posted
I have this unbreakable CONSTANT headache just on the right side of my head. It has been a year now.
The whole right side of my face and neck is tight, the right side of my tongue goes numb, right side of face goes numb, it's painful. It moves around. I can't put my head on my pillow.
My neurologist would approve the Spect scan, but is it worth it considering my symptoms? He does not believe in chronic lyme. Is it worth it if the radiologist are not specialized in lyme? What would be the advantages? Do you think it would come back normal?
I don't have considerable memory problems, just word finding problems, and pain, abnormal migraine / seizure like symptoms. Again, the pain is constant, it doesn't go away.
I have responded the most to taking baby aspirin on a daily basis. This makes me think that blood and oxygen are not getting to my brain.
I did take a 7 day course of steroids that did help the headache.
I have taken 3 months pulsing biaxin and omnicef and 3 months doxy. I feel like the doxy makes it worse because it increases head pressure.
These symptoms are getting worse and it is scary.
Posts: 33 | From Chicago | Registered: May 2008
| IP: Logged |
posted
I would like to know what folks say about this. My LLMD wanted a SPECT scan, as well, for similar symptoms. (I have more trouble with cognitive/memory issues, too.) It is really expensive, around $8000 of which we would have to pay about $3000. What will it show that an MRI or CT scan won't ? LLMD also wanted it done at a hospital in his area and didn't think our in-network hospital would do a good job.
Posts: 41 | From SC | Registered: Jan 2009
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I would have to ask the doctor exactly what he would be looking for. These symptoms are very common with LD, so why does he feel that it is a necessary test? I would think that in time with treatment these symptoms would disappear. However, if he is considering another diagnosis, then it would make sense to do the test.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
posted
My lyme doctor requests SPECT scans for patients (like me at the time) who had a high degree of memory problems. I think the headaches, migraines, seizures which I also had (still have to some degree) were not assessed with the SPECT.
To my understanding.
I think the SPECT measures function whereas the CAT and MRI measure structure.
So it is helpful to get a SPECT to detect hypo and hyper perfusion of blood flow into certain regions of the brain which would be consistent with lyme.
Overall, I think it would help the doctors understanding by adding another piece of the total picture of the patient.
The thing is, it is not an exact science as far as I know.
I was lucky that the $3,000 SPECT was covered by my insurance at the time.
posted
I am writing from Canada in which we do not have to pay for the SPECT directly. (trust me, we pay it thru our income taxes). So I had the test, because the doctor ordered it and it did not cost me out of pocket
I did have an abnormal SPECT which is the test that you need to determine if your blood flow is at flowing properly.
So what is the advantage of having of SPECT
- Another confirmation that you have Lyme. A great majority of Lymies have abnormal SPECTS
- The amount of decrease blood flow, may determine a different treatment method.
The disadvantage of the SPECT is the cost and the fact that you are introducing dye into your body. (small amounts, but none the less, dye)
Alot of literature suggest that this decreased blood flows improves with treatment. My headaches have improved since 12 months of treatment
So I would probably keep on treating and see if the headaches go away. It is a nice to have test, but not mandatory ( in my opinion) ( and assuming that you have to pay for it)
Tony
-------------------- Dx 3/2008 Pos. WB and Bart- igenex Levequin 500 mg March 2008 Amox 6000 mg - May 2008 Doxy 400 mg - June - oct Biaxin and Flagly 1000 each, oct-dec Zitro, Malarone and Flagly Jan - feb Remission for 6 months Relapse Sept 2009 zithro/flagyl Posts: 130 | From canada | Registered: Mar 2008
| IP: Logged |
posted
My Husband had chronic head pressure for almost 2 years before he finally saw a LLMD-based on his symptoms, she had him get a Spect, and sure enough he had severe brain encephalitis, caused by LD.
His previous MRI's and CT Scans showed nothing abnormal, except for a few white spots on the brain on the MRI he had done. The Encephalitis was never seen on any of these other tests.
He is now on IV Rocephin, which is supposed to be the best ABX to treat brain LD. No changes in his head pressure yet, but he is hoping that changes in the near future.
If your insurance covers it,(ours did) it might not hurt to have a Spect done, just to rule out encephalitis.
Good luck in whatever you decide...
Posts: 64 | From rock tavern ,new york | Registered: Aug 2008
| IP: Logged |
posted
I never had a Spect scan, but I have had those same symptoms, and they're mostly gone now. If I had to choose between paying for the scan or treatment, I'd spend the money on treatment.
just my opinion.
Patti
Posts: 975 | From California | Registered: Apr 2007
| IP: Logged |
posted
Can I have it done anywhere? Does is need a radiologist knowledgeble with Lyme to do the test?
Posts: 33 | From Chicago | Registered: May 2008
| IP: Logged |
posted
I had a spect scan after 1 yr of bicillin and oral abx , but my ears and vision are not getting better. My scan was done in NYC, and they said it is normal, and they are the ones who are experts at reading this for lymies. SO, I guess I will not be needing any IV abx, since my spect scan is normal. Jenin
Posts: 455 | From Maryland | Registered: Jul 2007
| IP: Logged |
posted
My Hubby's LLMD ordered his Spect for him-he had to have it done in NYC at Columbia Medical Center. I think based on his symptoms, and with the negative MRI's he had in the past, she must have thought that a Spect Scan would show in more detail any other types of problems going on in the brain possibly caused by LD-and obviously, it did.
My Hubby never thought for a minute he had brain swelling prior to having the Spect Scan. He was pretty shaken when he received the results. Shorly after that, he started the IV Rocephin.
Even if your Neurologist doesn't believe in LD (most don't), tell him you want the scan done anyway, especially if he's willing to order one for you. You can always take your scan results to your LLMD, and let him interpret the results.
Have you had any MRI's(with/without contrast)done? These tests may rule out any major problems first before you go through the Spect Scan. If they come back negative, then you might want to pursue further testing. I would.
My Hubby had had major C-spine surgery in July 07', and it was 3 weeks after that that he developed this head pressure. Even though he's had a positive Spect done, he's currently in the process of having an EEG, Spinal tap, and Cervical MRI done by his Neurologist to rule out Spinal fluid leakage caused by the surgery that might be causing his head problems.
He's about 100% certain that this is LD, but still wants to rule out everything else.
Posts: 64 | From rock tavern ,new york | Registered: Aug 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic