Thank you for being here. I wish I found this support earlier. Let me apologize about my grammar and spelling has not been the same since the pipeline was put in place. This is my story: I have had constant headaches for 6 years I never have a day without my painful friend over the years I was told it was TMJ then was told the diabetes was the cause. Many medications were tried but and the painful friend stayed my doctor said I should get a CT scan. In March of last year less than an hour after the scan was done the Doctor had called about my 1 cm annie and was at my doctors office on Monday morning and told I would be in surgery by Thursday morning. None of this happened because the neurosurgeon needed to review the referral. On April fools day I was at the neurosurgeon’s office and he wanted to make the appointment for the surgery but needed a MRA and I needed insurance. With all this done my pipeline stent was place on July 17. What a hard time I had after that I knew my headaches were going to stay but when I woke up they were 10 times worse and I have a facial droop. I lived with the pain for 3 weeks call the office and was told the procedure did not cause the headaches and go see my primary care I called them and said they had no information about my procedure and to take the Tylenol that was prescribed by the surgeon I did and at 4 weeks I went to the ER and they did a CT scan and gave me IV steroids to take down the swelling which did help with the pain the next day the ER called and said my CT scan was adnormal so they needed a MRI I called the neurosurgeon’s nurse and was told to get the MRI and overnight a copy to them there was no answers from them at this point. I was told by the ER doctor and neurosurgeon on call there were 47 blood clots in my brain that was causing headaches, speech, vision and other neurological issues. I saw the neurosurgeon in September for a follow up appointment appointment and he said it was a complication only 10% that have a stent will get and that with this type of diagnosis I was not going to go through this unscathed and I was fine now (still have a droopy eye and crooked smile along with the headache). But to be ready to do this all over again in January because I would need a cerebral angiogram just had that done and was told I have an in-stent narrowing of 75% the neurosurgeon never told me the results but sent his assistant that I will be staying on my plavix and aspirin for 6 months and we will do this agian. I have many questions and maybe someone here can please help.
The one question that I have now is how is this going to change if it narrowed while I was on plavix and aspirin how does it get better?
Welcome to Ben’s Friends.
If your dr has recommended a CT, get it done. I have found that many dr’s and laypeople all have opinions, some educated, some not. I have gone to hospital highly symptomatic and although I have explained my symptoms in great detail this information is often seen as anecdotal. It was not until the medicos have an image to be able to see it that they seem more accepting of my symptoms. I have lost count of the many differing diagnosis I have received over the years, many of them being of no relation to the true cause of my ongoing symptoms. If you have a pre existing condition it is very common for every symptom to be listed under that pre existing title. This way no further investigation is undertaken. TMJ is one of those conditions and with TMJ, it can often resolve itself over time without medical intervention. Many of the symptoms of TMJ can be similar ie Headaches, eye pain, jaw pain.
But as I say “If your dr has recommended a CT, get it done.”
Merl from the Moderator Support Team
Welcome Ckollie! I’m not sure how it’s narrowing, might want to try contacting your neurosurgeon either through their portal or calling the triage nurses. I’ve had many angiograms for the one small ruptured aneurysm and I’ve had 3 coilings for it. I go back in Nov of this year and am hoping the neck has finally closed. One thing I did learn and many members also will tell you to make sure you stay hydrated water or a sports drink was what I had to do and eat a good bit of protein, don’t overdo it
I sent you a Message. I was just wondering a few things.
I have contacted my neurosurgeon but no answers was told to stay on plavix and aspirin and I will get my results in July. I got the report from radiology thru my patient portal. And called the neurosurgeon nurse on January 21 to get more information still waiting for a call back. Was hoping someone on here has heard of this complication. The hydration is a great suggestion I don’t drink enough in the winter. Good Luck in November.
Thanks so much! I’m really hoping that I can go in the “see you in five years” plan. She needs to follow my pituitary lesion every five years.
Try eating more protein…when I ruptured they sent in a dietician and she told me I had to strive for a minimum of 90 grams a day, it’s not easy, use of protein drinks and bars help. The ones I use are 30 grams of protein. The brain requires a lot of protein to heal. My neurosurgeon had me drinking not only my water, but also three sports drinks a day. I’ve learned with the follow up angiograms and coilings that I have to follow the regime for at least six months.
Another thing I’ve noticed is that depending on who reads the MRI, results change. I’ve relied on my Neurosurgeon to explain. Since it’s been a week, try calling your nurse back and please let us know what they’ve said
My situation is similar in that I have a pipeline that has narrowed too…it caused me 3 minor strokes affecting my right side motor skill but I have almost full recovery…god is good. The reason I stroked in my opinion is that we were unaware of the narrowing until after the first stroke. What happened was they weaned me of the plavix and aspirin. They weaned me off two more time after that and I stroked out about 2 months after weaning…they have now said to avoid any further clots that I have to take the blood thinners (plavix 75mg) every other day and a full 325 aspirin daily for LIFE. So in short do not go off blood thinners if your pipeline is narrowing!!! I hope this info might help. God bless❤️
Thanks for sharing I am sorry about having to heal after the strokes but God never gives us more then we can handle so I’ve been reminded. I was beginning to think I was the only one with in-stent narrowing but my doctor was not to concerned he said just stay on plavix and aspirin I’ll recheck it in 6 months. I think I have trust issues when it comes to my health. Trying to stay calm and not be paranoid has be a challenge. You have helped me in so many ways Thanks again.
Good luck with the “see you in 5 years plan” I would want to have follow ups more frequently.
The high protein is a great suggestion I am going to try it for the next 6 months and see if the narrowing changes and I am also going to drink more water not sure about the sports drinks I have to watch my salt intake but will look for sodium free at my stores.
I called the nurse after 3 days and again on Monday still no call back. I am going to try a new approach and send a e-mail it might be faster.
I will keep you posted when I get any answers.
In the beginning I had lots of follow ups. The five year plan is just for the pituitary adenoma to make sure it isn’t growing.