Just and Update

Just wanted to catch everyone up on the past few weeks since before Christmas since I haven’t been able to log on much. My insurance company denied my surgery at The Chiari Institute which was supposed to be the 18th of January. I have tried to find other doctors and gone back to my NL in Wilkes-Barre before the holidays but have had no success finding anyone knowledgable. My NL recommended a NS in Philadelpha at Temple and I tried to make an appoinment down there but he does not accept my insurance so I am back at square one. After 5 1/2 months waiting for SSI I was also declined and told that my disability is not severe by their standards. So, all in all 2011 hasn’t started off too great on a health front. Symptoms are getting progressively worse and much quicker. Muscle weakness and double vision, dizziness etc. is terrible. I have been avoiding driving more than ever before because I am afraid. Just about every day all day I wish that someone could just drill a hole in the back of my head to relieve the pressure. Since I recently started the Topamax the tremors in my hands have gotten better but muscle twitches in my left eye are still bad. The nerve pain is still unbearable at times. Numbness and tingling in my hands and feet and my forearms comes and goes. Balance has been a real problem lately especially trying to pick up the kids toys or reach for things that I used to be able to do without any thought like even just taking a shower! I actually have to be careful when I close my eyes to wash my hair because I get unsteady! Not all the time but enough that it really bothers me. The nausea is horrific! All day everyday in waves to the point of vomiting and dry heaving. Tingling in my scalp and face on the left side which I wonder if it is because of the blockage of flow on the right. The pain and burning in my shoulders and neck brings me to tears at times. I am just so tired. Physically, mentally and emotionally spent. Every physical ailment that I feel I can usually write off to being Chiari related and put it aside but it just gets to be too much. I am afraid to have the surgery and have it done by someone who doesn’t know what they are doing because there are so many nightmare stories out there but I know that surgery is inevitable and I want to take a shot at some relief; however fleeting it may be or it may be longer term if I am lucky. Just needed to get all of that out…

I see you are from PA. I know someone who had surgery with Dr. Rourke(sp?) at University of PA with excellent results(almost symptom free!). He lists Chiari as one of his sub specialties. Maybe they would accept your insurance?

Susan,

Thanks for checking in! Yes, I was able to find a doctor. I called my NL when I got home after the 21/2 drive and he referred me to a NS within the group. I was nervous at first because he never recommended this guy before because he does not specialize but my symptoms are progressing and I have been getting a pinching feeling at the base of my skull that chokes/gags me. The NS is an army docotor and of the doctors that my husband and I have met so far we feel the most comfortable with him. He does not specialize in Chiari (but not many docs do) but he does have have a lot of experience in spinal tumors and working in that area. He seemed very knowledgeable about Chiari and was very realistic about what to expect from surgery and wasn't trying to sell us anything like the doctors before. It was big decision but I have to do this for myself and for my family. I cannot go on like this. It just keeps getting worse. I choose not to take pain meds because I have two small children which in turn makes me miserable at times despite my best efforts not to be. I take my meds at night like the Topamax and the Baclofen. I am very nervous about the surgery. It is on the 22nd. I am worried about my symptoms getting worse but at this point I have to take the leap of faith. I cannot live my life like this on the couch in pain and not able to function normally. I will keep you all posted about surgery and let you know how I am doing. Thank you for your support! Hope you are doing well!

Susan,

My doctor didn't mention anything about paralysis but he did say that surgery was necessary at this point. My neurologist has been pretty laid back until now. He has offered research and let me go where he felt were good places to go but once the pinching started and even before that he had said that surgery was necessary but once that came into the picture he sent me right to this guy despite the fact that he is not a specialist but he trusts him. I am sorry that you are not up and running like you would like to be. That is my fear coming out of this that I may be worse or the same but I have to take the chance now. My husband will be at the hospital with me for the surgery so I will have him send you a text when I am out of surgery and in recovery and I will log back in when I am able and let everyone know how I am feeling. Thank you so much for the support. I really does mean the world!

Thanks,

Tricia

Susan,

Thanks so much! My NL already gave me Baclofen for a muscle relaxer. I forgot to answer your question from before that yes, he will be opening the dura layer and he will probably use bovine pericardium. I will keep you posted :)

Tricia

Tricia, so much of what you describe used to happen to me too before my surgery. I could not close my eyes and keep my balance. When I looked down, the road would appear to be moving like it was coming up to meet me....and....if I bent over I would black out or pass out because the brain fluid flow was being interrupted. I had a lot of numbness in my hands which went away after the surgery. Since I have had my surgery, for the most part the dizzinss, funny feeling in my head, and I can close my eyes when I was my face and still keep my balance. I also now can walk in a straight line without waddling to keep my balance. I can also step up on the sidewalk now without help. I had my surgery in Jul 2010 and each day I get a little stronger. I will sometimes have a bad day and I still will have pain; most of the time it is tolerable and I can function and do most things I need or want to. My recovery wasn't horrible. Most of my pain was in my ribs where the bone was harvested for the fusion. I'm glad I had the surgery; it as the right decision for me. I don't spend any time (well at least not much) worrying about whether the surgery will ever had to be repeated. Some people do have to have that done; but I have met and spoke with so many people who had the surgery years ago and they are still doing fine. So, I just try to concentrate on the things I can do, knowing that I have taken the action I can to make things better.....that gives me a certain sense of freedom and peace of mind, I was scared to death to have the surgery because I had been told my case was so complicated the risk of paralysis was too great. I had resolved myself to just let God take care of it when I was involved in a horrible three car crash which made the surgery no longer an option. I had been continuinally for a few years getting worse where I had trouble swallowing and breathing. I still though put it off for awhile. But, nothing was as horrible as I read about it or as horrible as I could have imagined it to be. When I woke up the morning after the surgery, for the first time in my life nothing hurt; even though I was wide awake I guess the fairy dust was working well. My recovery went well, I didn't take a lot of pain medication. I slept for about the first five weeks - most of it. I won't lead you astray; there was some pain for me too; but the worst part of it was over after about three weeks. I do understand the scared; when they told me they were going to take my bones apart and lift my head up higher, I was like "yikes". But, I eventually knew when it was time for me to the surgery.I felt very comfortable with my neurosurgeon; he does these surgeries on a regular basis for people all over the work and he's a very compassionate man. In addition to the surgeries, he does research at Georgetown University Hospital and is President of the Chiari Syringomelia Foundation Chapter in Washington DC. Different doctors use different approaches to this surgery. The first one I saw at George Washinton University Hospital suggested doing it through my mouth - he decided I was too risky a patient, but I wasn't going to let him do that anyway. My doctor did not open the covering around the brain - there's differing opinions on the need to do that - and that elimates the danger of brain fluid leakage. Also, he doesn't put stiches on the outside; they are all on the inside - and I liked that! With the method he used, even though my bones are fused, I still can have all my up and down movement of my head and movement to the right and some to the left. Good luck as you make the decision. I know the made the right decision to have it do, but it's so personal to everyone as is the recovery. You are in my prayers as you make this difficult decision.

Hugs

Shirley

Guess what - my neurosurgeon doesn't take most insurance either and he has an excellent success rate and is very busy. He does the Chiari surgeries just about every week for people from all over the world. What saved me is that I was old enough that I have medicare in addition to my health insurance. He does take that and they forward the bills to Blue Crosss after they pay. When I first started going there, I did have to pay cash until I became eligible for the medicare. Fortunately that was only a few visits. His office is in a very upscale part of town, so my guess is that he didn't have to. He is such a compassionate doctor though that I would imagine that he would work with someone who can't afford to pay or try to get them in a research program. He is now doing surgeries at a lesser known hospital so he can do more of the hands-on patient care himself, including the aftercare. And he has his patients stay in post surgical care - I never was transferred to a floor the whole five days I was there after surgery or saw another doctor. Just wanted to mention that not taking insurance is not necessarily an indicator of skill or I would never have gone to my neurosurgeon. When doctors take insurance, they are oftentimes limited to set amounts and sometimes they just don't want to comply with that or deal with the paperwork involved. It does make it difficult though to have them as your doctor.

Blessings,

Shirley

Susan, I don't understand all the different things you said about the insurance. This is how I understand it: Medicaid and medicare are two entirely different programs and, as far as I know, they are called the same thing no matter where you live. Medicaid is for people who can't afford to pay and don't have insurance; if you quality the state picks up the tab. Medicare Part A everybody gets at age 65 at no cost and Medicare Part B is something you pay for when you get 65 and it supplements your health insurance. If you don't sign up for it when you turn 65 there is a penalty paid for every year if you decide you want it later. Medicare Part D is the prescription program for those people who don't have other insurance to pay for their prescriptions. You pay for that too. In my case, I have the Federal Government Health Insurance which is some of the best insurance. But, when you become medicare eligible, that becomes your primary insurance and it pays first. It's true that a lot of doctors don't like to accept Medicare because of the amount of paperwork involved. And there are limits on payments and that's why most people, if they can afford it, buy supplemental insurance. In my case the limits don't affect what I pay....because anything medicare doesn't pay, my supplemental insurance pays....so the doctor gets basically whatever he charges unless he is a "preferred" physician in which case he agrees to prenegotiated rates with the insurance companies. It seems to be mostly a matter who files the paperwork. Sometimes they don't want to be bothered with it because they have to hire extra office help to do. I know the Chiari Institute in New York hasn't been a preferred hospital because, from my conversations with them, they don't want to accept the negotiated rates. And that was one of the reasons I didn't go there when I first got diagnosed. I wasn't medicare eligible at that time and I really didn't want to pay the difference between what they charged and the insurance accepted rates. It's been a couple of years since I talked with them, so I don't know what their policy is now. It's true that some doctors may charge you less when you don't have insurance to help you out and charge you more if you have insurance. But the insurance companies I'm familiar with have negotiated rates for each illness or procedure and that's all they pay; the rest is billed back to the patient unless the doctor chooses to not participate in the preferred program; in which they can charge whatever the market will bear and the patient pays the difference. It doesn't have anything to do with competency in my opinion - it's based on economics; it costs them money to file the paperwork and do followup and they don't want to be bothered with it. There are a lot of doctors in this area who won't file the paperwork for you....if you're lucky they'll wait for you to file with the insurance company and get the money before you pay them. My doctors treat a lot of patients with money so they don't have to take insurance I guess; the same doctor who did one of my surgeries was one of Senator Kennedy's neurosurgeons in this area and my first chiari doctor who wouldn't do the surgery because I was too risky operated on Laura Bush, the president's wife, and a lot of senators and other celebrities. There's no doubt they are competent so, I don't get the connection between insurance and competency.... O.k. enough rambling I guess.

Shirley

I got it Susan; makes sense. I've had a lot of doctors around here who don't take insurance; heck, my dentist don't take my dental insurance either. It's a pain though if you have to file it yourself. So many of the doctors here have consolidated practices and there may be as many as 20 doctors in one practice. I guess the costs to take care of all THAT paperwork would be prohibitive..........

hi Tricia..1st off a HUGE WELCOME TO YOU>

Glad you found a good NS...I had surgery 8/08 with some good results..recovery is different for everyone..

MY NS OPENED the dura (covering of the brain) to make more room ...he used a synthetic patch..no problems with that..the cranium bone he replaced with another synthetic material..no problems there ....

have you been on conquerchiari.org??? tons of info/articles..every surgeon is different in their personal preferences and techniques.....on the above website there are articles about opening the dura or not to open it...I am glad he opened the dura..he explained that just removing the bone was pretty much pointless....one must open the dura to see the tonsils and see just how much room there is there....the goal is to make more room for CSF to freely flow correctly. there are tons of other great articles and such on the site..

best of luck....sorry for typos ..broke my hand 2 days ago!!!!

Lori