Ugh... more drugs last night. These storms are beyond annoying at this point :(
Last night, I showed my husband the blog and explained that I am going to be more active on the site because I believe this is an ingredient in the recipe of my happiness. He brought up a good question: What would someone reading this think about the success or failure of the surgery? So, I feel the need to summarize my health since having the Endoscopic Decompression at the Cleveland Clinic, June 2008.
I still have headaches (obviously) but not everyday like before surgery. Change in barometric pressure cause my headaches now. Prescription migraine medicine (Axert) takes care of them but are very expensive. I also get pain in my spine along with the migraines. A little Ibuprofen takes care of the ache.
My left leg, below the knee, still has peripheral neuropathy. Mostly my foot goes all tingly. Sometimes the tingle is so intense that I cannot think of anything else. Another interesting development is that my foot muscles spasm causing my toes to curl painfully under and get stuck. It feels as intense as a charlie horse in my foot. Maybe that is what it is... not sure but hurts like hell.
The compression of my brain stem and lack of CSF flow caused injury to my Autonomic Nervous System (ANS) called Dysautonomia (diagnosed at the Vanderbilt Clinic). The Dysautonomia comes in many forms; for me it presents as Postural Orthostatic Tachycardia Syndrome (POTS), Sjogrens (dryness of the mucus membranes), slow motility, and Raynaud's Syndrome (circulation issues). There is also argument that Autoimmune Diseases can result from Dysautonomia. I have two; Hashimoto's Thyroiditis (hypothyroidism) and PCOS (Polycystic Ovarian Syndrome). I also have some sort of issue with my muscles but have not had a diagnosis for that yet. They tense up and spasm causing anything from annoyances to crippling pain. My massage therapist has told me numerous times that I am the worst she has ever seen. Awesome.
Medications: T3T4 compound, Pindolol, Prevacid, Miralax, Spironolactone, Evoxac, and Flexeril. For my headaches, I take Axert. About a year ago, I started to drink green tea at least once a night. I have found I no longer get sick. Even if I start to feel a cold coming on, it never develops into full-bore sickness. I believe this is directly related to my intake of the tea.
The worst symptom I deal with, by far, is the fatigue. I am so tired of being tired. I have found that regular daily exercise does combat this. When my doctor first started suggesting this, I wanted to punch him in the face! Didn't he understand how flipping tired I was? How in the heck was I going to muster the strength to exercise when I could hardly muster the strength to get out of bed in the morning? Well, I reluctantly admit he was right. I cannot do much; not nearly the workout a normal person can tolerate. Twenty minutes on the elliptical is about all I can take when it comes to cardio and it took me about three months to work up to that. Since moving out of our house, I haven't been able to exercise and I am suffering for it. The elliptical is in storage. I now do some leg lifts and planks, but it is not cardio and therefore not helping at all with the fatigue. I just want to sleep all the time. Hopefully, I will have my new home soon. We have a workout room in the basement.
I guess what I want folks to take away from this blog is that Endoscopic Decompression probably saved my life. Sure, I have all of these problems, but they are just leftovers of a very serious skeletal deformity. The surgery corrected mother nature's mistake. It stopped the progression and even reversed some of the affects. With the combination of the surgery and correct diagnoses by informed doctors, I now want to live. My life is good and I am happy. Not every day is filled with pain. Actually, the majority of my days are pain free. I cannot ask for anything more.
Thursday, July 28, 2011
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4 comments:
I am amazed at your story. I underwent decompression surgery July 26th of last year. I can relate to so much of what you write, especially the fatigue and pressure change headaches!
I try to stay positive, but it's hard. I blogged my experience as well. i am not experiencing the level of success that i thought i wanted, but i am changing my idea of success.
Thank you for sharing, and please continue! it's a lonely road.
Hi Amy!
It is a lonely road. It is similar to having a mental illness... most everything I experience is internal, meaning folks cannot see my disabilities, so it is hard for them to believe let alone understand.
I, too, have redefined success. I just try not to think about Chiari and instead think about all the things that I am grateful for; life could be so much worse. I am not big on whining, although I have been known on rare occasions to drown in self-pity. In the end, it does not serve me well. It is a waste of energy and time. Mostly, when I do feel down it is my frustration at my limitations and my lack of good medical treatment which allowed the Chiari to wreak such havoc on my ANS. But, I try to remember that everybody has a predestined path and I am just traveling along my destiny. There is always a reason to the unreasonable. I just need to believe and continue.
Thank you for your words of encouragement. I would love to read your blog. Could you send me a link? What kind of decompression did you have?
Glad to meet another friend along this bumpy road :)
Lori
Post 1 of 3: I too had the Chiari malformation and had the surgery on Jan. 5th 2011. This was one of the best decisions I ever made. I am a single mother of three and had many symptoms within the months to years prior to the surgery. i just wasn't feeling the up to being the mother I needed to be for my children.
My experience,, I had surgery at John Hopkins in Baltimore Maryland with surgeon Jon Weingart behind the scaple and his excellent team of nuerosurgeons. I was told surgery would take 5-7 hours and I would be in the hospital at least 3 days - 7 days. I was told it would take at least 2 months for me to even start beginning to feel like myself again and the symptoms will start to tapor off around that time. Before I met Dr. Weingart I was told that the symptoms will return and I will probably have to have this surgery every 5 years or so. But going in I was ok with that, if it meant I could regain at least a partial piece of my normal life back for my kids sake, I was willing to make that sacrifice.
However on Jan. 5th, 2011 at 7:00 a.m. EST, my whole life changed all over again and this time for the better. Surgery was only 2 hours instead of 5-7. Surgery was on a Wednesday morning, on Thursday the surgeon came to check on me and stated I was doing remarkably well that I might get to go home on Friday. Friday morning they were coming into my room and telling me they were absolutely shocked but I was able to be released that day because of my progress. So I went home, the next day (Saturday) I had made arrangements for my grandmother to take my kids to a birthday party at the skating ring so she did. I was sitting at home in the recliner and looked at my then boyfriend and said "Look we have been sitting in the hotel room, the hospital room and the car (3-4 hour drive to the hospital from where I live) coped up. Let's go to the birthday party and suprise the kids!" (3 days after brain surgery)so we did just that. I felt like a new person.
I was told not drive until after my next dr. appointment. Well, that didn't happen. i called the dr. office and he said when I started getting the muscles in my neck to work again so I could turn my head and when I was off the pain meds. I could start driving a lil at a time. Ok, so I was driving in 4 days. On Sunday (4 days after brain surgery) I dropped all pain meds. I felt great and believe it or not my neck didn't feel as stiff after I quit the meds. (I still do not take ANY meds at this point)
post 2 of 2: I was supposed to go back to the dr. at around four weeks for a review and he would give me another note to be off work a lil while longer bcuz my note was scheduled to end at 8 weeks for STD. So far I had only used to weeks, I worked up until the evening before the surgery. I called and they gave me an appointment for at around 3 weeks for a check-up. I drove to Baltimore and took a friend with me just for the company and we going around doing some photo shoots along the way. My appointment was actually 2 weeks and 6 days post-op (Jan 25th). When we got there the dr. was utterly amazed at how well I had healed and was getting along. I really shocked him when I told him I wanted to go back to work the day after the next (jan. 27th). He looked at me and laughed and said "what you aren't ready to go back tomorrow, you must think that that is too soon?" We laughed and I said I just want one more day to play before going back to work. He was amazed and in shock when he found out I was relly serious bcuz up until this point he thought I was joking. So sure enough he gave a note to return to work in two days (3 weeks and 1 day post-op). As we were finishing up I turned and looked at him and said "my daughter is playing softball this year and needs a coach...is that ok with you" He turned and said "Good luck with your season and tell your daughter good luck as well."
In June (5 months post-op) I started taking EMT classes to run the local Rescue Squad and enjoy every minute of it! My son plays football, my girls have majorettes and gymnastics, I work full time and have absolutely have no free time. But i love every minute of it and owe it all to the surgery and the correct nuerosurgeon. He specializes in Chiari and has never had a patient that he has had to repeat the surgery for a repeated episode.
I guess my point is that all the surgeries and the hopes of each are different. I have always found myself to be a lil different when it comes to things like this and blame that to my quick healing and speedy progress along with lots of prayers, love and support. I know you have existing symptoms even post-op but please I just beg of everybody to never give up hope. Miracles do happen and I am proof of that, to this day i have not had any pre-op surgery symtoms return. Its just all a matter of finding the correct surgical team and believing that anything is possible. I feel for you and hope only the best, keep your head up and look for the positive in everything. (If you have a headache or other symptom, at least you get to spend time with your family). That's the way I look at it. Even if I would have had post-op symptoms, that surgeon at John Hopkins gave me another chance at life and another chance to be a better mother to those children that I felt like I neglected when I was sick.
Love Life, Love those in your Life, Laugh about the silly things and the stupid things, take nothing for granted and Cherish every moment of every day. God Bless you and all Chiari patients.
Please feel free to keep me updated with all progress, surgeries, etc. s_brown0003@verizon.net.
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