NIH Study Still On

[gunflint]

It looks like the CM/SM study will continue at NIH. I just returned from my annual check up. No changes for me as far as my syrinx is concerned. It's the same size as it was when we started. I still believe that this is good news. Was the decompression a success? There is really no way to tell at this point. It didn't shrink but it's not growing either. I will be interested in finding out what the "shrinkage" success rate is for patients with a Chiari type 0 diagnosis.

I did find out that the NIH will be ending several studies but I believe most of those are related to drug trials.

[razzle]

Gunflint , I had my surgery in 1999 and now to this day my syrinx is the same size , no shrinkage , no growth so thats ok with me...would be nice if it had gotten smaller but life goes on...

[gunflint]

razzle I sent you a pm.

[rdm73]

I had my lamectomy done in Jan 2011, at NIH, and I'm part of the research study. The syrnix did initially shrink and I'll soon be checked again for its current status. I was optomistic that I would experience symptom improvement, or at least stop the progression of any symtoms. Not yet, as the nerve pain is as bad or worse than ever. And, I keep having new nagging symptoms. For example...drop foot; increased loss of sensation; severe headaches; muscle spasms; stomach and back cramps (ouch); leg and foot swelling, so severe that my skin is cracking; and sleep problems. I'm spending the night at the local hospital tonight for a sleep study.

I expect to return to NIH next month for my annual MRI and exam. I'm afraid that Dr. Heiss will be getting a bad report from my Neurologist and from me. I wonder what new course, if any, will be recommended. Clearly, my condition continues to go down hill. I'm a fighter, but everyday constant pain sure does wear a person down. I'm ready for a new attack!!

Pop

[gunflint]

I'm sorry to hear that your having increased symptoms. I am as well but not nearly as dramatic as yours. I'm also glad to hear that your working with a local Neurologist. All I have is my GP and Dr. Heiss. It took me a while to realize my relationship with NIH and Dr. Heiss. It's more of a lab rat /scientist relationship than a Doctor/ patient. At first it seems kind of cold but then when you think of the real reason we are there, it is to help future travelers down our path. I'm just glad that we still have some very important options left. Good luck.

P.S. I've never been to a facility that didn't have music in the MRI. You'd think that they could swing that. Or maybe accept a set up from a patient.

[rdm73]

Initially, I was so impressed by the amount of attention that I received from the NIH neuro-surgeons. Dr. Heiss even visited me after surgery at NIH on a Sunday afternoon. He stuck around for a couple of hours, watching an old movie with me. Then, several months later, I had a complication (spinal fluid was leaking around the patch). I developed a huge sack of fluid over my wound. Dr. Heiss sat on the edge of the hospital bed for several hours removing the sack of fluid one syringe at a time. I really felt comfortable with him after that. I didn't want anyone's opinion about treatment other than Dr. Heiss. But, as time passed and he obviously had more and more patients in the study, that very personal touch disappeared and I was sort of pushed off onto his collegues.

I understand why, but I thought it was important to have someone familiar with MY CASE without reading the record and asking the same old questions. So, I found the local Neurologist with the best reputation. Best move I ever made. I've turned complete control of my case over to him. With his blessing, I'll continue to participate in the study. The difference being that the recommendations made by Dr. Heiss and his staff are ONLY recommendations and subject to review and consideration by my Neurologist. It's a lot more comfortable having that personal touch when it comes to something this important.

Best of luck with your journey and thanks for the reply. For some reason, I have not had much luck with replies on this site. My last post resulting in an unexpected beat down. LOL-I'm a big boy and can handle an occasional beat down.

Pop

[reedy]

I think Dr Heiss is a freakin' genius. I've posted extensively on him in other threads. Do a search on Heiss and you'll see.

I've had 2 ops from him. Follow up visits have been brief, but very, very perceptive and intelligent comments from him.

[AKShel]

I'm quite happy with the NIH study and Dr. Heiss. I joined the study last year and received a VP shunt; it essentially gave me back cognatively what complications from a local laminectomy took away (along with MS). It was so awesome to feel like myself again. My 3 month check showed no change in my syrinx (C4-T8) and I head back for my annual in April.

I work with my local neurologist and feel that it's important to have someone close for all of us. I feel that the more information and education I have about my condition(s), the better choices I can make for the best possible care for me. The more experts who can help, the better! Ultimately, we should be making our own choices.

I was diagnosed with breast cancer in November and just had a double mastectomy this month; Dr. Heiss, my neuro, GP and surgeon all communicated. Cancer surgery was successful and some of my daily symptoms have become more bothersome. I'm counting on my medical team and support system (family and friends) to see me through this....very glad of the NIH study and resources (Dr. Heiss put me in touch with the NIH MS team even though there wasn't a study I qualified for)

Our tax dollars well spent, I believe. NIH is a great resource!

[Dcuster]

Hi I can't do the NIH study but I am going to do the Duke CM genetic's study with my identical twin. They called today and we will be doing it next week-end sometime so I will do a small part. NIH said I had to much surgery and damage already to do there study.

[reedy]

Wow! you are so lucky to have an identical twin! And thanks for volunteering to be in the study, both of you, as that will really help advance knowledge on our condition.
What a good thing you are doing with what is otherwise not such a good situation for you.

[Dcuster]

Hi reedy, yes I am kind of excited to get to contribute in this study. Jeff will be here on Friday from Duke so we will see how it goes. The thing I am most excited about is, it's been over 10 years and I still have not found out rather or not I have CM. I know I have SM, had a shunt placed in 2003 for a rather fat syrinx it was 1.1 cm wide. My twin had a neck only MRI done and the radiologist mention low lying tonsils. To this day she has not had a full MRI of her spin to find out if she has a syrinx. She had one of the nerve stimulator's put in back several years ago and they could not do an MRI because of it. Now she has the machine out and can have one but now she can't get a Dr to order a whole MRI. I tell you the Dr's around here stink. But at least doing this study we should both find out rather or not we do in fact have CM finally. My twin and I tease and say we are going to right a book about how crazy (mentally) the Neuro Dr's really are. That it's not the patients that are crazy lol it's really the Dr's. anyways just joking and yes we are glad we get to do a small part to help out in the future for all the newbies that will come along after us.

[bettyj]

Hi I can't do the NIH study but I am going to do the Duke CM genetic's study with my identical twin. They called today and we will be doing it next week-end sometime so I will do a small part. NIH said I had to much surgery and damage already to do there study.

Wow, I am an identical twin too, they told me I also had to much damage in the area to be considered. What are we to do??

[gtfamily]

For those in the NIH study - particularly those who did not get operated on - are you happy that you participated? I just learned today that I have been accepted into the study and don't see a reason not to participate. I don't see myself as a candidate for surgery in the foreseeable future based on what my Boston docs have said, but figure this is a win/win for all. For those of you in the study, I would like to know your experience with logistics. They told me I would typically need to be there for 2-3 days, has that been your experience? Also, has it been easy to work with the travel people and figure out flights that have been convenient, non-stops where possible etc? They say you do not need to rent a car - is that true?

Thanks for any info you can provide.

[gunflint]

Although I did have surgery I will take a shot at answering some of your questions. I don't know if happy is the correct term however I feel very lucky to have access to one of the top neurosurgeons specializing in SM in the country if not the world. Participating in the study is more than what it means to us. It has more to do with helping SM patients in the future. The first time I was scheduled for 3 days but got out after 2. They were going to do a Lumbar Puncture test ( I forget the medical term) but determined that I was going to have surgery either way so it wasn't needed. Everyone connected with NIH is extremely helpful and professional. There are airport shuttles to and from all the airports so you won't need a car. The only glitches I have had is timing airport arrivals and departures with appointment times. I recommend getting the earliest flight in to DC as possible and scheduling any first day procedures as late as possible. On departure day do just the opposite. Good Luck!

[reedy]

I second everything Gunflint said.
I'd also emphasize that it is certainly a good idea to participate even if you don't think you will be doing surgery. It gives legacy to your outcomes, helping people after us. I have huge confidence in Dr Heiss - his insights are the best. I think he's conservative about surgery, so if he agrees with your assessment of no surgery, then you are on solid ground. He also respects the patient's opinion, so you won't get pushed into surgery if you are not ready.

If you are there around April 24th I'll be there too and will say hi!