Just another update

Well it looks like I will have to have a shunt. The diamox is working in full force with all its lovely side affects. We are going to call tomorrow to let Dr. Henderson know and see if he will even do the surgery. I'm not sure I'm for it if he wont do it. I guess it will depend. I have lost every ounce of trust I have in Doctors except maybe three. I am hoping for the end of June so that I can enjoy summer some and have time to recover before I start college in August.

I am swollen beyond belief that I'm down to about one pair of shoes that fit comfortably. :-( I want to be back in my normal body that I had three years ago....

I also have a rib out of place on the left side and possibly one on the right. No orthopedic will see me within distance. They either all say they don't do ribs or they don't handle EDS patients. I have a feeling this will only be the beginning of that when trying to find doctors. I'm so complex. Anyway, I went to massage therapy to help relax the muscles around it to see if I could get it back in place, but I couldn't. We are going to try to make an appointment with Physical Therapy this week as well.

We went shopping today for prom shoes and a graduation dress. When I tried on the dress is when I think my right rib came out of place. Any little activity will do it. I barely made it through that whole process. I did get a horrible headache and what medicine I normally take did not work for the first time ever. I did manage to finish. I just hope I don't pay for it tomorrow. I kind of got use to being able to do what I want and having a good stamina the month that I felt wonderful. I almost forgot how tough it was! Trust me I did seem to remember quickly though.

I know that my memory is not as good as it was too and I'm tired all the time again. Its so hard to be like this again. It makes me sad as I know the rest of my family. I am back down to one small activity a day. After that activity, if I even do it, I just lay in bed. Not what I expected my senior year to be like or even my sophomore or junior year. Never take life for granted even the small things.

The end of the year is quickly approaching. Lots going on...... Prom, Graduation, graduation parties, sisters confirmation and party, both sisters dance recitals, and a rush to finish assignments. I hope I make it through all of it.

I am hoping to make it to preschool at least one day this week for some fun.

Thank you for all the prayers and support. It means so much. :)

Sick again?

The headache, nausea, and weakness have put me in bed for three days now. I was/am very sick. I have not felt this bad since my low pressure headache back in February. Well this time Dr. Henderson believes it is a high pressure headache. If you remember back when I had the tethered cord surgery, they did a lumbar puncture and my pressure was 41. The high end of normal pressure is 15 so I am very far from that. I was not having symptoms at the time. Unfortunately, the symptoms have come on me very rapidly. I was fine for weeks and was feeling better than ever. Although I am very grateful of those days, it does feel like such a tease. Dr. Henderson did start me back on Diamox for the pressure. This medicine is HORRID to take. It has horrible side affects that can sometimes seem worse than the original problem. If this medicine works and helps my symptoms, then we know it is definitely high pressure and I have to consider a shunt. :( I really don't even like talking about the dreaded "S" word. They are easily infected and may need lots of revisions. I have always know this was a possibility. I was originally diagnosed with this way back three years ago at Baptist Hospital, then at the Mayo Clinic they said I was misdiagnosed and did not have inter cranial hypertension. I am going to take the diamox and see what happens. This medicine works very quickly and I should now within a few days. Please pray that I will know what the right decision is to do about the shunt. Thank you!

On another note I am going to my Senior Prom. I figured that since I missed out on everything else my whole high school career that I better go and have fun at least one night. There are 32 days of school left. Filling out graduation announcements and invitations makes graduation seem so real. It has flown by, even not being there. Please also pray that I feel great for both of these days. They are both huge steps from where I started. :)

Just an Update

Not much to update on. I have been feeling GREAT! Spring Break was last week. We went to Florida. It was the first vacation that I was  able to do everything....NO NAP and NO PAIN MEDICINE! It was a great feeling. Now I'm ready to GRADUATE and for SUMMER!!!!!! Only 8 more weeks left. :))

I leave for Maryland again on Tuesday. I have a urologist appointment to check out my kidney stones as well as a 6 week follow up with Dr. Henderson. I don't even feel like I had surgery. I have no pain at all from it. I am having an issue with my rib that he did the rib graph on from my fusion surgery. Hopefully its nothing and all will go well and no surprise hospital stays this time. :)

 The little white dot in my kidney is one of the stones.

...and here is a picture of the hardware from my fusion surgery. 

I will update again when I get back. Have a great week.  

18 and feeling better than ever

Not much to update on. I turned 18 on Monday the 26th and I am 5 weeks out of surgery today. I am ready to graduate in less than 3 months. I WILL get to walk with my class. :-)

I am feeling better than ever in three years.

I still do have the kidney stones, but I will see the doctor next week to see what to do. They do hurt, but the pain is minimal compared to what I have been through.

I am started having rib pain about a week ago again in the same area where they did the rib graph. That pain completely went away a few weeks after my fusion surgery in December, but suddenly came back. It hurts! My primary doctor thinks its inflamed from allergy's and a sinus infection. I am on antibiotic and if it does not help, I will go back for the next option.

Thanks for the support.

Feeling GREAT!

First off THANK YOU to everyone who donated, helped or came to the spaghetti dinner. It was a HUGE success and it was great to see everyone! I posted some pictures from the day below.

I am two weeks out of surgery. This Thursday will make three. I am taking NO PAIN MEDICINE for the first time in three years. Yes, I do have a very high pain tolerance, but I can truly tell that I am pain free. I am feeling better than ever. The past three years have physically and emotionally drained me in so many different ways. I am finally back to my old self. I do know that Chiari and EDS are always going to be a part of me and sometimes will be more difficult than others. It is just who I am and I am going to have the make the best of it. I am not tired all the time and I can make it through the whole day without a nap. For once I actually feel like doing stuff with my family and friends. It is the best feeling in the world. I can not wait to graduate and get a fresh start. I finally feel like I am reaching the end of the tunnel and seeing a bright future.

Thank you for all your thoughts and prayers. They mean more to me than you will ever know.

What a February

I am so glad to say that the month of February is OVER! It was not a good month at all for me. So with that being said, I have not been able to update because I have been so sick and in and out of the hospital and doctors offices. I am going to go back and try and piece it together the best I can.

February 14th was the two month marker from my last surgery. We left to go to Bethesda that day so we could see Dr. Henderson for my 6 week post op visit on Friday of that week as well as a Urology appt. that I had on Thursday.

I had my Urology appt. first. They did a urodynamics test to see if I have neurogenic bladder. It was a HORRIBLE and PAINFUL test. The test came back positive for neurogenic bladder. There was no denying it. There sat the paper on Dr. Murdock`s desk that said it. It was so bad....It was off the chart. I did not only find out that I had neurogenic bladder, but that I have MULTIPLE kidney stones in my right kidney. The doctor says both of these things are very normal for Ehlers Danlos people. He prescribed medicine for both. Now to Dr. Henderson on Friday.

We sat in the waiting room to see Dr. Henderson for forever as usual (he was 2 hours behind), but trust me it is so worth it! We are called back. I tell him I'm doing good, but a few things had been bothering me.....my hardware was protruding out, my back and I was starting to get random headaches behind my eyes.
Now in a perfect world he would have said "Lets fix the hardware....No big deal and Oh yeah, I can do tetherd cord surgery and you will be set for good." but, it so did not happen that way to say the least. He can not fix my hardware due to the fact that my bones have not fused completely and it would mess the graphed up, so the hardware still remains. He also was not sure I had tethered cord because it was not showing up on the MRI and X-Ray that I had. So he would not do surgery anytime soon, until he was positive that was the problem. I do appreciate that he is not just going to do surgery unnecessary, but when you are desperate and feel horrible its not what you want to hear. If I did have it, it was considered a colt which means its there, but not showing up. So since I was having pressure headaches behind my eyes he thought that I could have Inter cranial Hypertension. He said it can cause back problems too. So unwillingly I went back on the horrid drug of diamox. I was SO upset. I knew I had tethered cord, but I could not challenge him about it because it was not showing up on the scans. :( I was not a very happy person.

All of that weekend I stayed on my uncles couch complaining I did not feel good. I did not want to do anything. We set for home on that following Monday and I made it as far as Alexandria, Virgina from Chevy Chase, Maryland. I got this god awful headache and as much as I did not want to admit it was behind my eyes and it felt as if fire crackers were exploding in my head. I immediately started sobbing and vomiting. (That is not like me at all. I usually tough it out and don't complain, because if I did not all I do would complain.) We headed to the ER to meet Dr. Henderson.

The ER was a horrific experience and I refuse to ever go back. I swear everyone with a hang nail was in there. It was ridiculous. Not an empty seat in the room and I could barley sit up. After hours of waiting in the waiting room we finally got called back. I was losing it. I was given an IV which took 8 sticks to get and I mean digging around to get. I finally said you have to find someone else. I'm going to black out. My veins are completely trashed from everything throughout the years. Dr. Henderson came in and ordered tons of stuff (I'm not even quite sure what all because by that point I was on some strong medicine). He did admit me though. Again, I was not happy, but I was SO VERY VERY sick.
After being admitted and finally getting a room at 2:30am, neither mom and I were very happy people. By the second day of being there he finally thought I needed tethered cord surgery. I WAS THRILLED! Not that I wanted surgery, but I just knew that's what I had and I wanted to be better and out of there. So tethered cord surgery got scheduled for Thursday. I was going crazy. I wont deny it though, Mom and I did get some good laughs while being in there.

That next day leading up to surgery seemed to last forever. Every thought of 'what if' came to mind. It was finally surgery day. It was scheduled to start at 3:30....yeah right! ha Anyway, I got prepared and cried and then cried some more. Mom was the only one able to be at this surgery. Everyone said it was going to be the easiest surgery you will have ever had.....NOT! I was preped and finally got down to surgery holding and the IV gage was not big enough. I was freaking. I knew they were not going to be able to get another one in me, So they ordered a PICC line. Then I was freaked about that, but looking back the  best decision I ever made and will never not have one again. Surgery started at 5:30. Mom sat in the waiting room alone. Our dear friend Jean White showed up to sit with her. It was suppose to take two hours and it did but I was in recovery a while. I remember being in the operating room and in the recovery room and carrying on conversations with the nurses and doctors. Dr. Henderson went to confirm the surgery went well with my mother. He said the normal filem around your spinal column is .2, well my was 6! I go big or go home, that's all there is to it. My incision is only about 2 inches, but very deep. He also at that time told her my angle when he did fusion was the worst he had ever seen at 99 degrees. A normal angle is 150 degrees. Its a wonder I survived. PRAYER that's all I can say about that!  While in surgery he also did a lumbar puncture to check my pressure.....its a part of the surgery. My pressure was dangerously high. It was 41 and the high end of a normal pressure is 15. Again, I go big! He removed spinal fluid to make the pressure normal. I was in very little pain and had to lay completely flat for 3 days. That is harder than it seems. I was basically spoon feed. I was discharged on Monday even though I had a headache. Dr. Henderson said drink some coffee you will be fine. I did just that and I was okay.

We left and headed for my uncles house in Chevy Chase about 30 min. away. Not even 5 minutes of being in the car I got that god awful headache again that put me in the hospital the first time, but 10 times worse. I was trying so hard to hold it in. I was NOT going to that ER. I was denying it, but I could not take it any longer. We showed up at Jeans house begging her to take us in. I could not of made it to Chevy Chase.

I literally layed flat on her couch in excruciating pain crying, screaming, vomiting, and holding my head. It took everything I had to get to the bathroom and once I was there I had to lay on the floor before I could leave. BLESS! Mom called Dr. H and said I refused to go back to the ER and what did he want me to do. Again, he said drink some coffee and lots of fluids and stay flat. He said its probably a low pressure headache because he reduced my pressure and then I took spinal fluid reducing medicine, so I did not have enough spinal fluid and it could last anywhere from two days to a week. I did not know what I was going to do. I so thought I was dying. Out of everything I have been though that was the worst by far. By day 3 I was better! Thank gosh, I literally thought I could have died at any second and did not know what was going to happen.

We stayed at Jeans through Wednesday and left Thursday Morning. I had a follow up with Dr. H Wednesday and believe me I was FIRED UP! That is not like me at all, but I knew I could NEVER handle that pain again, plus I did not want to have a lumbar puncture or take diamox in the first place. I was really challenging him and he was probably wishing I would shut up. I was throwing questions at him left and right and was telling him what I was and wasn't ever doing again. He just sat there and listened and took it all in. He even had his arm around me while I was ranting! I felt bad once we left and told mom I needed to text him and apologize, but she assured me by the look on his face he was trying not to laugh. I was so out of character. In saying all of that. I really do trust Dr. H and it was just a little mistake that was missed. I'm not mad at him. I was frustrated, yes, but I still love him and trust his opinion.

We made it home Thursday evening after 17 days of living a nightmare and ate dinner out as a family. So happy to be home and cant wait to see all my friends. I appreciate all the support. This was not a great experience, but I did make some amazing Chiari friends out of all this while I was up there. No one knows what it is like until they have lived it and it was nice to have people around who have. I know this was such a long post, but February was a long bad month that I don't want to meet up with again like that, but I would not have changed it......maybe just a few things!  ;)

March has already started off amazing! Next weekend is my spaghetti dinner fundraiser and a bunch of family comes in and then I will be 18 in just 24 short days!

Long Night

Last night was very long, to say the least. My back (lumbar area) and hip were KILLING ME! It felt as if I was being stabbed with a knife and there was so much pressure. I could not get comfortable to save my life. Two lortab did nothing for me. I was up until all the alarm clocks in the house were going off this morning. It is due to my tethered cord.

Today was much better. I slept most of the day, due to the fact that I got NO sleep last night. My new medicine for my cortisol level seems to be working. I have only had two doses and will take the third tonight.

I hope the rain does not kill me tonight. Please pray that it does not kill my head or any other chiarians head. The barametric pressure really bothers most of us with Chiari. Thank you!

Have a great night!