am borrowing one of those "grabber" things and that helps for the light weight items to pick up with out bending. I did 2 loads of laundry today, it wasn't easy and I did get the girls to help load and unload the dryer. I have a little pain at the incision site and a dull/achy pain to the left of the incision. I have some shooting pain if I bend (which I am not supposed to do, but it happens when you aren't thinking about it). I can feel the plate in my back, this is the worst when I go to sleep at night, I tend to turn a lot and I know I twist in the bed, so I get some pain from that.

I am only taking Vicodin at night and maybe once/twice during the day. I don't feel like I need it as much. Time will tell how the surgery has went and I will keep you updated on my recovery.

Here is wishing everyone a healthy, happy and much brighter 2010!!!

At Home & Recovering

I made it home, it took about 5 1/2 hours, the ride wasn't too bad, I stopped every hour and stretched and walked. The first night home, I managed to sleep from 10:30 p.m. - 9:30 a.m. on one pain pill, so I was thrilled. I have to sleep on my side and then switch sides. I am in pain when I sit in one position for too long. I am following doctor's orders of not bending, twisting, picking anything heavy up, driving, etc...

I am thrilled to be home and see my kids. It was so nice just playing board games and watching television with them today. Lauren is getting used to me not picking her up, although she still asks with that big ol smile on her face, knowing the answer before she even asks me.

I go back for my post op appt. in a couple weeks, I am feeling pretty good so far. I don't know how much the surgery has helped me and I won't know that for some time. I don't want to push my recovery and end up undoing anything that has been fixed, so I am going to take it easy. I will post more if anything newsworthy comes up. I will post after my post-op appt. and after my MRIs that I have to get coming up, to make sure the cyst has not re-filled.

Day 3 - Post Op - Discharged

It's 7:17 p.m. and I just got discharged from Heartland and settled into our hotel. I am wore out, shaky, sore & tired. I didn't get much sleep last night, someone thought it would be a great idea to vaccuum at 4:00 a.m. right outside our door. I sat around most of today waiting for Dr. Fiegenbaum to show up and check on me, he showed up at 5:15 p.m. and it took about an hour to get discharged. The trip to our hotel (1 mile) was very hard, every bump I felt. I am dreading the drive home tomorrow, but want to see my kids so badly. It is going to be a long 4 1/2hour long drive home tomorrow. I have to take lots of breaks, getting out and walking. Dr. F. asked me if I felt any better and I told him that my main complaint was bending down and that is one of the things I can't do for a while. No bending, twisting, baths, driving, picking up anything heavier than a gallon of milk for 3-4 weeks. I don't know if I am any better yet. I do know that I had horrible knee pain since Thanksgiving and that pain is no longer present since surgery.

I have a 4 inch incision in my back and I can feel my nerves waking up, I have some shooting pains going on, but my main pain is the plate and screws in my back. I am on vicodin every 4-6 hours. He also de-tethered my spinal cord and sent that off to the lab for analysis. Only time will tell if the surgery was successful.

I have a follow-up appointment on Jan. 8th at 12:30 p.m. in K.C., MO at Dr. F.'s office.

Now it's time for me to start healing, I will be taking it easy for quite some time. Merry Christmas to all if I don't see you around the holidays.

Day 2 post op.

I have hit a few milestones late last night and during the night. I walked 2 times around the hospital with my walker. I got my catheter out, hope I NEVER have to have one of those in again. The nurse said if I could go pee in the toilet by 4:00 a.m., I wouldn't have to self-cath. She gave me until 4:30a.m. and I went. So happy about that. I walked to the bathroom without my walker this morning...very proud of myself. I was a little shaky and had a nurse right next to me, but I did it.

After breakfast, I got up and went to the bathroom by myself, and then Chris and I walked to the cafeteria and got a coffee, so I am making huge strides. All the nurses are saying that I look so much better than yesterday.

I got my i.v. taken out this morning, but the needle is still in my hand, just in case. I may get to take a shower tonight, if Dr. F. gives me the go-ahead. I am expecting him anytime for a check up on me.

My main pain is my lower back, where the plate is. I can feel the plate at all times. I am on all kinds of pain pills, so it helps. I had to get out of the hospital bed, I've been in it pretty much non-stop since 1:00 on Friday, with just a few exceptions. I am sitting up in a chair now. I expect to get released tomorrow, then Chris and I are going to check into a hotel, before attempting to drive back home.

Dr. F. said that my recovery will be a long road ahead, absolutely no twisting, bending, lifting more than a gallon of mile or driving for the first 3-4 weeks. I have to come back out here on Jan. 8th for a post-op visit. I am feeling a little light-headed, so I must go now.

laying in bed

im gonna make this short, i feel better, tired of laying flat, just got my 1st, 10-degree raising of my body at 9:00 am , this will keep happening until 3:00 and then i get to try to stand up.

it is hard to eat breakfast laying completely flat. food kept falling :)

i did have tethered spinal cord, which dr. f released.

my incision site hurts, where they put the plate and screws.

Day of Surgery

I added this post to tell a little about my day of surgery.

My surgery was at 1:00 and I had to arrive at Heartland at 11:00 a.m. I couldn't eat/drink 8 hours prior to surgery. We arrive at the Hospital and register. Chris and I take a seat and the waiting room is full of people. I spotted another couple that the girl had similar clothing to mine, I wondered if she was another Tarlov cyst patient. Finally after about 20-30 min. they called my name and took me up to a pre-op room while Chris waited in the waiting room. I was to see him one more time before surgery.

I got up to my pre-op room and changed into my gown and waited nervously. The nurses were so nice, I filled out paperwork, answered health questions , got my i.v. inserted, took some meds and talked to anethesia. I remember two different anethesia nurses (one male, one female) coming to talk to me. I told the female anethesia nurse how nervous I was, because I have never had surgery, or anethsia. She said they would give me something to help calm my nerves. Dr. Fiegenbaum and Debbie West showed up about 20 min. prior to surgery and Dr. Fiegenbaum came into my pre-op room and talked to me and made a mark on my back, where he was going to enter. I didn't see them again until post-op. The male anetheisa nurse came and explained how I was to have monitors on me at all time and where they would be placed on my body. Also I was explained that there would be someone in the operating room monitoring my anetheisa and someone monitoring my nerves. Chris came up to my room and said his good-bye to me and the next thing I remember was being wheeled away on my bed. I vaguely remember going in an elevator to the operating room, but I must have been getting some pre-anethesia, because I don't remember much. I remember being in the operating room and looking up and seeing those huge lamps looking down on me. That's all I remember. I was told the operation took 2 1/2 hours and I was in recovery for 1 hour. When I woke up, apparently I asked the nurse some silly questions. I remember being extremely tired. Chris came into my room. I pretty much was in and out of sleep until Sat. morning. I noticed my TED hose had blood on them, both legs, I thought this was odd, but found out that is where they were monitoring nerves, I guess I had some needles in my legs at some point.

Heading to the Hospital

Just finished packing up and am now heading over to Heartland Spine & Speciality Hospital. My pain is still very great. I skipped my pain meds this morning, because I couldn't remember if the hospital told me to take them or not, so I just skipped them. It really confirms that I am doing the right thing, I can't imagine living my life in this horrible of pain or on pain meds. forever. I am praying that everything goes well with the surgery and I will post after surgery when I feel up to it. I miss my kids and can't wait to get home to see them. Also, Santa, if you are listening, it would be nice for a white Christmas, just wait for us to drive home first :)

Thanks to all of you for following my journey thus far, I am hoping for a happy ending to this story.

Pre-Op Appointment

I just got back from my pre-op. appt. Dr. Fiegenbaum and his nurse, Debbie, are so nice. He answered all my questions. I am a little bummed, because I asked him if he thought my lower back pain, which is my worse pain, would go away after surgery and he said that he doesn't hear that people have that pre-surgery, only post-surgery. He said every one is different, and the nerves affect everyone differently, but normally people with these cysts that are pressing on nerves get bowel/bladder, leg, feet, hip pain. I have a little of those types of pain and a LOT of lower back pain. I am questioning my need for surgery. I feel like I do need the surgery, because of the size of the cyst and he showed me how it is eroding my tailbone eggshell thin and just the size of the cyst is huge and he showed me the nerves being pushed and pressed on. I do think that it needs to be drained and sutured closed, but I sure hope that it helps my bending over and lower back pain. He said that at the 3 month mark, I will show some improvement, but that is the point where people try to do too much and aggravate the nerves and can have some issues. Going to take a nap now.....will post more on Friday...the BIG day!!!

Blood Tests & odds and ends

Got my blood tests results back a few days ago and it turns out that I have a UTI, so now I am on anti-biotics for 5 days. I had no symptoms. I also have low blood sugar. They said we can go forward with the surgery. So, anyhow, I haven't started packing yet, I still have to wrap all Christmas presents, clean the house, do laundry, pack, finish Christmas shopping, pack the girls things. I got a lot to do in a short time. Tomorrow is Lauren's first dance recital ever. I am keeping my fingers crossed that she does something, anything up on stage, not just stand there. :) After church tomorrow, Father Chris is giving me an annointing of the sick, or something like that, a special blessing. I can use anything like that, so thanks for all the prayers. I am getting super nervous lately. I have never been under anethesia, I think I am getting screws in my tailbone area, something I am going to discuss in my pre-op appt. I will be bringing my laptop and will post as I can.

Getting Ready

It's been a little bit since I've last posted, I've been busy getting the tree up and down and back up...long story. The house is decorated. Presents are mostly purchased. I've been trying to get it in the girls heads that I am going to be away from them from a little while. Lauren has been exceptionally clingy lately. I took her to dance class today and she did the same thing she did last week, stand there and watch the rest of her class. She is having no desire to join them in tap or ballet. Tumbling is another story. She loves to tumble and do cartwheels. I asked her teacher if next week they could start out tumbling, perhaps she would do tap and ballet after tumbling...she is going to try it. Her recital is 3 days before I leave, so I think she is connecting dance to me leaving or something.

I'm getting a little scared about the surgery, but know I'll be okay. I've had a couple issues lately, my left knee has been bothering me for a week and a half, I don't know why, I must have strained or sprained it. I caught a cold from the girls, but it already seems to be getting better. Yesterday, while out shopping, a car was waiting for my parking spot and Lauren was in her car seat, I decided not to get out and help her with her seatbelt, instead I twisted around to get to her in back and when I did this, I felt a pain in my chest. This pain has been there for 24 hours now, but has got a little better. I feel it when I take a deep breath. I am giving it a few more days before I call my doctor. Friday, I am going for my pre-surgery blood tests. I leave in under 2 weeks.

My Surgical Procedure

Here is my understanding of what Dr. Fiegenbaum will do for me. He will deflate my cyst, he will plug the opening of the cyst with my own fat. He will wrap the nerve root with Duraguard(twice) and suture it all in place. Luckily, I have a menigeal divirticulum, which means the cyst itself is devoid of nerves, which is good, a true Tarlov cyst has nerves running through it, which makes it much harder to operate on (having to separate nerves from cyst). There are still risks, as there are nerves all around the cyst, so he has to be very careful not to injure any of the surrounding nerves. Perhaps this is the reason there are so few neurosurgeons in the United States that even want to tackle this type of surgery, it is such a risky procedure.

On a Yahoo health board, a member describes the procedure as "cysts are like balloons. They are not hard. Imagine a balloon being deflated and then wrapped so it cannot inflate again." Dr. Fiegenbaum CANNOT remove this cyst, it is part of me, I believe a part of my dural tube. I may have said this before, but I believe Dr. F said that I have had this since birth, similar to spina bifida and some trauma (for me lifting a too heavy piece of lumber) caused trama to my spine and started the cyst to start filling up with cerebral spinal fluid, thus inflating the cyst so big that it is pressing on all my nerves. My surgery is at 1:00 on the 18th of Dec.

December 18th!!

December 18th is the date of my surgery. I will be traveling to Overland Park, KS and having surgery at Heartland Spine and Speciality Hospital www.hssh.org with Dr. Frank Feigenbaum. I have to be there on Wednesday for my pre-surgery consultation and then have surgery on Friday, most likely will be discharged in 3-4 days after surgery. Since I live so close (4-5 hrs), they are going to let me drive home and return in 3-4 weeks for my post-op appt. I am waiting for my packet of info., so I can make my travel arrangments. I am so excited to be finally moving on with this. He normally only does surgery on Tuesday/Thursdays, but I explained how I really want surgery this year due to my insurance rates going up so much next year and the fact that I have already met my deductible and part of my max. out of pocket. It is so nice that the are squeezing me in. I should be home and celebrating Christmas, it isn't until about a a few weeks to a month post-op when the nerves start healing that I will begin the pain roller-coaster.

Insurance Approval Received

I received a call from Debbie in Dr. F's office today and she said that they received insurance approval today. Yippee. She said the only way I could still have my surgery this year is if I am willing to have surgery around Christmas. I told her I was fine with that. I should know soon the exact date, so I can start making my reservations. Chris is going to try to get a week of vacation fronted to him from next year. We may have to celebrate Chrismas early this year. I can't wait to find out my surgery date and get our hotel booked. Must start Christmas shopping pronto!

Feeling Great!

Wow, this new medicine my new Primary Care Physician put me on is working great. I am in the least amount of pain I have been in since May, 2009. My head is a little foggy at times, but I can't believe how much less pain I am in. I am only wishing I would have changed physicians long before now. I am still waiting for precertification on insurance and am still deciding about having surgery this year versus early next year. I may not have a choice by the time insurance approves me :) Our insurance rates are going up a lot next year, so it may be better just to have surgery this year if he can fit me in and if I can get pre-certified in time.

New PCP, New Hope

I went to a new Primary Care Physician today and laid everything out for him. I explained my situation and told him that I need him to be supportive of me and the decision I made for my future regarding surgery. I explained what my last PCP did, or didn't do and he said that he will help me manage my pain until surgery and that there will be a day that surgery is done and I won't even look back, will only be looking forward to the future. I hope he is right. I am in better spirits, I am going to try to change my meds around a little. I am going off the Lyrica, because I have already gained 10-15lbs in 2 months and I going on Topamax and a steriod medicine and also a Vicodin/Tylenol mix. I will start those tomorrow. I feel hope with this doctor and think he will be by my side in all this.

PCP & Pain Mgmt. & meds.

Well, I am waiting for pre-certification with my insurance company for surgery . I have time, even though I am in pain, I cannot have surgery this year due to Chris not having any vacation days left. I am trying for the beginning of Jan. I am on Vicodin and Lyrica and I have to call every 10 days to ask for a refill of my Vicodin. My PCP has decided to cut me off, he says that he doesn't do long term pain management. So, as of right now I have 3 days left of my pain meds. I have a call into my neurosurgeons office to see if they wrote my PCP a letter explaining that I need this medicine until my surgery date. If not, I am changing PCP's. My PCP doesn't even believe these cysts cause pain. He also is not happy that I went to my own neuro. instead of the orginal one he sent me to. I have prayed and I know that what I am doing/where I am going for this surgery is the right thing to do.

Dr. Fiegenbaum called!

I finally talked to Dr. Fiegenbaum. He said that surgery is needed. The cyst is so big it is filling the entire spinal cord and compressing my nerves and eroding the tailbone (eggshell thin). He said since it is filling the whole spinal cord canal, there is nowhere for the nerves to go, except to be pinched. He said he didn't see anything else causing all my pain. My lumbar area looks fine. He said that open back surgery is needed to decompress the nerves, he will expose the tailbone area and remove the back of the tailbone to expose the cyst and decompress the cyst and suture it off so cerebral spinal fluid can't return (into the cyst) and then wrap the cyst. He will put in an absorbable plate that will replace my tailbone that he removed and scar tissue will grow over it and be absorbed in about 2 years.

He also said he will release my tethered spinal cord, which is under tension. The surgery will be about 3 hours long and I will spend about 3 days in the hospital and stay another 5 -7 days or so. I should return to light duty in 3-4 weeks. He said there is a 5-10% risk of problems, and no guarantees. I told him I would like to go forward with surgery. Now, to get surgery scheduled.

Who is this Murphy, and why did he have this law?

So yesterday was my daughter, Taylor's, 7th birthday. Normally, I am at home all day, every day, unless it is grocery shopping day (a couple times a month). I decided to go have lunch with Taylor since it was her birthday. Wouldn't ya know, Dr. Fiegenbaum called right after I left the house. I called him back about 45 min. later and I left a message that I returned his call. Here it is Friday and still no call. I called him again, and the office staff told me that he wasn't in today. I will have to wait until Monday to call him back. This is the phone call to go over my 2nd MRI with him. Hopefully on Monday I will learn if surgery is an option for me, or what can be done for me.

Another post from a forumn I belong to - this is the type of cyst Dr. F says I have

Hi cysters!! I have been on and off this site for over a year. I have gotten to know a lot of you and your struggles as they were struggles of my own. I was diganosed with a tarlov cyst in 9/07. I have lived with the pain and the bladder dysfunction and bowel dysfunction and numbness and weakness in the back of my left leg and foot. I have used crutches when I had to go somewhere but couldnt make my leg move. I have had to leave my job due to the pain and lack of performance of my own body. I have cried, I have whined, I have thrown things in anger, and I have even thought about the worst and most selfish act a person can commit, suicide.
> > Now I am here 5 days post-op in kansas city, where many of you have come looking for salvation and compassion. I have found it!
> > I had surgery on Tues March 3, 2009 at 10:39am with Dr. Frank Feigenbaum and his nurse Debbie West, RN at the research hospital in kansas city, MO. My surgery turned out a little different though, and I hope that that outcome wont hurt my standing in this group.
> > My surgery was finished in only 2 and a half hours instead of the three to four that they predicted. This was because they found instead of a typical tarlov cyst with the nerve through the middle they found a cousin to the tarlov called a "giant sacral meningeal diverticulum with spinal cord tethering". The difference is instead of the nerve running through the middle, it is the actual spinal cord. If you have a tarlov for many years, it can start to effect the spinal cord directly, but mainly it rubs on the bone and the nerve that is affected in the cyst causing the pain and the nerve issues. With the cousin (GSMD) it is directly dealing with the spinal cord already. It does come in contact with nerves also and does rub on them and the bone of that vertebrae. There really isnt a good way to tell the difference while diagnosing. But it is the exact same symptoms and usually the same outcome I am told by Dr. F. It unlike the TC is congenital so I had this from birth. But like the TC I probably activated it by some injury of some sort which has happened to a lot of you.
> > In the surgery he basically tied off the cyst and pulled out the spinal cord so they couldnt interact anymore, hopefully releaving the pain and nerve symptoms. So like the TC surgery he collapsed the cyst on itself. Unlike the TC surgery I didnt need the reabsorbable plate. Other than that recovery should be about the same the scar is the same and the relief of the symptoms should be the same. So I dont know if this relates enough to you? Or if people who have already had the surgery can relate to the post-op well? GSMD are very rare. Dr. F had operated on one before in his lifetime and didnt know what it was at that time. Later he researched it and only found 2 other cases in the world reported on and they were both in non-english text. So I'm not saying this could happen to you, but it happened to me! He did write an article on this but I've only been able to find it for money in its full form so far. When I go back for my follow-up I will ask him if he gives copies away to patients.
> > I arrived in kansas city on sunday. Had my pre-op appt with him on monday. Nothing big we just chatted and I updated my symptoms and he looked at my MRI again. Then tuesday was the big day! I arrived at 9am and registration took FOREVER! So Dr. F was waiting on me when I was taken back to be prepared. I chatted for a second with him then changed into my gown and got my IV. I met with the anesthesiologist and told him any probs with general I've had before. Then my mom and husband came back to give me a quick kiss and I was off!
> > I did wake up in quite a bit of pain, but was very well taken care of. Everyone I talked to said this surgery is kinda the worst when it comes to pain but they are prepared for that. I spent tuesday, wednesday, thursday, and half of friday in the hospital. Friday was the first day they would consider letting me go to the hotel (I live in detroit) but I was definatly up for it! So now Ive been in the hotel since friday afternoon. My mom went home so I have my very own bed to recover on. Right now is the first day I walked down to the lobby to get online. And last night was the first night I took a shower. You dont need your insicion covered after you leave the hospital and I thought my pants would bother the incision but has not at all. They want you able to walk a mile in a month. We'll see about that. Hehe
> > My bladder leakage has completly stopped as far as I can tell, and I was able to have a bowel movement on saturday! I would usually have so many problems with that that I would go two weeks before I would have to do a colon cleanse to even go once or twice then start the whole process over again. I had a slight numbness in my left big toe and under my foot but it is slowly coming back. I dont limp anymore like I used to. I think things are going really well. Better than expected. I have my follow up on wednesday this week and then will be officially released to fly home on thursday! I still have 8 weeks or so before life will start getting back to normal but I'm looking forward to it!!!
> > I hope any of this info or babbling helped anyone feel more at ease with the surgery or any part of this process. If anyone has questions please feel free to email me anytime. I feel for all of you and I hope that those of you who havent taken that leap of surgery for any reason do so very soon! Dr. Frank Feigenbaum is such a great and smart man. I trusted him with my life and I believe he gave it back to me. I wish you all the best!
> >
> > Lavonne :)

Results of Sacral MRI (2nd MRI) & xrays

I finally got the radiologist' s report today on my sacral MRI. This sacral MRI says that it "reveals the presence of a 5.9 x 4.2 x 1.4 cm cyst within the sacrum. The inferior aspect of the sacrum is expanded by this cyst. Sacral nerve roots are not visualized within the cyst. The cephalad margin of the cyst extends to approx. S1. The cyst does not appear to extend through the sacral foramina.. The lesion is well defined. There is no evidence of abnormal enhancement. There is expansion of the sacrum, but there is no destruction of the sacrum. Everything else appears normal." The opinion is "A cyst is identified within the sacrum. The differential diagnosis includes perineural cyst, intradural or extradural arachnoid cyst."

The xrays on the lumbar spine says :AP, lateral, oblique, flexion/extension lateral and cone laterial views lumbosacral spine show no disc space narrowing, fracture or other defect. Opinion :"Negative"

I don't know understand completely what it all means, but I do know that I have a cyst on or in my spinal cord that is affecting the nerves by pressing on them. I sent all this information to my neurosurgeon in Kansas City, MO and I will now wait for his opinion on my 2nd MRI.

In the meantime, my pain is always present and I go through bouts of depression dealing with this. I try to be as normal as I can be, but I am having trouble getting the meds. I need to help with the pain in a timely manner. I may start my search for a new PCP soon.

Sacral MRI & flexition/extension xrays completed

I went to St. Anthony's and got my sacral MRI with and without contrast and my xrays done today. I got the CD and mailed to Dr. F. today, so now I wait some more. I will get the radiologist report in the next few days, so I will report the findings.

MRI & Xrays

Well, I have my MRI & xrays scheduled for the morning at St. Anthony's. They are going to do a pelvic MRI with attn. on the sacrum (with and without contrast)and flexation and extension xrays. I am so glad things are finally moving forward, as I feel as my life has been put on pause since May. My pain is pretty great lately, we had a party at our house on Saturday and I am still recovering from that, Sun and Mon were pretty bad. I stepped up my vicodin to every 5 hours, but it is making me nauseated. I will post more once I get results of new MRI.

I hate waiting

This waiting business is getting old. So, as you read from my last post, Dr. Feigenbaum ordered me to get a sacral MRI and flex/extension xrays. I have been on the phone with my Primary Care Physician on and off for 2 weeks now and they still haven't ordered the tests. At one point they told me that my doctor wanted to talk to Dr. Feigenbaum, so I made sure each doctor had each other's phone numbers and even told them the day that Dr. F. wasn't in surgery, so they could speak. I called today and it is still not set up. I am debating on switching PCP's, because the office staff at the one I go to is very inadequate. Some times when I call, they forward me 4 times before I get to the person that originally answered the call. They say they will call me back and they never do.

What stinks is that it will still be a while before I get the results of these tests and then I have to forward them to Dr. F., who is so busy, it will probably take another 6 weeks before he reviews them. I have heard from my message boards that Dr. F. is thinking about not accepting any new patients until he gets a handle on the patients he has. (Luckily this was the same day that Dr. F. called me). I am still in great pain every minute of every day, I am taking my meds, they help somewhat, this disease is not fun. I pray that no one I know ever gets it. I have met so many people through this disease and for that I am grateful, I don't know where I would be without the support that I receive from others that are suffering with TCs. So, I will continue to wait....

Dr. Fiegenbaum called!!!

Just when I thought he'd never call, he calls. Dr. Feigenbaum called me at 5:00 today. He said that yes, I do have a very large cyst that fills up the spinal canal. The spinal cord only has enough room for nerves, so the cyst is pushing on my nerves and eroding bone. He says that he can't completely say that my pain is from the cyst. He is ordering me to get flexition (sp?) and extention x-rays of my lumbar spine and a Sacral MRI. He says that I don't have a "true" tarlov cyst, but a cousin to the tarlov, called a meninegeal diverticulum. He also said that I have degenerative changes in my L5 - S1, but there doesn't look like any nerves are being pinched. He also said there is a little tethering of the spinal cord and my spinal cord ends at L1 or L2, which is shorter than most.

So, hopefully I will get my MRI & x-rays done soon, so I can send them to him to review and discuss.

5 Weeks

Well, it's been 5 full weeks since I sent my MRI to Dr. Fiegenbaum. He has been out of the office for about 2 of these weeks. I am trying to be patient, as I realize Dr. Fiegenbaum is a very busy man, not only does he do these TC consultations for free, he operates on things besides Tarlov Cysts as well, and he has a family. I continue to take my meds, although, they make me nauseated daily, they take away some of the pain. If I forget to take them, I definitely can tell. Taylor started 1st grade yesterday and is so excited, I am glad that she is kept busy during the day in a constructive way, as I can no longer play with the girls like I used to. Taylor asks me if I will ever be able to play with them again. I try to do board games, but can't usually sit that long. We go outside and I watch the girls swim, although it has been so cool this summer, they haven't got to swim as much as they would have liked. Hopefully next summer will a brighter one for all of us.

Dr. F. is in surgery on Tuesdays and Thursdays, so I await his call. Maybe today will be the day.

P.S. Dr. Long from Johns Hopkins is out for surgery of his own, I was told that he doesn't want anyone sending films until October and if you live anywhere other than the West Coast, he wants you to go to him for a consultation, instead of over the phone. So for now, Dr. F. is the route I am going.

Good TC description

I wanted to share the following from a gentleman (who had surgery a while back). He is on a TC message board that I belong to. This is a very good description of Tarlov Cysts & surgery. He had a good outcome. I am still waiting on Dr. F. to call, I believe he is back in the office this week. I will post as soon as I hear from him.

"It is good to hear from you and regarding the cysts you referred to - they were emptied of spinal fluid and the small orifice that the spinal fluid was leaking through into each cyst from my spine were plugged with thin layers of fat and tissue glue. Layer upon layer which formed a lamination that is very strong and stops the spinal fluid from filling the sheath that protects the nerve. Each nerve has a protective sheath that sticks tightly to the nerve except when for some reason it loosens on the nerve near the spine the spinal fluid then flows under the sheath around the nerve and forms a fluid filled balloon or sack outside the spine around the nerve. When enough fluid escapes the spine and the sheath is bulged larger and larger they are called Tarlov Cysts. The pressure from the spinal fluid trapped inside the nerve sheath becomes so great that it begins to crush the nerve which as we know from experience causes increasing pain and then loss of bodily functions that are controlled by that particular nerve.The goal of the surgeons is to drain the fluid sacks called Tarlov Cysts and then plug the leaking entrance of the spinal fluid which repeatedly accumulates as we pick up heavy objects or become very stressed. The nerve sheath itself has small very important nerves embedded in their thin membranes which the Neurosurgeons have to be extremely careful when they make their incision to drain the fluid and then insert the the thin layers of fat taken from the incision area near our skin. It is my view that those contemplating intervention must be very careful to choose a neurosurgeon with years of experience and a good success rate. It has been my observation and experience that we look for a surgeon that practices very close to our home for our convenience but that should not be the top priority in my view. However each of us has to do our own research as you are doing and weigh all the information and make our decision based on what you believe is proper for you since the choice you make and the result you obtain is what you will ultimately have to live with. I appreciate your patients and hope this has been helpful. May the Lord grant you grace, wisdom, good judgment, and resolution. Blessings Best RegardsSincerly.... ......... ......... ....Walt "

Still waiting...

I'm still waiting on Dr. Fiegenbaum to call, but I decided to call his office today and found out he is out for the rest of the week and his assistant said he will be playing catch up next week, so it may be a few weeks until I hear from him. It seems like time stands still when you are waiting for an important phone call.

From what I understand from others he has treated that I am in contact with, he may want more diagnostic tests done before he makes a determination as to if my symptoms warrant surgery or not. I will continue to take my meds and wait it out. If anyone knows of a good pain management doctor in the St. Louis area, please let me know his name, I am interested.

The Start of My Journey

I decided to create this blog to update all my family and friends on my diagnosis of Tarlov Cysts Disease, a rare disease that affects the nerves at the base of the spine, so I will start from the beginning.

In May, 2009, Chris and I were building a bridge over a creek in our back yard. I lifted up a 6x6x12 piece of lumber and thought my body was going to collapse on me. I started having lower back pain. I decided to go to a Chiropractor to see if he could help. I saw him all of June, but did not find any relief. I went to my PCP, whom ordered xrays and exercises. The xrays came back fine and the exercises, I couldn't do past 3-4 days. After the 4th of July party at Frank's, my back was really hurting, so I slept with a heating pad that night. Sunday morning I woke up with extreme lower back pain. I could barely walk, sit, stand, bend down, everything hurt from waist down. I decided to try to go to church and had felt like I was going to collapse 5 times within an hour. I knew something was definitely wrong.

On July 6th, I called my PCP and told him my problems, I demanded to get an MRI. I am sure glad I got one, the MRI findings were Large Tarlov Cyst measuring 5.3cm x 1.5cm x 4.0cm on the S1 - S3, with bone erosion. Also, disc degeneration on L5. I saw a neurosurgeon the next week, whom said that "Although the cyst is quite big, and it should probably come out, it is NOT causing your pain. He said no Neurosurgeon would touch a cyst like that" He couldn't tell me what was causing my pain, but believed it was ligament pain and ordered an injection, which I declined. I was/am convinced it is this cyst.

I started researching everything I could find out on-line and saw that some of the people that have this pain and went to neurosurgeons were told the same thing. I'm in constant pain in the lower back, I cannot bend down to pick things up, even Lauren. I have shooting pains in my legs on occassion, as well as, headaches, pinching feeling in my buttocks, pain in my hips. I have lower back pain when I cough or sneeze. My feet tingle sometimes and I have weird random shooting pains. I am taking vicodin for the pain. This cyst is growing either out of a nerve or with nerves running through it and as it is large, it is pressing on other nerves. This cyst is filled with cerebral spinal fluid, which runs from the brain down the dural tube.

After doing much research, I came across a Dr. Frank Feigenbaum out of Kansas City, MO, he is one of the few doctors in the U.S. that treat these cysts. The outcomes aren't 100%, but I have talked to people that are back to 85% after 10 months. This has given me hope. I have had people on several forums voice their opinion either pro-surgery or anti-surgery, it is so confusing. I have talked to a friend of mine, Shawn, who has helped me tremendously get in touch with people from NORD (National Organization of Rare Disorders), the President of the Tarlov Cyst Disease Foundation and also get opinions from trusted neurosurgeons/individuals in his organization. Thank You, Shawn, you are a blessing! I have sent my MRI films to Dr. F. and am waiting on him to call me for consultation. There is another neurosurgeon out of John's Hopkins by the name of Dr. Long, that I am going to send my films to. I decided not to pursue seeking opinions from other neurosurgeons, because of the rareity of this disease, they do not know much about them. The one at Barnes said that he has "heard of them, they interest him and would like to see my films." This didn't give me the hope that Dr. F., who has done well over 100 of these tarlov cysts surgeries, does.

I have learned a lot in the last few weeks, I have good days and bad days, if I try to do anything "normal", I pay for it, so I mainly lay around, sit until I can't, stand until I can't. These cysts are just starting to be researched, according to the foundation, they received their first grant this past January. 4-5% of the population have these cysts, but only 1% out of those are symptomatic. I was told by the foundation president that there are 3000 tc patients (I don't know if that is in the US or worldwide). My last few days have been good, I get to the afternoon and am exhausted. I don't get to do too much with the girls, but I think they are starting to understand. When I have my bad days, flare-ups, I can barely walk or do anything without being in extreme pain. I think bending, picking up things, aggravates my cyst and causes the flare-ups.

If you wish to learn more, a good website is http://www.tarlovcystfoundation.org/

So now I am waiting on doctors....I will update as I get more information/news.

Thank you for all the calls/emails/well-wishes/cards/dinners. I think this is going to be a long road ahead of me and pray that all the decisions I make are the correct ones.